Book review of Dr Joe Fitzgibbon's Feeling Tired all the Time

[Orla]

Is it always possibly to do a tiny bit more?
Dr. Joe Fitzgibbon argues, based on research done on athletes, that some of the same principles apply to us as it does to these athletes. Athletes sometimes use a method of training where they increase speed, or length of training, just a little bit at a time, so that gradually over time they become better and faster. By doing it gradually it doesn't feel like a huge effort at any point in time, so it is easier in the long run to increase one’s stamina.

Dr. Joe Fitzgibbon seems to think that we can retrain ourselves using the same principles as athletes. So he argues that, no matter how bad we are, that we can increase our activity little bit by little but over time. He says:

"The implication for the profoundly fatigued is that they too can increase their output by tiny increments without doing themselves any harm, and these increments in activity can be further increased ever so slightly as time goes by" (p14) Feeling Tired all the Time, Dr Joe Fitzgibbon, 2001

Later in the book (in the chapter covering CFS) he reiterates this point saying:

"whatever the severity of your fatigue it is always possible to do just a tiny bit more". (p.263) Feeling Tired all the Time, Dr Joe Fitzgibbon, 2001

But there is evidence that patients with ME/CFS do have a limit to their levels of functioning. Patients may not be able to get over this limit by exercising, no matter how much they want to, and they might make their symptoms worse if they try to push through continuously.

For example, the overview of the Overview of the Canadian Consensus document on ME/CFS states

“It is essential that the patient does not exceed his/her endurance limitations or activity boundaries too often or too deeply because this can cause a severe, long-term relapse". (Source: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Clinical Case Definition and Guidelines for Medical Practitioners: An Overview of the Canadian Consensus Document 2005 ahmf.org/me_cfs_overview.pdf )

Elsewhere, two researchers Black and McCully wrote a piece about an exercise study they did with ME/CFS patients:

"our daily exercise program was accompanied by a worsening of CFS symptomology....The inability to sustain target activity levels, associated with pronounced worsening of symptomology, suggests the subjects with CFS had reached their activity limit." (Source: Black and McCully Dyn Med. 2005; 4: 10.)

The severity of ME/CFS can fluctuate, of course, over time, so patients can sometimes increase their activities. But their symptom levels can go up and down, so they might have to alter their activities based on this. There is a huge difference between altering activity levels based on how one is feeling, and how severe the symptoms are (Pacing), and trying to stick to a pre-planned timetable of graded exercise, and believing that one can definitely increase activities over time through following a set programme .

While the idea that a person can keep increasing their activities until they are better is very attractive, there is no evidence that this actually works in ME/CFS. I am hoping to post on the ME (or "chronic fatigue" as he calls it) chapter tomorrow. I had forgotten just how bad this book was until I started to re-read this review that I wrote a few years ago. A lot of people see him as an ME expert and think he is knowledgable and sympathetic on ME.).

 

[Orla]

Managing ME/CFS: what the book says
Though Dr. Joe Fitzgibbon recognises that people with ME/CFS often get sick after an infection, he seems to downplay the importance of immune, or organic biological, factors in keeping the illness going. He does mention a few interesting examples of immune dysfunction from research, but it doesn't seem to influence his overall management strategy very much. Basically he accepts a viral trigger in many cases, but he doesn't seem to accept that either a viral infection, or damage from a viral infection (or some other biological cause), might be the main factor maintaining the illness.

This is common amongst those who adopt the psychiatric view of ME/CFS. They often have to accept a viral trigger because of the evidence, but it doesn’t mean that they accept the illness as mainly biological.

He seems to think that abnormal perceptions, deconditioning (from lack of exercise), and activity avoidance, are the principle illness maintaining factors (i.e. that what keeps us sick are psychological and behavioural problems). He writes:

"There may be a difference between what made you ill (illness-precipitation) and what keeps you ill (illness-perpetuation). The fatigue inactivity/ deconditioning/fatigue cycle is a clear example of this" (p.271) Feeling Tired all the Time, Dr Joe Fitzgibbon, 2001

This is a view also held by those who hold the psychiatric view of ME/CFS. There is no evidence that this “cycle” exists or causes ME/CFS.

 

[Woolie]

. They keep producing studies that contradict some of their central tenants, or fail to produce expected results, then they just either ignore the results or shift to some other patient blaming theory.

