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No Longer Naive in the Ways of The Beast
After having lived for years with ME/CFS, Jody Smith learned there's more to this beast of an illness than she realized, and that what might help one person may not help others ...
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Old KCL article for clinicians, edit: actually it's still on their stie.

Discussion in 'Latest ME/CFS Research' started by Esther12, Mar 12, 2012.

  1. Esther12

    Esther12 Senior Member

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    edit - it is still on-line, but now here: http://www.kcl.ac.uk/innovation/groups/projects/cfs/health/index.aspx

    I just got confused... Ignore me! Original post:

    This is no longer on-line here: http://www.kcl.ac.uk/projects/cfs/health/

    So I thought I should put a copy up online, in case it's ever of interest to others.

    There was also an 'article for patients'. I'm not sure if that's online anywhere either.

    They've got new stuff up now, but I've yet to read it.


    CFS and the facts of life - an article for clinicians



    Much has been made of the fact that when badly "administered", Cognitive Behavioural Therapy can be less than helpful in the management of Chronic Fatigue Syndrome. Indeed, despite now very strong evidence (see the recent JAMA review) that CBT is an effective intervention, there was a recent patient conducted survey which showed a high degree of dissatisfaction with implementation of this treatment. However, we professionals would like to minimise this finding, we cannot ignore the fact that there is a very real problem. It would seem that for some sufferers, the key ingredient of best practice CBT - collaboration - is missing. The experience of this group of dissatisfied customers is that of treatment as rote prescription uniformly administered, a one sided exhortation to do more, exercise, sleep less. Coupled with this is the perception of a lack of empathy for very real pain, distress and disability. The problem may well be that some of our treatments are too evidence based. Thoroughly convinced as were are by the evidence, we all too easily fall into a repetitive giving of advice, encouraging the patient to do the right, evidence based thing - do more, exercise, sleep less. What this fails to address as an approach, are the very real reasons why a client may be sceptical or anxious; their wariness of yet more professional advice; the complex reasons why the imposition of a routine on their current life feels nigh on impossible. Advice is only useful if tailored, if presented with an awareness of the context in which it is to be applied. The factors that maintain and perpetuate pain, fatigue and disability are manifold, and each client will have a unique set of factors in play. Depression, loss, over-working, sleep disturbance, high self expectations, exhausting interpersonal strife, litigation, illness, work and family responsibilities, poverty, hopelessness-the list is of course endless. But unless we have some awareness of the client's life experience, we cannot, but in the most straightforward cases, proceed to give advice. Evidence based practice is not enough - our practice must also be based in empathy, understanding, alliance and respect. Although there are no shortcuts to achieving these, an awareness of some of the recurrent issues and the unique nuances of practice involved in working with CFS may aid the practitioner in better understanding and working with these clients.

    "I can't get better if I have to prove that I am ill"

    Chronic Fatigue Syndrome is constantly having to prove itself. It is hard to imagine how anyone confronted with a sufferer (an awful, but accurate term) of CFS could fail to be convinced by the reality of their symptoms. However our society seems to constantly need to remind itself that this suffering is real. Questions in the house in the eighties, the Royal College of Physicians and Psychiatrists report in the nineties, and now this most recent government report, each repeating the same point -real illness, real people, real suffering. Of course the political debate is only a reflection of the struggle of individuals to be taken seriously. Most of the people I see have had to fight long and hard to get a diagnoses and referral, and typically will have encountered numerous health professionals who will have been quite explicit in there disbelief. Part of the blame can be directed, and often is, at Descartes. From him, and his enlightenment descendants, we inherit the idea of the person as an animated corpse, a purely material body inhabited and animated by a non-physical, abstract mind/soul. As a framework for explaining illness this model has serious limitations, particularly when confronted by illnesses which have no clear physical origin. Within the dualist framework, if there is nothing wrong physically then there is only one other place to look - in your mind. Add a dash of Freud, and we have the completely unsubstantiated, but amazingly pervasive notion that medically unexplained physical symptoms must be the expression of unconscious psychological distress. All we then need do is convince the patient that they are really depressed/personality disordered and things will move along nicely. I have seen many casualties of that approach. However Descartes cannot take all the blame. Another kind of dualism is also at work here, what we might call cause/cure dualism. A great majority of us, patients and professional alike, are infected with a surprisingly simplistic notion of disease. If something is wrong with us, we expect that a doctor will find the cause. Once the cause has been found the doctor will then give us the cure - or tell us to wait around a few years until one is found. Cause-illness-cure. Again, this framework suffices in daily life, but anyone who has brushed with conditions more serious or chronic than flu will know that this is not how illness works. Take diabetes or heart disease. In each of these a complex interplay of factors - genetics, personality, life style, life events to name a few - may lead to some predisposing vulnerability to develop illness. Then certain key events - stress, infections, more life events - may precipitate the onset of the illness. Yet another set of factors - constitution, treatment, management, ones ability to comply with - will affect the prognosis. Few diseases are simply caused or cured. Chronic Fatigue Syndrome is no different from any other disease. A certain set of factors make one more likely to get it. Another set of will effect the prognosis. It differs from other diseases only to the degree where we cannot detail every physiological process at work, but this is true to some extent of most of them. However, Chronic Fatigue Syndrome differs from others diseases in one crucial way, it contains a perpetuating ingredient that none other contains - disbelief. I have seen the effect of this in both children and adults and it is devastating. Imagine being burdened with literary crippling pain and exhaustion, for years, to be told that there is really nothing wrong with you, by the people you have turned to for help and support. As one Canadian academic put it in the title of a paper - "how can I get well if I have to prove that I am ill?"

    Hearing the Story

    The perpetual battle for validation that most sufferers of CFS are caught in is literally, physiologically exhausting, depressing and dispiriting. It affects the course of the illness. No other sufferer of chronic illness has to fight this bizarre battle to have the facts that they live with every day legitimized by a hostile authority. As long as CFS has to prove itself, that much longer will sufferers suffer. As therapists, our first and last concern is to take the suffering of clients seriously. All this involves is listening. As yet another health professional recently come in on a unfolding illness narrative, our first duty is to find out the story so far. This involves nothing more than listening, but it is surprising how novel an intervention this is for many clients. We must be particularly aware of previous experience of expert advice, often contradictory and at odds with our own evidence based wisdom. Our first concern then is to get to know the client, to show them that we want to hear their story. Until we know who we are talking to, we should refrain from advice, however well intentioned. As a therapist, my first question is to ask what physical symptoms have brought them to me. I do not enter into debate about whether these symptoms are real or not. Patently they are real, and by showing my interest and belief, I circumvent the need for them to prove themselves as ill to me. Thus we get to hear the real story. Through their own experience, every client will be managing as well as they currently can. In suggesting that they manage things differently, we are in danger of implying they are not managing well enough. Rather we must position ourselves alongside the client. As an ally, aware of the stresses and strains of their life, we can support the client in dealing with them. Framed thus, our new suggestions are not contradictions, but additional strategies, worked out with the client, new ways of helping them deal with whatever they have to deal with. This therapeutic alliance can only be built on trust and understanding, and our first few sessions should be directed to building this, not blanket prescription. We must listen.

    Roadblocks on the Road to Recovery

    Having listened, our joint work is then to help the client to map and travel a way out of their current situation. No one wants to be this ill, to feel this bad. They have tried to pull themselves together, they have tried to pull their socks up. They have paced and exercised and rested. They have told themselves it's just depression, diet, imbalanced Chi. None of it has helped. Our duty as therapists is to help them find a workable, comfortable way forward, a pace of gradual and sustainable change. Rehabilitation in short. However on the road to recovery, there are many blocks and speed bumps - as with any condition. With some awareness of the kind of blocks particular to CFS, we can better help clients overcome them.

    Mood

    CFS is not depression, they have different neurochemical profiles, "feel" very different in clinical work. Which is not to say that people with CFS don't get depressed- indeed people with CFS would seem statistically more prone to experience depression - but the conditions remain distinct. Depression that has progressed to the extent where it impedes working on recovery (for which the client needs a fair degree of self-motivation), certainly needs to be addressed independently, and there is a good argument for anti-depressants in these cases. However, the depression associated with CFS - and most clients are clear that their depression is secondary to their fatigue - is often of a particular kind, principally characterised by loss, frustration, anxiety and hopelessness.

    Loss

    Loss is an underestimated part of CFS. Many of the roles by which we define ourselves will have been profoundly altered, or lost entirely to CFS. Work roles and social positions, our place in the family and our relationships with friends and partners, parents and children - none remain unaltered. This is particularly marked in children, where the automatic network of school friends and peers often disappears overnight, leaving them isolated and unsupported. Perhaps more devastating is loss of time. Many sufferers in twenties and thirties will have spent much or most of their adult lives trying to manage an illness, at the expense of the career building and relationship formation that most of us devote these years too. There is also loss of future - the career and personal goals that structure most of our life journeys are lost in the blank horizon of ongoing illness. Many sufferers complain of their lack of ability to plan for the next day, the next week, let alone planning and building a future. Inevitably then, part of the work of coping with CFS is the work of mourning - mourning what has been lost and what can never be. Hopelessness and frustration are key here too. Wanting but not being able to have - a future, a career, a family, whatever - a desire for the unattainable is the essence of frustration, particularly when you know you could get it, if only you felt better. This frustration easily gives way to helplessness and hopelessness. It is part of our work not only to help a proper acknowledgment of loss, but also to help in building a vision of a realistic and attainable future. Key to this, is the installation of a sense of hope, a maintenance, on the part of the therapist, of a certain optimism that things can change for the better. Many clients have lost this, or been explicitly told there is nothing they can do but wait to get better. Encouraging a sense of hope and control is crucial to moving on into recovery.

    Fear

    Many clients live in a state of precarious status quo. They will often talk in terms of a tightly rationed energy budget. They have so much energy to divide between, say, shopping, keeping on top of the housework and looking after their family. Any increase in expenditure in one area takes precious reserves from another. Unexpected demands - life events, applying for benefits, other illness, relationship problems - can wipe out existing reserves at a stroke. Only by very carefully pacing themselves can they maintain their current commitments. I recently suggested to a client, whose main demands were looking after her mother and her pets, that she add a five minute walk to her routine. She seemed hesitant, worried. Exploring this it became clear that for her a five minute walk was energy wasted, could potentially compromise her ability to look after her dependents. Ultimately my five minute walk was for her a vision of herself as bedridden, her mother in a home and the animals taken away. Only by careful exploration of these fears, and real negotiated, achievable goals could this client move on. I may think I know that a five minute walk will do her good, she doesn't.

    Letting go of support

    Many clients have built up an infrastructure of support, a coping network, to help them manage their illness. One of my clients had, over the years, established a rota of friends and volunteers, who visited two or three times daily to help her with meals, washing, housework etc. Mostly she was in a wheelchair, and walked only with crutches. She wore a neck-collar to support her head. For her, the road to recovery involved the gradual dropping of each one of these props. To put it in her words, she had to "wean herself of" her network of support, her chair, her crutches, her collar. Each new reduction in her dependence was a step into the unknown. This required enormous courage and persistence. Each move back into (her words) "real life" was potentially that step too far that would send her into relapse. The spectre of the bed and the wheelchair is never far from the mind of many sufferers. This weaning is not quick. Two years later we carry on the journey, though her strides are that much firmer and more confident. Therapists used to working with anxiety must acquaint themselves with a far slower pace of change, much less spectacular progress. They must acquire patience, and lower their own unrealistic expectations of speedy recovery. In short, we must fall into pace with the client.

