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The Fight is on...Imperial College XMRV Study

Eric Johnson from I&I

Senior Member
Messages
337
Placebo effects are very common. Studies of CBT need to be placebo controlled like anything else.

Unfortunately, CBT seems to have a lot to do with imagining you feel better, or dont think about feeling ill even if you do. If you then assess the subject with a subjective questionnaire, well, havent you just "brainwashed" him as it were to write and say that he feels not so bad, and then asked him how he feels? This is in addition to the placebo effect.

I would be a lot more convinced of the value of CBT if it were measured by objective changes. Subject had X gain in economic productivity. Had X increase in regular exercise regimen.
 

Holmsey

Senior Member
Messages
286
Location
Scotland, UK
Holmsey, the fact he is saying there is a "physical component" to ME/CFS proves that he believes at core it is not a physical disease. Since if it were a physical disease, why would it have a physical "component"? He seems to believe it is a predominantly mental disease with a physical component. He is after all a psychiatrist. The paradigm in which he is trained is mental illness.

Stress exacerbates almost all diseases known to man including all infectious diseases, HIV for example. This is hardly news since the brain/emotions/hormones can have powerful effects on the immune system and the rest of the physiology. Again it doesn't mean this disease has a "mental component", but rather that the mind is linked to the body and they powerfully affect one another. But we have known this since at least Roman times (Sit mens sana in corpore sano). I'm sure HIV "has a mental component", but people with HIV are spared the indignity of having their primary care in the hands of psychiatrists. So why aren't people with ME/CFS spared the same indignity?

Garcia, you're asking very similar questions to the ones I asked. Firstly, although I have the concession that SW beleives the illness to be physical with a mental, lets call it 'influencing' factor, I can't tell how much he thinks each plays part, or which is the controlling factor, obviously I've used myself as the discussion example and I'd absolutely dispute that I have any psycological problem. However, I had to conceed that my own symptoms at least appear to get worse during periods of stress. I've had various examples through work, where after prolonged periods of pressure comming into project rollouts I've basically crashed. Now I'd argue that, given my physical symptoms, then of course increased load will effect that. But I can't argue that learning to recognise the precursors to the crash would allow me to prepare or avert. If you add that to, I don't necessarily best prioritise for my own benefit, that due to my personality for instance I perhaps don't often enough say, 'no, that's your responsibility', then you start to see where an argument for CBT as a tool to help deal with my illness can be won, whether I like it of not! Beyond that SW has quite pointedly stated that he beleives this to be a real physical condition, that leaves me nowhere to go unless I provied a paper which states otherwise, and I have at this invite started to read through his papers.

This hasn't been said, because to me it's self apparent, but we as yet don't have an answer like the HIV guys have, then there's going to be debate about what's best for our treatment, I'm following one of Pall's protocols and I've bought into Gupta's amygdala stuff, which to me is CBTish. So, just from what's available, and from what I've decided to try I can't with hand on heart say I see no place for SW, what I would say is I don't understand Psychiatry's leading role, I think at best it should be supportive, and directed at symptom management.
 

Eric Johnson from I&I

Senior Member
Messages
337
Good heavens, I just read the quote via Esther. How amusing. Tuberculosis was also discovered a long time before being cured. So was leprosy. The truth is the truth.

This sounds like a typical result of Postmodernism and the lamentable decline of the Western intellect.
 

valia

Senior Member
Messages
207
Location
UK
Beyond that SW has quite pointedly stated that he beleives this to be a real physical condition, that leaves me nowhere to go unless I provied a paper which states otherwise, and I have at this invite started to read through his papers.


Hello Holmsey,

That shouldn't be a problem, he has written about 500 stating he doesn't believe this to be a real physical condition.

May I suggest that you ask Mr Wessely to provide a paper in which he states that he does believe this to be a real physical condition?
 

Esther12

Senior Member
Messages
13,774
Esther12, is this for me? If it is, I will, I started reading through SW papers before Christmas but then Christmas got in the way, and this struck me as odd as well, to not hunt for implicated symptoms, even if the overall illness has as yet no known cure, just seems bizzare. What if something really serious was missed. My thougths on reading it were, if this were followed as a general rule, no medical breakthrough's would occur so it's one I wanted to ask SW about myself.