Aye aye to that, @Orla!

 

[Orla]

Principles of Management

We really get to see Dr. Joe Fitzgibbon’s view on ME/CFS clearly in a section entitled Principles of Management (starts on page 256, Chapter 25). The second part of this section has a sub-heading "2. Verbalise your beliefs, fears, frustrations and expectations" (starts page 259).

Fitzgibbon seems to be following the advice of The Royal Colleges Report here. They encourage doctors to find out what patients think about their condition. This is so that the doctor can try to influence the patient’s views, and get them to follow a particular type of management programme. The patient might like to be asked about how they feel, and think it is out of respect and concern for them, but some doctors have these conversations so that they can try to get the patient around to their way of thinking.

Harmful Illness beliefs?

Fitzgibbon starts of section 2 by stating:

"There are two prevailing illness beliefs that are positively detrimental to patients with chronic fatigue [Orla – again he is using Chronic fatigue when he means Chronic Fatigue Syndrome]. The first relates to the respective roles of rest and exercise, the second to disease attribution." (p.259) [Disease attribution is what you think is causing your illness] Feeling Tired all the Time, Dr Joe Fitzgibbon, 2001

Fitzgibbon goes on:

"patients who believe in the importance of rest and the dangers of exertion, will avoid physical and mental activity, and will unwittingly deepen and prolong their fatigue. On a better day, they may undertake unaccustomed activity and thereafter succumb to post-exertional malaise (made worse because they are so out of condition). Such an experience will reinforce the catastrophic belief that exercise is harmful, and perpetuate the cycle of inactivity, post-exertional malaise, fatigue, and more inactivity. Patients with CFS therefore need to be encouraged towards gradual increments in activity. "But I was told to listen to my body", you may say; and I reply to that, respectfully, with the empowering suggestion that you can also train your body to "listen to your mind". (p. 259)[My emphasis throughout] Feeling Tired all the Time, Dr Joe Fitzgibbon, 2001

Again Fitzgibbon seems to be parroting views of the Royal Colleges Report here. They say

We are …concerned about such advice as the need to reorganise life to avoid unnecessary pressure, or to ‘listen to your body’. The Joint Report of the UK Royal Colleges of Physicians, Psychiatrists and General Practitioners on Chronic Fatigue Syndrome, October 1996

See also other quotes from the Royal Colleges Report in an earlier post.

Of course we all know if it was a question of mind over matter we would all be better ages ago. People's efforts to push through the symptoms, and force their body to do what they want but cannot, often leaves patients in a bad state.

There is no evidence that the vast majority of patients fit the above view (of being abnormally fearful of activity and of abnormally avoiding activity etc.). Dr. Abhijit Chaudhuri, Consultant Neurologist, responded to a similar view expressed elsewhere

"There is no evidence that patients with CFS demonstrate avoidance behaviour to physical activity as claimed". A Critique of the CFS Guidelines (Revised Draft 2001) Abhijit Chaudhuri DM MD MRCP(UK) http://www.ahmf.org/g-chaudhuri.html

Chaudhuri's piece is well worth a read, quite entertaining actually.

Interestingly, Dr. Joe Fitzgibbon (or anyone who holds this view) does not explain why patients that are so very fearful of activity suddenly go out and do too much. If we are really that afraid, to the point of making us ill, surely we wouldn't go out and do things in the first place? Or not very often? And what about all the people with ME/CFS who are moderately active and who do manage some exercise? Why are they still sick?

 

[Orla]

This post is just some comments from me about the deconditioing model of ME/CFS.

Deconditioning and post-exertional malaise (i.e. feeling sick after activities)

There is no evidence that "post-exertional malaise" is a result of deconditioning, as he implies above. In fact a few things go against this view point:

· Even people who are more mildly affected by ME/CFS, and able to manage some exercise regularly, have limits to what they can do, and experience post-exertional malaise/symptom flare-up if they overdo it.

· In ME/CFS, the worst of the post-exertional problems usually comes on about a day or so after the activity. As far as I am aware, in deconditioning, patients experience most of the symptoms straight away.

· In ME/CFS people often get flu-like symptoms such as sore throats and headaches, and their concentration and memory can get a lot worse after exercise. This is not what unfit, but basically healthy, people experience after they exercise. People who are unfit, but basically healthy, often feel energetic when they start to exercise regularly. Though they might have some mild muscle pain initially, this feels quite different from the pain people with ME/CFS get after overdoing it, and it goes away quickly enough once they get used to the exercise.

