Tuesday, December 13, 2011

The problem with "CFS" research....

PERMISSION TO FORWARD AND RE-POST ON OTHER FORUMS, SOCIAL NETWORKING
SITES AND USE IN NEWSLETTERS. PLEASE RE-TWEET ON TWITTER.

The continued assertion of a relatively small but very influential
school of researchers, practitioners and government advisers, including
Dr Esther Crawley (BBC Radio 4, "Today" programme, 13 December 2011)
that M.E. (Myalgic Encephalomyelitis) and CFS (Chronic Fatigue Syndrome)
are the same is impeding progress not only for M.E. sufferers but
patients with all other conditions bundled within this indiscriminate
diagnostic term, which was created in, and has muddied the waters since
1988 (Holmes et al.). Researchers should be continually refining the
sample they are studying and eliminating contaminating variables. In
this field, they have been driving in the opposite direction.

An analogy may help those not so familiar with experimental design and
terminology: Champagne is a sparkling wine that comes ONLY from that
region of France. If you were a wine expert, whether grower, taster, or
enthusiastic amateur, you may genuinely contest whether the Champagne
drink is the best, defined by taste, cost or some other criteria.
Indeed, Champagne aficionados may concede that yours is both a better
drink and value for money but, by definition, it is NOT Champagne
(unless you start moving the goalposts). If you now decide to call it
Bubbly/Champagne, you can include other bubbly or fizzy drinks, perhaps
some that are non alcoholic, which takes us further away from true
Champagne, e.g. Champagne/Cava, cola, lemonade, soda pop, fizzy water;
perhaps some relax the definition of what is fizzy and that lets even
more beverages into the sample. Now, you do your test(s) and apply your
conclusions to Champagne, when there wasn't a single sample in your test
cases.
Incidentally, if M.E. is only one Chronic Fatigue Syndrome
represented by CFS/ME what are the others? I have never seen another
condition attached obliquely to CFS. Treating them the same also
distorts the statistics. There will obviously be many more people with
CFS than M.E., so any figures given about M.E. deduced from CFS, will be
unreliable (Study warns of higher ME rates among pupils, Guardian, 12
December 2011). This is what CFS/ME researchers are doing and not only
preferring it but monopolising it.

Fortunately, there are independent researchers in all parts of the world
who hold this different view, that M.E. is a discrete illness of
physiological origin, which should be considered quite separately from
CFS: research commissioned by NHS Scotland, leads the way in the UK and
a paper co-authored by 26 International specialists (Carruthers et al.
August 2011), which this Research Psychologist and veteran M.E. sufferer
believes not only renders obsolete all previous criteria, including the
NICE guidelines 2007 that are still being used by the CFS/ME School but
may be even further refined in future research (just as in our analogy,
we may examine samples only from one geographical area of Champagne, or
from particular vineyards). Unfortunately, they are not getting the same
publicity or funding for work which is more likely to bring a better
understanding of this illness and perhaps one day, effective treatment.
Things will not change until M.E. researchers remove the CFS pollution.

Yours sincerely
drjohngreensmith@mecommunitytrust.org
Dr John H Greensmith
ME Community Trust.org
* * *
Dr. John is referring to the innumerable studies in which the patient selection criteria allows inclusion of those with depression and other psychiatric problems.  Studies on True CFS (i.e., ME) show that anti-depressants are useless, yet innumerable studies on polluted patient pools report cures with anti-depressants or pills+counseling.  I can tell you that a long talk with a good friend who is a psych professional certainly cheers me up, but it doesn't bring down the fever, heal the rash, or do anything for any of those other objective symptoms that are present in ME/CFS but not in depression.
 
If someone tells you (as one of my quacks did) that there are no objective symptoms of CFS, refer them to this list: Life as we know it: CFS/Fibro Symptom Checklist  There are plenty of objective symptoms, if you know what to look for, but most doctors, sadly, don't know what to look for other than fatigue.
 
 

No comments: