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The Psychiatric view of ME/CFS. What is it?

T

Terri

Guest
Great research

Orla,

You have completed a lot of good work here. I too have saved for future reference. I was discouraged to read the veiwpoint that to do a lot of testing to find a culprit is not widely accepted. For years I have been diagnosed only with FM and have now determined from my symptoms (primarily the weird flu like, swollen gland, pulsating muscle pain flares) are indicative of CFS, not FM. My plan is to go to a new doctor and say "Lets forget about treating the symptoms, lets do tests to find a reason". Sounds like this is not going to be as easy as I had hoped.

TJ
 

Orla

Senior Member
Messages
708
Location
Ireland
Deconditioning theory

Deconditioning theory: We are deconditioned, and this deconditioning causes many of our symptoms. Our phobic/fearful avoidance of exercise and activity makes this problem worse and perpetuates the cycle of disability. This is why they advocate Graded Exercise.

When you read their ideas of how we behave they are often ridiculous caricatures of how patients really think and behave (for example they give the impression that we are terrified of any activity and take to the bed/sofa at the drop of a hat, and that we sit around doing nothing all day because of our fears).

I'll have to edit in more quotes on this, but for now.

"The perpetuating factors include inactivity, illness beliefs and fear about symptoms, symptom focusing, and emotional state" Wessely and Cleare in Update 1996: 14 August:61.

-----------------------------------------------

" Etiological theories for CFS abound but none are established. Some of these theories are clinically unhelpful whatever their scientific merits. Thus, the belief that symptoms are due to a persistent viral infection of muscle may or may not be true but more importantly is clinically unhelpful.. Such a belief can lead to the patient interpreting myalgia as evidence of worsening disease, and consequently being reluctant to engage in rehabilitation. In general, beliefs implying that activity will have adverse or even catastrophic consequences lead to its avoidance.

Other beliefs for which there is (at least as good) scientific support have more constructive implications. For example, the idea that many symptoms of CFS are due to the neurophysiological consequences of inactivity (deconditioning) and the delayed onset of postexertional muscle pain offers a positive alternative to the disease explanations described above. The belief that symptoms are due to disturbed hypothalamic pituitary function does not interfere with rehabilitation and may also provide a rationale for the prescription of antidepressant drugs if relevant".


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/c6/01/47/68/27Sharpe1997.pdf

So it doesn't really matter what is scientifically right or wrong so long as it sounds nice! Basically they are happy with any explanation that does not interfere with their psychologically and behaviourally based treatment plan. Thinking you have an organic physical disease is not allowed.

----------------------------

And below from a training video produced for GP's (Go here http://www.youtube.com/watch?v=bvArXvqAMiA to see Part 1 and the rest - with some astute comments added in by the person who posted it there. This is really creepy stuff about managing patients, that covers a lot in terms of psychiatric attitudes to this illness).

Trudi Chalder: "and the factors which keep the problem going, are, usually, people reducing their activity because they're fearful that if they carry on with their activity that it will make the problem worse"

What the producers/promotors say about this video: "This is a training package specially designed and created for GPs. It features some of the Institute of Psychiatry's top academics and other experts in the field of mental health. Directed by emeritus Professor Sir David Goldberg and produced by the World Psychiatric Association, it includes five different presentations that demonstrate skills GPs need to help patients with mental health problems.... The Management of Chronic Fatigue [they slip from using Chronic Fatigue to Chronic Fatigue Syndrome in this] in Primary Care (45 minutes) presented by Andre Tylee and Trudy Chalder. Each presentation features vignettes of GPs treating patients and advice on assessment tools, interventions and medication from the expert presenters. "
 

Dolphin

Senior Member
Messages
17,567
Orla,

You have completed a lot of good work here. I too have saved for future reference. I was discouraged to read the veiwpoint that to do a lot of testing to find a culprit is not widely accepted. For years I have been diagnosed only with FM and have now determined from my symptoms (primarily the weird flu like, swollen gland, pulsating muscle pain flares) are indicative of CFS, not FM. My plan is to go to a new doctor and say "Lets forget about treating the symptoms, lets do tests to find a reason". Sounds like this is not going to be as easy as I had hoped.

