Lady Mar writes to Prof Wessely

[rowland]

Be forewarned, I'm just using the following as an example. Could the same type of criticisms be said, whether deliberate or not, about the conclusions of the mecfs action report since it doesn't compare the statistics with other illnesses? Personally at this point haven't researched this enough to make an informed opinion.

The AfME analysis concluded, amongst other things,

Localism in commissioning care for M.E./CFS patients has clearly failed this relatively large patient group. It is hard to name any other condition which has such a big adverse impact on so many people and upon which so little money is being spent to provide specialist healthcare.

They were echoing what the ex-head of the MRC said in 2011,

http://www.meassociation.org.uk/?p=7430
According to the NHS, a quarter of a million people in the UK at any one time have CFS. This is three times the number with multiple sclerosis. The cost to the NHS is substantial. The impact on the economy is enormous; the suffering of all those with CFS is staggering. It is understandable, then, that groups representing CFS sufferers should be concerned that public expenditure on their condition does not match its prevalence or cost.

I would be interested in seeing the eventual results of your research.

 

[barbc56]

My point was simply that we have to use the same type of critical analysis for all sides of an issue. I am not saying that the AfME report was accurate or not but that it's so easy to use one set of standards when it comes to analyzing what we believe is the truth and then another for what we disbelieve. It's called confirmation bias.

 

[ukxmrv]

I think what you are missing here Barb is that we UK patients sometimes meet other people at clinics, support groups etc. We directly experience treatment decade after decade. Some of us know the other patients in our areas through setting up groups and we get to met the bedbound and others.

It doesn't take a critical analysis when one is directly experiencing it and mixing, talking to the other people going through the same thing and this goes on for decades in the same area.

You may be detached from other patients in your area or not in contact with others at the same clinic. It's different for us if we know of a 10's of patients, hundred of patients or hundreds of different patients over decades in the same area and the stories are the same and similar.

We would like reports of course and are grateful when charities / The APPG or other bodies produce them. We do critically analyse reports. As an example I was very critical of a previous AFME survey because of it's design flaws. I keep doing this.

I can't see a lack of critical appraisal here. It's not "confirmation bais" when we have worked as with the patient groups in our area and know many individual patients over decades.

Maybe it's because you haven't followed some of the reports as they have come out and seem the citicisms/comments as many of us have done here in the UK? My guess would be it's the first time you were aware of the ones posted here and didn't know of them and any controversies at the time.

They were are critically appraised as any topic here in their time.

 

[Bob]

But I do think that applying critical thinking skills and stating our case in as concrete terms as possible, is the way to go with our advocacy if we want any credibility.

Yes, i agree with this approach. Easier said than done, considering lack of resources, and lack of best-quality research over the years. But still the best way forward, IMO.

 

[Firestormm]

Full correspondence to date: http://www.meactionuk.org.uk/Lady-Mar-to-Simon-Wessely.htm

From: Wessely, Simon
Sent: 15 December 2012 10:02
To: MAR, Countess
Subject: your letter.
Dear Lady Mar

Thank you for your last letter and the accompanying clarification. I am happy to confirm that I am in agreement that you may publish this correspondence where you see fit.

Now let me address the specific question that you ask. As a part of a programme of research over many years, colleagues and I have shown that perpetuating factors are different from those that trigger the illness. So, when you ask "do you still believe that ME/CFS is "perpetuated predominantly by dysfunctional beliefs and coping behaviours"? my answer is that I think the evidence is compelling that symptoms, disability and distress can indeed be perpetuated by what people believe about their illness and how they manage it. This is true of very many disorders, and says little about what causes illness, but about why some people improve more than others.

Turning to CFS I say to patients that having this illness is like being given a certain hand of cards. With that hand, there are better and worse ways of playing the hand. What we can do is help you play that hand better. Continuing the analogy I often add that what we can't do at the moment is give you a new set of cards. And so I say that in my opinion as a researcher and clinician, either CBT or GET are the two ways in which we can currently help you. I share with them that these are currently the best treatments that we have, that they are not perfect, but are safe, and that if it was me, I would try one or the other, but of course it is their choice. This view says nothing about what causes the illness, but speaks to how we can best help patients improve their quality of life now.