    People who do too much

    It is here that we enter the territory of client's self expectations. It is not uncommon to find clients whose sole reserve of energy is devoted to doing their work, housework, family maintenance or study to the utmost of their strained ability. Barely keeping their head above water, working far beyond the call of duty, they are often in a state of constant tension and exhaustion. As with the client mentioned above, this state feels dangerously precarious, any increased demand threatens their ability to cope with everything else. Rest, relaxation and enjoyment are the fuel that keep most of our fires burning. However for many sufferers, these three seem like luxuries they can ill afford. Guilt can play a strong part in maintaining this pattern. My suggestion to one overworked mother/housewife that she take time out during the day for herself met with strong reluctance. Exploring this unearthed what the cognitive therapist Christine Padesky would call a rule for living: "I can only rest if I've done everything that I need to for everyone else." My suggestion to prioritize herself sounded positively immoral, an encouragement to be "selfish". "Should thinking" is a common habit here - I should be able to look after the kids, do all the ironing, cook all the meals, cope with everything and then some, I shouldBy blanketly encouraging clients to do more, we are in danger of playing into this belief system, of encouraging yet more "me last" behaviour. Encouraging clients to dare to rest, to enjoy, to relax, to question and drop their high self standards is often a far more valuable therapeutic investment. One client of mine, a teacher, described her own standards as being like "having a school inspector in my head, constantly telling me I wasn't doing well enough". It was part of our work together to take this inspector outside and shoot him. This is closely linked to perfectionism. The trap of perfectionism was graphically described by another client: "I have such high standards for doing the hoovering in my house, that I haven't been able to do it for four years." In the words of David Burns, we need to encourage our clients to "dare to be average" - to not get or expect an A plus, to not hoover for England. In doing so they realise, paradoxically, that by lowering their standards, they achieve more.

    Looking after the Environment

    One of the potential blindspots of cognitive behavioural therapy is its lack of environmental awareness. By its emphasis on how it is not so much the situation, as the individuals interpretation of the situation that is the problem, we easily lose sight of what some analysts call The Real - the insurmountable facts of living that remain no matter how we look at them. Telling a mother in an abusive relationship, on benefits, living on a bleak estate, that her problems all lie in her interpretation of things is not only useless, it is wrong. Unless we help her change her circumstances, little else is going to change. By locating the problem in the individual and their interpretations, we also easily forget the network of relationships in which they live their lives and how this can effect their wellbeing. This was dramatically illustrated by one client. For twelve sessions, she had come along with her partner, who was apparently very supportive, an together they had done everything right. Pacing, consistency, sleep management, graded increases in activity were all done by the book. But she wasn't any better. She then missed the next session, and I didn't hear from her for a month. I then got a phonecall: "I've left my partner. I don't have a clue what I'm doing or what I'm going to do, I'm scared as hell, but I'm not fatigued anymore." This change persisted, and what emerged in subsequent sessions was that for years she had felt stuck in a relationship that was emotionally and physically draining, but that she felt too ill to leave. Of course this is an extreme case, but it alerts us to another factor we easily miss out of our fatigue equation. Unless clients feel they can trust us, and unless we explore, without prying, their network of relationships, their interpersonal styles, we will miss vital information. A famous seventies self help book was entitled "Women who love too much", and however cliched the concept may seem, being stuck in a relationship where the support is unreciprocal has real physical effects. Of course this applies to men too. Empathy is not enough. It is all well and good to say, oh you poor thing, but as long as we remain there, we are only encouraging them to be victims of their circumstance. Empowering them to make changes, not in necessarily leaving their relationships, but in changing their own behaviour and expectations within it, is the only way that change will happen. Ideally we are also working with their families or partners, with those others who have become involved, seeing them all through the unsettling process of change.

    Home Maintenance

    If we have been ill for a while, and we are responsible for the daily running of the house, it is amazing how quickly things pile up. The washing, the dusting, the washing up, the bills, the work commitments, the social obligations Imagine then having been ill for several years. Many clients describe living in an environment which is literally out of control. Having not been able to keep order for some time, order has gone out of the window. The ensuing chaos is so daunting, so out of proportion to their current ability to manage it, that it becomes yet worse. This of course produces yet more exhaustion - a mountain of washing up is much more daunting than one mornings teacups. Consequently many clients live in environments that are actual embodiments of their inability to cope, an inescapable reminder of their disability. I have spent many sessions painstakingly going through the categories of household objects, their potential for ordering, trashing, recycling - gradually over months bringing some workable order back to the environment they live in every day. Like Maslow's hierarchy of needs reminds us, unless we begin with the basics of comfortable and restful shelter, we cannot proceed to fulfil our more lofty desires.

    Work and Money

    And this brings us to the subject of money. The British are famously even more shy of asking about money than they are about sex, but unless we do, we are missing a crucial factor which is often implicated in the maintenance of disability. Many clients are, to put it at its most stark, getting money to be ill - from the state or from private insurance. Currently in Britain it is very difficult to make a smooth transition out of benefit dependence, to "wean oneself of it". If one is deemed fit for work, benefits are abruptly stopped. Of course the only way to become fit for work, is to gradually ease oneself back into it, but often, as soon as a first step is made, the whole benefit is threatened. This is the famous benefit trap, and it is as real for CFS sufferers as for any other unemployed person. As professionals the best that we can do is liaise with employers, insurers and the state, acting as advocates for the client, trying to ensure as much as possible that their return to work, if such is their goal, is as easy as possible. Returning to work is often the biggest step a client can take. Taking the decision to come of benefits, to officially declare oneself well and to return, as it were, to the frontline, is probably one of the biggest risks they will ever have taken. Often they will choose a very different career path, indeed a very different life path, to the one they were on prior to illness. Having a long time with very little energy, focuses people minds on how they wish to spend it in a way that most of us will never know. This often leads to a re-prioritizing of life goals - not uncommon is a move from financial and status driven ambitions, into more personal and spiritual ones.

    Problem Solving

    Career advisor, life coach, insurance and DSS liaison officer, grief councillor, marriage guidance councillor, family therapist, motivational interviewer, time and motion expert, domestic scientist, financial advisor. There is much more to treating CFS than graded activity and sleep management. However these various roles share a common trait when done well - an ability to problem solve. The blocks and impediments to recovery in CFS will not go away on their own, unless one is very lucky. Be they interpersonal, physical, emotional, social or financial, they must be got over or round. We have to develop with the clients a precise, detailed understanding of their current situation, then be able to explore and negotiate with them possible routes forward. Above all we must remain patient and optimistic, be prepared to fail and start again. If it was really so easy to get over, the client wouldn't be stuck.

    Conclusion

    Chronic Fatigue Syndrome, like any other chronic illness, is a condition that gradually co-opts more and more aspects of the client's life. Without a detailed awareness of how the illness has woven itself into the daily texture of the clients existence, we cannot really help them. Evidence based practice must be coupled with a client centred awareness of how that evidence is best applied in any particular case. Without this awareness, without empathy, trust, understanding and respect, all the evidence in the world will not help us work with clients or help them to benefit from the results of our research based knowledge.

    Author: Vincent Deary
  2. Enid

    Enid Senior Member

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    I find this quite strange Esther - it's addressed to fellow physicians presumably as a long overdue "rethink" especially now the extent of the pathologies are known. We know it all anyway and rely on research findings/treatments from medical specialists to improve health - where is the evidence based practice spoken of here - where are the evidence based findings of the efficacy of eg. anti-virals, broad testing and diagnoses of virals, bacterial infections and treatments already in use.

    :confused:
  3. Esther12

    Esther12 Senior Member

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    I liked this bit too:

    I think that this is actually quite old. 5 years or more?

    I don't know what anti-virals etc you mean, but I'm not aware of any really good evidence for the efficacy of them. I tend to read the more psychological based research, but thought that I would have heard of any really clear evidence.
  4. Esther12

    Esther12 Senior Member

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    I might as well put the Information For Patients up to, just as a resource. It's not particularly worth reading through imo, but some people might be interested. Also, google didn't seem to pick up some bits I was searching for on their site, so it might be a more easily searchable resource here.

    From here: http://www.kcl.ac.uk/innovation/groups/projects/cfs/patients/history.aspx
  5. Esther12

    Esther12 Senior Member

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    History of CFS/ME

    historyCFS has only recently been recognized as a distinct condition by the medical community. A recent report by the Royal College of physicians officially proclaimed it "real" in the sense that they recognize a cluster of symptoms which is distinguishable from any other disease. They stated that this symptom cluster appeared to have no one cause, with both physical and psychological problems playing a part in the condition.
    CFS has officially replaced the term M.E. (Myalgic Encephalomyelitis), because there is no consistent evidence for the swelling of nervous tissue that this name implies. It has also replaced the term Post Viral Fatigue Syndrome, as the symptoms are not always associated with an initial viral infection.

    This marks the most recent stage in a long debate within the medical community and society at large concerning the nature of what is now called (in Britain anyway) CFS. Neither the condition or the debate are new.

    At the end of the last century, doctors were holding a similar debate over a condition called Neurasthenia. This was characterized by fatigue and muscle weakness, leaving sufferers able to do very little. There was no medical consensus around cause or cure. Some doctors advocated rest, others exercise. Some said it particularly affected successful, active businessmen, professionals, even doctors. Others said it was mainly an illness of females, and was largely "all in the mind".

    Anyone familiar with the recent debate around CFS will recognize this situation. The puzzled and divided medics; the distressed sufferer being given conflicting advice; the cartoon stereotypes of an unsympathetic media.

    Later into this century, the medical community coined the term "work shyness". This more obviously judgmental label was mainly stuck on the working classes. Again this class difference in diagnoses is persistent today. Community studies have shown that people with the symptoms of CFS occur equally across all classes, however those who actually get a diagnoses of ME or CFS and referral for any kind of treatment, are more likely to be middle class. Many sufferers are aware of having had to fight for their condition to be taken seriously. It would appear that the middle class are better equipped to access and articulate the information necessary for such a fight.

    There appears to have been a relative period of quiet over this disorder mid century. It comes to media prominence again in the eighties, under two names - ME and Yuppie Flu. The latter was the name coined by a habitually unsympathetic media which had decided that sufferers were high flyers who could no longer keep up the fast, eighties, Thatcherite pace, who had burned out under pressure.

    Again the medical community were split. There were those who believed it was a physical condition, those who believed it was psychological. This is such a traditional divide - the mind from the body - that, until recently, few have questioned it. As we shall see later, this division is not necessarily true or useful.

    In the physical camp there have been a variety of theories. Some have believed it to be an immunological deficiency (in parts of America it is labelled CFIDS, Chronic Fatigue and Immune Deficiency Disorder); a muscle tissue disorder; a central and\or peripheral nervous system disorder and, most commonly, a persistent virus.

    In the psychological camp the main theory was that CFS was an unacknowledged depression. This had the unfortunate affect of reinforcing that other media fiction - the "all in the mind" illness. This carries the connotation that the condition is less real or even pretended, together with the implication of the very British "pull yourself together" school of treatment.

    Not surprisingly most sufferers sided themselves with the physical camp. Throughout the eighties and into the nineties the debate became more and more polarized and less useful. As no one could agree what was going on in CFS, there was no consistent approach to treatment, and an increasing sense of hopelessness around the possibility of change or cure.

    However recently things have changed somewhat. The medical community has begun to see that so called physical and psychological factors cannot be readily separated in any condition - be it cancer or depression - and there has been an increased focus on the management of CFS. This has produced research showing that adopting a consistent approach to managing the condition can produce a substantial improvement in the majority of sufferers. The focus has shifted from looking for a single cause and a "magic bullet" cure, to looking at how a variety of factors can cause, maintain and change the condition. Most importantly, there is now a climate of hope around CFS, which was unthinkable just a few years ago.

    Author: Vincent Deary

    What causes fatigue?

    Before attempting to present a model of CFS, let us look at some of the factors that a variety of research has shown can play a part in this condition. We will look at this in three sections. Factors that tend to keep CFS going, factors that start it off and factors that make you more likely to get it in the first place.

    First though, a word of caution. All, some or none of the information below may apply to you. It doesn't actually matter. If it helps you too make some sense of your condition, fair enough. If it doesn't, ignore it. The most important part of this web site is the self help. We know this works in the majority of cases. If the below means nothing to you, then proceed to the self help section and try it anyway.

    Who gets fatigue?
    Doing things to our bodies
    The pressures of life
    Lifestyles and life events
    What starts fatigue?
    What can keep fatigue going?


