Lady Mar writes to Prof Wessely

[Bob]

So even when he changes his theory slightly about causation, he's still working backwards from a starting point of "CBT is the cure" and looking for a way to create a model of illness that supports that. Unfortunately, this is more a matter of warping perceptions of reality than actual science - instead of observing what is happening, and drawing conclusions, he's trying to frame what's happening in a manner that supports his pre-existing beliefs.

That's exactly the same impression I got reading his 2005 CFS review paper.


Somatoform Disorders.
(WPA Series in Evidence & Experience in Psychiatry)
Volume 9
2005
Editors: Mario Maj, Hagop S. Akiskal, Juan E. Mezzich and Ahmed Okasha
ISBN: 978-0-470-01612-1
http://eu.wiley.com/WileyCDA/WileyTitle/productCd-0470016124.html

Chapter 5: Chronic Fatigue and Neurasthenia
Chronic Fatigue and Neurasthenia: A Review
Michael C. Sharpe and Simon Wessely
[Page 253]

 

[Sean]

While the latter 'no psychiatry' view may be held by a minority, to apply it to all patients or advocates is another 'straw man' that continually pops up alongside 'fear of the stigma of mental illness' etc.

It is a despicable propaganda lie by Wessely that anti-psych bias is what drives patient resistance to his approach.

 

[Valentijn]

I've started a page with quotes clearly attributable to Wessely (not him quoting other people, or out of context) with easy to access citations with links. I've only got stuff from prior to 1995 added so far, but will be adding the rest as time permits. Hopefully it'll be helpful in interpreting some of his vague statements.

The page is at http://forums.phoenixrising.me/index.php?threads/simon-wessely-quotes.21025/#post-319726

 

[Bob]

Remember that really weird 2006 CFS review paper, co-authored by Wessely, that I quoted recently:
http://forums.phoenixrising.me/inde...he-is-misunderstood.20654/page-16#post-316956
(P. White and M. Sharpe are also acknowledged for helping to write drafts of the paper.)

I think it's the most extreme, and most bizarre, CFS paper that I've ever read.

Wessely quoted some of this paper, verbatim, and promoted it as his own opinion, in a 2011 interview in The Times:
http://www.meassociation.org.uk/?p=7552

For example, in The Times interview, he has taken the following quote, verbatim, from the review paper:

“Like it or not, CFS is not simply an illness, but a cultural phenomenon and metaphor for our times.”

He has also quoted, or paraphrased, other sections of the review paper.

So, incredibly, this seems to indicate that he really does subscribe to the findings of the 2006 review paper.

 

[alex3619]

Bob, the method used is a narrative synthesis of the literature. While narrative analysis can be useful in some situations, it does not have the precision of science. My suspicion is the paper on the pros and cons of labelling CFS is primarily a rhetorical device. Its structure is however that of a scientific paper, at least superficially. There are a bunch of caveats in the paper though. However, overall I would have to call it a social commentary. It is not science.

 

[Bob]

Bob, the method used is a narrative synthesis of the literature. While narrative analysis can be useful in some situations, it does not have the precision of science. My suspicion is the paper on the pros and cons of labelling CFS is primarily a rhetorical device. Its structure is however that of a scientific paper, at least superficially. There are a bunch of caveats in the paper though. However, overall I would have to call it a social commentary. It is not science.

I'm not sure how they get away with calling it a 'review', because it's more of a 'polemic', or a 'rant'.
But I suppose a 'narrative' maybe appropriate: "noun. the practice or art of telling stories."
It is clearly heavily biased towards a particular pet theory, and it cites only carefully selected research.
(And some of the cited research is authored by Wessely.)

 

[SilverbladeTE]

In otherwords, his entire "world outlook" is based on spinning much the same crap again and again, having it published making it look like "science" so he can point to his OWN and allied folk's crap and say "see the evidence supports this!"
no, their BELIEF and twaddle, hot air and the slackwits in politics and greedy scum in insurance indusry etc, support it.
Not evidence, not compassion for the suffering, it's all *EGO*!

The proper terminology for such is, I think:
egotistica grandia, caput merda, testiculares cerebrum

(ok ok ok, not proper Latin but it *sounds* about right )

 

[Valentijn]

It is clearly heavily biased towards a particular pet theory, and it cites only carefully selected research.