In clinical practice I repeatedly see that this approach helps patients. Since there are no other treatments currently available that have been reliably and repeatedly shown to be both safe and effective, I think that opposing their use is unhelpful to patients and their families. And for avoidance of doubt, and mindful of the communication error with which we began this exchange, may I make it clear that I know that you are not one of those who have opposed making CBT available within the NHS to assist CFS sufferers improve their quality of life, and have indeed supported this. I do believe that this is an area in which there is indeed common ground between us. Likewise, your recent raising in the Upper House concerns about the clinical networks that were established by the last CMO in 2008 but whose future is now in doubt reflects similar concerns that are held by the vast majority of NHS clinicians working in this field and will no doubt be appreciated by patients and practitioners alike.

So this is what I tell patients about CBT and GET at the moment. Like any decent doctor, I will change my views and hence advice when the evidence changes - for example when a different treatment approach proves to be as safe but more effective than either CBT or GET , and indeed would be delighted to so.

Yours sincerely

Professor Simon Wessely
King's College London.

Latest exchange:

http://www.meactionuk.org.uk/Wessely-Mar-latest-correspondence.htm

http://www.meactionuk.org.uk/Wessely-Mar-latest-correspondence.pdf
-----Original Message-----
From: Wessely, Simon
Sent: 21 December 2012 09:15
To: MAR, Countess
Subject: RE: your letter.

Dear Lady Mar,

Thank you for your letter of Dec 17th 2012.

In general I think that CBT/GET improves outcomes in CFS but does not make the majority of sufferers symptom free. I don't particularly like the word palliative in this context, but I think we mean the same thing.

However, on the basis of my extensive clinical experience and the published literature I do know that rehabilitative treatment can in a smaller proportion lead to a resolution of the illness. My hypothesis would be that in these instances the original factors have resolved, but the secondary handicaps of chronic illness remained. I emphasise again that this is not the reason that I recommend CBT or GET to patients.

CFS is not classified as a somatoform disorder. Nor do I believe it should be. In addition, like many of my colleagues in liaison psychiatry, I think that the classification of somatoform disorders is unsatisfactory.

May I take this opportunity to wish you the compliments of the season.

Yours sincerely

Professor Simon Wessely


Professor Simon Wessely
Vice Dean, Institute of Psychiatry
Head, Department of Psychological Medicine Director, King's Centre for Military Health Research King's College London


-----Original Message-----
From: MAR, Countess
Sent: 21 December 2012 17:41
To: 'Wessely, Simon'
Subject: RE: your letter.

Dear Professor Wessely

Thank you for making your position on CBT and GET clear.

In the spirit of the last full paragraph of my letter to you of 12 December 2012, there is more that I would like to be able to discuss with you. I suggest that we follow-up after the New Year?

I hope you have a peaceful Christmas and New Year.

Yours sincerely
Mar

 

[Enid]

I may or may not think or criticise all the Countess of Mar has put into her battle with the correct recognition of ME - let's those who can do better do better over decades and frankly be very grateful - I can't read all the foregoing but any crticism here is totally obnoxious.

 

[barbc56]

CFS is not classified as a somatoform disorder. Nor do I believe it should be. In addition, like many of my colleagues in liaison psychiatry, I think that the classification of somatoform disorders is unsatisfactory.

He said it!!!

However, on the basis of my extensive clinical experience and the published literature I do know that rehabilitative treatment can in a smaller proportion lead to a resolution of the illness. My hypothesis would be that in these instances the original factors have resolved, but the secondary handicaps of chronic illness remained. I emphasise again that this is not the reason that I recommend CBT or GET to patients.

