Professor Simon Wessely says he is misunderstood

[Sean]

These papers posted by Bob clearly demonstrate the inconsistency in Wessely's basic position, both as internally contradictory statements, and as huge gaps between his model and the actual evidence.

 

[alex3619]

There is a logical fallacy called begging the question. I have a half written blog on this. The more I see of the DBM, the more I see that its fallen to begging the question. If you buy all their conclusions, the data seems (if you don't look too closely) to vaguely support their conclusions - or at least you can construct arguments that look like that. However if you think something else is at play, or that at least their conclusions are wrong, their arguments fall apart. First you have to believe, then you can construct an argument to support that belief. That is the essence of begging the question, at least to my current understanding. For some reason I have trouble telling this fallacy apart from circular reasoning, though they are different. They are sufficiently close that its easy to confuse the two.

 

[Stukindawski]

Yes, maybe they have hypothesised that the 'phobia' element comes later in the course of the illness.
But I've never seen this clarified anywhere.

I remember seeing this paper a while back:- http://forums.phoenixrising.me/inde...e-same-coin-chronic-fatigue-and-burnout.3784/

I would imagine Wessely would argue that a virus based burnout where exercise leads to increased fatigue over a significant period manifests in a fear of exercise that persists after this 'deus-ex-machina' virus has gone (it might sound a little sarcastic, but it is a god from the machine type resolution - it's a vague and convenient theory at best).

If you're able to get access to this text:- http://www.nature.com/nrn/journal/v12/n9/abs/nrn3087.html I think it outlines his position somewhat.

It can be read at: https://docs.google.com/file/d/0B7N...C00NDA4LTgyMGItOTU3MGU2ZGVjZDkz/edit?hl=en_US but I'm not sure about the access rights so, be warned on that. It's not been taken down anyway.

It's interesting he mentions about autonomic symptoms and their relation to de-conditioning. I've been researching for an upcoming blog about GET and I was going to make the point that confirmed autonomic symptoms like Orthostatic Hypotension and POTS, as well as reduced aerobic threshold following exercise, post-exertional inflammatory cytokine irregularities and B-Cell irregularities would need to be reversed in a rigorous test of this treatment.

I was also going to argue that since the definitions used to this point do not include these signs and symptoms, the operational reliability of the definitions used cast too wide a net. Logically it's not impossible that multiple fatigue-related illnesses of unknown aetiology exist. Personally I find the 'pissing in the wind' approach to GET trials ethically distasteful, since this lack of clarity such a simple inference.

 

[taniaaust1]

INVITED REVIEW

The act of diagnosis: pros and cons of labelling chronic fatigue syndrome​

Marcus J H Huibers and Simon Wessely​

Psychological Medicine, Page 1 of 8. f 2006 Cambridge University Press​

doi:10.1017/S0033291705006926​

http://www.simonwessely.com/Downloads/Publications/CFS/179.pdf​

​

"Like it or not, CFS is not simply an illness, but a cultural phenomenon and metaphor of our times."​

​

"Labelling physical symptoms as an illness carries the risk of the symptoms becoming self-validating and self-reinforcing, often promoted by the Internet, support groups, self-help literature and mass media."​

​

"The ways in which CFS patients perceive themselves, label their symptoms and appraise stressors may perpetuate or exacerbate their physical and psychosocial dysfunction (Afari & Buchwald, 2003)."​

​

"Many CFS patients, particularly in hospital settings, share a strong conviction that their symptoms are physical in nature. A plausible explanation is that biological illness attributions provide legitimacy, alleviate personal responsibility and protect against stigma (HortonSalway, 2001), as opposed to psychosocial illness attributions. As a result, CFS patients will seek doctors who offer explanations in keeping with their own illness beliefs."​

​

"Diagnosis elicits the belief the patient has a serious disease, leading to symptom focusing that becomes self-validating and self reinforcing and that renders worse outcomes, a self-fulfilling prophecy, especially if the label is a biomedical one like ME."​

​

​

Bob.. thank you for finding something which is showing his true colours ,Wessely quotes he's made over the years. Over the years esp into more recent times, he's gotten more "cautious" about what he says, thou he maintains the same beliefs he always had and will work hard to make people think he's never said crap like the quotes above.