That's a pretty common theme. I found a couple statements from a paper in 1994 (Bonner D, Butler S, Chalder T, Ron M, Wessely S. A follow up study of chronic fatigue syndrome. J Neurol, Neurosurg & Psychiatry 1994;57: 617-621.) where Wessely & Company state:

Attribution of illness to a physical cause does not appear to be as important a prognostic factor in the long term.

In contrast with Sharpe et al we found no association between membership of the myaglic [sic] encephalomyelitis association and continuing morbidity at follow up.

I'm fairly sure he's contradicting those statements repeatedly in more recent work, and not in a "some research says A, but some says B" sort of way.

I dare say that Wessely's papers primarily cite Wessely's papers, hence there is little opportunity for dissenting opinions to be acknowledged. One thing I want to do with his most recent stuff is trace back the citations and see where his statements are ultimately originating from, and what support, if any, is provided for them.

 

[Firestormm]

Morning,

Perhaps it would be productive to compare what has been said of any model thought to have been relevant to our condition in general - with what the changing view might be? Digging up past papers and past quotes is all well and good (with context of course); but how about comparison's? And let's not beat about the bush here, there have been many (more) papers published hypothesising a 'physical' cause or physical perpetuating factor(s) in ME - i.e. physical models - and yet they gain very little practical headway or general acceptance from any health authority.

As Wessely himself said in this previous letter:

15 December 2012

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.

http://www.meactionuk.org.uk/Mar-Wessely-correspondence-update-171212.htm

All this wealth of 'physical' data that keeps being published (certainly now on an almost weekly basis), has done very little in terms of gaining a consensus that might better influence clinical treatments. Even if you compare Ampligen to PACE (even applying the patient-preferred results) - this is the height at which the bar has been set.

If the past and present models pertaining to ME from the psychiatrists have been proved wrong; CBT and GET remain the preferred means by which many if not all clinical care is delivered for long term conditions applied in whole or in part. By that I mean - the principles of CBT or GET are applied across the spectrum of conditions in practice.

The models applied - used as per PACE (though this does not happen in every single ME Service or outside of ME by any means) - or indeed the services provided by any ME Service are not necessarily appropriate for every single one of us. Again, CBT and GET specifically are only recommended for MODERATE patients.

For the SEVERE patient you are looking at "Activity Management" - and as we know - SEVERE patients and Activity Management - have not been included in PACE or in any other model approach that I am aware of. Indeed, I would say that "Activity Management" (along with the principles of CBT and GET) are the main thrust of clinical care for ME and any other long term condition where debilitation is comparable or worse.

'CBT' has become so ingrained now in healthcare you will be hard pressed to find any clinician that does not employ some aspect of it. The same applies to 'GET' in my view. For sure you might not get the same implied rigidity in GET applied everywhere - but the theory behind it - working with a patient to slowly and steadily increase upon activity/exercise as and when they health improves - is ingrained.

To my small brain cell way of thinking - 'CBT' is a name applied to something that was already happening; an attempt to quantify an approach. The PACE Trial was a very ambitious project. I was never comfortable with it. People say that it wasn't 'scientific' but it's a psychological model - how much more scientific can such models be? Clinical outcomes are not measured by and large by e.g. a return to employment. Within psychology, questionnaires are the norm. Could this approach be improved? For sure it could but there was no need for them to do this when the precedent was already set.

In 15 years I have tried (trialled) many, many drugs aimed primarily at symptom relief. Sometimes going through so many of the same type of drug before I either decided not to bother or found a version that seemed to help. Drugs are not perfect. Why then do you expect CBT or GET or Activity Management to be perfect either? I suggest that we apply our own experiences to clinical management treatments and can be accused fairly of confirmation bias.

If we have tried a drug and feel it is working, what then is our response to say a trial of said drug that fails to find any significant benefit - or for a decision by a regulator to not approve said drug? What then of a decision of a regulator to recommend a 'treatment' that we feel based on our experience is 'no good to man or beast'? Or to any scientist/doctor who expresses an opinion (or many opinions) that we feel 'is not worth the paper it is printed on'?

If I come back from seeing my GP and I feel 'that damn man has not listened to a word I said!' To what extent is my experience going to influence my attitude to 'all GPs'? If a GP expresses an opinion and I don't like it - what then am I to do? Get all hot and bothered by it or shrug and carry on?