    Who gets fatigue?
    If we look at fatigue in general, rather than CFS in particular, two things are immediately apparent. Firstly it is very common, over 30% of the population experience fatigue at any one time. Secondly there are a variety of causes for it. Listed below are just a few.
    Doing things to our bodies
    To begin with the obvious, not sleeping can make us tired. We get fatigued after exercise. Being ill often results in tiredness. Most "recreational drugs", both legal and illegal will make us tired, though maybe not till the next day. Having an intense emotional or physical experience - arguments, sex, shock, violence - these will fatigue or exhaust us. Not drinking enough fluids can make us tired. This is all predictable, short term "normal fatigue". Fatigue here is telling us to stop what we are doing and to let our body recuperate for a while. However some fatigue is more long term, less obviously useful. Here the links between what we do and how we feel are less obvious.
    The pressures of life
    Both from research and anecdotal evidence, it is now clear that anyone under stress is more likely to become fatigued and/or ill. Some of the reasons for this are only just becoming clear and are the subject of a new field of medicine -psychoneuroimmunology. As the name suggests, this studies the links between life events, the way we perceive and cope with those events, the functioning of our brain and nervous system and the functioning of our immune system.

    At last there is a scientific basis for what has been obvious to most of humanity for most of the time - stress makes us ill.
    A brief word on the mechanism of this. Consider short term stress. The principle purpose of the stress response is to allow us to cope with situations requiring rapid response. A fire alarm goes off, a child has an accident, a chip pan goes on fire - what happens to our bodies?

    First of all our sympathetic nervous system switches on. Our pulse and blood pressure go up, our breathing rate increases. This mobilizes energy. Our pupils dilate to let in more light. other parts of the body - our digestive system, our hands and feet, - get resources diverted away from them (thus cold feet and butterflies).
    All this allows us to make a quick response. If the stress is present for longer, another physical mechanism kicks in.

    This is the hypothalamus - pituitary -adrenal system. This acts by regulating chemicals such as cortisol which have wide ranging effects on the brain, and our nervous, immune and hormonal systems. The results of the activation of this system are again, in the short term, beneficial. Cortisol increases our ability to distinguish between sensations - thus the "heightened awareness" people often report in extreme situations (good or bad). it also mobilizes adrenaline allowing us to access an intense burst of energy.

    However the effects of a prolonged or repeated stress response are less good. Animal and human studies have shown that prolonged stress leads to a profound alteration in our immune functioning. We are more likely to catch cold under stress; latent viruses such as herpes are more likely to express themselves. The immune system is complex and still only partial understood, but the overall effect of prolonged stress is to decrease the functioning of the immune system.

    Continuing stress will also lead to long term alterations in our levels of neurotransmitters, our hormone levels, all of which in turn will effect our mood and energy levels (for the worse). It also now clear that depressed mood leads to a depressed immune system and vice versa. The pieces of this puzzle are still being put together, but the fact that stress leads to profound, if subtle, changes in our functioning - at all levels - is now beyond doubt.
    Lifestyles and life events
    We know that certain life events and lifestyles make more people prone to fatigue and illness. People who develop fatigue problems are more likely to have had major life events happen to them in the year previous to developing the problem. Life events can be either positive or negative - marriage, bereavement, changing job, moving house, the break -up of a relationship. All of these will exert there toll on the individual. For instance a study done of divorced couples showed that they had significantly more depressed immune functioning than average, and that there was significant correlation between the level of immune depression and the level of ongoing emotional attachment to the relationship.

    Certain lifestyles are more subtly fatiguing. Having little rest, working under pressure, being a single parent, looking after an ill relative, being unemployed. In a way these are obvious sources of fatigue. Less obviously the kind of lifestyle the sports enthusiast or athlete has puts the same kind of pressure on their body, even though it is perceived as positive. It is now clear that the immune functioning of training athletes is lower than normal, their tendency to fatigue and illness is greater.

    Personality Factors: It is now clear that a tendency towards hostility and aggression is positively correlated with a tendency towards heart disease. Recent evidence has shown that a tendency to suppress strong emotion and to avoid conflict is positively correlated with the development of certain types of cancer. Is there any type of personality that is more likely to develop Fatigue?

    There is some evidence that there is. People who are more inclined to set high standards for themselves and their performance, who have a tendency towards perfectionism seem more likely to get fatigued. In a way this makes sense. If you decide that you have to perform 100% all of the time, you are going to be expending a lot more energy than someone whose expectations are less high. Also if you decide that you always should be able to perform at peak level, you will be less tolerant of tiredness and more likely to push yourself when you should rest
    What starts fatigue?
    Viruses
    Physical Illness does appear to be present at the beginning of the majority of cases of Chronic Fatigue. Having a viral infection certainly makes us fatigued, in some cases for up to three months after we first contracted it. So a virus can certainly seem to trigger a CF problem. Research from our group and others has suggested that some infections are more likely to trigger the illness than others - viral meningitis, glandular fever and Q fever for example, but so far there is no evidence that the virus is still there after the initial infection is over. Traces of the virus can, of course, often be found, but there is no evidence the virus continues to exert a long term influence. This is not HIV in which viral persistence continues in a harmful fashion.

    Crises
    As mentioned above, major life events are common in the lead up to CFS.

    Nothing
    Sometimes there is no obvious reason why someone, either gradually or suddenly, gets more and more tired, then exhausted, then pained and disabled. Whatever the reason, the overall effect is a sudden or gradual inability to keep up the kind of life they previously did.
    What can keep fatigue going?
    How we cope makes a difference
    Take the example of heart disease. Rehabilitation from a heart problem can take a variety of courses. In one scenario the individual becomes fearful of any exertion, believing that this increases the likelihood of another heart problem. They feel helpless and under threat of death. If they are a smoker or drinker or over-eater it is possible that they resort to more of these behaviours because of the stress. They become anxious and demoralized.

    The combination of inactivity, fear, helplessness and use of food and drugs does indeed make them more likely to another cardiac incident.
    In an alternative scenario, the same individual adopts an approach of gradual re-introduction of exercise, reduction of stress and stressors and develops a feeling of being in control of their recovery. Prognosis thus improves.

    More subtly, in recovery from cancer, the individual's beliefs about outcome have been shown to be important. On receiving diagnoses, individuals who adopt either the fighting it attitude, or who go into denial, have a better chance of survival than those who feel hopeless and helpless. Prognosis in recovery can be improved by helping people change the way they manage their illness.

    What this demonstrates is that there are several factors at play in illness and recovery. First there is the bare physical fact of the illness. Secondly there is how that makes us feel emotionally and how we believe we should handle it. Thirdly there is how we actually do handle it. The second two factors are as important as the first. It is no different in Chronic Fatigue. Some ways of managing are more helpful than others.

    However due to the controversy surrounding CFS, sufferers have often been given conflicting advice or advice that is not, in the long term, necessarily helpful. Equally suffers may be merely following the dictates of their bodies - if something causes pain or fatigue then one naturally avoids that something.
    Let us look in more detail about what we know to be useful and less useful ways of managing CF problems.

    Rest
    The natural response to an illness is to rest. There are few illness where, in the short term, one would not be advised to rest. However in CFS, one is often advised to rest, rest and more rest, over a prolonged period of time. We are now beginning to realize that this is not a good thing. Prolonged rest has been shown to be detrimental on a number of levels.

    Physically it leads to deconditioning of the body, affecting the immune system, the muscular system and the nervous system adversely. Even a healthy individual if forced into prolonged rest, will fairly quickly become much less healthy. They will lose about 3% of there muscle mass a day, become progressively weaker and more prone to illness.

    Mentally, over-resting leads to sluggishness, lack of motivation and concentration and low mood. Particularly if one feels one has no alternative but to rest, one becomes s frustrated and demoralized.
    However this is not to say don't rest. Rest is essential, be we fit or ill. Indeed another factor that appears to be common in the onset period of Chronic Fatigue Problems is too little rest. People often struggle on through illness, attempting to maintain a lifestyle that is beyond them, resulting in them becoming more ill and fatigued. Eventually they crash.

    Sleep
    Again in Chronic Fatigue problems, people often develop disturbed sleeping patterns. Often this will take the form of having poor quality or unrefreshing sleep at night, often for more hours than prior to illness, followed by day time sleep to compensate for feeling so tired during the day. Several things are going on here.
    Firstly we know that, as with resting, it is possible to oversleep, that sleeping more makes us more tired and sluggish during the day.

    Secondly there is a vicious circle at work. If we sleep during the day this reduces the quality of sleep at night which in turn makes us more tired during the day, which makes us more likely to sleep during the day, which reduces sleep quality at night... and so on. More subtly, if we spend a lot of the day resting and unstimulated, there is less need for deep prolonged sleep at night, even though we may feel more exhausted than when we were active.

    This lack of good quality sleep can lead to further frustration and exhaustion, more resting and more daytime sleep which in turn...
    In short, once our sleep rhythm is disturbed, it can have profound effects on how we feel. Managing this differently can make fatigue problems better or worse.

    Activity
    If activity leads to pain and exhaustion, it is only natural to avoid it and to rest until we feel up to it. This often happens in CFS. Individuals will save energy in prolonged rest, be active for a while then, perhaps a day later, feel the physical effects of that activity - exhaustion, muscle pain - and then rest again for long period.

    This boom and bust cycle tends to be typical of CFS. Again there are certain elements of a vicious circle in this pattern. If activity produces pain and exhaustion we avoid it. The more we avoid it, the less able we become to do it. When, for whatever reason, we are forced to do it again, it produces even more pain and exhaustion, this leads to more rest and avoidance.
    Eventually, as with any other Chronic Illness, particularly one where there appears to be no hope and the sufferer feels that they have little control over their condition, demoralization and depression often occur. These feelings make an already bad situation worse.

    Author: Vincent Deary

    Understanding fatigue - towards a model of CFS

    So, these are some of the factors that appear to be at work in the onset and maintenance of CFS. Let us now attempt to synthesize these into a model of the condition. This will in turn lead to a management strategy for improving condition. That fact that this management strategy has been shown to work lends indirect support to the model it is based on. Let us look at that first. Before proceeding though, again, a word of caution. You may recognise yourself in some of this. You may not. If it means nothing to you, go on to the self help section and try what is suggested there anyway. Let us first attempt to construct a typical CFS history and see how the factors above can help make sense of it.
    model
    The model

    The black line represents the activity level of the person. The red line represents the activity limit of that person. like any other living thing, every individual will have a level of activity beyond which they cannot function for long. We all exceed this occasionally - running for a bus, going through the stress of studying for exams etc. Functioning beyond that limit for long will produce increasing fatigue, pain and propensity to illness.

    Let us look at how this might work in practice. At the beginning of the graph, the individual is busy, but not too busy. The general flavour of that business could contain numerous factors - busy work, social life, exercise and sport, childcare commitments, being generally driven. As time goes on however, the individual is beginning to reach their limit. This can be for two reasons - either their activity level goes up, or their limit comes down. In fact the two will often go together. An increase in activity levels without time for rest will weaken the individual and lower the limit of coping. The longer one tries to function over or near one's limit, the more the limit will reduce. Sometime external circumstance - viral illness, life crises, will lead to an abrupt reduction of the person's limit.

    An individual may carry on like this for some time, perhaps feeling increasingly tired or perhaps thriving on the pace. At point A in the graph comes the straw that breaks the camels back. Most clients that we see report some critical incident, usually a viral infection, sometimes an operation or other life event at which point they clearly feel themselves to be fatigued and ceasing to cope.

    They may struggle on for some time. Between point A and B, they are trying to maintain their activity level whilst their ability to cope, their limit is reducing all the time. The further they get above that limit, the more they feel fatigued, ill and unable to cope, the lower that limit becomes. Two things can happen at point B. Either the individual will abruptly stop trying to cope and abruptly drop their activity levels (this is illustrated in Graph 1). Or they will gradually drop more and more from their life (see Graph 2).

    Let us go through Graph 1 first. At point B the individual decides to stop work, drop responsibilities and rests. Again several things can happen at this point. The individual may not rest enough and attempt to resume their former activities too soon (point C), whilst they are still not recovered. This puts them in the red zone, leading to an abrupt return of fatigue and pain (point D). They may struggle on for a period, during which time their limit decreases further. At some point (E) they will return to rest again.