I think he's more cautious in "how" he says things now due to how bad he will end up looking in the future when better science is done.. Im sure he dont want law suits from patients who have been harmed by the things he's said and the influence he's had over the whole medical profession.

keep looking back in his early years and you find out MANY quotes which show his true views. (thou as I said before in one of my posts.. there seems to be a coverup going on on what articles/studies he's been involved in and done and pubmed not showing up his name on them)


didnt he also at one point write under a couple of other fake names too?? Im trying to remember.. I remember one ME/CFS specialist did. Can anymore remember way back and if he did and what was the other names he used to publish under? Does anyone know?

I think what we as a community should do is to collect and put together a list of everything, every study and every article he's ever published on ME/CFS with links (we can put it all in order of year he published it). By doing that.. all his stuff would be out in the open for easy viewing!!! ..even those things he's removed his name from at pubmed level thou he was author too. He'd hate it if the community organised enough to do this so any of his work easily found. Part of the reason why people believe him.. is he's hard to pull up on as it can be hard to find the links for things even if u are looking a bit. The fact this thread even exists and there has been such a debate shows that. We could then also more easier point out to media people stuff he's past said but now denies..

Id love a journalist to do a public media report on the "Two Faces of Wessely"

 

[Valentijn]

I think Wessely is of the belief that belonging to a social network (i.e. a support group) reinforces illness-beliefs, and therefore prolongs illness.
So I'm not sure if he believes that tea and sympathy are actually the best approaches to treatment.

The same for receiving welfare benefits: I think he believes that receiving welfare benefits reinforces illness beliefs.
My understanding is that some of the NHS clinics do not provide letters/evidence for welfare benefit claims because such letters would be a 'conflict of interest'. (i.e. they would not help the patient get better, but would reinforce the patients' belief that they are ill.)

I'm going from memory, so I could have some of this wrong, but I seem to remember seeing evidence for this.

The following excerpts are from a "Summary of the talk given by Professor P K Thomas CBE DSc MD FRCP and Dr S Wessely BM BCh MRCP MRCPsych on 2.11.93 - At a full board meeting held in Richmond House in the presence of the Rt Hon Nicholas Scott MBE MP". Presumably the "full board meeting" was of the DLAAB (Disability Living Allowance Advisory Board).

It's in "National Archive NB 141-1.pdf" - one of the ones recently freed due to a freedom of information request. The summary starts on page 6, Wessely's contribution starts on page 8, gets interrupted by a letter to him on page 9, then contains these actual quotes on page 10.

4. The prognosis for those who acquire the label of "ME" is at the moment poor. The only three prognostic studies conducted to date all suggested that poor prognosis, and failure to improve, is closely related to illness beliefs of a solely physical origin to symptoms.

5. It seems likely that the greater the disability, the more likely is the disorder to be associated with either misdiagnosed psychiatric disorder or poor illness management. Many are iatrogenic ie Doctors contribute in perpetuating the disease and its symptoms.

6. [...] It is a treatable disorder but its management is deplorable at present, the worst thing to do is to tell them to rest.
Rehabilitation is essential, exercise is good for these patients, prolonged inactivity causes adverse physical and psychological consequences.
Most cases can be expected to improve with time.

7. As regards benefits: - it is important to avoid anything that suggests that disability is permanent, progressive or unchanging. Benefits can often make patients worse.

(Bolding added by me.)

A good example of clear statements being made behind doors closed to exclude the ME community and the public.

 

[Valentijn]

Page 18 of National Archive NB 141-1.pdf, the 2nd page of a letter from Dr Simon Wessely to Dr Mansel Aylward of the Department of Social Security, regarding the labeling of CFS/ME as a neurological disorder. I think the date says "1st Nov 1993", though someone wrote "Oct" over "Nov".

[...] The main difference between CFS and the major psychiatric disorders is neither aetiological, nor symptomatic, but the existence of a powerful lobby group that dislikes any association with psychiatry.

It is also a most unfortunate message to send sufferers. It colludes with the erroneous belief that this is a severe disorder of neurological functioning, for which there is little effective treatment, and a poor prognosis. It will discourage any sensible efforts at rehabilitation. As we, and now many other groups, have shown that the only determinant of outcome in this condition is strength of belief in a solely physical cause, then it will also itself contribute to disability and poor outcome. I cannot believe that is the intention of the Department, if only on grounds of cost!