TJ
The views with regard to limited testing haven't taken hold as much in the US as they have in some countries.
 
R

Robin

Guest
Deconditioning theory: We are deconditioned, and this deconditioning causes many of our symptoms. Our phobic/fearful avoidance of exercise and activity makes this problem worse and perpetuates the cycle of disability. This is why they advocate Graded Exercise.

When you read their ideas of how we behave they are often ridiculous caricatures of how patients really think and behave (for example they give the impression that we are terrified of any activity and take to the bed/sofa at the drop of a hat, and that we sit around doing nothing all day because of our fears).

The weird thing is that Peter White was involved in a study about that in 2005: Is the chronic fatigue syndrome an exercise phobia? (The answer: no.)

Is that still touted as a cause?
 

Dolphin

Senior Member
Messages
17,567
The weird thing is that Peter White was involved in a study about that in 2005: Is the chronic fatigue syndrome an exercise phobia? (The answer: no.)

Is that still touted as a cause?
He tries to mention in lots and lots of pieces since them a term he started using a few years ago, interoception.

Basically he claims that we are overly-sensitive to normally bodily signals and think we have pains in our muscles, for example, when actually there is nothing wrong with us.

We spend too much time listening to our body and if we just ignored the signals and did his exercise program, we'd get back to normal.

But CBT for GET is based on persuading us to exercise and that we are avoidant for one reason or another. The theory certainly hasn't gone away following the paper but it is useful for us to mention it as much as possible.
 

Orla

Senior Member
Messages
708
Location
Ireland
H TJ,

I think this is more of a problem in the UK (and some parts of Europe) rather than US. But if you have money or insurance it can be easier to get tests (though some of the insruance company are influenced by this rubbish which can make that difficult also). A lot depends on the doctor you attend, and whether they know anything about ME/CFS or not. The Canadian Criteria are good to help diagnosis. You can download that here http://www.cfids-cab.org/MESA/ccpccd.pdf or a summary version here http://www.cfids-cab.org/MESA/me_overview.pdf

The XMRV thing could blow this thing out of the water anyway and we might all soon be getting that test anyway. Hopefully!
Orla
 

gracenote

All shall be well . . .
Messages
1,537
Location
Santa Rosa, CA
repeat exercise tests

To add to Robin, TomK's and Orla's discussion.

from the abstract:
IS THE CHRONIC FATIGUE SYNDROME AN EXERCISE PHOBIA? A CASE CONTROL STUDY
Gallagher AM, Coldrick AR, Hedge B, Weir WR, White PD. (2005)

RESULTS: Patients with CFS were more fatigued and sleep disturbed than were the controls and noted greater effort during the exercise test. No statistically significant differences were found in either heart rate or GSR both during a normal day and before, during and after the exercise test. Patients with CFS were more symptomatically anxious at all times, but this did not increase with exercise. CONCLUSION: The data suggest that CFS patients without a comorbid psychiatric disorder do not have an exercise phobia.

This is actually a little surprising to me because we have good reason to fear exercise. :) What needs to be added to this discussion is what happens when you test PWCs the next day.

from Cort (on Phoenix Rising web pages)
Two years ago repeat exercise tests at the 2007 Fort Lauderdale IACFS/ME showed ME/CFS patients falling apart metabolically on their second exercise test. Dr. Whistler was impressed enough with her results to call for stress tests of one sort or another to be used in every study. One of the most intriguing themes of the conference is the degree to which repeat exercise tests are beginning to pervade the research arena.
 

Orla

Senior Member
Messages
708
Location
Ireland
Role of stress, emotions, and the benefits of the sick role

We may also have some other stress issues that cause symptoms, though we might be resistant to these suggestions.

