Psychiatric Theory in practice: Liverpool CF/CFS Clinic Patient handout

Orla

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Muscle pain and summary of effects of rest

III. Muscle Pain

Muscle pain after exercise is a common experience in CFS and is a result of muscle deconditioning. (p15)

Summary of the Physical Effects of Rest and Reduced Activity

5. Prolonged rest can cause visual problems, sensitivity to noise, unsteadiness, dulling of mental powers and feeling hot and cold. (p16)

7. Fortunately, all of the changes listed above can be reversed by a therapeutic activity programme. (p16)
 

Dolphin

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Well, if that individual feels helped by it, more power to them and I wouldn't push ask them further as it might cause them distress. They've probably come to some mental acceptance of their illness much like people with other chronic illnesses. But, different from CFS, many people with other chronic illnesses who accept their illness nevertheless still consider themselves ill.

A large problem with many studies that look at improvement or recovery in CFS is that they don't define these terms well and often use only subjective meaures; when measures like "return to full-time prior work" or "ability to do things comparable to those of your age/sex who are healthy without any symptoms or relapse" are used, the % recovery/ improvement is much less.
Good point, Hope123.
 

Orla

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Chapter 3: Sleep, the Body Clock and CFS

Chapter 3, Sleep, the Body Clock, and CFS.

As the symptoms of jet lag are so similar to those of CFS, circadian rhythms have been investigated in CFS patients (p18)
[Orla - I find it really annoying, and misleading, that they are comparing jet lag to ME/CFS.

On Page 18 they talk about people not doing their normal routines when they get a virus and this is supposed to be leading to a gradual slipping of body rhythms.

On page 19 they go on to talk about stress also affecting body clock.]

A stressful life event or an accumulation of persistent stresses can cause worry and arouse the nervous system of the body, which leads to a disturbed sleep. (p19)

Once body rhythms are out of synchronisation CFS symptoms are maintained (p19)
Then they talk about cortisol levels.

There is research that shows some CFS patients have a lower level of cortisol (p35).
[They say this has also been found in shift workers and healthy people who have bed rested for more than 3 weeks.]

No disease has been found and it is thought to be caused by disrupted sleep and social routine that occurs in these conditions (p19)
[Orla - i.e. it is a behavioural problem, similar to that seen in healthy people who get into bad habits. They recommend against taking cortisol]

The restoration of regular sleep patterns, social routine and exercise are recommended to rest the body clock and resynchronise body rhythms in jet lag, shift work and bed rest.(pP20)

The hormonal changes seen in CFS can be reversed by regulating disturbed sleep patterns and gradually building a regular activity pattern. (p20)
[They talk about some study where the sleep of healthy people was disrupted so that the healthy people’s sleep patterns were similar to CFS patients (whatever that would be) and they say they got various symptoms including muscle aches and poor concentration. They go on to say..]

This shows that a disturbed sleep pattern can cause the symptoms of CFS but that these symptoms are reversible. (p21)
[Orla - so now a little bit of sleep deprivation is like ME/CFS??].

Being deprived of sleep and inactivity cause an increase in the feelings of effort and fatigue when performing activity or exercise (p21)

Research shows that regular exercise

Promotes deep sleep


Those who exercise regularly have more deep sleep than unfit subjects ( p21)

The beneficial effects of exercise on sleep seem to be short lived so to maintain improved quality of sleep, exercise has to be done regularly (p21)
[orla - So no slacking now. I think they are referring to research done on healthy people, or the general population, not people with ME/CFS.]

Summary of Sleep research

Research has shown that if healthy people have a disturbed night’s sleep, they too complain of CFS symptoms, but these symptoms subside as the clock is reset with regular sleep and activity patterns (p22)
 

Orla

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Chapter 4: Increased Nervous System Arousal and Adrenaline

Chapter 4: Increased Nervous System Arousal and Adrenaline

In CFS, the nervous system is frequently aroused in response to:

...Physical deconditioning
Frustration with a limited lifestyle
Fear about symptoms
Scepticism of others ( p23)
[Orla - They mention hyperventilation on p24 and basically try to put symptoms down to this, including sore throats, muscle spasms, and light and noise sensitivity!]



Effects of overbreathing on the body

..chest pain or discomfort, which is not related to heart problems.
[Orla - They list symptoms which can (according to them) be caused by overbreathing, like dizziness, blurred visions, including increased sensitivity to light and noise. Of course there can be other reasons for these symptoms. And then a real gem..]