Thanks,

Yeah. Sorry, my last few comments were primarily for you.

This is the big problem I have the the Wessely approach, it seems based on the assumpion that we do not know the cause of CFS, so what's the best we can do. They've then decided that the best approach to take is one which discourages the medicalisation of symptoms and helps patients take responsibility for their own illness. But they're seemingly unconcerned that such an approach will limit future developments of a greater understanding and more effective treatment for CFS. It seems like medicine as a rejection of science. From my reading, it does seem to be part of a philisophical position which see CFS as a cultural development, stemming from liberal commitments to equality of opportunity which are practically unrealisable, and a desire to limit the expectations of patients for help from the medical community.

I've really not read much CFS stuff recently, as when I last did it all seemed so poor I decided it wasn't worth my time. One trouble with asking SW this stuff, is that I really don't trust him to be honest with patients about it. He see treatment as requiring a manipulation of their beliefs, and I think that makes any honest conversation very difficult. It seems like his papers speak far less openly about this side of things once he realised patients were reading them too (or maybe he abandoned those ideas?)

Anyone got a link to the original Wessely paper, I either only get other peoples comments on the article of teh BMJ's site which only lists the paper but not a copy of it?

Thanks,

Maybe you could ask Wessely to make his papers available to CFS patients. Seeing as there are so many quotes of his floating arround, presumably he'd rather they were read in their full context. Me too!
 

fresh_eyes

happy to be here
Messages
900
Location
mountains of north carolina
From my reading, it does seem to be part of a philisophical position which see CFS as a cultural development, stemming from liberal commitments to equality of opportunity which are practically unrealisable, and a desire to limit the expectations of patients for help from the medical community.

Interesting, Esther12 - can you expand on that?
A lot of the more sociological 'explanations' of CFS look pretty absurd from our side of the pond, where there's no welfare state and no state-supported medical care - so we don't get any of those supposed 'secondary gains'.
 

Eric Johnson from I&I

Senior Member
Messages
337
> a philisophical position which see CFS as a cultural development, stemming from liberal commitments to equality of opportunity which are practically unrealisable

Can you clarify/elaborate just a little
 

gracenote

All shall be well . . .
Messages
1,537
Location
Santa Rosa, CA
a little more context

If you could get context and explanation for this quote, I'd be really interested:

"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."

It sounds like honest, open quackery to me - I've not read the full paper but cannot imagine any justifiable context that could allow a doctor to decide that it is 'more important' for a patient to believe something, even if it may not be true, because of the affect of their beliefs. I'd also be interested to see if he thought it was reasonable for CFS patients to be especially sceptical of his involvement in studies to see if the have a persistant viral infection because of claims like the one above. Does he question if such beliefs may affect his own impartiality?

Esther, I have a copy of the paper. Here is a little more context.

CHRONIC FATIGUE SYNDROME:
A PRACTICAL GUIDE TO ASSESSMENT AND MANAGEMENT


M. Sharpe, M.A., M.R.C.P., M.R.C.Psych., T. Chalder, R.M.N., M.Sc., I. Palmer, B.M., B.Ch., M.R.C.Ps ch., and Simon Wessely, M.A., M.Sc., M.D., F.R.C.P., M.R.C.Psych.

1997

The Management Plan
General Aspects of Management

Before beginning treatment it is essential that physician and patient agree, at least tentatively, on a positive understanding of the illness that is acceptable to both. The precise mechanisms involved in the symptom of CFS are uncertain and controversial. Rather than doctor and patient becoming bogged down in such disputes, we advocate a pragmatic approach that promotes those illness beliefs and models that lead to positive action. 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 [85,86] 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 [87].