I believe the Department is making an error if it accepts the partisan views put forward by pressure groups as a basis for making medical decisions. I also believe that it is a decision that the Department will come to regret, since it seems likely the result will be an ever increasing stream of claims for permanent benefits in people who might otherwise have had a chance of recovery.

(Bolding is from the original document, underlining is mine.)

I feel sleazy just transcribing this trash

 

[Valentijn]

If you're wondering why so many neurologists seem to hate us, here's an article addressing them from Dr Simon Wessely at http://jnnp.bmj.com/content/54/8/669.full.pdf , dated 1991.

However, the simple combination of history, examination and basic tests will establish those who require further investigation. [48] [49] In the majority this simple screen will be normal, and over investigation should be avoided. Not only is it a waste of resources, it may not be in the patients' interest, and may reinforce maladaptive behaviour in a variety of ways.

(My bolding.)

So if very basic tests are normal, no more doctors for you!

Generally this article is a good example of being less blatant about what he believes about CFS, aside from the above excerpt. There's quite a bit of not-quite-explicit statements about CFS being a psychiatric disorder - but after about a dozen insinuations, the message is pretty clear.

 

[Valentijn]

Another letter from Dr Simon Wessely to Dr Aylward is at page 219 of National Archive NB 141-1.pdf. This one is CCed to two ME organizations involved in the DLA discussions. It was written 10 January 1992.

It is far more vague and conciliatory than his private letter to Dr Aylward that he wrote on 1 Oct/Nov 1993. For example, he refrains from saying the lobbying groups are the only reason it's rejected as being psychiatric

It is certainly true that I and my colleagues consider that anxiety about the consequences of activity is one factor perpetuating disability in CFS patients. However, I should point out that, unlike the studies of muscle function, this is by no means proven. Furthermore it is probably only one of many factors contributing to disability, and even then may only be of importance in a small group.

He also rejects hysteria or "motivational factors" in CFS, but stays silent regarding psychosomatic theories. I think that is a common way that patients and advocates are placated - say that CFS is not "Psychiatric Condition X", and let them infer that he doesn't think CFS is psychiatric at all, when the reality is that he thinks CFS is "Psychiatric Condition Y".

It's also important to see that he is addressing a different subject - eligibility for temporary benefits for CFS patients in this open letter versus labeling CFS/ME as neurological in the private letter. He seems to consistently be very much in favor of CFS/ME patients being seen as disabled, even severely - but also curable, using his psychological magic.

This ties in with his repeated message that psychiatric disease is just as real, serious, and disabling as physiological disease. While that is true, the way in which he uses CFS as a platform for that message is rather harmful to getting appropriate treatment for a physiological disease, if doctors listen to him and pursue primarily psychiatric treatment and reject investigation.

 

[Firestormm]

Well, if anyone has any doubt, you've only got to read the following paper...

I am going to read the whole thing, thank you Bob, just wanted to post the abstract to perhaps offer some context. The above was a review or 'narrative synthesis of the literature' - to me that means review anyway :

Edit:

"It should be noted that the majority of referred statements comes from discussion papers, rather than from studies presenting empirical support for the accounts that are made."

The act of diagnosis: pros and cons of labelling chronic fatigue syndrome

MARCUS J. H. HUIBERS1* AND SIMON WESSELY2

2006: http://www.simonwessely.com/Downloads/Publications/CFS/179.pdf

ABSTRACT

Background.

One of the many controversies surrounding chronic fatigue syndrome (CFS) is the
possible impact of the diagnostic label : is it disabling or enabling? In this paper, we discuss the pros and cons of labelling CFS.

Method.

A narrative synthesis of the literature.

Results.

Diagnosed CFS patients have a worse prognosis than fatigue syndrome patients without such a label.

The ways in which CFS patients perceive themselves, label their symptoms and appraise stressors may perpetuate or exacerbate their symptoms, a process that involves psychological, psychosocial and cultural factors.

Labels can also lead to conflicts with doctors who fear diagnosis might lead to worse outcomes.

However, on the other hand, finding a label that fits one’s condition can provide meaning, emotional relief and recognition, whilst the denial of the diagnosis of CFS in those who have already reached their own conclusion can be very counter productive.

The act of diagnosis therefore seems to be a trade-off between empowerment, illness validation and group support, contrasted with the risk of diagnosis as self-fulfilling prophecy of non-recovery.

