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Continuing Correspondence, Countess of Mar and Prof White and Prof Sir S Wessely

Dolphin

Senior Member
Messages
17,567
Actually this is not a change of position. White has still said the illness "develops in the first place" because of "certain infections". This isn't why people continue to be ill, in his and his friends' estimation. That is related to "beliefs about an illness determine the ways people cope with it". And recover or not. According to much of their published research, according to their "pragmatic rehabilitation", according to claims made in PACE manuals, and according to claims of 'return to normal' and even 'recovery' in the literature (no 'recovery' there) and to the media.
Good points.

The best analogy I can come up with regarding Peter White's views is that patients are like very obese patients. This occurred to me when reading all the various supports he/his clinic wanted to deny patients when they responded to the draft NICE guidelines: http://forums.phoenixrising.me/inde...ice-guidelines-insight-into-their-views.1239/ .
One can find physical abnormalities in very obese people. But with enough dedication, many might be able to reverse these (through calorie control, exercise programs, etc.). And some might argue that giving very obese people disability payments, mobility aids, etc. might get in the way of them putting the full effort into losing weight.

Like others, I haven't seen much sign of meaningful change in Peter White's views.
(I tend to think less about what Simon Wessely says - he seems to say different things to different audiences and just because he says one thing one moment, doesn't mean he won't take a different approach another time. Also, I think these days Peter White is a more important player in the ME/CFS world).
 

Dolphin

Senior Member
Messages
17,567
In 2009 you commented that Sharpe and Wessely believed: “functional disorders…include irritable bowel syndrome (and) CFS/ME. I have argued against this idea, suggesting that the commonality is abnormal illness behaviour, as seen in the process of somatisation” (Psychol Med 2009: 15 April: 1-9:pMID:19366500). Clearly you do promote the view that ME/CFS is abnormal illness behaviour.
That reference, I'm pretty sure, is incorrect, as four people wrote the paper.

I think they copied the quoted incorrectly from Magical Medicine (on PACE Trial):
Peter White states about fibromyalgia (Psychol Med 2009:15 April: 1‐9:pMID: 19366500): “the increased incidence of the diagnosis may more reflect a change in the fashion for the diagnosis of fibromyalgia by GPs”, a common charge made by the Wessely School in relation to “CFS/ME”, for example, Wessely himself decreed: “It is regrettable that ME has become a disease of fashion, even a ‘fad’ ” (Recent Advances in Clinical Neurology, Churchill Livingstone 1990, pp 85‐131).

White also asserts: “There is little doubt that patients with fibromyalgia have close comorbidities with several disorders that are regarded by many as functional disorders. These include: irritable bowel syndrome (and) CFS/ME. I have argued against this idea, suggesting that the commonality is abnormal illness behaviour, as seen in the process of somatisation” and he concludes: “The final area of commonality between fibromyalgia and CFS concerns the social risk markers for maintenance of both disorders”
(http://www.entretiens‐du‐carla.com/publication.php?pub=fibro&pg=fatigue ).

- the final link is actually on the next page of the pdf.
I think I recall this conference in France. However, the link no longer works.
ETA:
I searched my computer for "entretiens" and found the following:

White PD. Fibromyalgia: Is pain the new fatigue? In: Fibromyalgia: From
complaints to evidence. Branco J and Wessely S (eds). Castres, France, Les
Entretiens du Carla
www.entretiens-du-carla.com 2004, 22-25
so this might be the reference. Anyone able to confirm?

ETA #2:
The White paper can be found at:
http://entretiens-du-carla.fr/publication.php?pub=fibro&pg=fatigue (if one removes the http://" bit)
e.g. if one googles:
Fibromyalgia: From complaints to evidence. Branco J and Wessely S
the fifth link down has the link.
.
 
Messages
13,774
That reference, I'm pretty sure, is incorrect, as four people wrote the paper.