In all these years - half a century or more - nobody has produced a viable aetiology for ME that is of a 'physical' nature. Nobody has come up with proof of significant and distinct 'inflammation'. And yet look at all the money now being raised to fund 'biomedical' research. Look at how much over the past e.g. decade that has gone into this hunt. And yet those fundamental questions (for some) remain to be answered. Why?

Why is it so damned hard to prove e.g. inflammation? IiME for example and their supporters appear adamant that encephalomyelitis is the 'right name' and that inflammation is there. Why then are their efforts not being used to identify and publish what is apparently so evident? If it is so apparent that ME is a (primarily) neurological condition - why is it so damned hard to prove? Why does all the money that gets raised (for IiME and for the RRF and MERUK etc. etc.) get spent elsewhere i.e. NOT on proving inflammation? I mean you surely have to ask - right?

Wessely (and others) are psychiatrists and psychologists do you expect them to come up with a 'neuro-immune' model? Or 'anti-viral' treatment? Of course not. They have their models and others will pursue their own. The great evidence - the persuasive evidence - in terms of treatment (in terms of MANAGEMENT STRATEGIES) comes from CBT and GET for MODERATE patients.

Wessely might have had a lot to say about my condition over the years - but a lot has changed in the meantime. I think that chief amongst this has been improved diagnoses and recognition of alternate diagnosis. Even if people are referred - like me - to Psychiatrists then said professionals will work to ensure that the primary diagnosis is the most correct one and will try to ensure that any other morbidities are spotted and treatment accordingly (sometimes separately sometimes in accord with the treatment for ME perhaps).

Education has also improved I think. Again things are not perfect. And we have had the NICE Guideline produced. Again not perfect but better than we had before - and not even America has a single document to which all else is referred. Patients with ME are being treated with e.g. drugs for symptoms that can be addressed in this manner as well as being helped by clinical management interventions such as those laid out in NICE as 'management strategies'. There is no talk of 'cure' but there is widespread - now - acknowledgement of the seriousness of the condition and the debilitating effects.

If you are going to review Wessely's opinions then why not also review all the wealth of opinion that has been said over the last 50 years about the 'physical' nature of this condition. Opinions that have never gained traction and have never been proved. Why not ask why these theories never made it? Never improved our lives? Why is it that the opinion of a psychiatrist gets so much critical attention and yet the theory of an e.g. immunologist does not? Where is the physical model for my condition? Where is the follow-up study? Where is the proof that is apparently so easy to find but that has eluded even the heroes of my condition for 50 years?

Some people are placing a hell of a lot of hope (and personal wealth) in the aspirations being expressed by those seeking 'physical' explanations and treatments. But how long have we been doing this now? How many of these projects have ever resulted in a treatment? None. As I said the bar has been set. If you think PACE proved very little in reality then that bar should be relatively easy to jump (though not for Ampligen - maybe Rituximab? Humph.)

Until such time as a new athlete appears with a treatment or with a model of causation that stacks up; then Wessely's comment will apply until hell freezes over. But the clinical application and indeed the personalisation of these two treatments (as well as Activity Management) will remain in place. Criticising PACE is not going to change this approach. Not until the other evidence comes to light and even then I strongly suspect that these treatments will remain and work alongside, yes, even a drug treatment that specifically targets the identified cause.

Wessely might have said this - but anyone could have done. It will remain the view:

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.

 

[Valentijn]

If you are going to review Wessely's opinions then why not also review all the wealth of opinion that has been said over the last 50 years about the 'physical' nature of this condition. Opinions that have never gained traction and have never been proved. Why not ask why these theories never made it? Never improved our lives? Why is it that the opinion of a psychiatrist gets so much critical attention and yet the theory of an e.g. immunologist does not?

There is a huge difference between the opinions of most physical researchers and those of the psychiatric researchers. One is that Wessely specifically discourages physical investigation and treatment, something that is not reciprocated by physical researchers prohibiting psychological investigation and treatment.

Another big difference is that Wessely is constantly speaking to the media, as well as addressing the specialists and GPs we need to deal with if we do not accept his theories. Many people view him as having a harmful effect on aspects of ME research and treatment, so find it important to address his statements.

