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Psychiatric Times: Are Some Patients Trying to Medicalize Chronic Fatigue? 6/22/11

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
by Prof. Ronald Pies,
http://www.psychiatrictimes.com/display/article/10168/1886900

relevant excerpts:
The findings sounded like good news. As reported recently in The Lancet, chronic fatigue syndrome (CFS) may be successfully treated with a combination of psychotherapy and exercise. Specifically, results of a randomized trial showed that cognitive-behavioral therapy and graded exercise therapy have a moderate effect in the treatment of CFS.1

Yet a report in The New York Times2 suggested that the study results . . . are certain to displease many patients and to intensify a fierce, long-running debate about what causes the illness and how to treat it. The Times noted that many patients . . . believe the syndrome may be caused by viruses related to mouse leukemia viruses, and they are clamoring for access to antiretroviral drugs. . . . Furthermore, . . . the new study . . . is expected to lend ammunition to those who think the disease is primarily psychological or related to stress [italics added].2

For those of us accustomed to the charge that psychiatry is trying to medicalize normalityand that psychiatry has no objective tests to validate our disease categoriesthis report is both ironic and revealing. First, it suggests that patientsnot just physiciansmay sometimes have compelling reasons for applying the medical model to conditions whose etiology and pathophysiology remain controversial and obscure. Indeed, in light of the serious adverse effects associated with antiretroviral drugs, it is extraordinary that some patients would be clamoring for these agents, given the tenuous link between CFS and a viral etiology. I suspect this speaks to the profound lethargy and physical impairment experienced by some patients with severe forms of CFSand this, in turn, speaks to an important truth regarding the nature of what we call disease. Disease (disease) is usually first recognized by those who suffer with it, and by their loved ones. It is not fundamentally a scientific term, but anexperiential concept born of the human condition.3 Those who suffer with CFS understand this, and their predicament serves as a window into the conceptual and semantic problems that bedevil psychiatry.

Indeed, the Times report by David Tuller presents a microcosm of the linguistic ferment in the realm of medical nosology. Note that the reporter uses 3 different terms to describe CFS: illness, syndrome, and disease. This alone should tell us that in the matter of describing and classifying abnormal physical and emotional states, confusion aboundsand not just among journalists. Physicians and researchers, too, often bandy about terms such as illness, syndrome, and disease without much reflection as to the precise meaning of these terms, or how they differ from one another.

The Platonic enterprise of carving Nature at its joints is wasted surgery, if we are not relieving the suffering and incapacity of our patients.

It is notable that despite a lack of reliable biomarkers or lab tests for CFS, the CDC describes CFS as a distinct disorder with specific symptoms and physical signs.4Here we meet yet another poorly defined term: disorderthe term of choice for conditions in the DSMs, and one that strikes some of us as a bit of a dodge. How, after all, does a disorder differ from a disease? If it is simply a matter of identifiable pathophysiology, then why is Alzheimer disease listed as a cognitive disorder in DSM-IV? Are we to infer that all diseases are also disorders, but that the converse is not true? It is enough to make the clinicians eyes glaze over...

So, how does all this apply to CFS and the insistence by some that patients with CFS be treated with antiretroviral drugs? It would be unfair to conclude that those advocating this position are trying to medicalize severe, chronic fatigue, in any pejorative sense of the term medicalize. On the contrary: like physicians, these advocates are, in good faith, trying to alleviate diseaseand they have every right to do so, regardless of how well or poorly we understand the pathophysiology of CFS. Of course, it is an empirical question as to whether antiretroviral drugs are either safe or effective in CFS. I have serious doubts, but only clinical investigation will resolve the matter. Nonetheless, there should be no quarrel over the reality of severe CFS as an instantiation of genuine disease, just as schizophrenia and major depression constitute real disease.

In my view, psychiatrists would do well to avoid scholastic disputations over where to draw the line between normality and abnormality.16 (If 99 in 100 stockbrokers jump out the window after the stock market crashes, is that behavior normal or abnormal?) So, too, with our nosology. The Platonic enterprise of carving Nature at its joints is wasted surgery, if we are not relieving the suffering and incapacity of our patients. This applies whether we are discussing major depressive symptoms following bereavement17 or severe, chronic fatigue. The central question for both our psychiatric nosology and our medical duty is just this: how much suffering and incapacity is burdening the patient who seeks our help? If the answer is, Quite a lot, then our patient has bona fide disease, and it is ethically incumbent on us to provide safe and effective treatment.