I think they copied the quoted incorrectly from Magical Medicine (on PACE Trial):
Peter White states about fibromyalgia (Psychol Med 2009:15 April: 1‐9:pMID: ): “the increased incidence of the diagnosis may more reflect a change in the fashion for the diagnosis of fibromyalgia by GPs”, a common charge made by the Wessely School in relation to “CFS/ME”, for example, Wessely himself decreed: “It is regrettable that ME has become a disease of fashion, even a ‘fad’ ” (Recent Advances in Clinical Neurology, Churchill Livingstone 1990, pp 85‐131).

White also asserts: “There is little doubt that patients with fibromyalgia have close comorbidities with several disorders that are regarded by many as functional disorders. These include: irritable bowel syndrome (and) CFS/ME. I have argued against this idea, suggesting that the commonality is abnormal illness behaviour, as seen in the process of somatisation” and he concludes: “The final area of commonality between fibromyalgia and CFS concerns the social risk markers for maintenance of both disorders”
(http://www.entretiens‐du‐carla.com/publication.php?pub=fibro&pg=fatigue ).

- the final link is actually on the next page of the pdf.
I think I recall this conference in France. However, the link no longer works.
ETA:
I searched my computer for "entretiens" and found the following:


so this might be the reference. Anyone able to confirm?
.

Searching for the paper's id 19366500 I got to this: http://www.ncbi.nlm.nih.gov/pubmed/19366500

Psychol Med. 2009 Nov;39(11):1913-21. doi: 10.1017/S0033291709005601. Epub 2009 Apr 15.
Risk markers for both chronic fatigue and irritable bowel syndromes: a prospective case-control study in primary care.

Hamilton WT, Gallagher AM, Thomas JM, White PD.
Source

Academic Unit of Primary Health Care, University of Bristol, Bristol, UK.

Full paper here:

http://www.cfids-cab.org/rc/Hamilton-1.pdf

I did a quick search for 'somatisation' and nothing came up.

I was just searching Mar's letter for 'somatisation' to get context (I've still not read her letter properly), and noted the the use of the “somatisation par excellence” quote isn't really right. I've forgotten the exact context now, but I'm pretty sure he wasn't saying all CFS/ME was “somatisation par excellence”.

I think that this is an important point from Mar:

"Using terms that are deliberately ambiguous, sometimes with the intention of concealing the clinician’s belief that the patient has a mental illness, can only be damaging to the doctor-patient relationship."

But it's really undermined by the use of ambiguous or misleading quotes. I think that the way in which Wessely et al manipulate language is a serious problem, but it's important to ensure that those criticising him make sure that criticism of him is very clear, precise and accurate.

I've not read the paper this refers to, but I did read some of the discussion of it here, and this looks like a problematic representation of it:

"In his 2012 JNNP paper (for which he designed the study and edited the manuscript -- The function of ‘functional’: a mixed methods investigation. JNNP: 16th January 2012) Sir Simon says that: “The term ‘functional’ …has increasingly come to mean ‘hysterical’…(and) its ambiguity was seen as useful when engaging with patients…. ‘Functional’ is a common term for medically unexplained symptoms…It has retained popularity among neurologists as a medical term for conversion disorder….It can, for example, be used to mean a disturbance of bodily function or it can be used to denote conversion disorder, and by telling a patient they have a ‘functional disorder’ they may encourage them to contemplate the former meaning without being aware of the latter…allowing neurologists to use the same term to mean one thing to colleagues and another to patients”."

I don't really want to go through the rest of it. Looks like there are problems with it though. Even if it does still make some good points, the problems cannot help but undermine it.

Mar needs to get Dolphin to double-check her stuff!
 

Dolphin

Senior Member
Messages
17,567
Mar needs to get Dolphin to double-check her stuff!
Thanks, but I have a lot of things to be doing.

Ellen Goudsmit may be volunteering in a post on the ME Association Facebook page. She would have a better knowledge of the literature than me, particularly papers from before around 2003/4 (I recall her saying at one stage she has read 99% of the literature, although I think she hasn't been reading so many papers in the last couple of years or so).

Also proof readers/fact checkers can come in various forms. For example, as I pointed out, that reference was a four-person paper, so it is not likely to contain quotes from Peter White saying, "I have argued against this idea, ...".
 
Messages
13,774
A Dutch report in February 2008 came to unambiguous conclusions about CBT for ME/CFS: the study “does not confirm the high success rates regularly claimed by research into the effectiveness of CBT for ME/CFS”. It found no increase in employment rates, in educational training, engaging in sports, maintaining social contacts and doing household tasks. The majority reported substantial deterioration. Moreover, the length of the therapy did not affect the results. The authors’ conclusion was: “Overall, CBT for ME/CFS does not improve patients’ well-being. More patients report deterioration of their condition rather than improvement. Our conclusion is that the claims in scientific publications about the effectiveness of this therapy, based on trials in strictly controlled settings within universities, have been overstated and are therefore misleading” (Source: Medisch Contact, February 2008, ISBN: 978-90-812658-1-2, by Koolhaas MP, de Boorder H, van Hoof E. The Netherlands).

I've just been looking in to this, and while the quotes are accurate, it's not a very good study. On my first read through, I thought that this was referring to some different (and more interesting) work.

Here's a link to the paper Mar quoted from: http://translate.google.co.uk/trans...a=X&ei=hi8HUe-4Me7J0AX5woGQDw&ved=0CDYQ7gEwAA

I've not read the whole paper, but once I realised it was only 100 people and retrospective I decided to stop reading it.
 

Dolphin

Senior Member
Messages
17,567
I've just been looking in to this, and while the quotes are accurate, it's not a very good study. On my first read through, I thought that this was referring to some different (and more interesting) work.

Here's a link to the paper Mar quoted from: http://translate.google.co.uk/translate?hl=en&sl=nl&u=http://www.medivera.nl/cgtbijmecvsvanuitperspectiefpatient2008.pdf&prev=/search?q=%22Cognitieve+gedragstherapie+bij+het+chronische+vermoeidheidssyndroom+(ME/CVS)+vanuit+het+perspectief+van+de+pati%C3%ABnt%22&hl=en&safe=off&client=firefox-a&hs=901&tbo=d&rls=org.mozilla:en-GB:eek:fficial&sa=X&ei=hi8HUe-4Me7J0AX5woGQDw&ved=0CDYQ7gEwAA

I've not read the whole paper, but once I realised it was only 100 people and retrospective I decided to stop reading it.
For anyone interested, the original is here: http://www.medivera.nl/cgtbijmecvsvanuitperspectiefpatient2008.pdf
(mostly in Dutch, but has an English abstract)

Rough translation of the tables into English are here: https://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0803A&L=CO-CURE&P=R890&I=-3&d=No+Match;Match;Matches
 

user9876

Senior Member
Messages
4,556
Looks like they have given up as they have difficult questions to answer
http://www.meactionuk.org.uk/White-and-Wesselys-final-Response.html
Dear Lady Mar,

Thank you for your recent email and letter.

We are disappointed that your response quotes sentences from various papers and presentations without context to seek to confirm conclusions already arrived at; conclusions we do not share. We cannot even agree the meaning of terms, let alone a more detailed analysis of the literature. As one example, perpetuating or maintaining factors of a medical condition are not the same as the causes of the condition. So, treatments tested and shown to be effective in the PACE trial do not address the infection that may have started CFS, but do help patients address particular barriers to their recovery, which are often nothing to do with an original infection.

With regret, we believe that continuing a correspondence will not bring our views closer together.

Yours sincerely,

Professor Peter White and Professor Sir Simon Wessely

They are either confused about the meaning of causation as opposed to trigger or it is clear that their hypothesis for ME is that an initial illness is caused by a virus and then that illness continues to be maintained via psychological issues. They also claim that the PACE trial is effective. By shying away from a proper discussion on causation they are failing to advance science - within their description they leave no room for a hypothesis of immune system failures. If their simplistically defined disease lifecycle is adopted it reduced the space to look for causation.