· Importantly people with ME/CFS can often remember how they used to feel after exercise when they were well, even if they were returning to doing exercises after a break (because of injury, illness, or some other reason). They know that the post-exertional malaise in ME/CFS is completely different to the sensation people, who are just unfit, get after suddenly doing a bit of exercise.

People don't get ME/CFS from sitting around, or even if they are immobilised for some reason like a broken leg, or paralysis, they do not get ME/CFS because of this. If deconditioning caused ME/CFS, then there would be loads of people getting it from having to sit/lie around for one reason or another. Most people get ME/CFS after infections, or occasionally immunisations, surgery, and some don’t know how they got it.

· But, if lack of fitness caused ME/CFS, then half the country would have it!

 

[Orla]

Are illness beliefs important in maintaining the illness?

Dr. Joe Fitzgibbon again parrots the psychiatric view of ME/CFS when he writes in this section on management:

“Disease attribution [Orla - this is the view you hold of what is making you feel sick] is important because there is evidence to suggest that those who strongly believe that their illness is purely physical have a greater number of symptoms, and have a poorer prognosis than those who are willing to explore the psychological aspects of their illness." [My emphasis] (p.259) Feeling Tired all the Time, Dr Joe Fitzgibbon, 2001

This again is a similar view to that in the Royal Colleges Report. They wrote:

“Several studies suggest that poor outcome is associated with social, psychological and cultural factors. These include the strength of belief in a solely physical cause for symptoms, untreated psychological distress, and the use of avoidant coping strategies”. The Joint Report of the UK Royal Colleges of Physicians, Psychiatrists and General Practitioners on Chronic Fatigue Syndrome, October 1996

Psychiatrist Simon Wessely and colleagues wrote similarly:

“A conviction of a solely physical cause for symptoms is the single most consistent predictor of poor outcome" Sharpe, Chalder and Wessely et al Gen Hospital Psychiatry 1997:19:3

Fitzgibbon does go on to admit that some patients could just be sicker, but still clings to the above idea.

Ellen Goudsmit (a psychologist who has ME herself) pointed out in a letter in Modern Medicine of Ireland in 1999:

"As for the notion that a belief in a physical cause is "one of the strongest predictors of poor outcome", this is supported by one seriously flawed study but at odds with at least three others [Ray 1997, Lawrie 1997 and Deale 1998]." E. Goudsmit. letter in Modern Medicine of Ireland, 1999

(Her letter was in response to an article in Modern Medicine of Ireland by Dr. Anthony Clare and Dr. Lynch promoting the psychiatric model of ME/CFS.).

 

[Orla]

Graded Exercise

Because Dr. Joe Fitzgibbon holds the view that many of us are engaging in unhelpful/maladaptive avoidance of activity, that causes or aggravates our condition, he advocates a programme of graded exercise to break this (alleged) vicious cycle.

Even though, on the one hand Dr. Fitzgibbon recognises that exercise intolerance is part of ME/CFS, he still advocates exercise as a cornerstone of treatment. For example he points out that ME/CFS patients' reaction to exercise is different from that of depressed patients

"physical exertion and sleep deprivation are guaranteed to worsen their symptoms - so much so, that if they do feel better after exercise, the diagnosis of CFS is untenable" (p.239). Feeling Tired all the Time, Dr Joe Fitzgibbon, 2001

But in spite of this he still advocates Graded Exercise to treat ME/CFS. This is because he is effectively accepting the psychiatric view of ME/CFS, that we just feel worse after exercise because of problems such as deconditioning or abnormal effort perception.

He says, in a few places in the book, that the muscles are basically healthy in ME/CFS patients, just deconditioned from lack of exercise. (See pages 265 and 16).

He goes on to say that

"Having said that, there is a suggestion that fatigued muscles fail to contract to their maximum, and that muscular activity leads to inappropriate biochemical and cardiac responses in the fatigued patient. This implies that there is a central interference with muscular function" page 16 Feeling Tired all the Time, Dr Joe Fitzgibbon, 2001

But don't worry, this won't lead him to think that this is an organic disease process causing this problem.