To view the article you have to sign up (for free). To comment you need to say you are a physician. If you comment, pls also send to his email, below. If you don't want to sign up and want to comment, just send him an email:
piesr@upstate.edu

I posted and emailed:
Dear Prof. Pies,

An interesting article. I am a pwME/CFIDS.

Please call the disease by it's proper names Myalgic Encephalomyelitis, CFIDS or at the very least CFS, not 'chronic fatigue.' Chronic fatigue is just a symptom. There are only a few dozen people on ARVs for XMRV/HGRV associated ME as far as we know; some of these are physicians with ME (prescribed to by their own physicians). Please see the fascinating blog XRx by a knowledgable Harvard-educated physician:
http://treatingxmrv.blogspot.com/

What we are clamoring for are drug trials, the ending of bias in ME and HGRV research and appropriate funding. CDC, NIH and the UK govt have been waging a war on pwME and the science for over 25 years. We would this to stop. Please contact me for more information if you are interested. Thank you.
 

Enid

Senior Member
Messages
3,309
Location
UK
Very interesting - thanks Justin - a little reason at work here at last and ability to be self citical - has to be better.
 

Snow Leopard

Hibernating
Messages
5,902
Location
South Australia
The article looks OK on the surface, but it is the same old retreat to commitment.

Someone needs to point out that (a) CBT/GET does not result in objective improvements in activity levels as shown in the actometer results of the Wiborg et al. meta review of CBT studies and Belgian audit. (b) while no highly specific biomarkers have been identified, biological abnormalities such as the recent brain imaging study, abnormal acidosis, gene expression, cytokine response and levels of oxidative stress after exercise, when compared to matched sedentary controls.

http://www.kce.fgov.be/Download.aspx?ID=1222
http://www.ncbi.nlm.nih.gov/pubmed/20047707
(see the recent discussions on the other findings for the other links)
 

lucy

Senior Member
Messages
102
We maybe need to look at CBT from another perspective. If you google scholar autoimmune disease and cognitive behaviour therapy, you will see they try it on lupus patients, RA patients etc. And those diseases have markers! Most probably the only situation where they do not try CBT is terminal cancer? As psychology is a very weak science, they are trying their best by randomly taking any disease and trying out what they have.
This is of course again, a very defensive reply. We do not earn respect this way. Therefore I think the best position in commenting such articles would be to stop being defensive and taking a position:
"Yes, CBT helps to reduce the severity of some symptoms (as in any disease), but we want that science does not stop here and adequate research is done in this field. It is our right",
the same for GET:
"Yes, GET has helped a small percent of the patients in some studies, and as in such a underresearched disease, it is an achievement! Neverthless it is harmfull for some of the patients or it does no effect to the rest. We need something better than GET."
Strangely enough, they do not try hypnosis everywhere.
It would be interesting to collaborate with a journalist, whose aim would be to analyse the situation. All the media is either virus-pro or schizophrenia-pro, we do not have an independant analyst (two articles per year would suffice). Is it possible to be independant in ME/CFS? Can't we get Michael Moore to make a movie? Should we write a proposal to him? I think he only takes issues where you have numbers, and you have to be blind not to see the issue, while our situation is unclear, until we get the biomarkers. Maybe he would want to make a movie about how terribly unclear our situation is?
The bad thing is, text like this comes out somewhere at least twice per month. Study papers come out at most once per month. It is much easier to speculate than to do research.
 

Snow Leopard

Hibernating
Messages
5,902
Location
South Australia
The difference is in the language. In those diseases they claim it is to reduce rates of depression and to increase the ability to cope - this is especially useful in terminal cancer. In CFS they claim it will drastically reduce our symptoms and allow us to soon go back to work. If they were to treat CFS patients in a similar manner to those with Lupus, RA, MS etc, patients would be a lot happier.
 

Esther12

Senior Member
Messages
13,774
@ Lucy: CBT can 'help' with everything, so long as the improvement is measured according to questionnaires.

There are things that I like about CBT as a technique, but I think that it's usefulness can be massively exaggerated for a whole load of illnesses, and it also seems to have more potential for abuse than a lot of other psychological approaches.
 

jace

Off the fence
Messages
856
Location
England
Esther, as I said in my recent rapid response published in the BMJ (please excuse the blowing of my own trumpet tara taa)

Perhaps people do not understand the difference between the form of CBT offered to other illness groups and that offered to ME/CFS patients, which is advocated as effective by the PACE trial paper and CFS/ME clinics. I copy below an excerpt from the PACE results, describing the form of CBT used.