Conclusions.

The answer to the question of ‘to label or not to label ’ may turn out to depend not on the label, but on what that label implies. It is acceptable and often beneficial to make diagnoses such as CFS, provided that this is the beginning, and not the end, of the therapeutic encounter.

I wonder how this might apply to other conditions also? Surely it's a fair question to apply to say, cancer. You hear you have cancer and what happens? Is the diagnosis or label positive - you have an answer perhaps to a persistent problem and perhaps it is treatable - or does confer the feeling that 'my life is over'.

What does a label of CFS or ME imply? What did it imply to you when you received it? For me I was pissed as hell. Last bloody diagnosis I wanted. But that was because of the 'stigma' and general lack of understanding, I get that now, but at the time - I would have settled for and still sometimes would - bubonic plague or, indeed, cancer.

There is also an issue here with a label that conveys a 'long term condition'. That is not to say that we don't all fight like buggary to resist the limitations of this condition, because we all do. I really believe that and what does annoy me about these papers - and others - is that they presume too much.

But. In the above example it is a review of literature and I need to read the thing in full. But does our diagnosis convey anything that might inhibit our attempts at recovery? Is it perhaps that there is no clear-cut effective treatment for this condition that can lead to despair and hopelessness. Is CFS/ME unique in this respect?

Talking about 'feelings' here and not limitations imposed by the condition itself. Am going to do a 'funny' now - brace yourselves:

It is acceptable and often beneficial to make diagnoses such as CFS, provided that this is the beginning, and not the end, of the therapeutic encounter:

Which is why we oversold the results of the PACE Trial and why Newspapers were so sensationalist - we told them to give you hope dudes!!

Sorry

There was a phrase doing the rounds I seem to recall from one paper somewhere: 'therapeutic nihilism'. It's still in use to my knowledge.

On the one hand, it is considered ill-advised to give patients no hope, and so therapies can provide some (as well as actually helping some or all people to lesser or greater extents - we are all different as are the practitioners etc. etc. etc.), on the other there is no excuse for only therapy.

So does the label of CFS or ME come with negative connotations? Are the stigma's, is the prognosis, the lack of knowledge, the lack of a cure, etc. etc. any more likely to lead to a state of 'surrender' than any other label or diagnosis? Do some people hear about a possible cause, believe that to be true, to such an extent that they give up trying? Do people give up trying for no reason, to any greater or lesser extent than in any other chronic condition?

Example. True and recent. A lady attends a local support group (real one not internet) in her community. Gets told that with this diagnosis there is no chance of recovery. No chance. Got it for life. Was very upset by this as were the various medical professionals who are engaged with her care.

Of course the above paper is solely about our condition. So no other comparisons are made. Anyway, need to read the whole thing. But I'd say that yes, this label and diagnosis does transfer a feeling of 'no hope' on balance, I would. And, it perhaps needs saying, that engaging on forums and such can be both enabling and disabling.

In my experience, people who might even be regulars and have reported 'recovery' or 'improvement' - are not always warmly received, or indeed believed - and that these are not by any means the largest threads or seen as hopeful or inspiring stories. But there are some probable good reasons for this and not all of them obvious I more than appreciate this and perhaps people are inspired and feel hopeful when they read such things but do not comment about it.

Anyway, must read the paper...

Edit: Perhaps this is one that Esther might like to feature on her thread when she's over her cold? Just a thought.

 

[Firestormm]

As I am reading this now - waiting for my meds to 'kick-in' and before trying to get out in the sunshine. Hopefully, more successful than yesterday's bloody effort; I figured I'd expand further on the paper cited by Bob - with a few more extracts from that paper:

The act of diagnosis: pros and cons of labelling chronic fatigue syndrome: 2006: http://www.simonwessely.com/Downloads/Publications/CFS/179.pdf

page 2
ME versus CFS: implications of the label

"Apparently, the label ME itself may have an adverse effect compared to the label of CFS."

Ouch! Interesting section...

page 2
Illness perception

"There is compelling evidence that a pessimistic illness perception is an important perpetuating factor in CFS....

Additional, although indirect evidence on the impact of illness perception comes from a recent trial in which conversion disorder patients improved when told that full recovery constituted proof of a physical aetiology, whereas non-recovery would constitute proof a psychiatric origin (Shapiro & Teasell, 2004)."