Feeling faint is misleading because overall blood pressure is high in stress (You only faint when your blood pressure is very low) (p24)
[Orla - Of course in ME/CFS many patients have low blood pressure on standing, or unstable blood pressure, problems with blood flow etc. so feeling faint is not the result of stress and they do need to sit down.]

5. Muscle tension

There is an increase in the tension in the muscles to prepare them for action. This can cause local aches, pain and fatigue. (p25)
[now muscle problems are being put down to stress, basically, but don't worry, they haven't forgotten deconditioning]

In CFS, the muscles are already deconditioned and predisposed to muscle ache (p25)

However, physical activity does release the muscle tension produced by nervous system arousal and adrenaline
[Another example where they are taking something that might apply to the healthy population but using it in a way that makes it look relevant to ME/CFS patients.]

8. Sleep disturbance
Adrenaline is an arouser that disturbs sleep and can lead to nightmares and emotional sweating (p25)
[Night sweating is now put down to emotional issues]

9.Concentration and memory

Individuals may experience problems with concentration and memory
[So now concentration problems are the result of stress, and also lack of activity as mentioned earlier]

Facts to be aware of:

At stressful times...these physical sensations can be intense and more noticable. Because of this fact it is possible to misinterpret them as signs of a serious disease (especially when you have no explanation of your condition). Fears that it could be a serious disease trigger further nervous system arousal and its sensations. (p26)

In fact, these sensations are the signs of a normal bodily process that serves a protective function at times of mental and physical exertion. (p26)
[Orla - !!! Your symptoms are normal, and it is only your ignorance and abnormal illness beliefs that have you thinking otherwise]

When, because of lack of information, these sensations are misinterpreted and seen as threatening signs of illness or even impending collapse, further anxiety is triggered. (p26)
[Orla - your ignorance is leading to more symptoms]

Nervous system arousal and adrenaline mimic ‘flu-like illness’

...the individual may sometimes presume that they ‘are coming down with a virus’ and may limit or avoid physical activities. (p26)

However, physical activity releases muscle tension (p26)

Misinterpreting physical sensations as signs of disease can trigger further nervous system arousal. This leads to a worsening of symptoms. (p27)

Life Stresses
..such difficulties can perpetuate the condition
(p28)
I am scanning in page 27 as it has a nice little diagram "explaining" some of our symptoms and problems, and I just know some of you are misinterpreting physical sensations as signs of disease!

 

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Orla

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Chapter 5. The Vicious Circle of Chronic Fatigue Syndrome

Chapter 5. The Vicious Circle of Chronic Fatigue Syndrome

How do you get trapped in the vicious circle of CFS?

...with a virus or being ill we reduce what we do resting and sleeping more.....over time, reduced activity and periods of rest lead to physical deconditioning...As a consequence of this, activity peformed at pre-illness levels leads to physical symptoms...

The less you do the less you are able to do

...The trigger factor has long since gone, but it has started a vicious circle into which you have unknowingly entered and its symptoms are controlling your life (p29)
I have scanned in page 30 which has a diagram of The Vicious Circle of CFS.



Why doesnt every body that has a virus get CFS?

Research shows that there are other factors involved besides an infection or illness. (p31)

Before becoming ill CFS patients tend to be fit and active

This is important because:

Those who are fit expect to do their activities without undue symptoms

When fit, active people rest for even the short periods of time described above, they start the process of physical deconditioning

This reduces their ability to exercise more than inactive people (p31)
[Orla - ??????]

Consequently, they notice the unpleasant symptoms of physical deconditioning more than those who are habitually inactive (p31)

[Orla - they are ignoring the fact that if someone has been active they will know the difference between a normal reaction to exercise and an abnormal one. Earlier there was a little lecture about how athletes would interpret muscle pain, at the beginning of fitness training season, as a sign of being out of condition, which would go away as they got fitter (p15). Now all of a sudden, even though many CFS patients were previously active, they dont know the difference between being a bit unfit and symptoms of illness]
 

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talkingfox

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Orla, I recently saw a training video for GP's in teh UK that pretty much outlined everything (except the 'research ' stuff) that was in the booklet.