From reading this I think it is clear they have not changed their views one bit - but as usual do not want to be clear. I find it hard to understand how scientists who have written over 100 papers on a subject can have failed to define their hypothesis with clarity and unambigously. What is worse is they are professors celebrated by british science - it doesn't say much for the future of the country.
 

Dolphin

Senior Member
Messages
17,567
They are either confused about the meaning of causation as opposed to trigger or it is clear that their hypothesis for ME is that an initial illness is caused by a virus and then that illness continues to be maintained via psychological issues. They also claim that the PACE trial is effective. By shying away from a proper discussion on causation they are failing to advance science - within their description they leave no room for a hypothesis of immune system failures. If their simplistically defined disease lifecycle is adopted it reduced the space to look for causation.

From reading this I think it is clear they have not changed their views one bit - but as usual do not want to be clear. I find it hard to understand how scientists who have written over 100 papers on a subject can have failed to define their hypothesis with clarity and unambigously. What is worse is they are professors celebrated by british science - it doesn't say much for the future of the country.
One of the ways to test their hypothesis might be to see do the treatments they recommend lead to recovery.

However, they have said in response to a FOI request http://www.whatdotheyknow.com/request/pace_trial_recovery_rates_and_po they won't be releasing or publishing the data for the pre-defined outcome measure, "recovery". It looks like instead they will be releasing data on some watered down definition, which doesn't really test the hypothesis. (the original definition wasn't perfect either, but going for a looser definition certainly isn't the way to go).
 

MEKoan

Senior Member
Messages
2,630
I don't really want to go through the rest of it. Looks like there are problems with it though. Even if it does still make some good points, the problems cannot help but undermine it.

Damning with faint praise is an interesting technique but I can't, for the life of me, figure out why some of you went to such lengths to do it here - post after post of criticism and questions of accuracy by a couple of posters. Surely W&W are able to do this on their own. I don't think it did anything to change the outcome of this dialogue but it seems designed to raise questions re Lady Mar's excellent correspondence - which were correspondence, not scientific papers, after all - and meactionuk.

No need to respond to this. Just an observation.
 

Min

Guest
Messages
1,387
Location
UK
Damning with faint praise is an interesting technique but I can't, for the life of me, figure out why some of you went to such lengths to do it here - post after post of criticism and questions of accuracy by a couple of posters. Surely W&W are able to do this on their own. I don't think it did anything to change the outcome of this dialogue but it seems designed to raise questions re Lady Mar's excellent correspondence - which were correspondence, not scientific papers, after all - and meactionuk..


Well said Koan.

Lady Mar raised very valid points which they have simply refused to answer - because they cannot. It is our lives and those of our families that they have destroyed by misappropriating all research and treatment funding for our physical illness since the 1980s, and giving us only unscientific nonsense as treatment. Their 'graded exercise' treatment is so dangerous that many of the quarter of all UK sufferers who are severely affected report being made so by it.

They say:

treatments tested and shown to be effective in the PACE trial do not address the infection that may have started CFS, but do help patients address particular barriers to their recovery, which are often nothing to do with an original infection.

when, at their insistence, we in the UK are never tested for the persistent infections implicated in M.E. In 27 years of severe M.E. I have not been tested for any.

There is no proof that their treatments were
shown to be effective in the PACE trial ]
for M.E. as people with M.E. were excluded from the trial.
 
Messages
95
That final response was a complete stonewall really wasn't it.

Team BPS as ever, choosing the questions they answer and ignoring the rest.

So there you have it, an obstinate commitment to non-engagement of inconvenient questions or suggestions. Clearly they're not going to expose themselves as charlatans.
 

Shell

Senior Member
Messages
477
Location
England
when, at their insistence, we in the UK are never tested for the persistent infections implicated in M.E. In 27 years of severe M.E. I have not been tested for any.