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 [88] offers a positive alternative to the disease explanations Table 4. Possible illness perpetuating factors in case example described above. The belief that symptoms are due to disturbed hypothalamic pituitary function [89,90] does not interfere with rehabilitation and may also provide a rationale for the prescription of antidepressant drugs if relevant. Similarly, the idea that CFS can be triggered by an episode of acute Epstein Barr virus infection [91] does not imply a progressive pathology, and leaves the way open for a discussion of other perpetuating factors. Other positive explanations, all of which might be correct, and none of which are known to be incorrect, are listed in Table 5. The physician’s overall aim is to broaden, rather than confront, patients’ beliefs and behaviors so that they embrace a wider range of possible explanations for continuing ill health, and hence a wider range of treatment options [92-941]. Its essence is to move the discussion from what started the illness to what obstacles stand in the way of recovery. Such a model naturally leads to a discussion of how these obstacles may be overcome.

TABLE 4. POSSIBLE ILLNESS PERPETUATING FACTORS IN CASE EXAMPLE

PERPETUATING FACTORS

BIOLOGICAL
Effect of profound inactivity
Effect of chronic emotional arousal
Neurobiological factors as yet unknown

COGNITIVE AND BEHAVIORAL
Belief in viral infection
Fear of making disease worse
Reduction of activity

SOCIAL
No job
Reinforcement of sick role by mother and doctor

TABLE 5. ILLNESS MODELS

ILLNESS MODELS TO PROMOTE
Glandular fever as trigger
Stress altering immune function
Secondary handicap
Sleep disorder
Hypothalamic dysfunction

ILLNESS MODELS TO AVOID
Persistent virus
Primary muscle disorder
Severe allergy
Progressive immune deficiency
 

Mithriel

Senior Member
Messages
690
Location
Scotland
I have been ill for over forty years now. In that time, as in anyone's life I had had periods of extreme stress.

I can state categorically that stress has never had any effect on my symptoms. In fact, like many people with ME I find that a sudden stress can make my symptoms less, though I will suffer for it later.

All my symptoms worsen on EXERCISE. The more I do the worse I get simple as that. The effort could be dealing with something worrying or distressing or be having good fun with friends but it is exactly the same payback for exactly the same amount of movement.

Holmsey go to http://www.meactionuk.org.uk/index.html and read the essays by Margaret Williams. They are fully referenced and will tell you all you need to know about ME and CSF in the UK.

Personally, in the late 80s I was becoming hopeful about a treatment for my illness, at a time when I still had the chance of a life. In the years since as SW and the psyches have increased their stranglehold my life has become worse. There are no treatments, the threat of have my symptomatic medication removed hangs over me and I have the worry about being locked in a psychiatric ward.

If a doctor's patients see such little improvement since he started his interventions surely we are entitled to feel he has failed.

Mithriel
 

Advocate

Senior Member
Messages
529
Location
U.S.A.
Personally, in the late 80s I was becoming hopeful about a treatment for my illness, at a time when I still had the chance of a life.

Hi Mithriel,

This statement makes me so sad. I am so sorry.
 

Esther12

Senior Member
Messages
13,774
Interesting, Esther12 - can you expand on that?
A lot of the more sociological 'explanations' of CFS look pretty absurd from our side of the pond, where there's no welfare state and no state-supported medical care - so we don't get any of those supposed 'secondary gains'.

I'm pretty sure I remember reading a paper that examined possible correlations between CFS rates and different social variables, and was unable to find any. I really don't know if this viewpoint has now be totally abandoned. There seems to be a lack of repudiation of failed theories for CFS, so it's difficult to know if they're just keeping quiet or have really changed their mind.

I'm afraid this is all from memory, so I'm not going to be able to write a proper post, with references etc. I explained some of what I thought in greater length in the 'Psycholoigical model' thread which TomK has in his signiture. I was recently worrying that I might be presenting a really false view of SW and co based on my own fading memories, but I then read a piece he wrote in which he recommended his ten favourite books (http://bjp.rcpsych.org/cgi/content/full/181/1/81), and what he wrote fitted so well with my own constructed image of him it was ammusing. I expect my reading of this piece was partly influenced by my prejudices though. He did speak about being uninterested in a lot of medical pracitce, and being drawn to psychology because it had a clearer link to philosophy, sociology, history and the arts. He also mentioned 'The Female Malady', a book by a feminist English literature professor who thinks PMT is a linguistically developed cultural something or other. She's not keen on CFS, multiple-personality disorder, PTSD, or anything like that either. I thikn he's of that ilk. All fine and dandy so long as you're kept in the philosophy department - but it's not acceptable to start imposing this stuff on patients.