    Most individual will eventually enter a period where they rest a lot, or do much less than they used to for a prolonged period. As pointed out above, prolonged rest is actually detrimental to the system, reducing the limit even further (between B and C; between E and F). This means that a lower and lower level activity will produce distressing symptoms. The person will naturally reduce their activity levels in response to this. In so doing, with the increase in rest and sleep that this usually entails, they will reduce their limit even further.

    Eventually, at point F, most people reach a "stable state." They will have, through hard won experience, a knowledge of their current limit. On days when they are more symptom free than others they will push over it. This will then lead to symptom increase from which they will recover by resting for, perhaps, a day or two. Once the symptoms are less, they will push the limit again. These symptom lead patterns of activity and rest, the boom and bust cycle, characterize Chronic Fatigue Syndrome. You may recognize this end stage of having to live within a very narrow limit.

    Let us look in a bit more detail at the physiology of boom and bust. When you do too much - that is when you exceed your current physical limits, given your current health and fitness, you cause the individual muscle fibres to behave abnormally. These are called eccentric contractions. Instead of a smooth co-ordinated contraction, the individual fibres pull against each other, causing microscopic areas of damage. Over the next 24-48 hours this damage repairs, but causes delayed pain. Hence the "boom" is not a good idea. Furthermore, because the excess activity leaves you exhausted, and in need of rest, during the following period exactly the opposite happens. The muscles get weaker, and even more vulnerable to the next period of activity. Back

    Some people will reach that stable state without such dramatic ups and downs before hand. This is illustrated in Graph 2. . Here at point B rather than abruptly stopping everything, some individuals may gradually begin to drop more and more from their lives as keeping it all going is making them ill. Eventually, at point C, they will have reached a substantially lower level of activity than previously. Often people will, by this point, be only working and resting the remainder of the time. This reduction in activity and increase in rest will lead to a more gradual lowering of their activity tolerance than in Graph 1. Again they will reach a stage where they will be resting much more than before and expending energy in sustained bursts.

    As I said you may not recognize yourself in any of these patterns or cycles, or you may recognize bits of it. The important point to grasp is that whatever started it off, the pattern of Chronic Fatigue often becomes self perpetuating, a vicious circle that one gradually enters and that it can be hard to break.


    Author: Vincent Deary

    Breaking the cycle: an overview of self-help


    The above mentioned model (see: Understanding Fatigue - Towards a model of CFS) of Chronic Fatigue Syndrome is based on typical cases. No-one, of course, is typical. However from this model a way of managing the illness has been derived which pays particular attention to the factors that keep the condition going. By working on these it has been demonstrated beyond reasonable doubt that substantial improvement can be achieved.

    Remember what we said about heart disease. First there are the bare physical facts of the condition, secondly there is how this makes us feel emotionally, what we believe is going on and how we believe we can best manage it. Thirdly there is what we actually do about it. The last two factors are within our control to a great extent. Changing them can change the course of most illnesses. Let us see how we can change them to help with CFS.
    An Overview of Self Help
    As should be obvious from the above, one of the key factors which seems to be keeping up the level of disability in CFS whatever else may be going on is the symptom lead pattern of activity and rest. Although no two sufferers are alike, all of them will have some disturbance of activity, rest and sleep. How can this be changed?

    By becoming aware of it
    Try recording your activity, rest and sleep for a couple of weeks. This will be your starting place. By recording exactly how much you're doing at the moment you can then begin to introduce gradual change based on your current levels of activity. There should be no abrupt changes of activity levels. Indeed, initially you may even step down what you are doing.

    Making activity and rest consistent
    Once you have calculated how much activity and rest you are having currently, the next step is to "spread" that amount evenly throughout the day, so that you break the cycle of doing to much on one day, too little on another. Your initial targets for consistency will be set low enough, by yourself, that you feel you could keep up your agreed level even on a bad day. Equally you won't exceed them on a good day. This will do two things:
    (1) Give you back control. For the first time in a long time, you will be deciding when you are active and when you rest, not your symptoms. Breaking the link between symptoms and what you do will be initially difficult, but it will be the first step in taking control over your life again.
    (2) Give you a foundation to build on. Once you have established consistency and control, you can, gradually and at your own pace, begin to build on it. That is the next step.

    Gradual Increase or Decrease
    As we saw in looking at the graphs, people loose their ability to do things over the course of CFS. Attempting to resume previous activities only leads to symptoms getting worse, so they are dropped again. However this can be overcome. Using consistency as your basis you can gradually re-introduce more activity.
    Again consistency will be the key. Introduce a slight increase in activity; keep it up till it gets easier, then move up again. This way your symptoms will never get so bad that they will stop you from improving. Small, consistent steps are the key. There is no sudden cure in CFS. You will improve by small degrees over a period of time, pushing the red line gradually back up again.
    or you may have to decrease some of your activities, gradually introduce rest in some areas of our life.

    Improving your sleep
    In conjunction with the above you will gradually improve you sleep, again in small achievable steps. You will be given "handy hints" for helping you to sleep better.

    Setting goals and problem solving
    So that you have a sense of where you are working towards, you will set long terms goals and be helped to break them down into small achievable steps to reach them.

    Overcoming fear, frustration and hopelessness
    Often people become demoralized and hopeless in long term illness. Even if they see some initial change, it may be so slight and at such cost that they give up. They may feel that they are doing themselves harm. You will be given practical hints on how to overcome such feelings, or at least to put them aside for long enough to see if it is worth continuing with the self help.
    Side Effects
    There are some side effects associated with the treatment of CSF. These may include the following:

    You will experience an initial increase in symptoms. This is natural, as in being consistent you will be being active when you don't feel like it. You will get more muscle ache, more fatigue etc. Remember - this is the bodies normal response, it does not mean a relapse of your illness. Providing that everything has been done gradually, and you have not been over ambitious, this should not be too painful, and it should pass after a few weeks at most.

    You may not feel any better for some time. It is not uncommon for people with CFS, who take this approach, to find that they can gradually do more and more without feeling any worse. However they don't necessarily feel better. But they can do more. Symptoms in CFS often go very slowly.

    You may get frustrated with your lack of progress. People don't get better overnight with this approach. It is often hard work. After all, you will basically be rehabilitating yourself from a major illness. Progress that happens in small steps can often appear like no progress at all. It will help you to a) not expect too much too soon and b) to keep a record from the beginning so that you can see progress, even if you can't feel it at first.


    Author: Vincent Deary

    Physiological aspects of CFS

    Many people with CFS are concerned that their distressing symptoms may be related to a disease that hasn't been detected. Others are concerned that a virus (if one occurred at onset) is still present or has caused physical damage to the body. However, intensive research has tried to establish whether disease, deficiencies or any other abnormal changes in the body may explain the very distressing and debilitating symptoms experienced by people with CFS.

    To date, it appears that there is no one cause of CFS. Patients complain of a variety of different triggers, e.g. different types of infection or stressful life events. Some sufferers can pinpoint the exact date that it started. For others the onset is more gradual.

    Difficulty maintaining previous activity levels is common to all sufferers. Some sufferers feel so ill that they rest for long periods and give up many of their previous activities including work, social activities and managing the home. Others may be able to function at a reasonable level, e.g. go to work or look after their family, but due to pushing themselves so hard in the day, may do very little in the evenings or at weekends due to their exhaustion. Others tend to do too much on "good days" and push themselves too hard for the level of their stamina resulting in resting for long periods on other days.

    Over time, reduced or irregular activity and increased periods of rest cause physical changes in the body. These changes cause unpleasant sensations and symptoms that can be very distressing. It is important to point out that these changes are reversible with physical rehabilitation and/or exercise.
    Research has looked at the effects of rest in healthy people when they reduce their activities and many similarities between CFS patients and healthy inactive people have been noted:

    Changes in Muscle Function
    Changes in the Cardio-Vascular System
    Regulation of body temperature
    Reduced calcium levels
    Reduced tolerance to activity or exercise
    Changes in the nervous system
    Changes in mental functioning
    Alteration of the biological clocks
    Disturbance of the sleep-wake rhythm in CFS
    Disturbance of cortisol production
    Anxiety and Stress
    Life Stress and Low Mood
    Conclusions
    Changes in Muscle Function

    A decrease in the number of active cell mitochondria (tiny parts of the cell that act as a powerhouse) and their enzymes have been found in the muscles of CFS patients when compared with healthy active people. The reduction of cell mitochondria has also been found in healthy inactive people. Fewer cell mitochondria may lead to production of lactic acid at low exercise levels, which in turn limits muscle performance. These changes may account for the feeling of a lack of power or energy in the muscles.

    As reduced activity leads to less efficient muscles (reduced strength, tone and size), it is more difficult for the muscles to squeeze the blood back to the heart causing blood to pool in the lower part of the legs. Pooling of blood can cause pain both during activity and rest.

    When muscles are not used regularly, they become unfit or de-conditioned. When these muscles contract during activity, uneven stresses are produced. This may result in a feeling of weakness and instability followed by delayed pain and discomfort.

    In all individuals, muscle pain and stiffness is a natural consequence of beginning a new exercise programme or when unaccustomed exercise is taken.

    Changes in the Cardio-Vascular System

    The cardiovascular system (which incorporates the heart and blood vessels) becomes out of condition very quickly with rest. The longer you rest the more changes occur.

    Physical changes that occur with cardiovascular deconditioning include: (1) reduced blood volume after 1or 2 days bed-rest, (2) reduced volume of red blood cells after 8 days bed-rest which reduces oxygen carrying capacity of the blood, (3) volume of the heart reduces by about 15% after 20 days of bed-rest therefore less blood is pumped to other organs. These physical changes may result in making you feel breathless or dizzy when exercising, and contribute to your fatigue.

    Following a "lying down" rest there is a drop in blood pressure on standing up (postural hypotension) due to blood pooling in the limbs and gravity when we stand up. Consequently, less blood returns to the heart and therefore less blood goes to the brain. The reduced blood flow to the brain causes dizziness and sometimes fainting on standing up.

    Regulation of body temperature

    Due to changes in the blood flow to major body organs following prolonged rest, changes in body temperature occur. This may result in feeling hot and or cold, with excessive and inappropriate sweating at times

    Prolonged bed-rest results in a "headward" shift of bodily fluids. This may result in visual problems and sensitivity to noise.

    Reduced calcium levels

    During prolonged bed-rest, bones do not have to support the weight of the body or the pull of the muscles and lose calcium. Over a long period of time, this leaves bones brittle and easier to break

    Reduced tolerance to activity or exercise

    General de-conditioning of the body occurs as a result of prolonged rest or reduced activity. This results in being able to tolerate less activity as fitness reduces. Muscle fatigue, feeling of heaviness as well as a general increase in overall fatigue occurs when active.

    Changes in the nervous system

    One of the functions of the nervous system is to co-ordinate our muscles. However, regular performance of an activity is required to maintain good co-ordination.

    Prolonged periods of inactivity therefore reduce our co-ordination.

    This may result in unsteadiness, clumsiness and reduced accuracy on carrying out precise movements
    Changes in mental functioning

    Prolonged rest deprives people of intellectual stimulation and has a dulling effect on intellectual activity.

    This may impair concentration, memory, and our ability to find the correct word
    Alteration of the biological clocks
    The central "clock", which is located in the hypothalamus of the brain regulates many body rhythms that run on an approximate 24 hour cycle. These rhythms are called circadian rhythms and they control vital functions such as:

    sleeping and waking

    feelings of tiredness and alertness

    intellectual performance

    memory

    appetite

    body temperature

    the production of hormones, for example, cortisol

    the activity of the immune system

    Cicardian rhythms are responsible for your body "feeling" things at certain times of the day, for example, hunger, alertness, tiredness, needing to go to the toilet. The biological clock is affected by the events of the day and is reset each day by cues such as getting up or going to bed times, meal times and performing daily routines.

    Recent research has also shown that there are "local" circadian rhythms within the body, with different systems and organs being more active at different times. There is also a third cycle, largely determined by night/day light/dark. it is now thought that part of the problems generated by disturbed diurnal routines are caused by not only these individual cycles being disturbed, but by them going out of synch. with each other. Your brain might think its 3am; your digestive system thinks its 8am (when it tends to be more active) but the light is telling you its noon. This dysynchronisation has been linked to many of the more common symptoms of CFS - disturbed sleep, poor digestion, alterations in appetite, headaches and of course fatigue.