He waffles on for a bit about actions that are normally unconscious becoming conscious, and claims that this is why we experience greater effort perception than healthy people, which seems to be what he thinks is causing central "fatigue".

...the fatigued patient becomes conscious of unconscious activity. This is the basis of the increased sense of effort experienced by the fatigued. (page 16), Feeling Tired all the Time, Dr Joe Fitzgibbon, 2001

 

[alkt]

i would like to see any kind of scientific ie provable evidence that the conscious part of our brain has any physical ability to connect with our unconscious or autonomous brain activity , but generally speaking coffee table publications are all about making the purchaser feel superior to everybody else its why people with egos far larger than their actual level of intelligence get away with publishing such weak opinion pieces. why some people take these publications as serious medical or scientific documents says much about their unwillingness to educate themselves or sheer lack of real interest in the subject matter. or as I like to think any fool can write a book and some greater fools will buy it.

 

[Orla]

i would like to see any kind of scientific ie provable evidence that the conscious part of our brain has any physical ability to connect with our unconscious or autonomous brain activity , but generally speaking coffee table publications are all about making the purchaser feel superior to everybody else its why people with egos far larger than their actual level of intelligence get away with publishing such weak opinion pieces. why some people take these publications as serious medical or scientific documents says much about their unwillingness to educate themselves or sheer lack of real interest in the subject matter. or as I like to think any fool can write a book and some greater fools will buy it.

Yes he is full of shit (am I allowed to say that?). I would say this doc has a very inflated ego from what I have heard.

 

[Orla]

Information from elsewhere on problems with exercise and ME/CFS

Before going on to see what else Dr. Joe Fitzgibbon says about exercise programmes, it is interesting to see information on exercise intolerance/dysfunction in ME/CFS from elsewhere.

A study published in 1999 found that:

“..recovery [from exercise] is significantly delayed in patients with CFS. The results demonstrate that patients with CFS fail to recover properly from fatiguing exercise and that this failure is more pronounced 24 hours after exercise” Paul L. et. al European Journal of Neurology 1999:6:63-69.

Another study also published in 1999 found that there was a problem in the delivery of oxygen to the muscles "

The present study has demonstrated direct impairments in oxygen delivery in CFS patients compared with normal controls. These impairments were more clearly seen after exercise. The impaired oxygen delivery seen in the CFS subjects in the present study could result in reduced exercise capacity” [my emphasis] Source: McCully and Natelson, Impaired oxygen delivery to muscle in Chronic fatigue syndrome in Clinical Science 1999:97:603-608.

The Canadian Guideline Overiew on ME/CFS states:

"Research studies confirm that ME/CFS patients have different physiological responses to exercise than those who are healthy or depressed, as indicated in the chart on page 4. While not all patients exhibit all of these abnormal reactions, most exhibit some of them. Traditional exercise programs can provoke relapses. As much care must be taken in prescribing exercise as prescribing medication to ME/CFS patients" Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Clinical Case Definition and Guidelines for Medical Practitioners : An Overview of the Canadian Consensus Document

 

[Orla]

What Fitzgibbon says about Graded Exercise

In Dr. Joe Fitzgibbon’s book, in his Principles of Management section, the 4th subsection is titled, Early entry to a graded exercise programme (starts p. 264).

He argues that

"There are very few interventions which have been shown by clinical trial to be of benefit in CFS, but graded exercise is one of them. For this reason, a formal graded exercise programme should be initiated as soon as possible" [my emphasis] (p.264) Feeling Tired all the Time, Dr Joe Fitzgibbon, 2001

It should be noted that many of these studies on Graded Exercise are on "Oxford Criteria CFS", or patients with chronic fatigue, but not necessarily what we would call ME/CFS. As well as this problem, there are sometimes high drop-outs in the treatment sections of the trials (this could indicate that patients on the trial found the treatment, graded exercise in this case, intolerable). Another flaw with many of these studies is that they tend to only ask patients about symptoms like fatigue or anxiety and depression (so don’t check whether other symptoms improved or not after exercise).

They also often rely on information from questionnaires, rather than testing objectively how much activity patients are doing, and seeing whether their activity is really increasing or not on the programme. This is important, as sometimes patients cut out a lot of other activities in their lives in order to do a graded exercise programme, so they might not actually be doing any more activity overall. There is also a danger that some might lie about the amount of activity they are doing, as they might feel like a “failure”, or be worried about letting people down, if they cannot stick to the programme .