So based on this, I would think many of us would technically not qualify for CBT and GET as only a small minority, as Wessley says, CBT/GET would lead to resolution. However, it doesn't sound like this is done in practice. I like the word rehabilitation which I think many of us could use within the limits of our illness. Even people in a coma get some kind of physical therapy.

Barb C.:>)

 

[Simon]

In general I think that CBT/GET improves outcomes in CFS but does not make the majority of sufferers symptom free. I don't particularly like the word palliative in this context, but I think we mean the same thing.

However, on the basis of my extensive clinical experience and the published literature I do know that rehabilitative treatment can in a smaller proportion lead to a resolution of the illness. My hypothesis would be that in these instances the original factors have resolved, but the secondary handicaps of chronic illness remained. I emphasise again that this is not the reason that I recommend CBT or GET to patients.

Wow. First, I think that's the most unambiguous statement on the role CBT/GET I've seen from Simon Wessely. Second, it does appear to imply that CBT/GET are tackling the 'secondary handicaps of chronic illness', rather than the underlying factors. That would certainly not fit with the way the Biopsychosocial model is often promoted, and would cut agains the hypotheses for CBT/GET explicitly stated in the PACE study.

Slightly to my surprise, I do think this correspondence has been productive.

I'd be interested to know if others interpret these comments in the same way as I have.

 

[Kati]

I don't trust him and I don't believe him.

 

[Sean]

I'll take Wessely's statements above more seriously when they are the basis of his formal advice to the government and insurance industry.

His primary psychogenesis model has failed. He needs to acknowledge that very clearly, and repudiate any treatments or management of patients based on it.

A single unambiguous formal statement from him along those lines, published in a major peer reviewed journal, would completely change the politics of this whole thing.

And he knows it.

 

[Undisclosed]

However, on the basis of my extensive clinical experience and the published literature I do know that rehabilitative treatment can in a smaller proportion lead to a resolution of the illness. My hypothesis would be that in these instances the original factors have resolved, but the secondary handicaps of chronic illness remained. I emphasise again that this is not the reason that I recommend CBT or GET to patients.

This really doesn't make sense to me. What he means by the 'original factors have resolved' is the original infection or whatever caused the illness in the first place. The 'secondary handicaps of chronic illness' are those things that perpetuate the chronic illness (pathological beliefs about the illness, perception of controllability etc). Both of these are in line with all of his past words about the treatment of CFS. So why on earth is he emphasizing that this 'is not the reason' he recommends CBT or GET to patients because it's exactly why he recommends them to help alleviate the secondary handicaps or those false beliefs developed after the original cause is gone. Maybe I am interpreting what he said to Lady Mar incorrectly but it seems he is not saying anything new.

 

[ukxmrv]

The "word" rehabilitation is exactly what the insurance companies are calling it when they try to force their ME and CFS claiments into CBT and exercise programs in the UK. I've had experience of this.

One has to know about how the words are being used to get a fuller picture of what someone means in a particular country.

There may be for example a "medical" meaning and a common meaning. One dictionary descriibes

re·ha·bil·i·tate (r h -b l -t t ). tr.v. re·ha·bil·i·tat·ed, re·ha·bil·i·tat·ing, re·ha·bil·i·tates. 1. To restore to good health or useful life, as through therapy and education. 2.

There was nothing in this common use of the term that would describe my CBT and exercise programs in the UK

 

[biophile]

I will believe CBT/GET are generally "rehabilitative" for strictly-defined ME/CFS when I see convincing evidence of such eg actigraphy and employment outcomes. Until then, it seems "palliative" at best for a minority of patients. Despite the name "graded exercise therapy", there has been no objective evidence that patients in general are increasing their total activity levels. Gently encouraging patients to push their boundaries may be generally safe in RCTs, but the safety of sustained increases in activity levels as a method for rehabilitation or recovery has never been demonstrated in RCTs.

