Response to Anthony Cleare's comments on the PLoS website, open email to McClure

[leelaplay]

Stephen Ralph posted this to co-cure yesterday

(My note: I dont know what an open e-mail is. Did he send it to Prof McClure? Did he send it to PLoS?)


An open e-mail to Professor M. McClure - retrovirologist at Imperial College London
(With thanks to Sheila Campbell on MEActionUK)

15th January 2010

With Reference to Wessely, Cleare and Colliers' Response on the PLoS One Website

I found the following statement in Point 3 of Dr Anthony Cleare's response (below) to be quite extraordinary:

"We follow the same psychiatric exclusion criteria as mandated by the Fukuda criteria......In addition, we also exclude patients with chronic somatisation disorder as defined by DSM-IV, which is not required by the Fukuda criteria, but most experts and clinicians agree are a different population."

Why extraordinary?

Because of Professor Wessely and colleagues' long held and widely publicised view that CFS is a somatisation disorder (or medically unexplained syndrome, MUS)(1)(2)(3)(4)(5)

This theory is promoted in complete defiance of the scientific evidence which clearly shows CFS to be an organic disease. As such, by definition, CFS cannot be a somatisation disorder.(8)(9)

Somatoform disorder is defined in DSM-IV as follows:

"The most common characteristic of the somatoform disorder is the appearance of physical symptoms or complaints for which they have no organic basis."(6)

With such a profound turn around in thinking (if this really is the case)it would be helpful to all concerned if the authors could please clarify the following points:

1. Could you please state how all the authors defined CFS at the time of carrying out this research and do you still hold that perspective?

Lombardi et al unequivocally, on the basis of the scientific evidence, view CFS as an organic disease.

2. Could you please explain why you did not state in the paper that you had excluded patients with somatoform disorders.

3. If, as you say, you excluded patients in this research who had somatisation disorders, can you please explain why you cited papers in your reference list (for example, reference 9 by Wessely et al, "Chronic fatigue syndrome. A Practical Guide to Assessment and Management", 1997) which clearly classes CFS as a somatisation disorder.

3. And could you please explain why you did not cite papers, such as in Ref 8 & 9 below, which clearly show the organic basis of this disease?

4. Could you please inform us when the 186 blood samples were taken, since at least up until March 2009, Professor Wessely viewed CFS as a somatisation disorder(2) You could ask Professor Wessely if the blood drawn from his patients *after* he had changed his mind with Dr Cleare about CFS being a somatoform disorder or if the blood was drawn before they both changed their minds?

5.Could you please explain what has led to such a change of mind, no longer viewing CFS as a somatisation disorder?

Thank you for your time.

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

REFERENCES
1.
http://www.scielo.br/scielo.php?script=sci_arttext&pid=S1516-444620050003000
03

Chronic fatigue syndrome: an overview.
Cho HJ, Wessely S.
Rev. Bras. Psiquiatr. vol.27 no.3 So Paulo Sept. 2005 "Chronic fatigue syndrome is an exemplar of a medically unexplained syndrome."

"Similarly, functional somatic syndromes refer to groups of symptoms lacking disease-specific, demonstrable abnormalities of structure, and are usually defined by specialty or organ system. They include irritable bowel syndrome, fibromyalgia, chronic fatigue syndrome, multiple chemical sensitivity, chronic pelvic pain, temporomandibular joint dysfunction and more recentlyGulf War syndrome."

This paper is titled "CFS: An Overview" yet please note that the references,(consisting of 6 papers) do not include any papers on biomedical research.

2. http://www.newscientist.com/article/mg20126997.000-mind-over-body.html

New Scientist, Opinion, "Mind over body?", Professor Simon Wessely, 13 March 2009. Please note that there is no mention of all the biomedical research showing CFS to be an organic disease, hence readers may understandably have thought that it does not exist.

3. http://www.iop.kcl.ac.uk/vacancies/downloads/0740.pdf

Research carried out at the Institute of Psychiatry, Kings College London, where three of the authors of this paper are based.

Part 4 - The Project and the Post "Background: Anorexia Nervosa (AN) and Chronic Fatigue Syndrome (CFS) are classical psychosomatic disorders......Aberrant emotional processing is a strong candidate as a maintaining factor for these disorders."