Esther, I have a copy of the paper. Here is a little more context.

Thanks a lot. I don't suppose you'd be able to send me a copy? Scary stuff imo. A really wierd approach to medicine. Pure pragmatism, without any interest in the truth. But the search for the truth is what drives us foreward - even if it has short-term costs, the long-term gains have been shown time and again.
 

Advocate

Senior Member
Messages
529
Location
U.S.A.
PRETEND you believe the patient

Does anyone remember which UK practitioner said this to a group he was addressing? Or where I can find the exact quote? It might have been in a transcript of a meeting. I find the advice to pretend that you believe a patient who is reporting symptoms very disturbing.
 
K

kim500

Guest
''The average doctor will see they are neurotic and he will often be disgusted with them.''
Wessely, S. (1990). Chronic Fatigue and Myalgia Syndromes. Psychological disorders in General Medical Settings. Ed: N Sartorius at al Pub: Hogrefe & Huber.
.
Anyone got a link to the original Wessely paper, I either only get other peoples comments on the article of teh BMJ's site which only lists the paper but not a copy of it?

Holmsey, it's a book chapter.

Title: Psychological disorders in general medical settings / edited by Norman Sartorius et al.
Publisher: Toronto ; Lewiston, N.Y. : Hogrefe & Huber, c1990.
 
K

kim500

Guest
Good heavens, I just read the quote via Esther. How amusing. Tuberculosis was also discovered a long time before being cured. So was leprosy. The truth is the truth.

This sounds like a typical result of Postmodernism and the lamentable decline of the Western intellect.

Exactly. Much, much too much Lacan.
 

gracenote

All shall be well . . .
Messages
1,537
Location
Santa Rosa, CA
how to send a copy

Thanks a lot. I don't suppose you'd be able to send me a copy? Scary stuff imo. A really wierd approach to medicine. Pure pragmatism, without any interest in the truth. But the search for the truth is what drives us foreward - even if it has short-term costs, the long-term gains have been shown time and again.

I'd be happy to, Esther. Could someone tell me how?

I tried providing a link to this article, but since it came from my college database with restricted access it doesn't work. (It's from ScienceDirect.com.)

I didn't find it on Google Scholar so I think the only source is paid.

I tried to copy and paste into a blank Word document but the format gets pretty messed up, although this could be done and I could then send it as an attachment.

I have a scanner on my copy machine but have never used it. I think I need to download software for it. Yikes, something new to learn. Not sure I'm up for it today. Plus, it already looks like a scanned article so I think the quality would be very poor.

I could photocopy it and snail mail it.

Any other suggestions?
 
K

kim500

Guest
> a philisophical position which see CFS as a cultural development, stemming from liberal commitments to equality of opportunity which are practically unrealisable

Can you clarify/elaborate just a little

Basic Derrida.

via Lacan (Freud + post-structuralism).

splendid for literature, disastrous for medicine.
 

Esther12

Senior Member
Messages
13,774
I'd be happy to, Esther. Could someone tell me how?

I tried providing a link to this article, but since it came from my college database with restricted access it doesn't work. (It's from ScienceDirect.com.)

I didn't find it on Google Scholar so I think the only source is paid.

I tried to copy and paste into a blank Word document but the format gets pretty messed up, although this could be done and I could then send it as an attachment.

I have a scanner on my copy machine but have never used it. I think I need to download software for it. Yikes, something new to learn. Not sure I'm up for it today. Plus, it already looks like a scanned article so I think the quality would be very poor.

I could photocopy it and snail mail it.

Any other suggestions?

Whoa whoa. I didn't mean to give you that much work, but thank you for the offer.

Could you save it as a PDF file and then send it as an attachment? Does it come as a PDF? Can you fix attachments to posts on this forum? I'm not sure how your access works. Don't worry about it if it's much trouble, I'm sure I could get a copy sooner or later myself. Ta.