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
(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