Emotional, and other, issues may also make us reluctant or unable to get back to our normal life. Some patients might be adopting the "sick role" because of the benefits this gives them (I am not kidding! They actually think we gain from being sick, and that this stops us from getting better).

Perpetuating factors

Biological
Effect of profound inactivity
Effect of chronic emotional arousal

Cognitive and behavioural
Neurobiological factors as yet unknown
Belief in viral infection
Fear of making disease worse
Reduction of activity

Social
No job
Reinforcement of sick role by mother and doctor

Table from: Chronic Fatigue Syndrome: A Practical Guide to Assessment and Management, Sharpe M. Wessely S et al, Gen Hosp Psychiatry 1997:19:3:185-199 http://www.kcl.ac.uk/content/1/c6/01/47/68/27Sharpe1997.pdf

-----------------------------------------

"Both State and private insurers pay people to remain ill... The current system of state benefits, insurance payments and litigation remain potentially major obstacles to effective rehabilitation.."

Functional Symptoms and Syndromes: Recent Developments. Michael Sharpe, Trends in Disability 2002, UNUM. This report can be downloaded here http://tinyurl.com/29f8wl UNUM is a disability insurer with a financial interest in looking for excuses not to pay out on claims. If you google them you can find out about cases where they have been fined millions in the US courts for their practices.

-----------------------------------

The Royal Colleges Report on CFS is shocking in it's section on children, these are some quotes from it:

"CFS in children covers a broad spectrum of problems, ranging from the minor to the very serious, perhaps even involving the Munchausen's by Proxy"

(MBP is when the parent makes the child sick for attention. Some children with ME/CFS have been taken into "care" in the UK when the authorities claimed that the parents were responsible for the child adopting the sick role).

"Overall we believe that relevant risk factors contributing to CFS in children are not usually clear cut psychopathological risk factors such as abuse, but instead may involve a complex family dynamic of involvement, high expectation, limited communication on emotional issues and previous experience of illness."

"exploration of family and psychosocial issues is always indicated, this must always be done with tact and sensitivity, especially as many families continue to see the problems as solely 'organic'. Obtaining any history of similar illnesses in the parents' biographies can also be important."

(sometimes psychiatrists argue that the child is copying a parent with illness, or that there are psychological dynamics in the family which cause the child to adopt their behaviour)

"As in adults...the number of physical investigations should be kept to a minimum.." (in contrast to their obsession with psychological examination)

"Sometimes one member of the familiy, usually the mother, has given up work to look after the child, leading to a fixed sick role which can be difficult to alter"
 

Orla

Senior Member
Messages
708
Location
Ireland
we are in denial about our psyche problems

We might not want to admit that our symptoms are a result of psychological rather than physical factors. This might be because we enjoy the benefits of the sick role too much, and we think we will get more help/attention/sympathy if people think we have a physical illness. We might also feel that there is no blame/responsibility attached to having something like a virus, and we might think there is with a psychological condition:

"It seems that ME sufferers prefer to feel that they have a 'real' disease - it is better for their self-esteem" Wessely at a talk in Belfast on April 15th, 1992. Pfizer Invicta Pharmaceuticals 1992:4-5

"..it is plausible that an initial ineffective trigger may begin a cycle in which both attributional and cognitive factors fuel avoidant behaviour. The initial symptoms, in particular fatigue and myalgia, engender a state of "learned helplessness" being potent, aversive and uncontrollable, and may also trigger or exacerbate the mood disorder that is found in many patients. Continuing attribution of all symptoms to a persistent, untreatable "virus", continues to increase helplessness, although preserves self esteem. Avoidant behavior, which is reinforced by the advice currently offered to patients, sustains symptoms, by decreasing activity tolerance and increasing sensitivity to any stimulation, as does associated mood disorder. Reexposure to activity causes more symptoms, and more fear. The result is a vicious circle of symptoms, avoidance, fatigue, demoralisations and depression..". BUTLER S, CHALDER T, RON M, WESSELY S. Cognitive behaviour therapy in chronic fatigue syndrome. J Neurol Neurosurg Psychiatry 1991;54:153-158.