 

[Orla]

No warning regarding potential danger of GET

Graded Exercise Therapy (GET) has consistently been scored the worst therapy of all by patients in patient surveys. In the most recent survey [I wrote this review a few years ago], conducted by the ME Association in the UK in 2008, of the 906 people who tried graded exercise, 33.1% of people said they were made much worse by Graded Exercise, 23.4% of people said they were made slightly worse, (so overall 56.5% felt worse), 21.4% had no change, 18.7% improved and 3.4% improved greatly.

Another survey done of patients for the UK Chief Medical Officer Report (2002) found, of the 1214 patients who had tried graded exercise, 50% of patients found that it made them worse, 15% reported no change and 34% found it helpful. This was the worst scoring of any of the treatments tried in this survey.

But Dr. Joe Fitzgibbon gives the impression that Graded Exercise is perfectly safe for people with ME/CFS. For example he writes that even if people feel some worsening initially he assures them that this is temporary and will pass. For example he says:

"You can expect some discomfort, fatigue and muscle pain when you start off. You may also experience some transient worsening of cognitive impairment, but you will not do yourself any harm by following the prescribed programme" [my emphasis] (p.265) Feeling Tired all the Time, Dr Joe Fitzgibbon, 2001

Healthy people would not experience worsening cognitive function with exercise, at least not the way we do, and I think it even might improve some healthy people's cognitive function.

Again I think he is parroting the view in the Royal Colleges Report when he says this. The Royal Colleges Report says:

“Patients should be advised that such a programme of gradually increasing activity….may cause a transient (activity associated), rather than a persistent, increase in muscle fatigue and pain. Giving such information may help to reduce understandable patient anxiety about the consequence of activity, and may in turn reduce symptoms and improve compliance” The Joint Report of the UK Royal Colleges of Physicians, Psychiatrists and General Practitioners on Chronic Fatigue Syndrome, October 1996

[This is a polite way of telling the doctor how they can manipulate patients into doing what they want them to do, even though it makes the patient feel worse.]

This attitude about GET is one major problem I have with this book. Patients ought to be warned that a programme like this could make them worse, or that there is a good chance that they might not benefit. They should be entitled to informed consent, just the same as if they were taking a drug, or doing some other course of treatment. If patients knew there was a chance it could make them worse, if they found themselves getting worse and worse they might stop earlier and not just keep at it, before they had done any major damage.

 

[Orla]

Graded exercise even for the very severe

Dr. Joe Fitzgibbon does seem to think that even very severe people can undertake a programme as he writes:

"whatever the severity of your fatigue, it is always possible to do just a tiny bit more.. even in worse case scenarios" [my emphasis] (p.263) Feeling Tired all the Time, Dr Joe Fitzgibbon, 2001

It is important to note that no graded exercise study has ever been conducted on severe ME/CFS. Some patients say that they became severe after graded exercise programmes.

Sticking to the programme

One of the comments I find most worrying is that he says

"Maintain the programme, even on bad days" [my emphasis] (p. 265). Feeling Tired all the Time, Dr Joe Fitzgibbon, 2001

I do not think that this is helpful of realistic advice.

 

[Orla]

Consistency..….or not?

On the one had Fitzgibbon argues for a strict level of consistency in the person's activity from day to day e.g. by maintaining the programme even on a bad day, and he says

Do not exceed the prescribed exercise, even on good days. (p265) Feeling Tired all the Time, Dr Joe Fitzgibbon, 2001

This desire for consistency is one of the reasons he is in favour of doing a graded exercise programme at a gym. At a gym it is easier to measure what amount of exercise you are doing. (About using gym equipment he says

"they guarantee consistency between one work-out and the next. They also allow us to prescribe very accurate increments in exertion between one week and the next" p. 264. Feeling Tired all the Time, Dr Joe Fitzgibbon, 2001

But on the other hand he says (essentially contradicting the above statement):

"Any other activity you may wish to do outside of the prescribed programme is for your pleasure only. So if you fancy going for a walk in the park or a gentle swim, you can go - but you don't have to go. In other words, we make a clear distinction between graded exercise and the other activities of daily life" (p. 264) Feeling Tired all the Time, Dr Joe Fitzgibbon, 2001

Well, a person might make a distinction between a graded exercise programme and other activities in their own head, but exercise is exercise to the body. Your body cannot tell if the exercise is part of a programme, or just something you are doing separately from it. He cannot have it both ways. Either consistency is important to him, or it isn't.