    The biological clock's time keeping can be disturbed if not reset by these cues in situations such as:

    flying across different time zones (jet lag)

    working shifts

    during illness

    If regular cues are lost, disruption of the clocks results in a slipping of body rhythms that can lead to: (1) the "normal" intense feelings of tiredness at night shifting into the day making it difficult to cope with your usual routine. (2) The "normal" daytime rhythm getting shifted around to the night, making you feel more alert and causing difficulty in getting to sleep.

    This can lead to:

    poor quality sleep at night

    increasing fatigue during the day

    poor concentration and forgetfulness

    low mood

    feeling unwell

    headaches

    muscle aches

    loss of appetite

    irregularities of bowel movement

    alterations to immune functioning

    As the symptoms of CFS are so similar to those of jet lag, circadian rhythms of people with CFS have been investigated. Evidence from some studies indicates that CFS is associated with the biological clock losing control of the body rhythms.

    It is thought that an infection, a very stressful life event or an accumulation of persistent stress may contribute to us breaking our usual daily routine and normal sleep-waking cycle needed to reset the biological clock. This is because a stressful life event or an accumulation of stress can cause worry and disturb our sleep at night, leading to irregular getting up and going to bed times and increased rests during the day. The biological clock then loses control over body rhythms resulting in the above mentioned severe physical and mental symptoms of CFS.
    Disturbance of the sleep-wake rhythm in CFS
    Most CFS patients complain of poor quality sleep. Common problems include difficulty in getting to sleep, restlessness, wakening in the night and waking feeling unrefreshed and sleepy.

    In a study where the sleep patterns of healthy volunteers was deliberately disrupted to be similar to those with CFS, they developed symptoms similar to those of CFS including feeling unrefreshed and physically weak, sleepiness, poor concentration and muscle aches. However, when they were allowed to sleep undisturbed, their symptoms subsided. This study indicates that a disturbed sleep pattern can cause some symptoms of CFS but that these symptoms are reversible.

    Disruption of sleep can affect the activity of the immune system, possibly increasing vulnerability to colds and infection. Inactivity and being deprived of sleep cause an increase in the feelings of effort and fatigue when performing activity or exercise.
    Disturbance of cortisol production
    Cortisol is a hormone whose production is controlled by a circadian rhythm. Cortisol switches on our metabolism in the morning to prepare us for the physical and mental challenges of the day. Exercise and other stress causes an increase in the level of cortisol in the bloodstream. Prolonged stress however has been associated with lower cortisol in a kind of burn-out of the body's physiological coping mechanisms.

    Research shows that some CFS patients have a lower level of cortisol, but no disease has been found that would account for this finding. Low cortisol is also shown in people who have been through trauma. The low cortisol levels found in CFS patients may also be associated with disrupted sleep and irregular activity.

    Low cortisol levels have also been found in other people who have disrupted sleep such as a) healthy individuals who have rested in bed for more than 3 weeks b) healthy workers after working 5 nights of shift work c) people suffering from jet lag.

    Low cortisol may add to the feeling of tiredness, decreased alertness and poor performance seen in CFS and night shift work. Whereas high cortisol allows us, in a flight or fight situation, to focus on the immediate threat, low cortisol is associated with difficulty in distinguishing the "important signal" from the "background noise" - like when you are in a crowded room and the background noise prevents you focussing on the person you are talking to.

    This does seem to be a common experience of CFS. It would also account for some of the light and noise sensitivity. It is as if a crucial "filter" has been removed from the person's perceptual system. Re-establishing more "normal" activity and rest patterns, and dealing with stress should help to reverse these changes.
    Anxiety and Stress
    We normally think of anxiety as being all in the head. In fact it is largely a bodily thing and affects and involves most systems of the body. Anxiety is not always obvious either. It may be more like a background stress, subtle but persistent. The following is a description of some of the physiological components of anxiety. Bear in mind that they are not always as dramatic and obvious as a panic attack. The research shows that it is the persistent low grade anxiety - Stress in other words - that has the profoundest long term effects.

    Anxiety is an automatic physical response of the body to a threatening or stressful situation. We can all remember having butterflies before an exam, an interview or going to the dentist! When we are in a situation that makes us feel anxious, there is increased activity of the central nervous system and an increased amount of the hormone adrenaline is released into the bloodstream.

    These natural changes have a protective function in preparing us for action when we feel threatened or encounter a stressful situation. However, the physical feelings that we experience when anxious can be very unpleasant. Having CFS can at times be very stressful. Not only may you be dealing with feeling ill, but you may also have other concerns related to your illness such as concerns about finances if you are unable to work or worries about the cause and effects of CFS on yours and others lives.

    These worries may at times trigger feelings of anxiety. Entering into a situation that you perceive as being stressful, whether doing something for the first time in months, increasing exercise etc, may lead to a further increase in anxiety. The physical effects of anxiety include the following:

    Increased heart rate

    This can be felt as a racing pulse, palpitations, pounding or tightness in the chest. Some people feel very frightened by these sensations and can become more anxious resulting in a further release of adrenaline that maintains the physical sensations. This also causes a rise in blood pressure.

    Breathlessness which can lead to hyperventilation

    This natural response to being anxious enables our lungs to be filled with oxygen to prepare us for action. However, if over-breathing (hyperventilation) continues for a while, an array of unpleasant symptoms may occur because it reduces the amount of carbon dioxide in the blood. This changes the balance of chemicals in the blood causing tightening of the blood vessels and reduced blood supply, especially in the brain.

    This reduced blood supply to the brain causes sensations such as light-headedness, dizziness, faintness, feeling unsteady, clumsiness, blurred vision, pins and needles, tingling or numbness (sometimes one-sided) in the limbs or face. Cramp-like muscle spasms may be experienced, particularly in the hands and feet. Increased sensitivity to light and noise may also occur.

    Other abnormal sensations such as feelings of being detached from oneself, feelings of unreality or being out of control may also occur. Feeling faint is misleading because overall blood pressure is high in anxiety and fainting only occurs when blood pressure is very low The muscles of the chest wall can be over-used during hyperventilation which may lead to chest pain or discomfort.

    If these sensations are interpreted as a major problem, i.e. as a problem with the heart, it can lead to a further increase in anxiety and adrenaline production leading to an increase of unpleasant sensations. Over-breathing also results in increased use of the muscles of the head, neck and shoulders resulting in headaches, and localised stiffness and pain.

    Over-use of the neck muscles in hyperventilation can be accompanied by sensations of tightness or a sore throat. Excessive mouth breathing and reduced saliva production may also occur as a result of the increased nerve activity and release of adrenaline. This causes a dry mouth, swallowing difficulties and the feeling of a lump in the throat.

    Blood flow is altered

    When anxious, blood is redirected to muscles to prepare for action. Reduced blood flow to the skin may cause pallor, pain, coldness of hands and feet and sometimes numbness or tingling. Reduced blood flow to the bowel affects the passage of food and can result in symptoms of irritable bowel, for example, constipation and or diarrhoea and abdominal discomfort.

    Muscle tension: There is an increase in the tension of the muscles to prepare them for action. This can cause aches, pain (particularly in the shoulders, neck, jaws and head) and fatigue. Twitching or trembling muscles may also occur.

    Visual disturbance: Increased nerve activity affects the muscles of the iris (coloured part of eye) causing dilation of the pupils, which lets in more light. The shape of the eye lens is altered to help improve side and distance vision. Together, these changes increase visual sensations that can be experienced as blurring of vision.

    Sweating: Increased sweating occurs to allow for heat loss causing clammy hands and feet.

    Sleep disturbance: As adrenaline arouses, sleep disturbance such as difficulty getting to sleep or frequent wakening is very common at times of stress and can be accompanied by nightmares and sweating.

    Mental functioning: Anxiety may affect mental functioning in a number of ways and contribute to the following: Mood disturbance; e.g. irritability, being easily upset, Inability to concentrate, forgetfulness, indecisiveness, restlessness; e.g. fidgety, can't sit still, tendency to go over things again and again.

    Everyone experiences physical symptoms of anxiety in a different way and rarely experience all of the symptoms listed above. When these symptoms are extreme, they can easily be misinterpreted as signs of a serious disease that can trigger further unpleasant symptoms that can occasionally trigger a panic attack. An increase in nerve activity and adrenaline production can precipitate feelings of weakness and exhaustion that adds to the fatigue and muscle aches of chronic fatigue syndrome.

    During periods of prolonged physical or mental exertion, there is increased activity of the nervous systems and increased adrenaline production that leads to symptoms similar to those experienced in a flu like illness, such as aches and pains, headache, sweating, feeling hot and cold, chest tightness and sore throat. These symptoms may lead a person to reduce or avoid activities as they may believe that they are coming down with flu or a cold. As physical activity releases muscle tension, limiting activity can perpetuate the physical effects of anxiety and lead to further deconditioning.

    Life Stress and Low Mood
    Many patients experience major ongoing life stresses and problems related to the effects of their condition. These may include one or more of the following:

    Financial difficulties due to no longer working, reducing hours etc

    Worries about keeping a job or maintaining studies

    Changing role within the family, i.e. loss of responsibility

    Reduced social contacts leading to feeling isolated

    Strained relationship with partner due to them having to do more at home

    Feeling guilty about not being a "good" parent

    These difficulties can understandably trigger feelings such as frustration, helplessness and loss of control over life. These feelings which are a natural human response to stress, can lead to low mood for some people and depression in others. Low mood can lead to a variety of problems including tiredness, which can further reduce the desire to be active. Further reduction in activity exacerbates the deconditioning process. Worrying about problems can disturb sleep at night, which can then lead to sleeping later the following day and contribute to developing a poor sleep pattern.
    Conclusions
    As we said there is good evidence to show that all of the above effects are reversible by a programme of gradual physical rehabilitation. Learning to spot and deal with sources of stress is also important. Lastly, not worrying too much about symptoms is probably crucial The more one worries about a symptom, the more one focuses on it, and the more stress this generates, which in turn worsens the symptoms.


    Mary Burgess PhD - based on the work of Pauline Powell.

    Problems with sleep

    Problems with sleep are common in Chronic Fatigue. Generally sleep feels unrefreshing, you wake up feeling as tired as you did before you went to bed. Sleep may have got "out of rhythm" too. Sometimes people have difficulty getting to sleep and, though tired, lie awake for hours trying to get to sleep. They often wake up throughout the night. During the day they feel so exhausted that they often fall asleep, or have got into a habit of taking naps.

    Overall, you may feel that you are not sleeping enough, or that you are sleeping much more than you used to. Either way you are still feeling exhausted.
    So what can be done? Let us look first at what kind of factors can keep sleep problems going, then how you can become aware of them and finally how you can begin to change them. Like other problems in CFS, change will be gradual and it will probably get worse before it gets better.

    Lack of sleep - Irregular sleep
    Oversleeping
    Self help for Sleep
    Establishing a consistent sleep pattern
    Break the association of bed and restlessness
    Fixing the routine
    What to do about daytime sleep
    Coping with oversleeping
    Tips for better sleeping
    Don't worry
    Other websites related to sleep problems
    Lack of sleep - Irregular sleep
    Beginning at bedtime. You may find that you go to bed feeling tired, but cannot sleep. Not being able to sleep when you want to sleep, and feel you have to sleep, is generally very frustrating. This frustration increases bodily arousal which in turn makes it more difficult to sleep. At the same time, you may be worried about the effects of lack of sleep, or other worries from the day are going through your head. Somehow, this often seems to happen at bedtime, when we have nothing else to focus on. Similarly you may be much more aware of bodily aches and pains, and of generally feeling ill. All these factors - frustration, worry and increased awareness of symptoms - are going to work against "trying" to get to sleep.

    Once asleep you may wake up several times. A very similar pattern often occurs. You wake up, cannot get back to sleep and the frustration, worry and awareness make you more wakeful. The middle of the night can be a particularly bleak time for many. Between 2 and 4 our bodies experience a kind of physiological dip. Any feelings of lowness will be greatly amplified.

    Come morning and you wake but feel exhausted. You don't feel able to get up, so you lie in bed feeling awful.