"Blaming symptoms on a viral infection conveys certain advantages, irrespective of its validity,..It is also beneficial to self-esteem by protecting the individual from guilt and blame...the victim of a germ infection is therefore blameless" Simon Wessely, Sue Butler, Trudie Chalder and Anthony David, in Post-viral Fatigue Syndrome ed. Jenkins and Mowbray, 1991.

They think that if we don't want to admit to, and deal with, our psychological issues we will probably not get better. This is why they sometimes say that if patients have a strong belief that their condition is physical they are less likely to get better.

“the interpretation of symptoms predominantly in terms of physical illness, and not in terms of emotional states, plays a particularly important role in the maintenance of the disorder” Interpretation of symptoms in chronic fatigue syndrome Dendy C Cooper M Sharpe M, Behaviour Research and Therapy 2001:39(11):1369-1380

This, along with trying to get us to stop phobically/abnormally avoiding activity, is the reason people with the psychiatric view of ME advocate a psychological therapy, Cognitive Behavioural Therapy. The CBT is to challenge our "abnormal illness beliefs and behaviours" and try to get us to deal with our issues/emotions more productively.
 
Messages
13,774
He tries to mention in lots and lots of pieces since them a term he started using a few years ago, interoception.

Basically he claims that we are overly-sensitive to normally bodily signals and think we have pains in our muscles, for example, when actually there is nothing wrong with us.

We spend too much time listening to our body and if we just ignored the signals and did his exercise program, we'd get back to normal.

But CBT for GET is based on persuading us to exercise and that we are avoidant for one reason or another. The theory certainly hasn't gone away following the paper but it is useful for us to mention it as much as possible.

I think it's possible that for some people with CFS, there could be some sort of neurological problem which alters their responses to bodily signals. An internalised alternative to PTSD.

I have no problem with the psychiatrists exploring and testing ideas like this. Maybe they'll find somthing useful.

The big problem I have is this sort of attitude:

"Etiological theories for CFS abound but none are established. Some of these theories are clinically unhelpful whatever their scientific merits. Thus, the belief that symptoms are due to a persistent viral infection of muscle may or may not be true but more importantly is clinically unhelpful."

A lack of commitment to the truth, or even a belief that an honest exploration of the reality of CFS or it's possible physical causes should be avoided out of fear that the truth would harm a patient's recovery. Such an attitude means that it's proponents have effectively excluded themselves from the debate. They cannot be taken seriously even when their claims could be worthy of serious thought and discussion.

I think this is dangerous. Sometimes behavioural treatments are the best available for neurological damage. My friend was seriously ill for two years with CFS like symptoms, combined with problems with his sense of balance. After spending a long time dismissing him as a malingerer, or psychologically ill, they eventually put him in a brain scanner, ran some tests, and realised that his symptoms were caused by a car crash he'd had five years earlier, and that minor brain damage had eventually led to their onset. He's now recovered after following behavioural treatments and exercises. We know that viral infections can cause neurological damage too. That such potential treatments for CFS are so entangled with prejudices and incomptentence have cut us off from what could be a useful avenue to explore.

At least Peter White's paper on Exercise Phobia was honest in it's conclusion.
 
K

Katie

Guest
I've been mulling this thread over. I've not sure what to make of it because reading the exerpts has made a lot of sense. When I was first ill I didn't really understand why when ME was about brain inflammation I was never given a brain scan. I kept having a blood test. Then a blood test. Then a blood test. I wasn't even told what I was being tested for, I don't even know now :( Bit embarrassed about that. I was told 'no further action required' by a receptionist when my mum rang or later in life, me.

