One of the major problems which patients face is the 'incomplete'
information available on the internet. For example, after reading the
Oxford criteria for CFS, I mentioned to someone that they might exclude
people with ME by virtue of the many neurological symptoms associated with
the disease. This was included in a lay article and unfortunately, has
been uncritically repeated in online publications ever since. The truth is
that we don't know. Those who use the Oxford criteria generally do not
recognise ME as a neurological disease (G 93.3) and in my experience,
symptoms such as vertigo and blurred vision tend to be ignored, considered
as separate, or classified as a sign of stress. I therefore suspect that
the proportion of ME patients in studies using the Oxford and CDC criteria
is probably small simply because the illness is less common than CFS (.1%
versus 2.6%)[1].
The FINE trial also used the 1994 CDC criteria. These changed the
concept of CFS, from a disorder similar to ME (described by Ramsay) to one
more closely related to neurasthenia [1,2]. The CDC criteria do not
exclude the severely ill; researchers do. As for the Canadian criteria,
there has only been one study examining the selected population and the
results revealed a higher prevalence of co-morbid psychiatric disorders
compared to a group with ME. It is unclear whether this is due to the
large number of qualifying symptoms (over 90), or because of a flaw in the
criteria used to diagnose ME.
Writers on the internet sometimes support the Canadian criteria
because of the recommendation to conduct certain tests. They then
interpret abnormalities in natural killer cell (NK) activity and other
results as evidence of 'physical disease', unaware that these findings are
not unique to CFS and that abnormal NK cell cytotoxicity is also
associated with stress [3]. And just as some psychologists do not believe
patients with ME, some patients do not believe psychologists with ME.
While unrefereed articles on the net have led to confusion, so have
articles on CFS in our best known journals. Indeed, I would go so far as
to suggest that the online articles have flourished largely because of the
narrow range of opinions on CFS published in the medical literature [4].
These have disempowered doctors, leaving most unaware of the growing
evidence for a subset of patients with ongoing infection and neurological
disease. It's a lose-lose situation for all and that includes the tax
payers who are spending millions of pounds on suboptimal treatment.
2. Farmer A, Jones I, Hillier J, Llewelyn M, Borysiewicz L, Smith A.
(1995) Neurasthenia revisited: ICD-10 and DSM-III-R psychiatric syndromes
in chronic fatigue patients and comparison subjects. Br J Psychiatry 167;
503-6.
3. Webster Marketon JI, Glaser R. (2008) Stress hormones and immune
function. Cellular Immunol 252; 16-26.
4. Goudsmit E, Stouten B. (2004) Chronic fatigue syndrome: editorial
bias in the British Medical Journal. Journal of Chronic Fatigue Syndrome
12; 4: 47-59. http://freespace.virgin.net/david.axford/JCFS.pdf
Rapid Response:
The problem of information on the internet
I write this as a patient with ME.
One of the major problems which patients face is the 'incomplete'
information available on the internet. For example, after reading the
Oxford criteria for CFS, I mentioned to someone that they might exclude
people with ME by virtue of the many neurological symptoms associated with
the disease. This was included in a lay article and unfortunately, has
been uncritically repeated in online publications ever since. The truth is
that we don't know. Those who use the Oxford criteria generally do not
recognise ME as a neurological disease (G 93.3) and in my experience,
symptoms such as vertigo and blurred vision tend to be ignored, considered
as separate, or classified as a sign of stress. I therefore suspect that
the proportion of ME patients in studies using the Oxford and CDC criteria
is probably small simply because the illness is less common than CFS (.1%
versus 2.6%)[1].
The FINE trial also used the 1994 CDC criteria. These changed the
concept of CFS, from a disorder similar to ME (described by Ramsay) to one
more closely related to neurasthenia [1,2]. The CDC criteria do not
exclude the severely ill; researchers do. As for the Canadian criteria,
there has only been one study examining the selected population and the
results revealed a higher prevalence of co-morbid psychiatric disorders
compared to a group with ME. It is unclear whether this is due to the
large number of qualifying symptoms (over 90), or because of a flaw in the
criteria used to diagnose ME.
Writers on the internet sometimes support the Canadian criteria
because of the recommendation to conduct certain tests. They then
interpret abnormalities in natural killer cell (NK) activity and other
results as evidence of 'physical disease', unaware that these findings are
not unique to CFS and that abnormal NK cell cytotoxicity is also
associated with stress [3]. And just as some psychologists do not believe
patients with ME, some patients do not believe psychologists with ME.
While unrefereed articles on the net have led to confusion, so have
articles on CFS in our best known journals. Indeed, I would go so far as
to suggest that the online articles have flourished largely because of the
narrow range of opinions on CFS published in the medical literature [4].
These have disempowered doctors, leaving most unaware of the growing
evidence for a subset of patients with ongoing infection and neurological
disease. It's a lose-lose situation for all and that includes the tax
payers who are spending millions of pounds on suboptimal treatment.
1. Goudsmit EM, Shepherd C, Dancey CP,Howes, S. (2009) ME: Chronic
fatigue syndrome or a distinct clinical entity? Health Psych Update 18;1:
26-33.
http://www.bpsshop.org.uk/Health-Psychology-Update-Vol-18-No-1-2009-
P797.aspx
2. Farmer A, Jones I, Hillier J, Llewelyn M, Borysiewicz L, Smith A.
(1995) Neurasthenia revisited: ICD-10 and DSM-III-R psychiatric syndromes
in chronic fatigue patients and comparison subjects. Br J Psychiatry 167;
503-6.
3. Webster Marketon JI, Glaser R. (2008) Stress hormones and immune
function. Cellular Immunol 252; 16-26.
4. Goudsmit E, Stouten B. (2004) Chronic fatigue syndrome: editorial
bias in the British Medical Journal. Journal of Chronic Fatigue Syndrome
12; 4: 47-59.
http://freespace.virgin.net/david.axford/JCFS.pdf
Competing interests:
None declared
Competing interests: No competing interests