I've retitled the thing "How to Make Your Patients Shaddup and Drink the Koolaid"

It was oh so chillingly polite with one of the more frightening undertones I've ever heard. It was training physicians how to discount anything the patient said in the most cordial way.
 

dancer

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Chilling is the word, all right.
ARGH!
Terrifies me and makes me never want to go near a doctor again.
Seriously, even subtle undercurrents of this sort of drivel is what made my course of CFS/ME worse. After my mono wouldn't improve, and docs began throwing around the term CFS, I read up on it and determined I would NOT get deconditioned. I pushed myself... limping along on a treadmill daily, fighting not to pass out, ignoring the "perceived pain".... and I got worse and worse.
This "blame the patient" false assumption stuff drives me absolutely crazy.
 

Orla

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Chapter 5 continued

3. Personality Style

Personality style is also important.
Patients with CFS often report the following qualities:
..Hardworking...A dislike of being ill
[Orla yes, that is right, dislike of being ill seems to be something worth noting, as if it is a predisposing factor. Does anyone know anyone who likes being sick? What they are getting at is the idea that people returned to work etc too soon after they got sick, because of our disorderd personality. Of course a lot of people are under pressure to return to work or school too soon, or do too many hours too soon etc., thanks to government policies that are partly influenced by people who hold the psychiatric view of ME/CFS. Also contrast the seeming sympathetic tone of the above with what Pauline Powell and colleages (2002) have written in publications, which I quoted in the first page of this thread:

"Poor outcome was predicted by membership of a self-help group, being in receipt of sickness benefit at the start of treatment"

"Conclusions: Poor outcome in the psychological treatment of chronic fatigue syndrome is predicted by variables that indicate resistance to accepting the therapeutic rationale, poor motivation to treatment adherence or secondary gains from illness."

Predictors of response to treatment for chronic fatigue syndrome RICHARD P. BENTALL, PhD, University of Manchester ; PAULINE POWELL, PhD and FRED J. NYE, FRCP, Royal Liverpool Broadgreen Trust ; RICHARD H. T. EDWARDS, FRCP (retired).
The British Journal of Psychiatry (2002), 181: 248-252, http://bjp.rcpsych.org/cgi/content/full/181/3/248 ]

The combination of:
1. Activity and fitness before CFS
2. Pressures
3. personality style
can all be factors that contribute to the development of CFS at times of illness or persistent stress
( p32)

Patients who are used to feeling fit may worry about the cause of persisting symptoms (p33)

Worry and frustration automatically trigger increased nervous system arousal and adrenaline production that causes more intense physical symptoms (p33)
[Orla, so our stupidity causes us not to know the difference between being unfit and sick, and then our "worry" about these symptoms causes more symptoms that make us worry even more.]

I have scanned in page 34, The 3 Box Model of Chronic Fatigue Syndrome: The Causes of Symptoms. It is basically a summary of their thinking of the cause of CFS. I underlined one thing in pencil myself (just making clear that that was me underlinging it and not them, mind you it is something they go on about and emphasise themselves).

 

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Dolphin

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Orla, I recently saw a training video for GP's in teh UK that pretty much outlined everything (except the 'research ' stuff) that was in the booklet.

I've retitled the thing "How to Make Your Patients Shaddup and Drink the Koolaid"

It was oh so chillingly polite with one of the more frightening undertones I've ever heard. It was training physicians how to discount anything the patient said in the most cordial way.
I've just started a thread on those videos at: http://www.forums.aboutmecfs.org/sh...English-GP-s-on-how-to-deal-with-CFS-patients - maybe you could repost your message there or say something similar.
 

Orla

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Chapter 6 How Understanding CFS Can Help You Get Better

Chapter 6 How Understanding CFS Can Help You Get Better
I have scanned in page 35. It is worth looking at to see their attitude. Again I have underlined things in pencil (I was doing this for myself as I was reading it. Normally I was underlying things which were particularly interesting or bad. There was so much rubbish on this page that most of it is underlined!)



you may believe that you have a serious physical disease (p35)
They talk about some patients over-resting. But then also they also find fault in the behaviour of those who don’t rest!

Some feel that, as most of the time they are not resting and are in fact active, the vicious circle of CFS does not necessarily apply to them.

If this is how you feel it may be helpful to look closely at the pattern of your activity (p36)
[Orla – in other words, if the evidence of your life shows our theories are rubbish, instead of changing our theories, we will just try to get the patients to reinterpret their life to fit in with our theories.]

Looking at the pattern of your activity

In time, limiting activity, irregular activity and periods of inactivity result in partial physical deconditioning (p36)
[Orla - So even if you are active, and not really deconditioned, you are]

activity should be done on a regular daily basis (p36)
[Orla - no slacking now]

Are the intense physical symptoms signs of persistent virus or serious hidden disease? (p37)
[Orla -No prizes now for guessing the answer]

The medical research evidence shows:
no virus persists
no signs of muscle disease
no underlying serious disease

The medical evidence indicates that the intense physical symptoms are due to

disturbance of body rhythms including a sleep disorder
muscle and cardiovascualar deconditioning
increased nervous system arousal and adrenaline production


Fortunately, unlike other chronic conditions, it is possible to reverse the effects of muscle and cardiovascular deconditioning and resynchronise disturbed body rhythms(p37)
[Orla - You don't have a real disease or medical condition, just the effcts of stupidity and laziness]

Through understanding the changes that have occurred in your body based on the medical evidence in this booklet, you can reverse the process.

Instead of CFS controlling you, you can start to regain control of your body and your life. (p37)
[Orla - we hope you are buying into our propaganda so that we can convince you to do GET. I will post up some information from the second half of the document, the treatment section later.]
 

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Orla

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Hi dancer and talking fox, yes this stuff is pretty Chilling allright, and I kept thinking of parts of that video also.

Orla
 

Orla

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Part 2: The Treatment plan for Recovery: How to get better

Part 2: The Treatment plan for Recovery: How to get better

For this treatment to be successful, determination and motivation are required (p39)
[Orla - So if you are a really good patient, and really want to get better, you will do what you are told. As a bonus can feel superior to other patients who are just wimps for not sticking to the programme]

With an understanding of how you became trapped in the vicious circle of CFS, you will be able to see the logic of the prescribed treatment plan (39)
[Orla - I'm not sure that the word logic should be abused by appearing anywhere in this document!]


It will take considerable time but the steady effort you put in will gradually be repaid in the form of sustained recovery.
You will experience a snowballing effect as increasing fitness leads to increasing confidence in your ability.
You will have conquered CFS by your own effort and you will be back in control of your body again. (p39)
[Note how definite they are that if people stick to the plan they will recover. No qualifications, hesitations, or balance.

Here they are, putting the responsibility of recovery back on the patient. A quote here from a published paper to illustrate this way of thinking:

“An important task of treatment is to return responsibility to the patient for management and rehabilitation without inducing a sense of guilt/blame or culpability for his/her predicament.”

Sharpe M, Chalder T, Wessley S et al, Chronic Fatigue Syndrome: A Practical Guide to Assessment and Management, General Hospital Psychiatry 1997:19:3:185-199.
http://www.kcl.ac.uk/content/1/c6/01...Sharpe1997.pdf ]
 

Orla

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Chapter 7. The Right Thoughts for Recovery

Chapter 7. The Right Thoughts for Recovery

There is a link between thinking, feeling and behaving (p41)

If you have not been given a definite answer from your doctor about what is wrong with you, and not had an explanation for your symptoms, you probably feel worried and threatened by them. (p42)

That can lead to unhelpful and inaccurate thoughts about your symptoms and condition (p42)
[They want to get into the patient's heads, and want to get the patients to accept psycho-social explanations of symptoms. Some psycho-social comments on this issue, from elsewhere:

CFS is dogged by unhelpful and inaccurate illness beliefs, reinforced by much ill-informed media coverage; they include fears and beliefs that CFS is caused by a persistent virus infection or immune disorder Chronic fatigue syndrome: an update Anthony J Cleare Simon C Wessely Update 1996:14 August:61


Social factors appear to play a role in CFS... Another potentially important social factor is the availability of misleading information about the illness. Both self-help books and the media have tended to emphasize 'medical' explanations for the symptoms of CFS at the expense of more psychiatric or psychological conceptualizations. Physicians may also unwittingly contribute to this process"

Chronic fatigue syndrome and occupational health A Mountstephen and M Sharpe, Occup Med 1997:47:4:217-227 http://occmed.oxfordjournals.org/cgi...tract/47/4/217

Whatever their biological basis, there is strong evidence that symptoms and disability are shaped by psychological factors. Especially important are the patients beliefs and fears about their symptoms. Research in several functional syndromes has found that a strong belief and preoccupation that one has a medical disease and a helpless and passive attitude to coping is associated with persistent disability...Some persons appear to exaggerate symptoms but this is often hard to prove.