So, new year coming up. I moved to a new doctor a few years back after moving across England and I still don't know how he feels about ME. From reading these excerpts I think I know what my old doctor thought, no wonder he didn't help me and left me to rot, I was wasting his time. I'm going to have to see my doc soon, I wanted to wait for a couple of replication studies before tackling him, but part of me wants proper tests now, NK cell count, T and B cells count. Reading all the different tests you have in America, how much you know about yourselves and your body, it amazes me. I feel cheated and ashamed I've not done more for myself, but before XMRV it seemed to pointless and I've been scared to draw attention to myself, I could lose a lot. Western medicine abandonned me and then I abandonned it.

Time to go back to the doctors in the new year I think. I'm scared.


Thank you Orla, your work here is outstanding. :)
 

Dolphin

Senior Member
Messages
17,567
I think it's possible that for some people with CFS, there could be some sort of neurological problem which alters their responses to bodily signals. An internalised alternative to PTSD.

I have no problem with the psychiatrists exploring and testing ideas like this. Maybe they'll find somthing useful.
But in the meantime exercise is recommended by people like Peter White for all CFS patients justified by a theory that may or may not apply to a subset.

And it's not simply being explored, it's already being mentioned in various CFS papers including in the BMJ. Peter White was part of a team who analysed CDC data - patients with unexplained symptoms were described as having interoception.
 
Messages
13,774
But in the mean time exercise is recommended by people like Peter White for all CFS patients justified by a theory that may or may not apply to a subset.

And it's not simply being explored, it's already being mentioned in various CFS papers including in the BMJ. Peter White was part of a team who analysed CDC data - patients with unexplained symptoms were described as having interoception.

Certainly - to tell all patients to follow a GET course (especially if, as is usual, it mandates ever increasing levels of exertion) while actively discouraging investigations of possible biological causes; to see the truth as being a dangerous threat to a patients 'faith' in their treatment - this is medicine as shaminsm rather than science.

I also think it's part of a more widespread problem. In medical school doctors will discuss when it is acceptable to hide a diagnoses from their patients ("There's nothing we can do, and it will only upset them."). This approach to the truth seems to be encouraged by some of the public ("I wouldn't want to know if it was me.") I don't know if this is an especially British thing, in some ways it seems tied to a rather elitist, class based culture; our medical profession also seems especially weakly regulated, with little central control and difficulty in suing for malpractice. It's only recently that we gained the right to view our own medical records. It's also Britain that seems especially commited to the psychological approach to CFS.

That was turning into a ramble, and I've got to eat dinner.
 

Cort

Phoenix Rising Founder
Given recent research by Dr. Light this quote is fascinating

Basically he claims that we are overly-sensitive to normally bodily signals and think we have pains in our muscles, for example, when actually there is nothing wrong with us.

He could be half right and half wrong. Dr. Light is finding that the receptors that signal pain and fatigue in the muscles are way (way) overactivated in CFS. That suggests that we are in fact overly sensitive to normal body signals! (With the proviso that the "we" refers to receptors in the body that assess the condition of our muscles.


http://aboutmecfs.org/Conf/IACFS09Surprise.aspx


if this is true then Dr. White Misses the boat in his conclusion that 'there's nothing wrong with us". Interestingly Dr. Light also found that sympathetic nervous system receptors were activated as well which suggest that things like CBT and meditation - which, done properly, tend to put the body in a more relaxed state could be somewhat therapeutic; because they turn down the activity of an overactive system.

In any case Dr. light presents a physiological cause for the 'over-attention'
on our body sensations. Its not that CFS patients are paying too much attention to them - its that the attention is being forced on them by a physiological problem.
 

Dolphin

Senior Member
Messages
17,567
Given recent research by Dr. Light this quote is fascinating:

Basically he claims that we are overly-sensitive to normally bodily signals and think we have pains in our muscles, for example, when actually there is nothing wrong with us.

He could be half right and half wrong. Dr. Light is finding that the receptors that single pan and fatigue in the muscles are way (way) overactivated in CFS. That suggests that we are in fact overly sensitive to normal body signals! (With the proviso that the "we" refers to receptors in the body that assess the condition of our muscles.


http://aboutmecfs.org/Conf/IACFS09Surprise.aspx
I know that's what the Lights are saying.