"Cognitive behaviour therapy (CBT) CBT was done on the basis of the fear avoidance theory of chronic fatigue syndrome. This theory regards chronic fatigue syndrome as being reversible and that cognitive responses (fear of engaging in activity) and behavioural responses (avoidance of activity) are linked and interact with physiological processes to perpetuate fatigue. The aim of treatment was to change the behavioural and cognitive factors assumed to be responsible for perpetuation of the participant's symptoms and disability" (1, page 3).

The irony is that the real life experience of people with the neurological disease myalgic encephalomyelitis shows that ignoring their symptoms and engaging in activity beyond their very limited capabilities is the way to aggravate the disease. Many severe, bed-bound patients date their decline into full-care status to taking part in Graded Exercise and this form of CBT which challenges their "false illness beliefs".

1) White, PD; Goldsmith, KA; Johnson, AL et al Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial; The Lancet, Early Online Publication, 18 February 2011doi:10.1016/S0140-6736(11)60096-2
 

Esther12

Senior Member
Messages
13,774
Hi Jace - I agree. One of the reasons that CBT can be more prone to abuse is that is places such emphasis upon the practitioner's ability to distinguish between distorted and rational beliefs. In the case of CFS, where there's little good evidence, and a lot of prejudices, this is unlikely to go well. Also - it seems somewhat uncertain as the the extent that the underlying basis for the CBT carried out under Pace affected the way in which patients were treated. Given the low rates of improvement found for CBT, I would have thought that it would have been difficult to go on telling a patient their disability is solely perpetuated by unreasonable fears for 18 months.
 

Wayne

Senior Member
Messages
4,308
Location
Ashland, Oregon
I found this article a bit frustrating to read. His words seemed a bit "flowery" to me, which made it difficult to understand what exactly his points were. The underlying feeling as I read however, was that he was trying show how objective his was, but still had his own personal bias. So I was not surprised to see his following quote toward the end:

Nonetheless, there should be no quarrel over the reality of severe CFS as an instantiation of genuine disease, just as schizophrenia and major depression constitute real disease.

Why not genuine disease, such as cancer or multiple sclerosis, etc.? Why pick two "psychiatric" diseases, which would seem to infer that CFS is also psychiatric? I was appreciative however of his cordial reply to comments following the article.

Wayne
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
Esther, as I said in my recent rapid response published in the BMJ (please excuse the blowing of my own trumpet tara taa)

Perhaps people do not understand the difference between the form of CBT offered to other illness groups and that offered to ME/CFS patients, which is advocated as effective by the PACE trial paper and CFS/ME clinics. I copy below an excerpt from the PACE results, describing the form of CBT used.

"Cognitive behaviour therapy (CBT) CBT was done on the basis of the fear avoidance theory of chronic fatigue syndrome. This theory regards chronic fatigue syndrome as being reversible and that cognitive responses (fear of engaging in activity) and behavioural responses (avoidance of activity) are linked and interact with physiological processes to perpetuate fatigue. The aim of treatment was to change the behavioural and cognitive factors assumed to be responsible for perpetuation of the participant's symptoms and disability" (1, page 3).

The irony is that the real life experience of people with the neurological disease myalgic encephalomyelitis shows that ignoring their symptoms and engaging in activity beyond their very limited capabilities is the way to aggravate the disease. Many severe, bed-bound patients date their decline into full-care status to taking part in Graded Exercise and this form of CBT which challenges their "false illness beliefs".

1) White, PD; Goldsmith, KA; Johnson, AL et al Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial; The Lancet, Early Online Publication, 18 February 2011doi:10.1016/S0140-6736(11)60096-2

This is exactly it, Jace!

Lucy, the form of CBT studied on ME patients and recommended for us by these all these Wessely School charlatans is to correct our supposed abnormal belief that we have an actual physical disease and our supposed 'phobia' of movement! And to teach us that GET has been proven not to harm us and is the only 'treatment' proven to help us! And then the Graded part of GET is continuous racheting up of exercise which is guaranteed to make us sicker. These are all lies which cause our disease to get worse. That is why they are totally unacceptable. They are doing their best... their best to keep us sick and save insurers money by not treating us.