Although harder to research, social factors are almost certainly of great importance in shaping functional illness. Relevant factors include the information patients receive about the symptoms and how to cope with them. This information may be helpful or may stress the chronicity of the illness and promote helplessness. Such unhelpful information is found in self-help (!) books and increasingly on the Internet (see for example www.meassociation.org.uk). Unfortunately, doctors and especially specialist private doctors and complementary therapists may be as bad."

Functional Symptoms and Syndromes: Recent Developments. Michael Sharpe, Trends in Disability 2002, UNUM. This report can be downloaded here http://tinyurl.com/29f8w


....all the ME books draw on immunology, virology, allergy,and AIDS where needed (which, in the case of AIDS, should be never)...A little more psychology and a little less T-cells would be welcome What your patients may be reading Wessely S BMJ 1989:298:1532-1533. http://www.jstor.org/pss/29704265 ]

[Back to the Liverpool handout below]


Therefore your thoughts are of extreme importance to your recovery
[Orla - extreme?? Well I suppose they have to justify all that CBT/brainwashing somehow!]

At the start of treatment unhelpful thoughts can put you off difficult parts of treatment, especially gradually controlled activity, setting back your recovery.
[Orla - A few quotes from elsewhere that illustrate background to this sort of thinking:

Research suggests that catastrophic or dysfunctional beliefs are common in CFS and are related to disability. Such inaccurate beliefs might fuel avoidance of activity.... 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 (such as reducing activity and/or dietary, social and other restrictions)". Royal Colleges Report, UK, 1996.

Dysfunctional cognitions are not sufficient to account for prolonged disability; their importance is linked to the development of maladaptive behavioural patterns. A vicious cycle of pain, misery, avoidance and inactivity is established" Simon Wessely, Sue Butler, Trudie Chalder and Anthony David, in Post-viral Fatigue Syndrome ed. Jenkins and Mowbray, 1991]


At first it may be difficult to spot unhelpful thoughts because....they appear to be logical so you accept them. (p42)
[Orla - Classic!]

Identifying unhelpful thoughts

Think of an occasion when your symptoms were very bad
Write down what you were doing and a list of the symptoms. Try and remember the thoughts that went through your mind at the time.

Ask yourself how those thoughts influened your feelings and behaviour.

Were the thoughts helpful?
Were they based on accurate information?
Did they lead to you to do something which could have slowed down your recovery (p42)
[Orla - Judging by the rest of the booklet, resting, because of feeling awful, comes under the category of unhelpful thoughts and behaviour. There will be more about unhelpful thoughts below (and "nice" little suggestions of alternative thoughts]
 

Orla

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Chapter 7 continued

Look at the evidence for and against your unhelpful thoughts

Most of the time people only look at the evidence that supports their thoughts (p43)
[Orla - This has to be the funniest sentence in the whole booklet. They ignore the biomedical evidence that points to an organic medical condition, but they criticise patients for not challenging their thoughts enough!]

Dont be afraid to challenge yourself (p43)
[Do as I say but not as I do?]
 

Orla

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Chapt. 7 continued (v. interesting re medical testing)

Because of continuing ill health, they wonder whether their symptoms are due to the original problem or the sign of yet another serious medical disease.
It can be very difficult in this situation to believe that there is nothing serious going on in the body. However, having been diagnosed as having CFS, it is advisable for such people to consider the following:

The original problem has been dealt with
Further medical tests have shown nothing abnormal
The body has a natural tendency to heal (p43)
[Orla - This passage shows how important it is for patients to have some abnormal test results. Otherwise they cannot prove that there are ongoing organic medical factors causing their symptoms, and they can be treated like they are just a bit silly/hypochondriacal for thinking there is something wrong with them.]

Reassurance
For some people anxiety about health can be related to such a traumatic medical history.
They seek frequent reassurance.
They request more and more medical tests to rule out possible disease.

If a sympathetic doctor performs yet more invasive medical investigations that in itself can be viewed by the patient as confirmation that the doctor also believes there is something seriously wrong with them. This can confirm the patients own fears about their health.

However medical tests, verbal persuasion and reassurance only give a temporary reduction of the patients anxiety and preoccupation with health.