What they actually found was an abnormal response to exercise (abnormal gene expression responses, etc).

In their paper, they go on to speculate that because (they say) we know there is nothing wrong in the muscle (and quote one or two studies), then the body is misinterpreting normal bodily signals.

However, I think to say that we know that there is nothing wrong in the muscle is not something we can assume. There have been plenty of studies finding muscle abnormalities, including one just published on the pH in muscles which found, "Patients with CFS/ME have abnormalities in recovery of intramuscular pH following standardised exercise degree of which is related to autonomic dysfunction".

I remember reading a piece by the neurologist Russell Lane where he discusses the issue - they checked whether it was just central fatigue and they found that there was also a peripheral component to the fatigue.

So I don't believe that the Lights' research should be quoted as evidence that we are overly sensitive to bodily signals. If the journal had allowed online comments, I would have challenged them on this point but I can only write some many letters to the editor (which are a lot of work).
 

gracenote

All shall be well . . .
Messages
1,537
Location
Santa Rosa, CA
mostly similar here, too

I've been mulling this thread over. I've not sure what to make of it because reading the exerpts has made a lot of sense. When I was first ill I didn't really understand why when ME was about brain inflammation I was never given a brain scan. I kept having a blood test. Then a blood test. Then a blood test. I wasn't even told what I was being tested for, I don't even know now :( Bit embarrassed about that. I was told 'no further action required' by a receptionist when my mum rang or later in life, me.

So, new year coming up. I moved to a new doctor a few years back after moving across England and I still don't know how he feels about ME. From reading these excerpts I think I know what my old doctor thought, no wonder he didn't help me and left me to rot, I was wasting his time. I'm going to have to see my doc soon, I wanted to wait for a couple of replication studies before tackling him, but part of me wants proper tests now, NK cell count, T and B cells count. Reading all the different tests you have in America, how much you know about yourselves and your body, it amazes me. I feel cheated and ashamed I've not done more for myself, but before XMRV it seemed to pointless and I've been scared to draw attention to myself, I could lose a lot. Western medicine abandonned me and then I abandonned it. . . . Time to go back to the doctors in the new year I think. I'm scared. . . . Thank you Orla, your work here is outstanding. :)

Hi Katie,

While there may be some (too few) doctors in the US doing a lot of different kinds of testing, most of us pay out of pocket for these doctors and these tests. A lot (and I don't have any kinds of numbers) of medical plans here will do the same preliminary blood tests to rule out the obvious and then that is the end of it. I can't be more precise than this, and this is not the thread to do it on, but I just wanted you to know that your experience is shared by many, probably most, of people here in the US who get the CFS diagnosis.

When you do go back to see your doctor, I'm sure there are many here who can "go along with you" and help you understand what is happening and what you can do.

Best to you in the new year,

Gracenote
 

Orla

Senior Member
Messages
708
Location
Ireland
Katie, don't blame yourself. It is a crazy situation not created by us. We shouldn't be in a situaion where we know more about the medical research than most doctors. Most of them will probably have read no biomedical research into it.

You might have problems getting any of those tests on the NHS. And the doctor might not run them if they feel they are not allowed, or they cannot offer any treatment based on them. It doesn't necessarily mean that they think it is psychiatric if they don't run them as they are very hampered in what they are allowed to do. It can be very tricky as sometimes as well doctors can get annoyed if they think the patient is asking for "too much".

It looks likely that the replication sudies will be out in next few months, which seems really speedy by comparison to all the usual hanging around. So it could be easier to wait?
Orla
 
K

Katie

Guest
Hi Katie,

While there may be some (too few) doctors in the US doing a lot of different kinds of testing, most of us pay out of pocket for these doctors and these tests. A lot (and I don't have any kinds of numbers) of medical plans here will do the same preliminary blood tests to rule out the obvious and then that is the end of it. I can't be more precise than this, and this is not the thread to do it on, but I just wanted you to know that your experience is shared by many, probably most, of people here in the US who get the CFS diagnosis.