Personally, I don't see the relevance to my condition, but if that's what was found, that's what was found I guess.

"Ultimately, a pessimistic illness perception can become a self-fulfilling prophecy of nonrecovery. This group of CFS patients tends to view their symptoms as part of an overwhelming, mysterious, unexplainable disease that struck them out of the blue and from which they most likely will never recover. These illness expectations are often fuelled by the media, support groups (not least because support groups have an inherent bias towards those who have not recovered) and other sufferers, as we will discuss in the following section."

Hand on heart. I am not one of that group. Not sure I agree with the support group notion of fuelling pessimistic illness perceptions - but I understand what they are getting at certainly (my recent example above aside). But. There does come a point I think where one needs to compare prognosis/perception without support group and prognosis/perception with. Also support groups do fulfil a major benefit - social interaction, transfer of information and improved quality of life. In my view and with caveats. I am no pessimist. I do get pessimistic. But I make the most of what I have now and keep on pushing at those boundaries as and when I can - and with help - and I think most of us do.

page 2-3
Psychosocial and cultural factors

Would take me too long to go through that crock of crap. Does it influence some people? Yes. Does it influence everybody? Yes. To what extent? Who the hell knows. Smacks of the whole 'yuppie flu' crap to me. Completely out of date I would argue - but I need to read it more thoroughly and not (as I have done) get dismissive or not.

Page 3
The road to diagnosis
"Not all, indeed not many, patients fulfilling the criteria for CFS receive a formal diagnosis. As it appears, CFS is largely under-detected in the general population. The probability of receiving a formal diagnosis depends on individual factors
such as access to health care, one’s personal view of the illness, readiness to engage in a lengthy process of vigorous health-care seeking, the determination to find a diagnosis that matches one’s symptoms, beliefs and aspirations,
and on the attitude of the doctors that are consulted."

Based solely on my experience and understanding, I would suggest that this is out of date. I would suggest that most if not all the people I have met have a formal diagnosis and that that diagnosis is better today than it was even when this review of previous literature was completed. The impact of the publication of the NICE Guideline alone has to be taken into account here (it happened after this review of course).

Again I think the papers reviewed in this section are rather old, but:

"...most importantly, the act of labelling is an intervention in itself that brings an end to the unbearable burden of uncertainty. A controversial diagnosis like CFS may not be first choice as a label, but it is better than nothing at all (Zavestoski et al. 2004)."

Is it? Well based on my experience it bloody well wasn't. Upon reflection however, I think that yes, having a formal diagnosis, and repeated assessments over the years - not because I asked for them but because that's the way things have happened, namely, reassessments attempting to rule other things out or in - has given me some better grounding.

So, yes, it is better than nothing. Then again, it's not like we get to choose is it? I mean I didn't march into the immunologist and say 'Right, mush. I've made the decision for you. I have ME!' Or at any point thereafter...

p 3-4
The battlefield of medical practice
"Although the diagnostic process of CFS seems straightforward and unambiguous, the nature of CFS often spirals bitter debates between doctors and patients (Sharpe, 1998)."

I think the process surrounding it's nature can lead to debate between doctors and patients these days. Again it's an old paper and perhaps reflects more of the uncertainty and disbelief prevalent at the time. That said, you do hear reports of doctor's 'not getting it'. Confusion prevails. But again NICE Guideline is there now and it wasn't before...

"Medical trainees (Jason et al. 2001) and qualified doctors (Steven et al. 2000) alike judge CFS primarily to be a psychological or psychiatric problem. Patients who present with a self-diagnosis of CFS are regarded as difficult and time-consuming. Such attitudes of hostility may, however, be confounded by doctors’ frustrations of being unable
to help these patients (Hartz et al. 2000; Salmon & Hall, 2003)."

Well that's reflective of a lot of the opinions I have heard from patients certainly. Again, though education is an issue - clearly - and the NICE Guideline.... well you get the point. I have certainly been confronted by doctors' frustrations and that is something hard for a patient to hear or witness. Christ you expect the doctor to know - not to procrastinate. Mind you my expectations of modern medicine were too high - I didn't appreciate and was not helped to learn - the amount to which I had to work at things and the extent to which I couldn't depend on modern medicine. I was very naive - understandably so I think but naive nonetheless.