4. http://www.meactionuk.org.uk/Corporate_Collusion_2.htm

From "Corporate Collusion?" by Professor Malcolm Hooper, Eileen Marshall and Margaret Williams, comments made by Professor Wessely over the years about CFS and CFS patients clearly showing how he views these patients and the disease:

"Wessely is on record as asserting that ME is merely a belief held by those who think they suffer from it; that ME patients muscle weakness is simulated; that efforts are made to over-interpret laboratory findings; that the average doctor will see ME patients are neurotic and will often be disgusted with them; that blaming a virus for the illness conveys advantages
by protecting the victim from personal blame; that symptoms are simply normal sensations and are the result of body-watching; that ME is a myth; that ME is learned helplessness; that once validation is granted by a doctor, the ME patient may assume the advantages of the sick role --sympathy, time off work, benefits etc; that ME symptoms have no anatomical or physiological basis; that patients aberrant beliefs are maintaining factors and that patients with ME exert a large and avoidable financial burden on health and social services.

(For individual references, see the December 2003 Briefing Paper for the House of Commons Health Select Committee: The Mental Health Movement: Persecution of Patients? which is available online at http://www.meactionuk.org.uk/SELECT_CTTEE_FINAL_VERSION.htm )."

5. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC539474/

Medically Unexplained Symptoms: Exacerbating Factors in the Doctor-patients Encounter, L A Page, S Wessely, Journal of the Royal Society of Medicine 2003:96:223-227 "This term (MUS) is now used in preference to "somatisation" However I cannot find MUS in the DSM-IV

6. http://www.psychnet-uk.com/dsm_iv/somatization_disorder.htm

Definition of somatisation disorder

7. http://www.meactionuk.org.uk/Wesselys_Way.htm

"Wesselys Way: Rhetoric or Reason?"
Professor Malcolm Hooper and Margaret Williams 22nd March 2008

8. http://www.meactionuk.org.uk/Research_References_Update_Dec_08.htm

List of reference and abstracts for some of the many biomedical research papers on CFS, plus inquest and autopsy information, see item 47 and 48.

9. Two further important references, 2009.

http://www.ncbi.nlm.nih.gov/pubmed/19955554?itool=EntrezSystem2.PEntrez.Pubm
ed.Pubmed_ResultsPanel.Pubmed_RVDocSum&ordinalpos=1

J Clin Pathol. 2009 Dec 2.
Microbial infections in eight genomic subtypes of Chronic Fatigue Syndrome / Myalgic Encephalomyelitis (CFS/ME).
Zhang L, Goudh J, Christmas D, Mattey D, Richards S, Main J, Enlander D, Honeybourne D, Ayres J, Nutt DJ, Kerr J. St George's University of London, United Kingdom;

http://www.ncbi.nlm.nih.gov/pubmed/19909538?itool=EntrezSystem2.PEntrez.Pubm
ed.Pubmed_ResultsPanel.Pubmed_RVDocSum&ordinalpos=1

J Transl Med. 2009 Nov 12;7:96.
Plasma cytokines in women with chronic fatigue syndrome.
Fletcher MA, Zeng XR, Barnes Z, Levis S, Klimas NG.

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

http://www.meactionuk.org.uk

 

[omerbasket]

4. http://www.meactionuk.org.uk/Corporate_Collusion_2.htm

From "Corporate Collusion?" by Professor Malcolm Hooper, Eileen Marshall and Margaret Williams, comments made by Professor Wessely over the years about CFS and CFS patients clearly showing how he views these patients and the disease:

"Wessely is on record as asserting that ME is merely a “belief” held by those who think they suffer from it; that ME patients’ muscle weakness is “simulated”; that efforts are made to over-interpret laboratory findings; that the average doctor will see ME patients are neurotic and will often be disgusted with them; that blaming a virus for the illness conveys advantages
by protecting the victim from personal blame; that symptoms are simply normal sensations and are the result of “body-watching”; that ME is a “myth”; that ME is “learned helplessness”; that once validation is granted by a doctor, the ME patient may assume the “advantages of the sick role --sympathy, time off work, benefits etc”; that ME symptoms have no anatomical or physiological basis; that patients’ aberrant beliefs are maintaining factors and that patients with ME exert a large and avoidable financial burden on health and social services.