When you do go back to see your doctor, I'm sure there are many here who can "go along with you" and help you understand what is happening and what you can do.

Best to you in the new year,

Gracenote

Thanks Gracenote, I was thinking about getting my tests done by Red Labs in Belgium but here you can't get blood drawn without a form from the doctor with all the codes and stickers etc. At least I don't know how to go around that, you even take a number like at the deli counter, ever so organised and market like now! I'm prepared to pay, I expect to pay, but I'd rather not, lol.

You warmed my cockles by saying you could all "come along with me", I trust you lot a lot more than the docs round here! I'll be posting a thread in the new year about what I should ask for and what I should hold back on, I don't think I can get away with too much too soon. And now I sound really paranoid, but Cold had it right, it's really hard to go to your doctor to request stuff, especially when you don't know them.

I'll let this thread get back on track now, expect a post in the new year when I'll be feeling more level headed, not been a well day for me, always makes me overly thoughtful. Thanks again, Katie


Just saw the lovely Orla posted :D You know, I'll probably decide after a night's sleep that it is best to wait, go in with ammunition. I wanted to rush in there and look at my medical records and figure everything out. I think itchy feet is typical and I'll have a more reasoned head on in the new year. For the next couple of weeks I want to forget about ME politics and even XMRV and focus on the present and savour it. Again, thanks for all your work, gosh it's appreciated.
 

Orla

Senior Member
Messages
708
Location
Ireland
Why they advocate CBT and GET

And now for the moment we’ve all been waiting for…the cure!

Because they think we don’t have an organic physical condition, but think we are suffering basically from psychological and behavioural problems, they advocate Cognitive Behavioural Therapy (CBT) and Graded Exercise Therapy (GET) (the CBT is often partly to get patients to do graded exercise). So the CBT (according to them) is not to help people deal better with their physical condition, it is to help them change their (alleged!) abnormal cognitions and behaviours.

One of the big problems with this approach is that they do not recognise that there might be a limit to the activities the patient can perform, and they don't see that patients cannot just "Graded Exercise" their way out of ME/CFS. (Of course if the patient is getting better anyway then they can increase activity).

For people who have not come across it, this is a brief summary of what CBT is, from the British Association of Behavioural and Cognitive Psychotherapies.

Cognitive Behaviour Therapy (CBT) is a talking therapy. It can help people who are experiencing a wide range of mental health difficulties. What people think can affect how they feel and how they behave. This is the basis of CBT.

During times of mental distress, people think differently about themselves and what happens to them. Thoughts can become extreme and unhelpful. This can worsen how a person feels. They may then behave in a way that prolongs their distress.

CBT practitioners help each person identify and change their extreme thinking and unhelpful behaviour. In doing this, the result is often a major improvement in how a person feels and lives.”

http://www.babcp.com/public/what-is-cognitive-behaviour-therapy/

I studied psychology for a year in university and we were thought that CBT was for things like depression, anxiety, and phobias.

So if you look at the previous comments from the psychiatrists (in my other posts) you can see that the extreme and unhelpful thoughts and behaviours they think we have is our attitude to activity, our beliefs that we have an organic illness etc. So this is what the target of their CBT therapy is.

Anyway these are some relevant quotes:

At present treatment should address psychological disorder, misunderstandings about the nature of the condition, avoidance of activity, exercise intolerance and sleep disorder.” Royal Colleges Report UK, 1996.

Could the observed psychological disorder simply be a reaction to a physical illness? This explanation is the least convincing.” Royal Colleges Report 1996.