In this situation it is advisable for the indidividual to look at all the facts:

If all the investigations persistently come back negative
If reassurance given by medical investigation is only short lived

The individual maybe falling into the trap of requesting more medical investigations to relieve their anxiety and not because they are medically required (p44)
[Orla - these people are adopting he typical psycho-social view that medical tests should be limited, and that doctors running a lot of tests can contribute to the problem of ME/CFS patients thinking that there is something physically wrong with them. Here are some other examples of this way of thinking, from elsewhere (which will hopefully show how dangerous these people are to us, and how they hamper progress in the medical arena):

..In most cases of chronic fatigue, few laboratory investigations are necessary. All patients should have a psychiatric history taken and their mental state examined.... The psychiatric assessment should be systematic... It is our experience that delay in diagnosis resulting in long periods off work and referral to multiple 'specialists' should be avoided as they can entrench illness behaviour [Orla - my emphasis]
Chronic fatigue syndrome and occupational health[/U] A Mountstephen and M Sharpe, Occup Med 1997:47:4:217-227 http://occmed.oxfordjournals.org/cgi...tract/47/4/217

"we feel that routine testing for such variables is more likely to result in iatrogenic harm than good. There is currently no diagnostic test or pattern of tests that can assist in the diagnosis of CFS. [Orla -my emphasis]
Sharpe M, Chalder T, Wessley S et al, Chronic Fatigue Syndrome: A Practical Guide to Assessment and Management, General Hospital Psychiatry 1997:19:3:185-199
http://www.kcl.ac.uk/content/1/c6/01...Sharpe1997.pdf

"Unless their are pointers in the history or examination, detailed laboratory investigation in largely unheplful in anyone with fatigue lasting more than six months.....Studies of selected samples of patients have revealed changes in some parameters, such as antinuclear factor immune complexes, cholesterol, immunoglobulin subsets and so on; these are encountered only in a minority, are rarely substantial, and do not lead to any particular form of clinical management. Their significance is for researchers rather than clinicians. There are no laboratory tests that establilsh or cofirm a diagnosis of CFS, and none should therefore be performed for that purpose [Orla - my emphasis] Royal Colleges Report, UK, 1996.

".... Innovative service developments such as joint medical-psychiatric clinics and dedicated liaison psychiatry and psychology services will provide for patients who require more intensive treatment. Finally, the small but conspicuous group of patients who present with recurrent and multiple physical symptoms will be given proactive and coordinated care aimed at limiting unnecessary medical intervention and preventing iatrogenic harm. " [Orla - my emphasis]

BMJ 1997;315:561-562 (6 September), Richard Mayou, and Michael Sharpe.

Editorial: Treating medically unexplained physical symptoms Effective interventions are available
http://www.bmj.com/cgi/content/full/315/7108/561 ]
 

Orla

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Chapt. 7 contin. Anxiety and Panic

Anxiety and Panic

...If you are worried about certain sensations you scan your body for them.
Once noticed, these sensations may be taken as further evidence of some serious physical disorder (p45)
[Orla - Notice the use of the word "sensations", rather than symptoms. I have read psychiatric literature talking about ME/CFS patients being hypervigilant to bodily sensations, and misinterpreting normal bodily sensations. Basically they are saying that we are imagining we have symptoms of illness when we don't.]


....For some people being trapped in this vicious circle can lead to an attack of panic... (p45)

Interpreting the intense physical sensations of increased nervous system arousal and adrenaline in an unhelpful way (thinking that they are more dangerous than they really are or that they are going to harm you in a catastrophic way) leads to panic (p45)
[Orla - so your worry causes you unpleasant, but not serious, physical sensations, and then these sensations in turn cause you to worry even more - basically it is a vicious cirlce of unhelpful thoughts causing symptoms, and these symptoms then cause even more unhelpful thoughts]

Sometimes it's hard to tell the difference between the body sensations that trigger the attack and the sensations of the panic attack itself.

In that case, it's difficult to pinpoint the cause of the attack.

This can led to the unhelpful thought that the attack has come out of the blue and is due to serious physical disorder, which is not the case. (p45)
[Orla - Once again they are telling us that we don't have a serious medical condition]
 

Orla

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Chap. 7 Contin. Unhelpful thoughts and alternatives (!)

I have scanned in pages 46-48, and put them below. They have boxes for Symptoms, Unhelpful Thoughts and Alternative Thoughts, which are worth reading just for a laugh (again some things underlined by me).

