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Brief Margaret Williams

aan Wessely c.s:

immunologische afwijkingen

in ME/CVS en fibromyalgie

zijn onmiskenbaar.






Naar aanleiding van twee studies (klik hier en hier voor het volledige studieverslag)

die het belang van immunologische afwijkingen in ME/CVS resp. fibromyalgie onderstrepen,

schreef Margaret Williams een brief aan Simon Wessely, Peter White en Michael Sharpe.




For the attention of Professor Sir Simon Wessely,

Professors Peter White OBE and Michael Sharpe



Margaret Williams

23rd February 2013


Your attention is drawn to two recently published papers,

one on fibromyalgia (FM) and the other on myalgic encephalomyelitis (ME).


You will doubtless recall

that in 1999,

Professors Wessely and Sharpe published their conviction

that FM and ME (referred to as CFS/ME),

together with irritable bowel syndrome and pre-menstrual syndrome,

constitute but one single functional somatic syndrome

(Functional somatic syndromes: one or many?

S. Wessely, C Nimnuan, M Sharpe. Lancet 1999:354:936-939) and

that in 2004,

Professor White published his belief

that CFS/ME is an individual functional somatic syndrome

(In Debate: there is only one functional somatic syndrome.

Peter D White. British Journal of Psychiatry 2004:185:95-96).


In the latter paper, two of you said you still stood by your thesis

that FM and ME are components of a single functional somatic syndrome.


Furthermore, when NICE was compiling its Clinical Guideline 53 on CFS/ME,

Professor White advised NICE against prescribing anything for bowel problems,

stating authoritatively that such interventions:

"are not treatments of CFS/ME since bowel symptoms are not part of CFS/ME"

(85 FULL


It seems that those who disagreed with such views may have been correct.


On 17th December 2012 a paper on fibromyalgia

from the University of Illinois, Chicago, was published in BMC Clinical Pathology

which seriously undermines your own beliefs

(Unique immunologic patterns in fibromyalgia.

Frederick Behm et al:


Here are some extracts:


"Recent data highlight the role of the immune system in FM.


Aberrant expres­sions of immune mediators, such as cytokines,

have been linked to the pathogenesis and traits of FM.


We therefore determined

whether cytokine produc­ion by immune cells is altered in FM patients

by comparing the cellular responses ... of a large number of patients

with FM to those of healthy matched controls".


"FM is common in patients with autoimmune disorders,

such as systemic lupus erythematosus, Sjogren’s Syndrome and rheumatoid arthritis".


"We utilised multiple immunologic methods to develop an objective test...

This test is based on specific abnormalities in

the cytokine levels of stimulated peripheral blood mononuclear cells".


"In the past, FM was claimed to be

a rheumatologic, neurologic or psychiatric disease

despite the fact that

there were no objective links to any of these pathways".


"Our findings uncovered evidence that

FM is instead an immunologic disorder.


"They prove that the immunologic basis of FM

occurs independently of any subjective features".


The second paper is about ME

(Plasmacytoid Dendritic Cells in the Duodenum of Individuals

Diagnosed with Myalgic Encephalomyelitis are

Uniquely Immunoreactive to Antibodies to Human Endogenous Retroviral Proteins.

Kenny L de Meirleir; Marc Fremont, Vincent Lombardi et al.

In vivo 2013:12:177-188).


Here are some extracts from it:


"Myalgic encephalomyelitis (ME) is a debilitating illness…

characterised by neurocognitive dysfunction, inflammation,

immune abnormalities and gastro­intestinal distress.


An increasing body of evidence suggests that

disruptions in the gut may contribute to the induction of neuroinflammation.


Therefore, reports of human endogenous retroviral (HERV) expression

in association with neuroinflammatory diseases

prompted us to investigate the gut of individuals with ME

for the presence of HERV proteins".


"Autoimmune diseases

such as multiple sclerosis (MS) and systemic lupus erythematosus (SLE)

have many symptoms that overlap with those of ME".


"Neurological manifestations often associated with ME

are analogous to the neuroinflammation and cognitive abnormalities

associated with MS and SLE".


"Additionally, gastrointestinal aberrations,

which are common to individuals with MS and SLE,

are among the most frequent symptoms reported by those with ME".


"HERV proteins and serum antibodies against HERVs

have been associated with a number of autoimmune diseases,

including MS and SLE".


"Individuals with ME have a significant number of symptoms

that are similar to those described in autoimmune diseases such as MS and SLE.


Additionally, the expression of HERV proteins has been observed

in the lymphoid tissue of individuals with autoimmune disease...


the gut represents the largest lymphoid compartment and

is a significant site of ME-related pathology".


"In this study we have shown that

gut biopsies from 8 out of 12 individuals with ME

displayed immunoreactivity consistent with the presence of HERV proteins.


However, the same immunoreactivity

was not observed in the biopsies of the controls".


"Additionally, we have shown that the immunoreactivity

was observed in cells with a phenotype

that is consistent with pDCs (plasmacytoid dendritic cells).


These observations suggest that

the presence of the HERV protein in pDCs

may be associated with a pathological manifestation

in at least a subset of individuals with ME".


"While the expression of endogenous retroviral proteins

in the pDCs of ME cases does not intrinsically explain pathology,

the observation that

the immunoreactive proteins are only observed in pDCs is supportive of this concept.


This supposition is further supported by our previous report of

the dysregulation of inflammatory cytokines in a cohort of ME cases".


"These data suggest that our observations in subjects with ME

may not be unique to this disease but may, in fact,

be common to diseases characterised by chronic inflammation".


"Although the Canadian consensus criteria for ME

and the Fukuda criteria for CFS

do not include symptoms of autoimmunity,

the recent study by Fluge et al supports the notion that

at least a subset of individuals with ME

may have an autoimmune element to their disease.


Autoimmune diseases such as SLE, MS and rheumatoid arthritis

have several common symptoms that overlap with those of ME and

all have been associated with the pDC dysfunction.


Moreover, the same autoimmune diseases

are also reported to be associated with the expression of HERVs".


"Inflammation is known to increase HERV expression; therefore

if pDC-associated inflammation drives the expression of endogenous retroviruses,

it is also conceivable that

dysregulated expression of other proteins in pDCs may occur.


Consequently, the antigen-presenting abilities of pDCs

may contribute to the production of auto-reactive antibodies,

as is observed in ME".


"The presence of these proteins in the pDCs of individuals with ME

but not in controls does support an involvement of pDCs in ME".


Clearly the role of the immune system in both FM and ME is important.


You will recall that, in his evidence given

on 10th August 2004 before Lord Lloyd of Berwick

at the Independent Inquiry into Gulf War Illnesses,

Sir Simon is on record as affirming:

"A man has got to know his limitations and

my limitations are immunology"

(Professor Simon Wessely; Minutes of Proceedings).


Can it now be understood why so many people find it inexplicable

that Sir Simon was awarded the inaugural John Maddox Prize

for being "an inspiration" for "standing up for science";

for working with "courage and dignity

to uphold the standards of science and evidence against the forces of prejudice";

for battling "to ensure that sense, reason and evidence base

play a role in the most contentious debates" and

for his "sustained resilience and determination to promote good science",

whilst Professor White was awarded an OBE

for services to medical education on CFS?