    When you do get into the day, you may find that you feel the need to sleep to catch up on the night before. Or you may greatly reduce your activity and rest a lot because you feel so exhausted. This seems only sensible, indeed the need to rest and\or sleep during the day may feel overwhelming. However the daytime sleep and rest will actually reduce your need to sleep so much at night and will reduce the quality of the sleep that you do have. So when it comes to bedtime again, the whole cycle starts over.

    Another problem with daytime sleep, which you may have noticed, is that it can actually be very difficult to get going again after it. If we sleep for more than 20 minutes, we go into deep sleep. Coming out of deep sleep after an hour or two usually makes us very groggy. This in turn leads us to doing less, feeling worse and this in turn affects the quality of sleep at night.

    The overall effects of this kind of cycle of disrupted, irregular poor quality sleep would be devastating, even to a well person they include:

    Loss of energy and drive during the day

    Lowered immune functioning

    increased feelings of depression and anxiety

    lowered tolerance\increased perception of pain

    In CFS this can make a bad situation worse. It compounds the feelings of lack of control over ones life. The aim of this section is to allow you to take control of your sleep again. First though, let us look at the effects of excessive sleep.
    Oversleeping
    alarm_clock
    Now, oversleeping here means sleeping more than you used to prior to your illness. Studies have shown that the amount of sleep our bodies need is between 7.5 to 9 hours. Any less than that and we suffer the effects laid out in the last section. Equally importantly though, we can sleep too much. Sleep is like food. There is an optimum amount that our bodies need. If we regularly eat too much or too little, our bodies will suffer.

    However, in CFS people often feel the need to sleep more than the norm. Often they will sleep solidly for 10-12 hours, but still awake feeling tired. This reinforces the feeling that they need that much sleep.

    Again, there is a kind of vicious circle at work here. It has been shown that sleeping more than the average amount actually leads to feelings of daytime fatigue, impaired concentration and lack of energy and motivation. Having these kinds of feelings during the day will reinforce the belief that yet more sleep is needed, which will in turn lead to more of these kind of feelings.

    At the same time, the body will be getting into the habit of sleeping more and the longer this persists, the harder that habit will be to break. Any attempt to sleep less will lead to increased tiredness, so the cycle will continue.

    Again, once this kind of cycle is established, it can be very hard to break. Any change needs to be gradual and consistent. The first step is to become aware of what is happening.
    Self help for Sleep
    The first step is to become more aware of what your current sleep pattern and needs are like.

    Take a look at the sleep diary. As with the activity and rest in section 5, you will not change anything for a couple of weeks, merely keep a record of how things are at the moment. This will allow you to form a baseline for gradual change.

    The sleep diary asks you to record the following:

    What time you went to bed

    What time you prepared for sleep - i.e. turned lights off and started trying to get to sleep.

    What time you actually got to sleep

    Number and length of times you woke up during the night

    Time you woke up for the last time that night

    Time you got out of bed

    Number and length of daytime sleeps

    How refreshed you felt on waking


    The quality of your sleep that night.

    Now this is a lot of information. However what it will allow you to do is:

    calculate the average amount of time you sleep in each 24 hour period

    calculate the amount of time you spend in bed in each 24 hour period

    take a baseline measure of sleep quality to monitor improvement

    In the next section, we will put this information to use.
    Establishing a consistent sleep pattern
    Now, the broad aim of this section is to take the average amount of sleep you have in 24 hours and condense it into one sleep period at night. For instance, you may currently be sleeping an average of 8 hours. 5 hours of this may be broken sleep in a period of 8 hours in bed at night. The rest is 3 hours worth of catnaps during the day. Your aim then would be to "squeeze" those eight hours into the night time slot. Easier said then done. What is the first step?
    Break the association of bed and restlessness
    We are creatures of habit. After a time, our bodies become used to particular rhythms and tend to repeat them. This is particularly true of sleep. If you are currently in the habit of spending periods of time in bed awake, yet tired and restless, you are maintaining a kind of habit, an association of bed and feeling restless. As pointed out in above, this cycle becomes self-perpetuating. The way to break this cycle is to use bed only for sleep. The only exception to this is sex.

    Practically this is done as follows. Look at your sleep diary for the last two weeks. Look at the difference between when you went to bed and when you actually fell asleep. This is the first area you can change. It could be that you are in the habit of feeling tired in the evening, going to bed early yet not sleeping for a few hours. In so doing you are building up an association between bed and not sleeping. The way to change this is to go to bed much nearer your going to sleep time. If you are in the habit of resting, watching TV or reading in bed before sleep, do these in another room or, if this is not possible, in another place in your bedroom. Then go to bed when you are feeling sleepy.

    If you are not asleep within half an hour at most get out of bed.

    Sit quietly somewhere else and do something relaxing - listen to music, read a magazine. Go back to bed when you feel sleepy again.

    This will help to do two things:

    strengthen the association between bed and sleep

    help to break the cycle of frustration and restlessness described above. Rather than lying for hours "trying to get to sleep", go and do something relaxing and distracting to take your mind of this frustration. Then go back to bed.

    You should repeat this cycle as often as necessary.

    The same goes for night time waking. If you wake up in the night and can't get back to sleep again after half an hour at most, do the same. Get up and do something relaxing, when you feel sleepy, go back to bed again. Repeat as necessary.

    Now this may sound somewhat like hard work, and initially it probably will be. It will feel unnatural and strange. Persist. You are breaking an old habit and establishing a new one. It wont happen overnight. However if you persist you will be establishing a sleep routine that will eventually become automatic. Your hard work will pay off.

    The same principle applies to the morning. Once you wake up for the last time, get up.
    Fixing the routine
    To make the routine more stable, the easiest first step is to stabilize your getting up time. Take the average getting up time from your sleep diary. Try and get up at this time every day. This will help further establish a natural rhythm of sleep. Again initially you will feel more tired during the day, but if you persist, your body will begin to adjust to a new habit of having a more regular and controlled sleep cycle.
    What to do about daytime sleep
    The long-term goal is not to have any. As mentioned above, daytime sleep perpetuates the cycle of poor sleep at night and daytime fatigue. However it can be a hard habit to break. If you are sleeping a lot during the day - more than a couple of hours, you may find it easier to gradually reduce it. Read section below on oversleeping.

    Otherwise, the key is to substitute sleep with quality rest during the day. If you follow the instructions in section five above, the rest you are having during the day will fulfil the need that you currently meet with sleeping. Again this will not happen quickly. Be prepared to feel more tired initially. However as the quality of your night time sleep begins to improve, and that cycle becomes established as detailed above, the need for daytime sleep will diminish. Remember, persistence is the key.
    Coping with oversleeping
    The steps for this are the same as for the other changes in CFS.

    Establish consistency and control

    Make gradual changes.

    The first step is to take the average amount you are sleeping from your sleep diary and stabilize it. if this includes daytime sleep, do the same. Make it for a fixed time at a fixed time. Stick to this routine until it begins to feel easier to maintain it.

    Next, begin to make gradual reductions. It is best to begin with daytime sleep as this will improve your quality of daytime life. Say you are now regularly sleeping for an two hours during the day. Make a slight reduction of 15-30mins. Stick to this until you can achieve it fairly consistently. Then reduce again. You may find that the less you sleep the better you feel. As mentioned above, if we sleep for more than 20 minutes, we go into deep sleep. Waking up from this during the day leaves us feeling groggy and tired.

    So, aim to reduce and eliminate daytime sleep first. Once you have done this, follow the same principles with reducing night time sleep. First establish a consistent getting up time. Once this is regularly achievable, gradually reduce it. Keep the reduction consistent until it feels easier. Then reduce again. Your aim is to sleep about the amount you slept prior to being ill. It is best to aim for an average of between 7.5 and 9 hours. Any more or less than this will have the effects described in 6.1 and 6.2 above.

    Following the above instructions will help you establish a more regular and controlled sleep rhythm. Below are some further hints that can help with improving and overcoming sleep problems.
    Tips for better sleeping
    Some Do's and Donts.

    Don't exercise too near bedtime; this will make it more difficult to sleep as you will be physiologically aroused.

    Don't eat a large amount of food or drink lots of liquid close to bedtime.

    Don't take stimulants - tea, coffee, nicotine (or reduce the latter) within 4-6 hours prior to bedtime.

    Don't drink more than a couple of units of alcohol near to bedtime. Although this promotes initial drowsiness, it leads to night time waking later on. However, we have noticed that CFS sufferers rarely drink alcohol, so this is unlikely to be a problem.

    Don't do anything too mentally or emotionally strenuous near to bedtime - work, argue, make major life choices etc. These will only make it more difficult to get to sleep. For hints on how to deal with these issues, see 6.4.2. below.

    Do have a regular bedtime routine:
    Wind down in the hour prior to sleep with relaxing activities - bath, music, reading etc.
    develop a routine of "getting ready for bed" - locking up, brushing teeth, changing for bed etc. This will act as a trigger for your body to slip into sleep mode. Similarly when you get up in the morning, change into day clothes. This will signal to your body that you are in a different mode, even if you still feel tired.
    make sure your bed is as comfortable as possible, and the bedroom is not too hot or cold.

    Remember: try to build the association between your bedroom and sleep. Try to avoid any other activities or rest, apart from sex, in your bedroom.

    Don't worry
    At least not now. It seems to be part of falling asleep that worries go through our head. There is nothing to think about, nothing to distract our attention, so problems, worries and embarrassments from the day tend to rise up, worries about what the next day will bring. This makes us more anxious and more aroused so it becomes more difficult to get to sleep and our head gets even busier. We may begin to worry about not getting to sleep and how we are going to feel the next day. We get more anxious... and so on.

    So how do we stop worrying? Worrying tends to be the feeling we have when a problem is on top of us, rather than when we are on top of the problem. The key to stopping worry is to switch to the latter, i.e. getting on top of the problem.

    Heres how:

    Set aside some worry time in the early evening, time when you decide to focus on what's come up during the day and anticipate what's coming up in the future.

    Write down the main issues and loose ends. Now taking each problem in turn, think of as many solutions as you can to it. Don't censor yourself, write down anything that comes to mind that you think could help solve or overcome the problem.

    Go through your solutions and pick the one you think is most achievable, the one you are going to try.

    What is the first step of your solution? You don't need to solve everything now, just decide on a course of action, and the first stage of that action. Plan it. Agree a time with yourself when you are going to try out your first stage.

    Stick to this plan, implement it. Spend part of your next worry time evaluating how it went - did it work? If not why not? Do you need to go back to the drawing board (step 3) or can your carry on to the next step.

    Now when it comes to bedtime, and worries arise, tell yourself that you have the matter in hand. If new worries arise, or new angles on old ones, decide that you will deal with that tomorrow in your official worry time.

    All this should help you feel more on top of your problems. Worry is, after all, what fills the gap between a problem and a solution. if you are taking steps to bridge that gap, you do not need to worry.


    Author: Vincent Deary

    Problems with mood and motivation

    This section looks at how our attitude towards a situation can affect our ability to deal with that situation. Imagine a typical day. There are a number of things to be done - say some house work, then a visit from a friend, then a meal to be cooked and then a form to be filled in. As a situation this is neutral.
    Now add an attitude to that situation:

    There is too much housework to be done, I don't know where to start, I haven't got the energy to do any.
    I can't see that friend today, I feel too miserable, it will only make me feel worse. I don't like myself, why should she.
    Why bother cooking, it's only for me anyway.
    That form is too difficult, I can't do it.

    or

    OK, I'll do the washing up this morning, it's a start and at least the kitchen will look better.
    It might be good to see her today, and even if I'm not my usual self she won't mind. It might cheer me up.
    I could cook something simple. I quite enjoy cooking once I get into it.
    Those forms are stupid, but I'll start filling in the bits I can do and spend about an hour on it this evening, then I'll watch some telly. It will be OK.

    Now not only is the attitude different, but the outcome of those two scenarios will be very different too. In the first, the belief that nothing can be done or attempted results in nothing being attempted. So nothing gets done. This confirms the feelings of hopelessness. The tasks don't go away but grow, the person feels increasingly de-moralised, the problems increasingly big. Social contact is reduced and they feel even more isolated and hopeless.