I do not doubt that illness can often be better managed, and the CBT courses often address sleep management, stress reduction, boom-bust etc, but I am of the opinion that anyone who was a long-term patient, and then suddenly recovers with a few months of CBT/GET, does not have the same illness characteristics as me or many others on this forum. For the rest of us, the activity ceiling is pervasive and apparently unsurmountable.

 

[Esther12]

I think that's the most unambiguous statement on the role CBT/GET I've seen from Simon Wessely.

What do you think he said?

I've just looked through this correspondence, and see it as saying nothing of interest. I'll give a 'negative' spin to what Wessely is saying, not because I think this is necessarily what he means, but just to show how little is really said, and how much depends upon interpretation.

In general I think that CBT/GET improves outcomes in CFS but does not make the majority of sufferers symptom free.

Are most healthy people free of the symptom of fatigue? If CFS is a result of patients being overly concerned about normal symptoms, no treatment will lead to them being symptom free.

I don't particularly like the word palliative in this context, but I think we mean the same thing.

He doesn't explain why he doesn't like the word palliative in this context.

However, on the basis of my extensive clinical experience and the published literature I do know that rehabilitative treatment can in a smaller proportion lead to a resolution of the illness.

We don't know what proportion he's talking about.

My hypothesis would be that in these instances the original factors have resolved, but the secondary handicaps of chronic illness remained.

The original factors could be depression, fear of some social problem and a desire to avoid it, a viral infection which led to the inappropriate adoption of the sickness role, and so on. We have no idea what % of patients he thinks this applies to. In media reports he's said 1/3 recover (same results PACE was spun to).

I emphasise again that this is not the reason that I recommend CBT or GET to patients.

Personally, I think that a very high rate of recovery is the only way that the forms of CBT and GET which have been promoted for CFS could be seen as morally acceptable.

CFS is not classified as a somatoform disorder. Nor do I believe it should be. In addition, like many of my colleagues in liaison psychiatry, I think that the classification of somatoform disorders is unsatisfactory.

This says nothing about what he thinks of the nature of CFS. It could only mean that he sees the classification of somatoform disorders as unsatisfactory.

In this post I looked at a paper where he discussed some of this stuff: http://forums.phoenixrising.me/inde...-and-all-in-the-mind.13979/page-6#post-307653

The first sentence is worth mentioning, because I often see CFS patients being criticised for talking as if managing medically unexplained symptoms' is just used as a to mean 'treating somatization':

This paper proposes that well-intentioned actions by
medical practitioners can exacerbate or maintain medically
unexplained symptoms (MUS)—i.e. physical symptoms
that are disproportionate to identifiable physical disease.
The term is now used in preference to ‘somatization’.1​

I also like Wessely's characterisation of the criteria for Somatization disorder, which is different to those I have seen:

Patients with the highest number of MUS are likely to fulfil
the psychiatric criteria for somatization disorder—at least 2
years of multiple and various MUS, with persistent refusal
to accept advice and reassurance from doctors; functioning
impaired.​

Those stubborn patients.

The medical
specialties employ shorthand descriptions for particular
clusters of MUS including irritable bowel syndrome, noncardiac
chest pain, fibromyalgia, chronic fatigue syndrome
and repetitive strain injury.​

Another example of him saying nothing is this bit:

So, when you ask "do you still believe that ME/CFS is "perpetuated predominantly by dysfunctional beliefs and coping behaviours"? my answer is that I think the evidence is compelling that symptoms, disability and distress can indeed be perpetuated by what people believe about their illness and how they manage it. This is true of very many disorders, and says little about what causes illness, but about why some people improve more than others.

In an earlier post about Wessely I said this:

his writing style seems to have now 'improved' to the point that he no longer really says anything, but simply works on creating the impression of a likeable, gentle academic.

http://forums.phoenixrising.me/inde...-and-all-in-the-mind.13979/page-2#post-232012


His more recent writings on CFS are only politically interesting - his says nothing of substance.

