ME/CFS: UK versus US

[Guest guest]

ME/CFS: UK versus US

Margaret

22nd December 2008

It is anticipated that the differences in the

understanding of and the approach to ME/CFS in the

UK as set out by NICE in its Clinical Guideline 53 on

" CFS/ME " as compared with current biomedical

research in the US will be brought to the attention of

the Judge in the forthcoming Judicial Review on 11th

and 12th February 2009 in the High Court in London.

Specifically, NICE failed to identify or define the

disorder in question in that the Guideline

Development Group (GDG) failed to differentiate ME

from states of medically unexplained chronic fatigue

and, importantly, advised against the very

investigations that would do so. NICE also rejected

the use of the Canadian case definition, these being

the criteria that distinguish ME/CFS from other states

of medically unexplained chronic fatigue.

For almost two decades, the Wessely School has

called the shots about " CFS/ME " in the UK and,

despite the denials, it is believed that it is their

influence at the Medical Research Council (MRC) that

has resulted in the MRC's categorisation of " CFS/ME "

as a mental disorder and in the MRC's repeated

refusal of funding for biomedical research. It is the

case that, since 2002, approximately 91% of the

MRC's total grant spend on " CFS/ME " has gone on

Wessely School trials of behavioural interventions

and the MRC has refused no less than 33 biomedical

grant applications for ME/CFS.

The approach in the US is radically different.

Recruitment is currently taking place for participants

in clinical trials that will look for specific sets of

proteins in the cerebrospinal fluid (CSF) of ME/CFS

patients. The study sponsors are town

University / National Institute of Environmental

Health Services (NIEHS) http://tinyurl.com/8k4nfq

The investigators have already shown (in a previous

similar study) significant changes in proteins in the

CSF which the investigators believe may be due to

the fundamental pathology of ME/CFS.

The official title of the study is " Study Looking for

Unique Set of Proteins in Cerebrospinal Fluid, which

are believed to be found in Chronic Fatigue Syndrome

Participants but not in Healthy Controls " . The

investigators believe that these proteins (which are

not seen in other disorders or in healthy controls)

may identify the disease and define its mechanism.

The investigators note that increased cerebrospinal

fluid pressure may be related to symptoms including

headache, sleep problems, light-headedness,

increased pain, excessive fatigue with even minimal

work, and memory problems.

The detailed description states: " Neurological

dysfunction is a key component of the clinical

expression and case designation of (ME)CFS. If

the central nervous system is involved, then

evidence will be present in the cerebrospinal fluid.

Distinct patterns of proteins will be present in

(ME)CFS compared to health control subjects.

Other testing would include assessment of lung

capacity and scoring of shortness of breathing

testing (pulmonary function testing / PFT) " .

Secondary outcome measures will look at differences

in blood tests; at differences in blood pressure and

heart rate in response to exercise, and at sensory

nerve testing to determine the role(s) of altered

nerve and brain function in ME/CFS. Skin tests for

allergy will also be carried out.

The study is comprehensively placed in numerous

topic categories which include gastrointestinal

diseases, musculoskeletal diseases, neuromuscular

diseases, multiple chemical sensitivity, central

nervous system diseases, rheumatic diseases,

myalgic encephalomyelitis, and virus diseases.

Additional relevant MeSH terms are listed as

pathological processes / immune system diseases

and Environmental Illness.

In the UK, the NICE Guideline which forbids such

investigations will become legally enforceable in

2009.