There are also some statements for which "but that was 20 years ago" is absolutely no excuse. Those statements were deliberately aimed at preventing biological investigation or research, and convincing people in a position of power that only psychological theories for ME are tenable or should be supported.

He repeatedly states that there should not be this division between biological and psychological aspects of medicine, yet he repeatedly suggests biological investigation is inappropriate and even harmful:

Ideally a behavioural programme [for CFS patients] should be individually tailored, with agreed targets appropriate to the degree of initial disability. However, it is likely to involve the following features: . . . 7. No further visits to specialists or hospitals unless agreed with therapist.
Wessely S, David A, Butler S, Chalder T. The Management of the Chronic Postviral Fatigue Syndrome. J Roy Coll General Practitioners 1989; 39: 26-29.

. . . such 'inappropriate' referrals to physicians can lead to extensive physical investigation that may perpetuate the symptom patterns of physical attributions.
Powell R, Dolan R, Wessely S. Attributions and self esteem in depression and the chronic fatigue syndrome. J Psychosomatic Res 1990; 34: 665-673.

However, the simple combination of history, examination and basic tests will establish those who require further investigation. 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.
Wessely S. Chronic Fatigue Syndrome. J Neurol Neurosurg Psychiatry 1991;54; 669-671.

You also usually don't see biological researchers advocating withholding benefits, or requiring compliance with his preferred method of theoretical treatment as a condition for getting benefits:

Sickness benefits....At present individual [CFS] cases should be treated on their merits, but it is reasonable to expect a patient to cooperate with treatment before being labelled as chronically disabled.
Wessely S, David A, Butler S, Chalder T. The Management of the Chronic Postviral Fatigue Syndrome. J Roy Coll General Practitioners 1989; 39: 26-29.

As regards benefits:- it is important to avoid anything that suggests that disability is permanent, progressive, or unchanging. Benefits can often make patients worse.
The National Archives of the UK: Public Record Office (PRO) BN 141/1, October or November 1993 McGrath Summarizing Talk by Thomas and Wessely, pp 6-8, 10.

The problem is not just with the specific theories, which have indeed undergone slight evolutions from time to time. It's with the manner of reasoning he employs, the way in which he dismisses some unproven (biological) theories, and the way in which he so strongly advocates for other unproven (psychological) theories.

 

[Firestormm]

Is there no case for these models, these quotes, to have been wrong? I tend to look at past theories - physical and psychological - as having been no longer as evident or relevant as once they were hoped to be. If e.g. the PACE trial models had been correct then more people would have done better and the results far more dynamic. They weren't.

Also CBT and GET would have been cited as 'cures' in the NICE Guideline - even before PACE - when they aren't and weren't. If any of these opinions had gained as much traction as some seem to think then NICE would have given them more credence and not less.

There have been many 'physical' explanations advanced, Val, but they have not stuck and yet some have led to 'treatments' that are expensive and are not in any way proven. No clinical trial has validated any treatment for ME and yet people are still being 'sold' them along the lines that a 'biomedical' test - a blood test for example and a result from a lab - in some way validates the prescription. These treatments are no more valid that anything else. Indeed some are clearly bogus.

As Wessely himself has said, again recently, he is not asking or expecting people to agree with what he has said, even in the context it was said (I don't agree with some of the things he has said) - but e.g. 'the benefits makes you worse' comment cited above - should be considered at least.

Consider the alternative view. A person with ME applies for benefit and yet fails to get it. How does that make them feel? Does it feel as if not getting the benefit in some way invalidates their disability? Their claim to be disabled? That their condition is being 'made up'? I would suggest that it does to some degree.

Is it then that great a stretch to say that it is important not to confer the view that benefits are a confirmation of not only one's 'status' but that benefits are in some way only afforded to people who's chances of improvement are non-existent in a condition such as ME? Is it so unrealistic to effectively remove the 'hope' that recovery is possible? Or are you of the opinion that ME is incurable and life-long for everyone?

I am all for a realistic assessment but for something like ME I would not have wanted my Doctor to have advised me at the start that this would be a lifelong debilitation. I honestly believe, Val, that such a thing may well have prevented me from achieving as much (relatively speaking) as I have. But everyone is different. However, as no model has been advanced that indicates ME is permanent in some and explains why this is so - he is not being unreasonable. And people with this diagnosis, Val, do recover or learn to better manage the condition and return to e.g. employment and do not need benefits.

ME cannot attract a prognosis until such time as a cause is identified. Ensuring that when benefits are received that the message is not 'you will be on these for the remainder of your life' seems perfectly reasonable to me. Whether or not I or you will be is not the point when the claimant is making the application or the agency is assessing.

Your preceding extract. Why is that unreasonable? Now I understand that some patients have said they were not supported in their benefit applications because they had refused to undergo the treatments recommended - but here I think Wessely is speaking generally; and each patient must be treated individually as his previous sentence states. He could just as easily have said exactly the same thing for any other condition as being relevant to the individual.

Benefits are not granted based on the diagnosis - as well you know. I have heard from people with ME who enter into a Tribunal hearing armed with 'science' that states how various theories and results have concluded the extent to which ME is 'real'. This kind of approach has no relevance when it comes to benefits. It is the extent to which a person is disabled - what they can and cannot do for themselves.

It makes no difference if they have cancer and arthritis or ME and POTS. It is individual and relevant to the state of disability. Or it should be - I am fully conversant with the way in which here in the UK our Welfare System is being abused.*


(*by the current administration and not by claimants in terms of health related benefits).

 

[Valentijn]

Consider the alternative view. A person with ME applies for benefit and yet fails to get it. How does that make them feel? Does it feel as if not getting the benefit in some way invalidates their disability? Their claim to be disabled? That their condition is being 'made up'? I would suggest that it does to some degree.

Is it then that great a stretch to say that it is important not to confer the view that benefits are a confirmation of not only one's 'status' but that benefits are in some way only afforded to people who's chances of improvement are non-existent in a condition such as ME? Is it so unrealistic to effectively remove the 'hope' that recovery is possible? Or are you of the opinion that ME is incurable and life-long for everyone?

I think there is a lack of conclusive evidence which Wessely consistently fails to acknowledge, resulting in unproven theories being used as the basis for advice that would be very harmful if other theories are correct. I also think Wessely errs by over-stating the potential psychological benefit of his treatments and under-stating the potential risk of those treatments.

He sometimes acknowledges the uncertainty of the cause of CFS, but arrives at very certain conclusions for treatment, and for advice regarding things like benefits. His failing is not in that his theories are necessarily incorrect, but in that he does not seem to take into account the harm that would result from his recommendations if his theories are incorrect.

 

[Firestormm]

I don't think Val re: benefits that there is an inherent 'harm' is saying a person should be assessed individually and not because CFS - at the current moment in time - should be considered 'life-long' or 'permanent'.

Case in point perhaps. My own award of DLA at Tribunal was set for 3 years. A friend has just 'won' her own reassessment and had it stated this was 'indefinite'. Now, under the new guidelines for the PIP which is replacing DLA - such verdicts will not apply unless it is considered a terminal condition/disability. Every person will be reassessed (I believe) annually.

You know the current 'mantra' being spouted by the various Governments I am sure. That to 'leave a person on benefits for life is to deny them the opportunity to XXX' Whether we like it or not this is the way of things and it doesn't matter what your diagnosis is. Until and unless ME is determined to be terminal our diagnosis will not matter.

Even if ME is proven to be 'progressive' it will not matter. People will be assessed based on the degree to which their condition(s) affect their ability to function independently and/or to work (though DLA/PIP is not an out of work benefit but the same applies to Employment Support Allowance).

In the context of a paper or in the context of an opinion being asked for or expressed to some statutory agency - it is not required that the author be considerate in their opinion. If you advancing a model or opinion I would suggest you will be advancing a 'best case scenario' you will be trying your best to 'sell' the model or the opinion. The recipient would be wise to seek other opinions of course - and I think (though this will be contended) - that that is what happened with NICE.

If NICE was purely adopting the view(s) expressed by those who previously or at the time had considered ME to be definitely a 'psychological' or 'psycho-social' condition - it would have been written far differently. In my view. As it was NICE reflects a genuine concern over the degree to which ME is disabling, and how little is known about the condition itself or the reasons why we are all affected differently.

 

[In Vitro Infidelium]

While the latter 'no psychiatry' view may be held by a minority, to apply it to all patients or advocates is another 'straw man' that continually pops up alongside 'fear of the stigma of mental illness' etc.