    In the second scenario, having made a start on some things, the person begins to feel a bit more on top of them. This feels encouraging. Once the start is made the problems feel smaller, feel "in hand". The sense of uselessness and hopelessness begin to recede. The social contact is affirming and supportive. At the end of the day, the sense of achievement brings some contentment, some hope. The point to realise is that our attitude affects our feelings, our feelings affect what we do or don't do and this in turn affects our attitude and our feelings. If we believe we can't do anything we feel hopeless and low, we give up, do less and this in turn confirms our feelings of hopelessness.

    So what can be done? Well what this section aims to do is to give you some tools to become aware of and change any attitudes that you see as unhelpful. Although you may not be able to change your situation directly, changing the way you feel about and deal with it can make a difference in the long run.

    Becoming aware of our thoughts and feelings
    Common areas of concern
    Ways of thinking
    Putting your thoughts on Trial
    Implementing the alternatives
    Becoming aware of our thoughts and feelings
    Now this may sound strange. Aren't we always aware of our thoughts and feelings. Actually no. A lot of our thinking and attitudes are fairly automatic and unconscious, a lot of our judgments about ourselves, our abilities and the world are already formed - we do not need to think about them. So becoming aware of them can be initially quite difficult. It is almost like they form the background to our more conscious thinking. Like the wallpaper, we begin to take them for granted and forget that they are there.

    Initially it may be easiest to become aware of them through our feelings. Start off by noticing when your mood changes. You may be doing something, feeling quite OK, when suddenly or gradually, your mood changes. It may be anxiety or sadness or despair. Now, chances are, is that at this point you begun to think about something else. "Replay" this moment in your head. What changed, what were you thinking. It may be that you suddenly thought about a social engagement, or a task to be done. But why the anxiety? Were you also thinking that you wouldn't cope, could never get it done. Were you imagining some awful consequences? Try and be as objective as possible.

    Now look at the form - "Recording thoughts". Try an write down as much of the above as you can. In the left hand side record the time and the situation. In the left hand side record the thought and the feelings that went with it. Now record how much you believe the thoughts. Say it was "I'm not going to be able to cope, it will be a disaster". Do you 100% identify with that? Or does part of you think differently. Maybe you only believe it 80%. This is all you have to do for a couple of weeks. Now a few words of warning.

    Focusing on the kind of thoughts that lead to low or anxious states can be initially overwhelming. It may make you feel even worse. So bear in mind the following: The ultimate aim is to become more objective about your thinking, to achieve some distance from it so you can evaluate it more rationally. Writing them down and evaluating how much you believe them is the first step in this process.

    Remember, they are only thoughts. Thoughts about not being able to cope are not the same as actually not coping. Thoughts about being a failure are not the same as actually being a failure. The thoughts may have a strong emotional punch, but the more you can stand back from them and evaluate them, the less power they will begin to have to influence you. So for a couple of weeks record the kinds of thoughts that "get in the way", make you feel low or negative, stop you doing things that you intended to do. Now take a look back over this couple of weeks. Are there any patterns that emerge?

    Below are some hints on how to begin to see how your thinking is influencing how you feel and what you do. First we will look at common areas of concern. Secondly we will look at common ways of thinking about these situations that may be unhelpful.
    Common areas of concern
    Thoughts and feelings around the illness
    CFS is a very confusing condition. There are a lot of conflicting views as to what is going on, as to what makes it better or worse. Sufferers often feel that they have no control over the situation. Any attempt to change things, to do more, may be met by an increase in symptoms which the sufferer may believe means that they are doing themselves permanent damage.
    Kinds of thoughts and feelings that can occur in this are:

    - I will never get better, there is no hope (hopelessness.)
    - Walking only made my legs feel worse, maybe I shouldn't walk anymore (fear, worry, confusion).
    - My system must be permanently damaged; there is nothing I can do about this (despair, resignation).

    Thoughts about how you are

    I feel really useless, I can't cope with anything (despair, hopelessness, low self esteem)
    My life is a mess, I can't do anything about it (hopelessness)
    I'm just a failure, why bother trying anything ( despair, giving up).


    Thoughts about how you should be

    I should be able to do more than this, I can't even walk to the shops anymore (frustration, despair).
    I should be able to read more than a page, I can't concentrate on anything anymore (frustration)
    I should be able to this much better than I can, there is no point in even trying (despair, giving up).

    Thoughts about others

    No one understands my condition, no one gives me the kind of care I need (isolation, frustration).
    People have seemed off with me recently, no one like me (feelings of rejection, loneliness)

    Thoughts about the world and the "way things are"

    Things shouldn't be as they are, this situation is so unfair (anger, frustration)
    I must have done something terribly wrong to be feeling like this, I probably deserve it (guilt, punishment)

    These are some of the areas of concern, and the kind of emotions that can go with them. Next are ways of thinking about these situations that can make them worse.
    Ways of thinking
    All or nothing thinking
    If everything isn't right, then nothing is. This is a particularly common thinking style in people with a tendency to perfectionism. Is something is not 100% as it should be, then it is a disaster, there is no middle ground, no shade of grey. The consequences of this kind of thinking is that things are often not attempted because they can never be perfect, or any sense of achievement from a task completed is de-valued because it is not as it should be.

    Or again, in social situations, someone either like you or hates you. In an interview, if you didn't perform brilliantly, then it was a disaster. If the meal cooked wasn't the best ever, then it's the worst ever.

    Over generalising
    This is where one bad apple spoils the barrel. If you didn't cope once with a situation, then you will never cope again. If a walk was difficult once, then it will always be difficult. If someone criticises one thing about you or your work that means everything about you and your work are wrong.

    Eliminating the positive
    This can be a natural consequence of the above two. The negative is dwelled on and anything positive is discounted or ignored or attributed to someone else. This is the mental state where the bottle is half empty rather than half full. Looking back on your day it seems terrible. Any achievements are ignored, forgotten, discounted.

    "Should" thinking
    This is where you have expectations of yourself or others that are not met. The common emotion associated with this is frustration. I should be able to do more, he should (or shouldn't) have said that, I should be able to do this better; I should be able to walk further. This style of thinking often leads to giving up, or not taking any pleasure or achievement from what did happen, because it isn't the same as what should have happened.

    Catastrophising
    This is where one bad apple destroys the entire orchard. This kind of thinking is often associated with anxiety, panic and despair. Beginning with a single incident - say a slightly cold interaction with a friend - the mind spirals off into an emotionally laden scenario of the end of the friendship, complete rejection, despair and isolation. Or an increase in symptoms, feeling more tired, becomes irreversible damage to the system, permanent disability and hopelessness.

    Emotional Reasoning
    Or confusing feelings with facts. Because you feel like a failure, you decide that you are a failure. Because you feel rejected by a partner or friend, you decide that you have been rejected, and perhaps act accordingly. This can be one of the most insidious forms of thinking, when something feels overwhelmingly true, it is hard not to believe that it is true.
    Putting your thoughts on Trial
    Taking the last two weeks records of thoughts, set aside some time to go through them.
    First of all, try to divide them up into different problem areas. Were they thoughts about your illness, thoughts about your self, thoughts about how you should be, or thoughts about others and the world in general. Now using the list above, go through them and see if you can identify any of those thinking styles in those thoughts. Were you over-generalizing from one incident? Were you only looking at the negative at the time? Did you panic and get things out of proportion?

    It can be useful to do this retrospectively initially. The time since the original thought may have shown that it was not quite true, that things were not how they seemed at the time, or that you coped better than you anticipated. So go back to these initial thoughts and begin to evaluate them more objectively. Use the list of thinking styles and the light of experience. Now re-rate them. How much do you believe them now? Probably you believe some of them less than you did at the time. You may be able to see in retrospect how that way of thinking actually made things worse at the time.

    Coming up with alternatives
    Now you want to begin to put these thoughts on trial. It may help to give you some distance from them if you imagine that it was your best friend who was thinking like that. We are often more critical of ourselves than we would be of those we care about.
    Put these questions to the thoughts you recorded in the last two weeks:

    What is the evidence for and against?

    Are any of the thinking styles outlined above at work here?

    Are there any other ways of looking at the situation?

    What were the consequences of thinking like that, i.e., how did that make me feel, how did that change the way I handled things?

    If I had thought differently about it, would that have changed things?

    Again re-rate the beliefs. Now initially you may find it difficult to come up with alternative thoughts. Here are some hints on how you can begin to overcome some of the habits of thought that go along with particular thinking styles.

    All or nothing thinking
    Begin to try the idea of grading. If you decided that a meal, an interaction, a task was awful and consequently felt awful yourself, go back and rate the task on a scale of 0-100. Maybe it was good enough, OK it wasn't 100%, but maybe it was 80%. Try to become aware of this in your day to day life. Are you always expecting 100%. Perhaps it would be easier to lower your standards in some areas.

    Over generalising
    If you were basing your conclusions on one or two events, look for other events that are evidence against your conclusions. If a friend was a bit cold on one day, were there other days when they weren't, could there have been other reasons why they were like that? If walking one day made you feel more tired, were there other days when it didn't?

    Eliminating the positive
    Go back over the events that seem awful, hopeless. Was there any moment or incident that was OK. Was there any achievement that you discounted?

    Should statements
    With these it is best to become aware of when they are operating, and to evaluate how useful they are at the time. Are you expecting too much of yourself or other people? Are you only increasing your sense of frustration. What would be a more realistic expectation within your current limits?

    Catastrophising
    How likely is the imagined outcome? Is there any evidence that it might be otherwise? How else might the situation turn out?

    Emotional reasoning
    Again the key is evidence. You may feel that something is true, but put that thought on trial. Is there any evidence against it being true? Use the above set of questions to generate as many alternative ways of thinking as you can. It doesn't matter how much you believe them at the moment, but rate how much you do believe them. Like any other habit, thinking about things in a particular way can take a while to change.

    You won't let go of the old way quickly. You won't believe the alternatives immediately. See it as an experiment to try for a while to see if it makes any difference. OK, so you have practiced challenging your thoughts from the last couple of weeks. Now you want to begin to implement this on a daily basis.
    Implementing the alternatives
    Now that you have some practice at challenging thoughts in retrospect, you want to begin to try and do it "in the moment". This wont be easy at first. You will still probably have to write things down and challenge them later. The trick is to keep this process up until it becomes automatic, until you begin to become aware of thoughts as they occur and can choose to think differently.
    Do what you have done for the last two weeks. Record thoughts as they occur, or as close to the event as possible. Rate the belief and emotion associated with the thoughts. Now try coming up with alternatives. Write down as many as you can think of. Remember, it may help to think of yourself as your best friend, and to see the thoughts as things to be put on trial. Now rate how much you believe the alternatives. The re-rate the original thought and feeling. Have they changed? Has trying to think about things differently improved things?

    Keep this process up
    Again at the end of two weeks, sit down and evaluate how it has gone. You will probably still be able to be more objective after the event. Are there alternatives you can think of now that you couldn't at the time? Has experience provided evidence that disproves the thought? Persistence with this process will enable you to challenge unhelpful ways of thinking as they happen, more and more easily. As with everything else in CFS, this change will not happen overnight, but with persistence, gradual sustained change will happen. Good luck.

    Author: Vincent Deary


    FAQ's about CFS/ME

    Below are some of the questions we were asked and have reported them as accurately as we feel.
    How much should I do?

    I'm normally quite active physically; I'll do a dance class or two a week, and go for a decent walk most weekends. About seven weeks ago, I had flu for a week and then had flu-like symptoms for about four weeks - feeling really tired, sweating a lot, and just unable to do much or function normally. I felt like I was shivering, without being cold or having a temperature. It was almost painful.

    Work was extremely difficult - I found it very hard to concentrate. Then about two weeks ago I began to feel better, and felt brilliant and relieved that I was well again. Work was better, it was twice as easy to do, and I decided to do a contemporary dance class last Wednesday (so that was a week and a half feeling well).
    That set me back again, though. On Friday I felt just as bad as I had a month ago, and spent the weekend getting over it.