Until he starts apologising to patients for the impact he's had upon so many of their lives, I really don't care about whether he's changed his mind or just come up with a new way of expressing himself which avoids addressing with the areas of his work patients find problematic. If CBT and GET generally only lead to the pitiful improvements in questionnaire scores we saw with PACE, the focus that has been placed upon funding the research and provision of these treatments is repulsive... never mind the fact that promoting the notion that patients have control over their symptoms, that they're reversible to patients who make the effort, should be managed as if they were primarily a result of deconditioning or a fear of exercise, etc, causes real social and political harm was done to patients.

Can anyone here say that their lives have not been made worse as a result of people treating them as if they have more control over their symptoms than is really the case? This inspiring 'positive' message has been used as a stick to beat CFS patients for two decades, and yet we're meant to be grateful for the fact that it can also be helpful to a minority of patients who have come to view their illness too negatively?

I don't think those who managed patients into adopting views of reality unsupported by the evidence should receive greater financial compensation for their work than that given to their least well off patients (is ESA somewhere under £4000?). Maybe we should be paid their wages to promote the cognition 'Patients should only be encouraged to adopt views of reality which are supported by compelling evidence'.

I am of the opinion that anyone who was a long-term patient, and then suddenly recovers with a few months of CBT/GET, does not have the same illness characteristics as me or many others on this forum. For the rest of us, the activity ceiling is pervasive and apparently unsurmountable.

I really don't like making any assumptions like that around CFS. Too much is unknown. I've got big problems with the way CBT and GET have been promoted for CFS, and with the people who have built their career upon them... but I'm still open to the possibility that they could be curative for myself. Maybe I'm one of the 1% of CFS patients who actually does suffer from a refusal to acknowledge my fear of exercise and desire to adopt the sickness role! It's very hard to be certain about anything.

 

[biophile]

I am of the opinion that anyone who was a long-term patient, and then suddenly recovers with a few months of CBT/GET, does not have the same illness characteristics as me or many others on this forum. For the rest of us, the activity ceiling is pervasive and apparently unsurmountable.

I really don't like making any assumptions like that around CFS. Too much is unknown. I've got big problems with the way CBT and GET have been promoted for CFS, and with the people who have built their career upon them... but I'm still open to the possibility that they could be curative for myself. Maybe I'm one of the 1% of CFS patients who actually does suffer from a refusal to acknowledge my fear of exercise and desire to adopt the sickness role! It's very hard to be certain about anything.

To clarify, I did not necessarily mean to say that anyone who was helped by CBT/GET could never have had "real" ME/CFS in the first place. I know such statements are often criticized for dismissing the experience of other patients and for being an example of the No True Scotsman fallacy.

ME is usually characterized by post-exertional symptomatology, which may or may not mean that recovery via GET is inherently impractical. If broadly-defined CFS is indeed a rather heterogeneous diagnosis, then obviously patients are going to have different illness characteristics. For me and others, those characteristics apparently include an unsurmountable activity ceiling regardless of all the attempts at graded increases of activity etc.

Of course there could be other unknown non-disease factors preventing such increases, but I am just talking about brute experiences instead of abstract possibilities. As objective recoveries due to therapy have never been convincingly demonstrated in RCTs, and there is limited evidence to suggest they are not occurring despite subjective improvements, I remain skeptical that CBT/GET is generally rehabilitative rather than palliative, for "ME/CFS".

 

[alex3619]

I will believe CBT/GET are generally "rehabilitative" for strictly-defined ME/CFS when I see convincing evidence of such eg actigraphy and employment outcomes. Until then, it seems "palliative" at best for a minority of patients. Despite the name "graded exercise therapy", there has been no objective evidence that patients in general are increasing their total activity levels. Gently encouraging patients to push their boundaries may be generally safe in RCTs, but the safety of sustained increases in activity levels as a method for rehabilitation or recovery has never been demonstrated in RCTs.