But in the context of this thread as well as the context of many of the discussions on these forums - the 'no psychiatry' position is relevent simply because of the frequency of its expression. And do any of us know what 'the majority' actually think/believe about their illness ? How do we know that 'fear of the stigma of mental illness' is not a motivational element in the collective and individual thinking of those who are affected by M.E/CFS ? The point I was making was not about perspective, but about pragmatic approaches to advocacy, irrespective of what any of us thinks or believes.

If ME/CFS is as many would contend primarily a neurological illness then it may be a structural, functional problem or both. If purely functional it could well be that psychiatry is the appropriate branch of medicine to treat it.

That's an entiely logical position, and if one accepts that M.E/CFS describes a condition(s) of likely heterogenous aetiology then the possiblilty of a psychiatric element in at least some cases has to be accepted as a reasoned hypothesis of aetiology. But - there are clearly many people (at last amongst those who write on blogs and forums) who are vehemently opposed to even considering such hypotheses.

IVI

 

[Sean]

Benefits can often make patients worse.

Leaving aside the lack of evidence for such a reckless causal claim, let's turn the logic around...

The lack of vital social support for a sick human who desperately needs it can make them much, much worse. It can deeply humiliate and degrade them, and brutally circumscribe their lives. It can even kill them.

We certainly know this much to be true.

I don't see this other side of that two edged sword figuring anywhere in Wessely's arguments. I see no healthy margin for error in his claims, no genuine humility and restraint in his pronouncements. I never see him consider:

'What if I am wrong? What would the consequences be for sick, vulnerable, innocent people?'

 

[In Vitro Infidelium]

It is a despicable propaganda lie by Wessely that anti-psych bias is what drives patient resistance to his approach.

Setting aside whether it is a 'lie' in the sense of a deliberate untruth, how do you know what motivates patients (other than yourself of course) ? The proposition of a single 'hive mind' sems unwaranted and denial of a potential failing actually induces its own vulnerabilities. To take on the possibility of a prejudice and to actually address it produces a stronger advocacy position than vehement denial.

IVI

 

[Valentijn]

Setting aside whether it is a 'lie' in the sense of a deliberate untruth, how do you know what motivates patients (other than yourself of course) ?

We don't know, of course. But neither does he, despite generalizing to ME patients in general:

Patients with chronic fatigue have long disliked psychiatry.
Wessely S, Powell R.The nature of fatigue: A comparison of chronic "postviral" fatigue with neuromuscular and affective disorders. J Neurol Neurosrg Psychiatry 1989;52;940-948.

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.
The National Archives of the UK: Public Record Office (PRO) BN 141/1, 1 October 1993 Wessely to Aylward, pp 17-18.

Accepting any form of psychiatric treatment is seen as stigmatizing CFS.
Wessely S. Neurasthenia and chronic fatigue syndrome: theory and practice. Transcultural Psychiatric Review 1994;31:173-209.

I think it is a deliberate lie in the sense that Wessely does not know what motivates patients, yet claims to, in order to advance his "ME is psychiatric" agenda and explain away resistance to it.

 

[Bob]

It is a despicable propaganda lie by Wessely that anti-psych bias is what drives patient resistance to his approach.

Setting aside whether it is a 'lie' in the sense of a deliberate untruth, how do you know what motivates patients (other than yourself of course) ? The proposition of a single 'hive mind' sems unwaranted and denial of a potential failing actually induces its own vulnerabilities. To take on the possibility of a prejudice and to actually address it produces a stronger advocacy position than vehement denial.

I'm not sure if acknowledging potential prejudice against a psychiatric label would be productive, esp if there isn't any evidence for it.
Shouldn't Wessely be the one providing evidence for his sweeping generalisation of the alleged prejudice of an entire patient population?
He fails to acknowledge any other reasons why the psychiatric label is rejected by patients.
I think that the FINE and PACE Trials are good evidence against his allegations.

 

[In Vitro Infidelium]

Wessely might have had a lot to say about my condition over the years - but a lot has changed in the meantime. I think that chief amongst this has been improved diagnoses and recognition of alternate diagnosis. Even if people are referred - like me - to Psychiatrists then said professionals will work to ensure that the primary diagnosis is the most correct one and will try to ensure that any other morbidities are spotted and treatment accordingly (sometimes separately sometimes in accord with the treatment for ME perhaps).