[Since I wrote the above, I am wondering if this apparently contradictory idea is coming from some of his odd ideas about effort perception and the role of the subconscious? I wonder if, on some level, he thinks if we enjoy an activity, want to do it, and don't mentally feel that it is a lot of effort, that somehow will will be able to do it without any "pay-back". This is of course not an accurate reflection of the lives of people with ME. It doesn't matter whether we want to do an activity or not, or enjoy it or not, we still have limits to our activity tolerance. And you can often do something one day and feel ok then, and not feel the effects til the next day, so you need to judge tolerance over a few days and not just how you feel the day of the activity.]

 

[Orla]

Prioritising the exercise programme
He really emphasises the importance of the exercise programme as he tries to boost the patient’s morale
with little (annoying!) pep talks such as:

"As you take the very first step on the treadmill, you can say to yourself: "Right, I have now started on a physical rehabilitation programme. If I give this priority and if it is successful, it will lead me to full recovery'.(p.264) Feeling Tired all the Time, Dr Joe Fitzgibbon, 2001

As attractive as this idea is, I am afraid I remain sceptical that this will work for most patients. There is no evidence from research that these programmes lead to recovery in ME/CFS patients.

He seem to know that a lot of patients will find the exercise programme difficult and writes:

"We also appreciate that patients with CFS have higher perceived exertion scores than the healthy and are therefore being asked to put in a greater (sense of) effort to achieve these goals" (p.265) Feeling Tired all the Time, Dr Joe Fitzgibbon, 2001 .

Note that he is not recognising that it is actually more effort, just saying that we have a greater sense of effort.

He wants patients to prioritise their exercise programme over everything else. He mentions a case of a patient, approvingly, who, put:

"All her available energy went into her exercise programme. She spent the rest of the day either sitting or lying down (but not allowed to sleep)...Joan is what I called a heroine" (p.269) Feeling Tired all the Time, Dr Joe Fitzgibbon, 2001

which doesn't seem practical, realistic, or desirable to me. I wonder would someone like this be doing any more than an average ME/CFS patient, who was not having to crash out on the sofa/in bed from overdoing it?

Fitzgibbon mentions that Graded Exercise is sometimes used in other conditions (p265), but this point can be misleading. With other conditions people don't necessarily have the exercise intolerance the same way we do. Generally people with other conditions are getting other treatments, and with a lot of conditions they only follow an exercise programme after they start to get better, or after some other treatment has kicked in. They also don't necessarily expect these patients to stick to the programme on a bad day, or stick to it if it makes them feel worse, increases pain etc.

 

[sickanon]

If this Doctor believes the psychiatric view of CFS, how does he explain the swollen lymphanoids(glands in the neck)/sore throats that often accompany the condition? Surely those things aren't influenced by exercise in any way? Likewise with the pins and needles tingling (which seems to be related to the nerves)?

 

[Orla]

If this Doctor believes the psychiatric view of CFS, how does he explain the swollen lymphanoids(glands in the neck)/sore throats that often accompany the condition? Surely those things aren't influenced by exercise in any way? Likewise with the pins and needles tingling (which seems to be related to the nerves)?

I know, when the psycho-deconditioning theories are examined at all they fall apart. Our problem is that too many doctors and others never examine the theories.

As for explaining flu-like symptoms, I have met a few people with ME who were convinced of either GET or exercise as important for improving the ME. They often talk about having to stop the programme and reduce activity after a "flu". I think some of the time, at least, this is an ME flare-up and not necessarily another infection. I wonder if doctors think this also? So every "odd" or flu-like symptom is interpreted as an infection, or stress, and not part of the ME itself? I heard this so often from people who had been encouraged to exercise their way out of ME that I did think doctors were probably telling them this as an explanation for their symptoms.

Admittedly some of the time it probably was an infection, though even there the exercise could be partly "causing" it. I found myself, if I overdid it, I was more prone to infections (this was more obvious when I was a bit better and getting out more, but before I got my mobility scooter).

