Monday, January 7, 2008

Recommended research

Tom Kindlon  

Not for the first time [1-2], a CDC-funded research team produces a paper on
CFS which has a title which mentions a lack of an association with a
particular infection[3].

It would be good if some of the CDC's (not inconsiderable) CFS research
budget could be used to investigate enteroviruses in CFS. Earlier this year
a study involving enteroviruses[4] resulted in much excitement in the media
on the subject. It found, in a sample of CFS patients who had
gastrointestinal symptoms, that 135/165 (82%) biopsies stained positive for
VP1 within parietal cells, whereas 7/34 (20%) of the controls stained
positive (p=<0.001). Earlier studies have demonstrated circulating antigen
of enterovirus, raised antibody titres and viral RNA in the blood and muscle
biopsy specimens of patients with CFS[4-8]. John Chia does recognize that
other infections could be playing a part in some CFS cases but enteroviruses
are by far the most common infection he is finding in his clinic in

[1] Gelman JH, Unger ER, Mawle AC, Nisenbaum R, Reeves WC: Chronic fatigue
syndrome is not associated with expression of endogenous retroviral p15E.
Molec Diagnosis 2000, 5:155-156.

[2] Vernon SD, Shukla S, Reeves WC: Absence of Mycoplasma species DNA in
chronic fatigue syndrome. J Med Microbiol 2003, 52:1027-1028.

[3] Jones JF, Kulkarni PS, Butera ST, Reeves WC: GB virus-C--a virus without
a disease: we cannot give it chronic fatigue syndrome. Jones JF, Kulkarni
PS, Butera ST, Reeves WC. BMC Infect Dis 2005, 5:78

[4] Yousef GE, Mann GF, Smith DF, et al: Chronic enterovirus infection in
patients with postviral fatigue syndrome. Lancet 1988;1:146-7.

[5] Cunningham L, Bowles NE, Lane RJM, et al: Persistence of enteroviral RNA
in chronic fatigue syndrome is associated with abnormal production of equal
amounts of positive and negative strands of enteroviral RNA. J Gen Virol

[6] Galbraith DN, Nairn C, Clements GB: Phylogenetic analysis of short
enteroviral sequences from patients with chronic fatigue syndrome. J Gen
Virol 1995;76:1701-7.

[7] Lane RJ, Soteriou BA, Zhang H, et al: Enterovirus related metabolic
myopathy: a postviral fatigue syndrome. J Neurol Neurosurg Psychiatry

[8] Douche-Aourik F, Berlier W, Fe´asson L, et al: Detection of enterovirus
to human skeletal muscle from patients with chronic inflammatory muscle
disease or fibromyalgia and healthy subjects. J Med Virol 2003;71:540-7.

[9] Chia JK, Chia A: Diverse etiologies for the chronic fatigue syndrome.
Clin Infect Dis 2003;36:671-2.

Competing interests

Assistant Chairperson, Irish ME/CFS Association - for Information, Support &
Research (Unpaid position)

[I don't like the way the CDC have been using such "outspoken" titles to
their research papers so sent this in to "GB virus-C – a virus without a
disease: We cannot give it chronic fatigue syndrome".  There could of course
be disadvantages to them looking at enteroviruses if they didn't do it
properly and claimed there was none there. Of course if they were to use the
"empirical" definition which covers 2.54% of adults aged 18 to 59, they're
not going to find much of anything. :-( But I don't like them giving the
impression that there's no evidence out there for infections playing a part
in at least some cases. Tom]

* * *

My CFS started with an enterovirus (stomach virus), i.e., repeated bathroom visits.

Laura Hillenbrand's started with what was diagnosed as "food poisoning", which looks a lot like a stomach virus.

Dr. Bruno thinks CFS is an enterovirus.  He notes that there are six dozen known enteroviruses related to polio, but the polio vaccine protects against only three of them.

As Tom notes, there has already been some research that has found enteroviruses in many people with CFS.  But where's the follow-up research?

Unless, as has been suggested before by CFS researchers, "CDC doesn't want to find anything."  Finding an as-yet-unknown virus in CFS would require them to admit their previous statements about it being caused by "depression" and "stress" and general emotional-basket-case-ery were wrong.  It's been pointed out by several activists that the CDC website's information on CFS says "these tests are unnecessary" ... "these tests" being the ones that are known to produce abnormal results in patients with CFS.  Clearly, they not only don't want to find anything themselves, they don't want anyone else to find proof that CFSpatients are really, biologically sick.

Which brings us back to the original reason for changing the name Myalgic Encephalomyelitis to CFS:

Based on documents received via a FOIA request, "Hillary J. Johnson, author of Osler's Web, commented that the name "Chronic Fatigue Syndrome" was selected "by a small group of politically motivated and/or poorly informed scientists and doctors who were vastly more concerned about costs to insurance companies and the Social Security Administration than about public health. Their deliberate intention – based on the correspondence they exchanged over a period of months – was to obfuscate the nature of the disease by placing it in the realm of the psychiatric rather than the organic."

Most moderate-to-severe CFS patients have been denied Disability benefits. (40% of CFS patients studied by a Chicago group were completely disabled by the disease. Nearly all of these said they had been denied Social Security benefits.)  If half a million or more people were to get those tests, objective proof that they are not faking, and re-apply for SSDI with the new evidence, the cost to the system would be immense.  (At this writing, they owe me $100,000 in back benefits if/when my claim is approved.  Multiply that by hundreds of thousands of other patients, and the cost would be staggering.  No wonder they don't want to pay benefits for decades to CFS patients!  It isn't that we don't deserve benefits, but that paying 25-30-35 years of benefits to a million patients would cost a bundle.)


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