"Consequently, many CFS patients encounter doubts, disbelief and rejection when consulting their physician, and feel the reality of their symptoms is denied. The search for diagnosis then turns into a contest over diagnosis. This battle may contribute to the course of illness : if you have to prove you are ill, you cannot get well (Hadler, 1996)."

I wonder how much that is true today. Interesting... and not solely about our condition either but in general... Is it down to the physician - does changing a doctor help? Again an old paper. Be interesting to revisit this one perhaps.

"At best, these conflicts over the diagnosis of CFS will lead to negotiations between doctors and patients (Zavestoski et al. 2004), but many patients will retreat from their doctor’s office and reach out to others for help (Stanley et al. 2002): doctors who are sympathetic to the cause of CFS, alternative therapists who offer explanations in keeping with their own views, and, if all else fails, the act of self-diagnosis."

Hmmm.... well I happen to think that all patients are now having to negotiate with their doctors over just about everything, including appointment lengths... I do know of patients that have not engaged with their GP for a long long time because of perceived rejection and disbelief. The rest is probably true too in part. But I think this has again been slowly addressed with greater knowledge and understanding in more recent years. And the rise of scepticism, but patients whatever their diagnosis and even if they are being treated for it - will always been tempted by 'understanding' alternative therapists. Always. Human nature...

Ok so some advantages now. Was beginning to worry:

page 4
Labelling CFS: the advantages

"Most arguments in favour of labelling CFS highlight the empowering appeal of a diagnostic label that fits one’s symptoms. The act of diagnosis is central to the experience of CFS. From this perspective, shared by many patients, receiving a CFS diagnosis is an intervention in itself, a breakthrough that brings an end to the burden of uncertainty and de-legitimization and that determines the course of action to follow.

Diagnosis generates comfort, relief, acceptance, credibility and legitimacy and leads the way to treatment and social and economic benefits. Diagnosis leads the way to patient organizations that provide support and information, although this information may not be consistent with the evidence base. Diagnosis can provide a refuge that preserves self-esteem and protects from (or takes away) stigma and the feeling of guilt. Diagnosis offers a socially accepted reason for failure to cope, especially if all miseries can be pinned on that disease. The diagnosis of CFS brings meaning to the suffering, a cathartic voice, much like a religious experience.
It brings understanding and acceptance from others as well, although it does not generate sympathy from everyone."

Well. Buggar. Of course for those who feel ME is different (and more legitimate) than CFS then 'Houston we have a problem', aside from that then, this sounds like something on Wikipedia. Hell I could have written it. And I don't on balance agree with any of it I am afraid. Getting this label and diagnosis - is the opposite of cathartic. Does my bloody head in! Am kidding - in part. I feel all warm and fuzzy and wholly embraced by my 'community'

Labelling CFS: the disadvantages

I think Bob covered some of this and it's pretty self-evident to me, so I'm not going to repeat it. On balance I would say that having a diagnosis that you believe is true (or don't question) is more advantageous than not. What that diagnosis is - well, refer to the above comment - but the answer will influence the effect in my opinion.

So we've seen the hypothesis and now we get to the nitty-gritty of the discussion: To tell or not to tell ?

You know I would say that if I were looking at this today I would be tempted to compare two cohorts of patients, both with confirmed diagnoses, one managing on it's own, and one engaged with an ME Service; against a cohort who did not have a confirmed diagnosis i.e. before a diagnosis was conferred.

I know this raises it's head from time to time, so a wee bit of background. I am not receiving, and have not received, management interventions from an ME Service e.g. from psychologist or OT. What I have received is consultations in recent years with the medical specialists that are part of my local ME Service. But I will be and soon I hope. Want to 'suck it and see' for my self.

So, Professor Pinching I saw twice over two years before his retirement - immediately before he retired being my last one and a few emails exchanges with him; and one consultation with his replacement Dr Gardner at the end of December 2011. Following Pinching's retirement in Sept. 2011 the Service basically imploded. It has been effectively suspended ever since pending a review with which I have been involved to the best of my ability, and have not been alone in this. And a referral from Gardner to the OT never took place. Am seeing Gardner again next month for review. So. I ain't necessarily 'alright Jack' or a 'believer'

Anyway, this section of the paper To tell or not to tell? is again in my opinion outdated. The decision was made. NICE was published. People are told in a timely fashion. Now, whether or not this question has influenced the decision to not make a diagnosis immediately, I don't know. Any thoughts?