I do not doubt that illness can often be better managed, and the CBT courses often address sleep management, stress reduction, boom-bust etc, but I am of the opinion that anyone who was a long-term patient, and then suddenly recovers with a few months of CBT/GET, does not have the same illness characteristics as me or many others on this forum. For the rest of us, the activity ceiling is pervasive and apparently unsurmountable.

There is something I would like to add to this. I don't think CBT is always helpful with things like sleep management either. It depends on the cause. There is some evidence that some of our sleep issues are biochemical. There is no evidence that talk can change such biochemisty. Similarly boom-bust issues are best addressed with pacing strategies. As I have said before, if CBT was aimed at improving pacing it might be beneficial. Why aren't they researching that?

However I don't think the activity ceiling is unsurmountable - given the right science. I just don't think CBT research qualifies as the right science.

 

[Valentijn]

In general I think that CBT/GET improves outcomes in CFS but does not make the majority of sufferers symptom free. I don't particularly like the word palliative in this context, but I think we mean the same thing.

This is in line with PACE - only a small minority (13%) showed purely subjective improvement, even with all the flaws in the study which coincidentally were of an advantage to CBT/GET practitioners. I think, to some extent, all of the criticism and close attention to PACE has forced the BPS school to tone down their sales pitch somewhat, at least to an audience that includes ME patients and organizations.

But is this what he's saying to groups that don't include ME patients and orgs? Based on past examples, probably not.

However, on the basis of my extensive clinical experience and the published literature I do know that rehabilitative treatment can in a smaller proportion lead to a resolution of the illness.

It is not clear whether "smaller proportion" refers to something less than "the majority of sufferers" referenced in the first paragraph, or simply something less than 100% of ME patients. Does he think CBT/GET cures 13% of patients? 49%? 99%? Does he define a cure as "answering questions better" or "objectively functioning better physically"? If he's talking about objective physical recovery, where is the study supporting that?

My hypothesis would be that in these instances the original factors have resolved, but the secondary handicaps of chronic illness remained.

Why are the "secondary handicaps" chronic, but not the "original factors"? Because he's talking about ME being potentially triggered in a physiological manner, then perpetuated by other "handicaps" - psychological ones. He is not suggesting that chronic ME is a physiological disease - at best he is silent on the matter.

I emphasise again that this is not the reason that I recommend CBT or GET to patients.

Again, he is not clear - what is "this"? His hypothesis that we aren't still ill? That CBT/GET can supposedly resolve the illness in some people? Why does he recommend CBT/GET to patients?

CFS is not classified as a somatoform disorder. Nor do I believe it should be. In addition, like many of my colleagues in liaison psychiatry, I think that the classification of somatoform disorders is unsatisfactory.

Why is it unsatisfactory? Because we understand what somatoform means? Does he prefer "medically unexplained symptoms" or "functional disorder", since those are unclear terms, even though the psychiatric world equates all of those terms as having the same causes (psychological) and treatments (psychological)? Finding the classification of "somatoform disorder" as unsatisfactory is not the same as denying that ME/CFS is a somatoform disorder.

 

[taniaaust1]

CFS is not classified as a somatoform disorder. Nor do I believe it should be. In addition, like many of my colleagues in liaison psychiatry, I think that the classification of somatoform disorders is unsatisfactory.

umm I wonder what he is getting at there with saying that he thinks classification of somatoform disorders is unsatisactory, I'd love to hear his elaberation on what thinks about things. Interesting that he says here that he dont believe it should be a somatoform disorder but check out what he's actually written in one of his books.

Page 248 of Simon Wessely's book http://simonwessely.com/Downloads/BookChapters/Viruses_Fatigue.pdf

In the community the commonest reason to explain vague, unexplained symptoms is a "virus". Such attributations are at the expense of earlier explainatory systems involving personal responsibility

bla bla bla he goes on to then say on this topic.

This is an important concept in understanding CFS. Believing your illness is caused by a virus has many advantages. It lessens guilt and avoids blame. Patients who attribute somatically based symptoms to external causes may be less disturbed by them.