(For individual references, see the December 2003 Briefing Paper for the House of Commons Health Select Committee: The Mental Health Movement: Persecution of Patients? which is available online at http://www.meactionuk.org.uk/SELECT_CTTEE_FINAL_VERSION.htm )."

I have to say that this citation is making me so mad I can't even begin to explain. This is even beyond what I thought about "Professor" Wessely untill now (since I heard of that man after the publication of his "research" regarding XMRV). I think that after it'll be discovered what is the organic cause of our illness (and hopefully it will be discovered soon) we should prosecute him and demand that he would pay millions of dollars because of the humiliation and physical problems that he had caused us by trying to convince the medical community that we're not really ill. In order to prevent some people from thinking that he was right when he said that we would like to think that we are ill because of all the advantages that comes allong with it, and also because we know how ilness cand turn your life upside down and sometimes even make you miserable, we should ofcourse donate all the money that we would gain from this trial to some medical oraganization (ofcourse we should take the costs of this trial and than donate what's left. And I believe that there must be a lot left. I don't even think we need a lawyer).

 

[Daisymay]

Stephen Ralph posted this to co-cure yesterday

(My note: I don’t know what an open e-mail is. Did he send it to Prof McClure? Did he send it to PLoS?)


An open e-mail to Professor M. McClure - retrovirologist at Imperial College London

15th January 2010

With Reference to Wessely, Cleare and Collier’s' Response on the PLoS One Website

My note: I don’t know what an open e-mail is. Did he send it to Prof McClure? Did he send it to PLoS?

An open e-mail to Professor M. McClure - retrovirologist at Imperial College London


15th January 2010

With Reference to Wessely, Cleare and Collier’s' Response on the PLoS One Website


Hi Islandfinn,

To explain, yes this has been posted on the PLoS site.

I wrote this comment and posted it on PLoS, in response to Dr Cleare's "authors' response" in the comments section of the PLoS UK XMRV paper. Then Stepehn posted it on to Co-Cure and Prof McClure.

Here's a link to Cleare's Authors response at the PLoS paper, and everyone's comments, some really good ones.

http://tinyurl.com/yzbwaxu

For these psychiatrists to claim that they do not now regard CFS as a somatisation disorder is really extraordinary, and quite unbelievable, but there you go, they have said it, it is in print for all to see.

The CFS community needs to spread this information that Wessely and co no longer view CFS as a SD far and wide and use it to counter all their assertions, in past, present and future writings that CFS is a SD.

And we need to inform people, researchers and media, of all the biomedical evidence which completely invalidates these psychiatric theories of causation, theories peddled by Wessely and of course Reeves.

There is a list of biomedical research papers and abstracts at ref 8 and 9 that can be used.

So if we don't all have SD then what do we have, what label will they come up with?

Or will they just try and ignore the fact that they have said this and carry on as usual?

And why have they dropped the SD label which has allowed them so successfully to denigrate and abuse the CFS community for so many years, why? What has precipitated this change?

 

[talkingfox]

And why have they dropped the SD label which has allowed them so successfully to denigrate and abuse the CFS community for so many years, why? What has precipitated this change?

I think it's because they know that in order to save any semblance of a career they must....and before any new research is validated and gets a bunch of press. Personally I think it's damage control, but then again I may just be getting cynical in my old age.

 

[Daisymay]

Hi Omerbasket,

I'm afraid the more you read of these people the mader you'll get! And it's completely understandable.

But once you are over the initial shock best to try and stand back from it a bit as it can consume a lot of energy feeling that way. Actually perhaps we all need CBT to help us not feel anger at Wessely and co!!!

Another thing I feel when reading of these psychaitrists antics is total disbelief that people can act with such seeming lack of conscience and compassion, quite staggering.

Yes I too hope that in the end the CFS community will see justice being done for us all in some form or another and perhaps that would help to stop doctors doing this in the future wth other illensses.

Professor Wesely is also heavily involved in denying the organic existance of GWS, another thing to be investigated.

 

[Daisymay]

Hi Talkingfox,

Yes that's what I am hoping is the case too. Time will tell.