Under NICE it is (from memory) afforded at 4 months. I tend to think it is given at this time to e.g. allow for any infection or trigger to better have a chance to clear i.e. PVFS or to allow for any alternate explanations to be made.

Thought you might like this part:

page 5
"Sound evidence for the treatment of CFS is still poor. For patients seeking active treatment, cognitive-behavioural therapy (CBT) and graded exercise therapy (GET) are currently the best available options (Whiting et al. 2001).
However, it should be kept in mind that evidence from randomized trials bears no guarantee for treatment success in routine practice. In fact, many CFS patients, in specialized treatment centres and the wider world, do not benefit from these interventions.
When it comes to the management and treatment of CFS patients, there is still a lot to be learned."

And who wouldn't agree with that last sentence?

And finally:

"Although we have focused on psychological, psychosocial and cultural factors only, we do not wish to deny there are physical complexities of CFS that exist beyond our present scope.

We also acknowledge some people will argue that the only question worth asking about CFS is what is the cause, and that discussion about the meaning of diagnosis and its risks and benefits is at best meaningless and at worst an offensive distraction.

Finally, it should be noted that our conclusions are primarily based on common sense, in the absence of a sound evidence base."

Do I find anything I have read in this paper offensive? No. Pointless? Yes. But that's because reading all of this doesn't really get me as a person and patient any further forward. Indeed, my head is now in danger of imploding. Does it mean these papers should not be written? No. Of course not. And what I think makes not a scrap of difference anyway.

Fire

 

[Firestormm]

Page 18 of National Archive NB 141-1.pdf, the 2nd page of a letter from Dr Simon Wessely to Dr Mansel Aylward of the Department of Social Security, regarding the labeling of CFS/ME as a neurological disorder. I think the date says "1st Nov 1993", though someone wrote "Oct" over "Nov".


(Bolding is from the original document, italics are mine.)

I feel sleazy just transcribing this trash

Valentijn, this one has been widely discussed I believe. Wessely does not even now believe there is sufficient evidence to equate with 'encephalomyelitis'. That is his position and that is germane to his comment. If evidence is forthcoming, he'd change his stance. Well, he might fight a bit, but I'd wrestle him to the floor Depends on the nature of and prevalence of any evidence of course - but until the situation changes his position will not change I do not expect. Of course your source is 1993 but I expect it holds true. And this is largely why neurologists have a hard time acknowledging this categorisation.

The uncertainty is, I think, reflected by NICE 2007, but it does nothing to belittle the seriousness and potential debilitation of this condition:

Chronic fatigue syndrome (CFS)/myalgic encephalomyelitis (or encephalopathy) (ME) is a relatively common illness. The physical symptoms can be as disabling as multiple sclerosis, systemic lupus erythematosus, rheumatoid arthritis, congestive heart failure and other chronic conditions. CFS/ME places a substantial burden on people with the condition, their families and carers, and hence on society...

Many different potential aetiologies for CFS/ME – including neurological, endocrine, immunological, genetic, psychiatric and infectious – have been investigated, but the diverse nature of the symptoms can not yet be fully explained. The World Health Organization (WHO) classifies CFS/ME as a neurological illness (G93.3), and some members of the Guideline Development Group (GDG) felt that, until research further identifies its aetiology and pathogenesis, the guideline should recognise this classification. Others felt that to do so did not reflect the nature of the illness, and risked restricting research into the causes, mechanisms and future treatments for CFS/ME...

http://publications.nice.org.uk/chr...lgic-encephalomyelitis-or-encephalopathy-cg53

I am not as familiar with your other extracts but will have a look later when and if I get back from my walk

 

[merylg]

As far as I know, Neurologists in Australia do NOT use the terms ME or CFS. I have seen them use the words chronic fatigue. So what DO these people in other countries have? (From an Australian neurologist's perspective?
1) something else that may be treatable once diagnosed & potentially serious if left undiagnosed?
2) something that belongs to another specialty eg Immunology, Rheumatology, Psychiatry...and therefore "not the Neuro's problem"?

Bear in mind that Neurologists do not know what depression is yet.
Bear in mind that Neurologists think that Psychiatry has a legitimate role to play in patient care.

 

[Valentijn]

Valentijn, this one has been widely discussed I believe. Wessely does not even now believe there is sufficient evidence to equate with 'encephalomyelitis'.