Unfortunately one cant read the whole book and this is just in the virus section of it, that book of his true thoughts would be one hell of a read.

Unfortunately such attribuations also have less then desirable consequences. If you believe your symptoms are due to a virus, then it is impossible to exert any control over them, and recover is left "in the lap of the gods"

Wessely even goes as far as to be using info expressed by someone on this illness who was back in the 1890s!! (this isnt a date mistake)... I guess he must of been desperate to find stuff which supported his views, he quotes this persons stuff throu out his book as this wasnt the first time I saw this other persons name come up in this chapter

Lack of progression allied to the lack of development of frank neurological involvement disproves the occassional analogy with a slow virus infection. On the contrary George Beard (1880) the first person to describe CFS under the label of neurasthenia, asserted that it was actually associated with increased longetivity

...................

Some other comments I just came across in a brief look at a couple of his publications

http://www.simonwessely.com/Downloads/Publications/CFS/1.pdf

Clinical descriptions include a vast array of symptoms and signs but the two main features that emerge are fatigue and emotional disturbance

ok from that it looks like Wessely believed those were the top two features of this illness.

Hysteria itself is an outmoded diagnoses and is being replaced by the concept of "abnormal illness behaviour"

Interesting.. that he equates what was known as "Hysteria" to be the same as "abnormal illness behaviour"... which is something we've heard him express for ME/CFS.

The following quote is from Wessely discussing how doctors can end up thinking we are manipulative etc and form unacceptable patterns of behaviour due to our desperate search for illness recongition. I think in the following quote from him.. he's quoting what he thinks is in our minds eg we seek out abnormal test results as we want an excuse to be ill (but maybe someone else will take this part of his below quote different to what I have..better reading the whole context his quote is said in).

the difference between a crazy neurotic person and a seriously ill person is simply a test.. that would allow me to be ill.

 

[alex3619]

However, on the basis of my extensive clinical experience and the published literature I do know that rehabilitative treatment can in a smaller proportion lead to a resolution of the illness.

In the community the commonest reason to explain vague, unexplained symptoms is a "virus". Such attributations are at the expense of earlier explainatory systems involving personal responsibility

These two are particularly problematic. The first can run afoul of association versus causation. Ninety percent of post viral fatigue will automatically resolve. Only around ten percent becomes ME. If he is claiming some of those automatic resolutions as success ...

The second one ignores why we call it a viral feeling. We are not fatigued. We don't feel fatigued. We have excessive fatiguability and we typically feel like we have a virus - with a full range of viral symptoms. Its NOT just fatigue. This latter claim is a deliberate distortion.

taniaaust1, I think Beard actually dates back to 1869. I have a copy of his early paper lying around somewhere. By 1880 or so the psychs had taken his neurological theory and were running with it though. So this quote would be referring to a later paper, one which I have not seen. Do you have a reference for it? Do you recall in which of Wessely's papers he cites Beard?

Bye, Alex

 

[user9876]

The second one ignores why we call it a viral feeling. We are not fatigued. We don't feel fatigued. We have excessive fatiguability and we typically feel like we have a virus - with a full range of viral symptoms. Its NOT just fatigue. This latter claim is a deliberate distortion.

Bye, Alex

Yet one of the reasons i've seen given for calling it CFS is that "fatigue best represents the patients experiance". Seems to me that many of the doctors pushing this view don't listen to patients about symptoms but rather have a symptom model in their mind and hence fit what people say into their model (which is that patients feel tired).

This seems to bring a much wider point which is around observation skills, interpretation and science. It is so important to make observations separate from interpretations hence the importance of good measurement equipment, When there are only subjective methods there is a huge danger that those making the observations interpret them at the same time or even ignore those that don't fit. Hence you get bad data, leading to bad theory. Where diagnostic methods are based on such subjective measures and ill defined terms this will lead to lumping and conflation of different symptoms under a single label.

I was wondering has someone actually tried to characterise what patients describe as fatigue in ME.