There’s always a tendency in any conflict, to attempt to reprise past wars. This may not have fatal consequences – so long as the terrain on which the conflict takes place hasn’t change, or that the technology of warfare hasn’t change or the motivation of the warring parties hasn’t changed or … or .. or !

Of course we are not involved in a direct conflict but (if it’s the approach we insist on) a ‘war’ of contending opinion where the outcome is influence (or not) upon individuals and bureaucracies who/which direct resources which are critical to our interests. IMO referencing 20 year old comments by the ‘enemy’ has all the relevance of, and likely to command as much respect as, the Maginot line in the face of the doctrine of Blitzkrieg. I think choosing conflict is in any case the wrong strategy but if that is to be the strategy then the individuals and bureaucracies whose attention we must ‘win’, are not going to be engaged by us following a tactic of fighting on ground where the ‘enemy’ was 20 years ago. Frankly I think we will rightly be regarded us as ‘nuts’.

I does rather bother me that this whole discussion is centred on the UK and the NHS, with frankly some monumental failings to understand the dynamics of UK politics and administration on the part of some posters – while at the same time the massive juggernaut of DSM V is moving over the Western horizon (talk about Blitzkrieg !) . I’d be rather more convinced about a strategy of conflict if we could actually see evidence from other countries of how successful this is (Netherlands, Australia perhaps ?). Yes there’s little Norway that had its Oslo spring (still didn’t ensure funding for Rutiximab work), but this persistent focus on the UK, indeed ‘England’ given the peculiarities of the current NHS structure, is beginning to look a bit odd. It rather reminds me of discussions in the 1980s about colonialism and slavery in which the notion of the ‘evil British’ served as a convenient cover for avoiding any consideration of the depredations and intolerances of other nations.

IVI

 

[Bob]

... e.g. 'the benefits makes you worse' comment cited above - should be considered at least.

Consider the alternative view. A person with ME applies for benefit and yet fails to get it. How does that make them feel? Does it feel as if not getting the benefit in some way invalidates their disability? Their claim to be disabled? That their condition is being 'made up'? I would suggest that it does to some degree.

If we were to substitute the term 'CFS' with 'MS' or 'Parkinson's', think about how ludicrous such assertions would be.
It's only because it's CFS/ME, that they can get away with such claims.

CFS/ME patients are not ill because they've managed to be successful in a benefits claim, are they?
Patients generally get ill first, and then subsequently claim benefits.
And there are CFS/ME patients who work full or part time.
Going back to work isn't a cure, or treatment, for CFS/ME.

So this whole approach towards CFS/ME patients is insulting, patronising, and not based on any real science.
It's just a case of creating ideas to fit a pet theoretical model of illness.
And it doesn't address the underlying causes of the illness. It's just fiddling around.

I've never seen such language used for any other disease.
Except for depression: The UK government does tend to say the same sort of thing for depressive patients (i.e. that getting back to work is helpful for depression). But I wonder if their data is robust enough to know if a depressive patient went back to work because they were feeling slightly better, or if a depressive patient felt better because they were forced back to work. (It seems obvious that depressive patients feeling relatively less depressed would be more likely to go back to work, and that patients feeling relatively more depressed would be more likely to claim benefits. I'm certain that stressful work situations can trigger depressive episodes in many many people. People in work are not immune to depression.)

(I'm not equating depression with CFS.)

Is it then that great a stretch to say that it is important not to confer the view that benefits are a confirmation of not only one's 'status' but that benefits are in some way only afforded to people who's chances of improvement are non-existent in a condition such as ME? Is it so unrealistic to effectively remove the 'hope' that recovery is possible? Or are you of the opinion that ME is incurable and life-long for everyone?

I don't understand this, Firestormm. Benefits are available to people to help them through difficult circumstances in their lives. Anyone who is not able to work, due to illness or incapacity etc, is able to claim benefits. Why single out CFS patients and say that if they claim benefits then it's some kind of perverse confirmation that they can never get better. Again, it's insulting and patronising, and not based on any real science. Where is the evidence for it?

Any why should patients be made to feel guilty about not working?
If a patient is not able to work, then they are not able to work.
Why create a perverse theory that CFS patients are not able to work because they receive benefits?
It seems more like a political stance than a serious medical approach to treatment.