The quote goes far beyond discussing terminology, and puts ME/CFS into the realm of the purely psychological, and responsibility for failure to recover solely upon our beliefs:

As we, and now many other groups, have shown that the only determinant of outcome in this condition is strength of belief in a solely physical cause, then it will also itself contribute to disability and poor outcome.

 

[Wildcat]

Sure..... Wessely may believe there is not enough evidence to equate ME with encephalomyelitis - but when has Prof Wessely EVER acknowledged ME bio-research?????
.

 

[Sean]

As we, and now many other groups, have shown that the only determinant of outcome in this condition is strength of belief in a solely physical cause, then it will also itself contribute to disability and poor outcome.

determinant = causal

Evidence does not support that.

 

[SilverbladeTE]

Well, from his own words it leads to but one conclusion:
He's a weasel-mouthed bastard
*end of story*

in other areas it wouldn't be such an issue but his actions to be the "doyen" of ME/CFS, to manouver and control it have caused untold suffering.
if he could cure it, why aren't their millions beating down his door begging for help?
Because he *can't*.

Ergo, by his own words and actions he's guilty of one of the worst crimes in history and probably the worst crime in medical science.
History will judge him with contempt and bewilderment that such a small gorup of men could pervert the medical world, and let huge numbers not only suffer unecessarily, but to be ABUSED, wrongfully medicated, locked up, kids taken from them, etc.

May the gods piss the woes of his victims upon his head!


think that's a good "wrap up"?

 

[Firestormm]

The quote goes far beyond discussing terminology, and puts ME/CFS into the realm of the purely psychological, and responsibility for failure to recover solely upon our beliefs:

I've probably lost the plot - just woke up - do you have a citation for that quote please? Thanks.

 

[Valentijn]

I've probably lost the plot - just woke up - do you have a citation for that quote please? Thanks.

Yes, it's at Page 18 of National Archive NB 141-1.pdf . It was discussed in this thread: http://forums.phoenixrising.me/inde...-archive-releases-formerly-closed-file.18866/

I think you've probably downloaded it, since you started that thread

The original source is expired, and too large to upload here. I'll look for another online source.

EDIT: It looks like it can be ordered from http://www.nationalarchives.gov.uk/catalogue/displaycataloguedetails.asp?CATLN=6&CATID=8897099&j=1 . I have no idea if they can send it via email, but I think I got another document from the archives that way (free).

If it's not really accessible there, let me know and I can try to put it on my server.

 

[Firestormm]

Thanks Val. Will refresh my grey cell later

 

[barbc56]

Other than for historic perspective and IMHO we have gone waaaaay beyond that, it's pointless to drag out these older quotes. I understand the dislike, though, I am finding my dislike of Wessley growing less and less since finding how many any of his quotes have been misrepresented. But it's a useless waste of time and energy. It makes me cringe to read some of the posts where patients are putting Wessely in a no win situation. This is far different than valid criticism. I also understand the need to vent but at what point are we going to be seen as drifting towards that "irrational behavior" that some in the psych and lay community believe?

Think of how other people perceive us using these tactics. Does it help? NO Does it make us believable? NO Any statements from the community will easily be dismissed as hyperbole or outright lies.Does it get us any closer to help our situation? NO I only have a certain amount of energy to expend and I'm not going to waste it holding on to anger and having it harm my health. I will turn that anger around to be more productive.

I am not above criticizing the "Wessley" school but you have to put these older comments in the context of the times and move on. Science evolves albeit slowly and that can be frustrating. We are only human and understandable that we are angry. But can we rise above it when advocating for the me/cfs community? I think we can.

And don't say I am siding with Wessley, because I am not toting the "party line" and believing all the forum memes. The reality of our situation is that we need to fight fair if we are going to get any respect.

It's not morally right to use the very same tactics we use to criticize Wessley. We are not junior high students fighting on the playground, calling each other names pointing fingers saying "he did it first". I truly believe we are a smart community. Look at how much time and effort people are using to find these quotes, replying in blogs/magazine articles, etc. But we need to articulate our views in a more appropriate manner. We have so much potential and I hate to see that not being used.

I like the below quote:

Holding on to anger is like grasping a hot coal with the intent of throwing it at someone else; you are the one who gets burned.
Buddha

Barb C.:>)