---------------------------------------------------

beliefs are…probable illness-maintaining factors and targets for therapeutic intervention

"The most important starting point is to promote a consistent pattern of activity, rest, and sleep,followed by a gradual return to normal activity; ongoing review of any ‘catastrophic’ misinterpretation of symptoms"


Chronic fatigue syndrome: a practical guide to assessment and management Sharpe M Chalder T Wessely S et al, General Hospital Psychiatry 1997:19:3:185-199 http://www.kcl.ac.uk/content/1/c6/01/47/68/27Sharpe1997.pdf

--------------------------------------------------------

"When symptoms are found not to result from "genuine physical illness" they are often believed to be insignificant or attributed to mental illness...In fact there is scant provision in either medical or psychiatric services for the patient with somatic complaints who has neither physical disease nor severe mental illness.

We now know that we could do better. Evidence for the superiority of new ways of thinking about and managing such patients is growing....These new treatments, often referred to as cognitive behavioural therapies, take an explicitly integrative approach to patients' complaints—an approach in keeping with the evidence that the perpetuation of unexplained somatic symptoms is best understood in terms of an interaction between physiological processes, psychological factors, and social context.


This integrative approach also provides a logical basis for management. The first step is acknowledging the reality of the patient's problem. The second is systematically identifying and listing the principal factors that perpetuate illness, including disordered physiology, misinterpretation of associated bodily sensations, abnormalities of mood, unhelpful coping behaviour, and social stressors. The third step is making a management plan that targets the most important of these factors for each patient. For example, a patient with chronic fatigue may benefit from information to combat unfounded fears about the illness, guidance and encouragement in returning to normal activity, and help with employment and other problems.

.... 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.

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

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

Note: Not all CBT therapists agree with these extreme views about ME/CFS patients. These views might be more prevalent in the UK, where it’s main promoters live, and now these extreme views are basically official NHS policy. Doctors or therapists elsewhere, unfortunately, could be influenced by these thinkers if they read their papers, and if they don’t know about the evidence countering these views.

Some patients here may find they have gone to a CBT therapist who might try to encourage them to pace more - the opposite of what the psychiatrists above try to do. Also CBT therapists (or other types of counsellors or psychologists) not influenced by the above extreme views, might see their role more as helping the patient come to terms with their limitations, rather than trying to pretend these limitations don’t exist. The Canadian Overview document has an interesting comment on this issue which I will post below.

Unlike what the psychiatrists above argue, there is evidence of an underlying disease in ME/CFS (so it is not our imagination), and people with ME/CFS do genuinely have a problem with exercise.
 

Orla

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Canadian Overview document on CBT

Quote from the Canadian Overview Document:

"Self-help strategies

A hypothesis underlying the use of Cognitive Behaviour Therapy (CBT) for ME/CFS is based on the premise that the patient’s impairments are learned due to wrong thinking and “considers the pathophysiology of CFS to be entirely reversible and perpetuated only by the interaction of cognition, behaviour, and emotional processes. The patient merely has to change their thinking and their symptoms will be gone. According to this model, CBT should not only improve the quality of the patient’s life, but could be potentially curative” 46 . Supporters suggest that “ideally general practitioners should diagnose CFS and refer patients to psychotherapists for CBT without detours to medical specialists as in other functional somatic syndromes” 47 . Proponents ignore the documented pathophysiology of ME/CFS, disregard the reality of the patients’ symptoms, blame them for their illness, and withhold medical treatment.

Their studies have often included patients who have chronic fatigue but excluded more severe cases as well as those who have other symptoms that are part of the clinical criteria of ME/CFS. Further, their studies fail to cure or improve physiological impairments such as OI, sore throat, IBS, etc. Dr. A. Komaroff 48 , a Harvard based world authority, stated that the evidence of biological process “is inconsistent with the hypothesis that (the syndrome) involves symptoms that are only imagined or amplified because of underlying psychiatric distress. It is time to put that hypothesis to rest”.

Some physicians, who are cognizant of the biological pathophysiology of ME/CFS, teach patients coping skills but call them “CBT”. We urge such doctors to use the term “Self Help Strategies” and avoid using the terms “Cognitive Behaviour Therapy” and “Cognitive Retraining Therapy”."

From An Overview of the Canadian Consensus Document, http://www.cfids-cab.org/MESA/me_overview.pdf