The patients always seem to think that they could not progress past a certain point in their exercise programme due to getting an infection and not the ME itself. This was often the explanation given for not making progress with the exercise programme. Though I think most of these gave up on the programme after a few years.

I have a few more comments on other sections in the book to come up. I got a bit side-tracked trying to follow the SMILE Trial fiasco and then the good news from the NIH.

 

[Orla]

Some comments from me on CBT for ME

The people who promote GET for ME/CFS often want to break the link between how we feel and our activity levels (pretty much the opposite of Pacing). They think this is important for our “recovery”. This is because they think that we are basically suffering from a psychiatric and behavioural disorder that involves: paying too much attention to our symptoms; a faulty perception of how we feel (we suffer from a “belief” that we have an illness); a faulty perception of how much effort it takes us to do things; restricting our activities too much based on this faulty effort perception; and restricting our activities because of irrational fears about exercise and activity.

So to break this cycle of faulty thinking and behaviour, they think it is important for us not rely too much on how (we think) we feel, and that we should follow a set programme of gradually increasing exercise/activity. We should follow this programme, even if we think we cannot, or feel worse because of it initially (because the only reason we feel worse is because of our faulty thinking and deconditioning, not because of an underlying physical illness).

They think that over time our stamina will get better, and that we will get used to doing more activities again. Eventually activities won’t feel like a big effort. So in this way we will basically get better and lead a normal life. Hopefully the patient will also stop worrying unnecessarily about their health, and stop thinking their body feels unwell, once they see they can have a normal life. [This is the theory].

Some advocate Cognitive Behavioural Therapy (CBT) to help this process along, to get the patient to think differently and be more inclined to stick to a graded exercise programme

 

[Orla]

What Dr Joe Fitzgibbon says in his book about CBT

Dr. Fitzgibbon doesn’t say much about CBT in his book, but does mention it positively as of possible use to some patients to address things like

“Unhelpful illness beliefs and attitudes”(p.275). Feeling Tired all the Time, Dr Joe Fitzgibbon, 2001

(This is very much in line with the psychiatric view of ME/CFS). He also says

“..some patients continue to report an increased sense of effort, even after they have made significant progress towards full recovery. CBT would be an excellent way to deal with this problem”(p.275). Feeling Tired all the Time, Dr Joe Fitzgibbon, 2001

The irony here is that he doesn’t see, or accept, that the patient is still unwell after following the exercise programme – that was supposed to get them better!

He goes on to say:

Think of it like this: you have been ill for a long time, and you've had to put in a great (sense of) effort to get to where you are now. However, in spite of the fact that you are now doing more and feeling better, you are still used to thinking in terms of the illness. Consequently, the thought of engaging in a given activity evokes subconscious memories of effort, and with them a certain foreboding. CBT will help you change both the perception and the foreboding by helping you to think in terms of your present health and well-being rather than dwell (even subconsciously) on the past illness. (p 275) Feeling Tired all the Time, Dr Joe Fitzgibbon, 2001 .

@Woolie Does CBT normally deal with the unconscious? I thought that was a Freudian thing.

I love the way that post-exertional malaise gets re-defined as the person just having a greater sense of effort. It is a great get-out clause for doctors. Then with the added subconscious stuff, it is hard to defend against it (at least to a doctor who won't listen).

 

[Woolie]

@Woolie Does CBT normally deal with the unconscious? I thought that was a Freudian thing.

Yes, the "B" in CBT allows for some unconscious mechanisms. The B stands for Behavioural, and it refers to any intervention that uses rewards, punishment or learning theory more generally to help people overcome bad habits.

So a prime example is the standard CBT treatment for spider phobia. You slowly expose the person to spider paraphernalia in a relaxed environment. The idea is that you're supposed to be breaking down the pairing between the spider stimuli and fear, and creating a new pairing of spider stuff and nice feelings. So there is no need for the person to even be aware of what's going on for it to work.

In case you care, the spider treatment works on the principles of classical (pavlovian) conditioning. That's the one about pairing of stimuli with particular types of emotions and responses. The other type of learning principle, the one that involves punishing bad behaviours or rewarding good ones, is operant conditioning.

But to me, there's still something odd about what Fitzgibbon says. I don't think it makes sense to say "dwell (even subconsciously)". The idea of dwelling on something - the meaning we all understand by that term - involves awareness that we are doing so.