 

[flex]

Please help with letter campaign to bring wessely to justice
Letter to UK government, WHO, BBC and worldwide press etc etc demanding Wesselys suspension and further money for biomedical testing



I am intending on demanding Wesselys immediate suspension from all issues surrounding ME/CFS from the UK government as a public concern and human rights issue with as many signatures as possible from the worldwide ME community. There are 17million of us.

The letters will be sent simultaniously to all major press organisations, medical councils and the WHO.

The letter will be typed on line soon and available for download to be sent from anyone anywhere in the world. Once the letter is available for download it can be sent on a circular to multiple email recipients including all his superiors and deans of colleges etc.
The first draft will head its own thread soon open to editing suggestions.
Lets put him in the spotlight and try to get a really good investigative journalist to take up the story.

I NEED ADVOCATES TO HELP DRAFT AND EDIT THE LETTER AND PEOPLE TO SOURCE INFORMATION

PRIVATE MESSAGES WELCOME!!

 

[flex]

Please help with letter campaign to bring wessely to justice
Letter to UK government, WHO, BBC and worldwide press etc etc demanding Wesselys suspension and further money for biomedical testing



I am intending on demanding Wesselys immediate suspension from all issues surrounding ME/CFS from the UK government as a public concern and human rights issue with as many signatures as possible from the worldwide ME community. There are 17million of us.

The letters will be sent simultaniously to all major press organisations, medical councils and the WHO.

The letter will be typed on line soon and available for download to be sent from anyone anywhere in the world. Once the letter is available for download it can be sent on a circular to multiple email recipients including all his superiors and deans of colleges etc.
The first draft will head its own thread soon open to editing suggestions.

I NEED ADVOCATES TO HELP DRAFT AND EDIT THE LETTER AND PEOPLE TO SOURCE INFORMATION


The issue is going to be about Wessely his Psycobabble school and provable issues. I will keep out issues that he could contend are inflammatory.

The point is a mass media, government, dept of health campaign is going to make his position untenable. Everyone around him will have to come down with him after we play divide and rule on them. They will have no choice but to point the finger at each other. We need to attract the attention of a really good investigative journalist, let them take the libel issues on with the backing of a large media company. We want people to be fighting over the story.

We are in the right, on the side of truth!!

The first draft will head its own thread within a few days open to editing suggestion.

Can we do this?

YES WE CAN!!!

Thanks all.
PRIVATE MESSAGES WELCOME!!

 

[Marco]

He appears to be similary inconsistent on the subject of Gulf War Syndrome


"Chronic fatigue syndrome: an overview.
Cho HJ, Wessely S.
Rev. Bras. Psiquiatr. vol.27 no.3 So Paulo Sept. 2005 "Chronic fatigue syndrome is an exemplar of a medically unexplained syndrome."

"Similarly, functional somatic syndromes refer to groups of symptoms lacking disease-specific, demonstrable abnormalities of structure, and are usually defined by specialty or organ system. They include irritable bowel syndrome, fibromyalgia, chronic fatigue syndrome, multiple chemical sensitivity, chronic pelvic pain, temporomandibular joint dysfunction and more recentlyGulf War syndrome."


Excerpt from Wikipedia

More recently, Wessely's work was the first to show that service in the 1991 Gulf War had had a significant effect on the health of UK servicemen and women. Other work suggested a link to particular vaccination schedules used to protect against biological warfare, and also a link with psychological stress. His group also confirmed that classic psychiatric injury, post-traumatic stress disorder (PTSD), was not a sufficient explanation for the observed health problems. He and his colleagues in the medical school showed persisting evidence of immune activation, but failed to show that exposure to organophosphate or cholinesterase inhibitor agents had caused chronic neurological damage. The group also showed that many veterans who left the Armed Forces with persisting mental health problems have found it difficult to access National Health Service (NHS) services.[citation needed]

This work, Wessely's evidence to the Lloyd Inquiry,[28] and the work of other investigators was crucial in categorising Gulf War Syndrome as a verifiable consequence of service in the Gulf. As a result, affected Gulf War veterans were able to receive war pensions.[29]

I checked some of the references and Dr Wessley does appear to have a lot more sympathy for military personnel, spending a great deal of time examining the possiblity of organic disease processes and suggesting himself that the vaccines provided were a likely contributing factor.