They keep banging on about building up activity in their "Alternative" (i.e. helpful/"correct") thoughts section. So whatever symptoms you have, GET is the answer.

I will quote some of this stuff here to give idea as to the stupidity of some of their ideas.

Main body symptoms
Faintness, feeling unreal, breathlessness dizziness

Unhelpful thought
I'm going to collapse

Alternative thought
No, I'm not going to collapse.
I know you need a drop in blood pressure to faint and when I'm anxious my pulse racces and my blood pressure actually goes up.
...ths feeling doesn't mean I will faint because my overall blood pressure is up, not down
[Orla - of course many people with ME/CFS will have low, or unstable blood pressure, on standing, and possibly other (organic) problems to do with standing, so it is not unhelpful of them to interpret their symptoms as a problem and to sit down.]

Main Body Symptoms
After gardening
I had muscle pain and fatigue

Unhelpful thought
My muscles hurt because I've done too much
I must do less

Alternative thoughts
My muscles hurt because I haven't done this for a time
They need regular activity to build them up
[Orla - they see symptoms as a sign of deconditioning not disease, and because of this they are giving appalling advice here]

Main Body symptoms
During and after a busy day
I feel awful....

Unhelpful thought
There must be something seriouly wrong with me....

Alternative thought
I feel tired and ache because I did too much
[Orla - didn't they just tell us a minute ago that this last thought was an unhelpful thought? It is handy though, they can interpret exactly the same thought as helpful, or unhelpful, as it suits them. Heads we win, tails you lose.]

Main Body Symptoms
After a few weeks of the activity plan
I feel fed up because I still feel tired with some muscle aches and dizziness

Unhelpful thought
I hardly feel any better and I'm really working a my activity and rest plan

Alternative Thoughts
I know research has shown that with inactivity my body has got physically unfit very quickly...it's logical that it will take time to build up my body again
Main Body Symptoms
After Exercise
I feel like I am relapsing

Unhelpful thoughts
Last time I tried to exercise I became really bad.
Activity or exercise just makes it worse.

Alternative thoughts
Resting hasn't made me better in the past and I don't know if I'll get better or worse doing a gradually controlled activity plan unless I try it. However, others have recovered in this way.

Pain is normal if i exercise when I'm so unfit. But if I keep on exercising at the right level, I will build up stamina and fitness as an athelete does and pain will slowly disappear
[Orla - we wish. There is no evidence for this view. Notice that they are comparing ME/CFS pain with the normal exercise pain an unfit person would get.

I just love the manipulation on the rest and recovery thing. Just because one may not recover with rest, doesn't mean it hasn't a place in management (even they advocate rest periods elsewhere in the document, mind you it is rest but not as we know it!). Most people mark rest as one of the things they found most helpful. A survey (n=2338) conducted for the UK Chief Medical Officer's working group on ME/CFS found that Rest was considered the most helpful strategy, with 91% finding it helpful.

As for saying others had recovered through GET, this is the clinic where they say people are recoverd when they are not.

And one doesn't necessarily have to do GET before deciding whether it is likely to he helpful, useless or harmful. If one is already doing what one can, and not phobically avoiding activity, has flu-like symptoms etc, then there is no evidence that GET is useful (well there is no good evidence it works for ME/CFS at all actually, if one looks at the objective data). And a person can also look at the research, as well as their own experience, to make an informed decision]





 

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I was the person who receieved the booklet from outside of Liverpool (in the east midlands actually). At first it looks credible in how it's explained, muscle deterioration..but then after a while it sinks in that the whole thing seems to contradict so many biological studies. I personally have tried get/cbt, mainly due to desperation! But after quite a while of doing it I've not found it helpful atall. Reading up on all of the controversies surrounding it has made me slightly aghast also. Great posts by the way Orla, liking the dissection of each bit; makes the read far more palitable :) .
 
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Thank you very much for all of this information Orla, and those that helped you obtain the document (?)

This is damning stuff, revealing the stark irrationality behind the CBT model in CFS in these clinics.

It will no doubt be able to be put to good use by many people.
 
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Gerwyn

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A lot of people will get better this way because the oxford criterea are anti positivistic in nature so the patients in question are those that the Dr subjectively assess as having chronic fatigue syndrome.The oxford guielines are wholly subjective in nature and hence not scientific in any way That is why these guidlines will diagnose patients with depression and not patients with ME the neurological disorder at all.