There is no proof that their treatments were for M.E. as people with M.E. were excluded from the trial.

Same here. No tests for anything that might actually show something. I can't help thinking they have been well rewarded for their no tests- no treatment approach.
Lady Mar (bless her cotton socks) smoked them.

They may wish not to expose themselves as charlatans but this little correspondance shows them as little better than hedge witches and snake oil merchants.

And all at our expense.
 

anniekim

Senior Member
Messages
779
Location
U.K
Yep, their answer very clearly shows they still very firmly believe psycho and social factors maintain the illness, complete nonsense of course, but nonsense that has caused us huge damage.

Digressing slightly, I know it is said that due to criteria used in the horrid pace trial many m.e patients were excluded, moderate and severe, what I don't understand is why the results, despite how they spin it, we're still woeful
 

anniekim

Senior Member
Messages
779
Location
U.K
What is worse is they are professors celebrated by british science - it doesn't say much for the future of the country.

yes, agree. I wonder why the British medical establishment give this view such support? I've seen it said that our medical journals like the Lancet etc happily publish these psychs flawed papers on M.e and yet refuse many bio medical papers. Why is this? Cronyism? just an inability to admit they have been wrong?
 
Messages
13,774
I don't think it did anything to change the outcome of this dialogue but it seems designed to raise questions re Lady Mar's excellent correspondence - which were correspondence, not scientific papers, after all - and meactionuk.

I wanted to see what was true.

I've still not properly read Mar's letter, but there were a couple of parts that stood out to me as interesting, so I checked the sources. The first couple seemed accurate, but when there was a way of linking to the original source for others to judge for themselves, I still posted the link.

Then Dolphin mentioned one thing which did not seem accurate (or seemed poorly cited, I'm not sure), I spotted another quote that was misleading out of context, and the use of a study which was not very good (although not any worse than some of the poor studies used to bolster psychosocial claims about CFS).

How can we judge whether a letter is excellent or not without taking the time to check whether the claims made within it are accurate or not? I cannot make any judgement on it overall, as I've still not read it, and certainly haven't taken the time to check all of the claims made with it, but I do think that the problems that have been found with it are serious enough to seriously weaken the worthwhile points raised.
 

Min

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Location
UK
As they are refusing to answer it is hardly worth any more nitpicking Esther.

They are unable to defend the indefensible - that their hijacking of all funding for a physical illness, plus their carefully orchestrated denigration of those suffering from it, has condemned huge numbers of people to decades of unnecessary suffering.
 

barbc56

Senior Member
Messages
3,657
Damning with faint praise is an interesting technique but I can't, for the life of me, figure out why some of you went to such lengths to do it here - post after post of criticism and questions of accuracy by a couple of posters. Surely W&W are able to do this on their own. I don't think it did anything to change the outcome of this dialogue but it seems designed to raise questions re Lady Mar's excellent correspondence - which were correspondence, not scientific papers, after all - and meactionuk.

No need to respond to this. Just an observation.

I feel I need to respond. I can only speak for myself here, but I apply the same type of critical thinking to Wessely and company. When you see quote after quote that misrepresents him, it doesn't add any credibility for advocacy or quotes that may be accurate. It's gotten to the point that I try to check every quote but I just don't have the energy to do that. While I am also skeptical of Wessely it appears that the meme of poor us and it's all his fault is getting a bit tiresome. Because we perceive someone has treated us unfairly is no justification for using the same techniques against him.

It's the same with the science. I don't go in with a perceived notion or at least as much as possible. It just so happens that my conclusions are a bit different than some here.

We all need to raise questions. And yes, it's poor us. But continuing like this, picking everything apart that Wessely, White et. al. as well as ascribing motives which are nothing but speculation is not productive. If anything we need to focus on the fallacies of the PACE trial.

We are all in this together. As a group we can do a lot. I would just like to see the direction of our energy change to something that will get us somewhere.

Attacking an opponent is the least credible type of debate.

Barb