 

[Dr. Yes]

Hey Marco

Thanks for the research... Just wanted to give the caveat that Wikipedia is a highly suspect source when it comes to all things Wessely; it serves as a propaganda tool for him more than anything else. I've found that even its reference selection in such entries is often heavily biased in favor of his viewpoints.

 

[DysautonomiaXMRV]

Read this on his views on GWS

No mention on the 10,000's of people now dead, increase in motor neurone disease and birth defects.
Or, the fact even the MOD admit 1 in 10 people with GWS develop ME.

I wonder if the figures really are just 10%.

Nancy Kilmas's XMRV study in GWS will be most interesting!

 

[leelaplay]

Thanks for the explanation daisymay. Much appreciated. There were some great responses on PLoS - I also like this one (my spacing and bolds). I hope the authors will respond to the letters and hope Prof McClure will respond to your open letter.

RE: RE: Authors Response
Kgeraghty replied to stick on 13 Jan 2010 at 18:54 GMT

Prof. Wessely et al.,

I believe you have added approximately 25 references in support of your original paper and your choice of selection criteria for patients used in the study.

Of these 25 references, you are a co-author in about 14 of these references,

and your colleagues at Kings and elsewhere are cited in many of the other references.

It appears to me, as a humble researcher, that self-referencing does not do much to support ones thesis, to gain support for a view or methodology researchers seek the approval of a wider audience.

Quoting oneself does not advance science. Prof. Wessely and his colleagues subscribe to a particular dogma concerning ME/CFS, therefore to use ones own work to support ones current work, only weakens the status of the current paper. Science is progressed when an individual or group achieves the support of the wider scientific community (T.Kuhn).



Lastly, science is in many ways, is a set of accepted methodology. Others have commented how the methodology followed at Imperial, differed greatly from that at the WPI.

Science needs to remain a-political. Prof. Wessely's role in the insurance industry, as either paid or unpaid advisor, and his colleagues role in this area of the private sector, as well as his controversial stance on the aetiology and patho-physiology/ together with his views on treatment of ME/CFS, raises the issue of a conflict of interest in this paper, all of which creates doubt and the notion that this paper holds a political agenda. We can only move forward by having truly independent researchers replicate the WPI study, not deeply embedded political protagonists, such as Prof. Wessely et al..

This is my view as a humble observer and researcher in science!
No competing interests declared.

Here's a link to Cleare's Authors response at the PLoS paper, and everyone's comments, some really good ones.

http://tinyurl.com/yzbwaxu

For these psychiatrists to claim that they do not now regard CFS as a somatisation disorder is really extraordinary, and quite unbelievable, but there you go, they have said it, it is in print for all to see.

The CFS community needs to spread this information that Wessely and co no longer view CFS as a SD far and wide and use it to counter all their assertions, in past, present and future writings that CFS is a SD.

And we need to inform people, researchers and media, of all the biomedical evidence which completely invalidates these psychiatric theories of causation, theories peddled by Wessely and of course Reeves.

There is a list of biomedical research papers and abstracts at ref 8 and 9 that can be used.

I completely agree. We have to memorize Wessely saying CFS is NOT a somatisation disorder and have the reference ready. ANd publish it everywhere.

I'm not up on your NICE Guidelines and the PACE trials - but couldn't this play a significant role?

thanks for doing all this!
if

 

[Daisymay]

I'm not up on your NICE Guidelines and the PACE trials - but couldn't this play a significant role?

( Sorry lost the plot, can't remeber how to work out the automated quotes)

Well I'm hoping that this may be of some help yes,it certainly should be but they may come up with a very similiar or even worse label for us to contend with. And they may also just keep on going denying they ever said this just like they deny the existance of all the biomedical evidence. That's wy we need to keep on quoting this statement and informing CFS patients and activists about it.

I'm just hoping that with many more researchers from out with the CFS field looking into this disease now because of XMRV, that they will be getting their heads round all the organic research evidence and hence the cat will be out of the bag and it will be a lot more difficult for the Wesselyites to keep on ignoring all the evidence, not very good for their scientific crediblilty, but we'll just have to wait and see.