    I really love dancing and am deeply frustrated at not being able to. I just wonder whether that kind of intense muscular activity is not the kind of exercise I should be doing. I'm asking because I was interested to see that you said that people with post-viral illnesses do often feel worse after exercise, and that you should push yourself further. But my doctor said to take it really easy. And so did my Mum, and there's no arguing with her. It was only seven or so weeks ago that I first got ill - should I just be taking it easy.

    Answer:
    The short answer is I think you should be taking it easier. If I've understood you properly it sounds like you were quite knocked out for a bit by the flu, began to feel better, then you did something fairly strenuous and as a result felt much worse again. Now you don't know what to do - you've got the doctor and your mum saying "take it easy" and you've got us lot saying "keep going".

    What to do? The middle way as always.
    There are two dangers in the recovery period - doing too much and doing too little. I would predict that another dance class at the moment would probably knock you back again, but similarly I would predict that if you avoid physical activity all together and just decide to rest, your recovery will take longer.

    Of course without knowing your full medical history etc, I can't really give specific advice but I think the general key is little and often. Physically you're going to be weaker than you were a few weeks ago, when you were much more active. You need to build back up slowly. In an ideal world you would do a ten minute dance class four times a week to begin with. Once that has felt easier you would then do a 15 minute one etc., etc. That's probably not feasible, but doing an equivalent amount (for you) would, I think, help.

    When we say that people should "just keep going" this is only within the context of having established a routine that they feel they can cope with, i.e. a routine within their current physical capabilities. Some days this will feel more difficult than others; conversely other days it will feel too easy.

    The temptation then is to go and do far too much. This then sets them back in the following days, when they may find themselves doing much, much less. Doing much less makes it more difficult to then resume activity....and so on. It's to avoid this yo-yoing that we advise people to "keep going" with a routine that feels largely manageable.

    Clearly for you a dance class is a bit much at the moment, but find a level of activity that you do feel you could manage, and gradually build up on that. Hope it goes well.
    How can I improve my concentration?
    Eighteen months ago I was eventually given a diagnosis of fibromyalgia/cfs after several years of being told that my symptoms were either due to a virus or were linked to menopausal changes. I have some of the tender spots which might indicate fibromyalgia but the rest of the picture seems more like cfs.


    My biggest problem is trying to play the piano. My coordination which is relatively okay for 'normal' activities is inadequate, similarly memory and concentration. Is there any data or advice for practising musicians who don't wish to give up playing but find their level of capability so impaired that the familiar and often stated feelings of uselessness and hopelessness are never far away? Is there a time span for recovery or a way to gauge progress? I am actually trying to finish a degree course with performance exams coming up in the New Year?


    Is it worthwhile trying Enada to boost energy levels, does it have any affect on motor movements or coordination and would it have to be taken permanently? Finally are there any specialists, (preferably with some understanding of musician's special needs) in the Edinburgh area?

    Answer:
    I don't know about specific research, but both myself and my colleagues have all had musicians as clients, and there are some general points about concentration you may find helpful.

    Firstly the kind of mind/body hand eye co-ordination, the concentration etc. of tasks like playing the piano are often particularly exhausting and demanding. Dont be alarmed by this. Rather like we would suggest with building up walking or whatever, start of doing little and often...then build up as your concentration comes back.

    Have a look at how you are doing it. I get the impression that you are frustrated by the fact that you can't play like you used to, which is understandable. However this can be a bit of a trap. One can adopt the attitude that if I can't play like i did before, there is no point in playing at all or, I'll never be able to play well again. Like you say, this can make one feel quite hopeless and depressed.
    My advice would be to drop your standards in the sort term, to get them back in the long term. Play deliberately simple and easy things, play for just the fun of it. That way you'll play more often and in better spirits. Don't expect yourself to be good for while yet. You will get better again, and if you can remove your current frustration, you'll probably get there quicker.

    More generally we find that concentration catches up with fitness. The more people are able to do physically, in a gradual and paced fashion of course, the more they tend to be able to do mentally.
    Should I take anti-depressants?

    I have been advised to take 20 mgs of Prozac and gradually decrease Amitriptyline which I have now stopped but I am not sleeping very well can you advise.

    Answer:
    Obviously I can't give specific advice about your medication, however low does tri-cyclic, such as Amitriptyline has been found to be useful in CFS for regulating sleep and reducing pain. It could be that you are experiencing a temporary sleep disturbance due to withdrawal from it.

    If your sleep is still disturbed in about a month, try some of the tips on the sleep section (in fact try them now!). But, if after a month sleep is no better go back to your GP and ask for a review.
    Again I cannot comment on your particular case, but there is no particularly strong evidence that Prozac is useful in CFS unless one is also depressed, which is not uncommon.
    Chronic fatigue in children

    I've just been reading the self help guide and I can't believe some of what I have read. I have a son just been diagnosed with CFS. He was nine last week. His legs go all wobbly if he just goes for a short walk. We have night sweats every night.

    But he is really fighting this CFS and I think most children naturally would. How do you explain CFS in children. There are a lot of children out there with this and children don't naturally lie or put things on or get down or depressed. I really think the whole of the medical profession are letting these children down, the only thing we have been offered so far is anti-depressants which I have refused and some physio which we may have to wait 3 months for.

    Answer:
    Chronic fatigue in children is particularly distressing. Children often go for a long time without a proper diagnosis, or they can be dismissed as just trying to dodge school, or "only" being anxious. At our unit we are currently running a service for children and adolescents with Chronic Fatigue Syndrome. Soon we will be publishing a pilot study of our approach, which shows that the general approach outlined in these pages does work in children as well.

    As to how we explain fatigue in children, that's a difficult one. As with the adults we see, there is never an identical case history, but there are some recurring factors. Let it be noted that the following observations are anecdotal evidence, not hard fact.
    As with adults, we often see a history of stressful life events in the period leading up to the onset of fatigue. These can be moving house, starting a new school, the period leading up to exams, parental illness and so on. In addition to this we also often see that the children have been pushing themselves quite hard, or just doing rather a lot.

    Typically we will see children who are doing a lot of extra-curricular activity and who are often very good at least one sport. They may also be doing very well academically. This very active time may be going along fine for a while but, as with adults, there comes a virus which is often the straw that breaks the camels back.

    This then leads to a prolonged period of inactivity which, particularly in someone previously active, leads to fairly rapid deconditioning, which in turn means that renewed attempts at activity lead to symptoms at even lower levels of activity. Very quickly one can become trapped in a vicious spiral of fatigue and reduced activity.

    OK, so that's not a complete explanation. Every individual case is going to be different and yours may well have none of these factors. At our unit we always make sure that all reasonable investigations have been carried out to exclude any other possible cause of symptoms, only then would we begin treatment.

    The good news is, the spontaneous recovery rate in children is very high. By far the majority will be completely recovered within two years. However, two years is a long time to wait particularly if you don't know what's happening to your child. Getting a clear diagnosis is the first step of any treatment. Adopting a gradual rehabilitation approach with someone who knows what their doing - and a physiotherapist could be ideal for this - is the next.
    I've put on weight

    My specific question is that I seem to be caught in a vicious circle with body fat. I'm not fit enough to do vigorous exercise (my muscles ache from the moment I wake up, to varying degrees depending on how active I am and/or how aware of my aches I am). I'm now some 3 stones overweight (16st at 5'10") and mildly asthmatic, so now I need to lose weight but can't burn off the calories! I don't eat that much - partly due to financial pressures but partly to offset the weight problem, but I suppose I'm then in danger of not putting ENOUGH energy into me.

    If I could get a prescription for swimming I'd love it, but that's just wishful-thinking. I'd also enjoy going to a gym, but both these activities are costly for someone on a low income like me. One of the few things I can think of that might help is EMS (Electro-Muscular Stimulation) pads.
    Any suggestions you might have would be very gratefully received.

    Answer:

    It's a common problem. Many people with CFS put on weight - it makes sense. If you're doing less, but eating about the same (or sometimes even more) your going to be burning less calories. Three points to make on this one.

    Diets, on the whole, don't work. People tend to stick to them for a bit, lose some weight, drift off the diet, and then put it back on. Any food regime based on deprivation is probably going to fail. Don't eat less - eat well. More fresh fruit and veg, less red meat and fat, rice bread and potatoes for carbohydrates. Snack on fruit in between meals, and eat regularly throughout the day to keep blood sugar levels from yo-yoing (this can cause fatigue). This has been standard nutritional advice for some time now, and is likely to remain so, however many fads come and go.

    Point two is about exercise. Eating well and moderate exercise are the two proven ways of losing weight. Recent research shows that one of the most effective exercises - more effective than going to the gym a two or three times a week - is, wait for it, walking. Yep, a daily walk is probably the most useful thing you can do for yourself. Start of at a moderate pace and pick an amount of time you think you could stick to on most days (be that 5 minutes or 30). Do that for a couple of weeks. Once you're used to it, build it up gradually. Increase the pace slightly OR increase the length. Again give yourself a couple of weeks to adjust each time. It may be slow, but it will help. Keep a record of how much you could do at the start to remind yourself of how much you've improved later on.

    Third point. SOME doctors have the ability to prescribe exercise courses, if they think it will help in a rehabilitation process. Check with yours if you can. If you do it TAKE IT EASY. Start of slow and build up, exactly as you would with the walking.
    Flu Jabs, operations and colds

    I have had cfs for two years now, which was initially brought on by the flu. Is it a good idea to have the flu vaccine? I've been diagnosed as suffering with CFS which I have had for 8 months now.

    My flu like symptoms (nausea and joint pain) have now gone and the fatigue is not too bad. The symptoms that remain are muscle pain, and for the last 3 months muscle twitching. The twitchings are sometimes no more than a ticking sensation or ripples with no pain which last less than 30 seconds.

    I have read all the information on your very informative web site but I couldn't see any reference to the twitching symptoms I have described. I really want to use your plan for recovery but am concerned about the twitching and seek re-assurance that it is indeed safe to start. I would say that I am definitely stuck in the Boom and Bust cycle at present and am desperate to break out of it.

    I am also due to attend hospital as a day patient at the end of November for a minor procedure which requires a general anaesthetic, should this stop me starting the programme now?

    Answer:
    The Flu question is a common one - to jab or not to jab. IN MY EXPERIENCE of seeing clients, and my colleagues too, the flu jab has very little effect. It MAY make you feel a bit groggy for a couple of days, like having a mild cold, but you should handle it in exactly the same way - just keep going. On this note there is increasing evidence that recovery time from Colds and Flues is delayed by bed rest rather than sped up by it. Even with glandular fever recent research has demonstrated that graded resumption of activity is much less likely to produce prolonged fatigue than rest.

    And so to your question about minor surgery. It's always a good idea to go into these things with a routine already established. It's like having a basic level of fitness, you'll recover quicker. After the procedure (bearing in mind the surgeons specific advice) get back to a reasonable level of activity fairly quickly and you'll probably get over it sooner.
  6. Enid

    Enid Senior Member

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    I wish I could read all that Esther and the "psychologising" of anything ME (kind of self analysis) would put me back to bed permanently - but on the whole it does seem much more sympathetic and to ME/CFS being a real illness.
  7. Esther12

    Esther12 Senior Member

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    I think that most psychosocial researchers believe that a certain type of sympathy is an important part of communicating with patients (building an alliance etc), and don't think the above is really unusual in that respect. Just because their ideas have led to other medical staff being rude and dismissive to patients certainly doesn't mean that they think it's good to behave in this way!
  8. Snow Leopard

    Snow Leopard Senior Member

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    TL;DR. ;)

    I did notice the last bit
    Really?
    I hope they aren't suggesting people should return to work while they are still feeling ill, or I will send them an angry email (people who turn up for work while ill cause epidemics!).
  9. Enid

    Enid Senior Member

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    Yes I agree Snow Leopard - it's riddled with the problematic - only I know what I can or cannot do (sort of listening to the old bod) - of course one wants to be up and about and resume old activities doesn't everybody and common sense - the point with ME is not to overdo. Can't help thinking most of this writing is treating sufferers as idiots.
  10. Valentijn

    Valentijn Activity Level: 3

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    I wonder if he considers the muscle twitching that follows the muscle pain to be a "normal response" to exercise too ... and he completely ignores that part of the last FAQ :)

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