The Barbara Windsor Effect, Letter, British Medical Journal, 18 June 2012

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Am still in horrible relapse of M.E. (NOT CFS or any other name!!)

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Re: Time to end the distinction between mental and neurological

illnesses, British Medical Journal, 18 June 2012

Since Chronic Fatigue Syndrome (CFS) was created, as a synonym for M.E.

(Myalgic Encephalomyelitis), in 1988 (Holmes et al.) and for as long as

it is taken to be exactly the same as M.E., or as a subgroup, either

CFS/ME, or ME/CFS, it will act as a smokescreen for a more accurate

diagnosis of M.E. and, by extension of the logic, other illnesses as

well. In the plainest terms, CFS is making it more likely to select

people who do not have M.E.; who are most likely to be in recovery from

some other illness and it is hardly likely at all to include those who

do have a discrete illness best described as Myalgic Encephalomyelitis

and not any other illness, mostly because they would be too ill to be

selected for and take part in, the research trials.

I have, previously, used the example of different types fruit to

represent the collective set CFS and shown that any conclusions drawn

from research trials with apples, oranges, bananas, grapes etc. should

not be applied to mangoes, if not a single mango was in the sample

tested. Yet, this is what happens, when recommendations of treatments,

such as Cognitive Behaviour Therapy (CBT) and Graded Exercise Therapy

(GET), for subjects who do not have M.E. and are probably recovering

from some other illness, possibly a virus, are applied to M.E. sufferers

and the results are at least ineffective and in many cases harmful.

Now, I have a real-life celebrity example to illustrate why Chronic

Fatigue Syndrome should not be used as a diagnosis for M.E. and, I would

suggest, at all. It is the case of the actress Barbara Windsor, best

known for her roles in the " Carry on " films and, later, in the soap

opera " EastEnders. " It was during her time as a lead actress in

" EastEnders " that Barbara became ill in 2003. Press photos at the time

showed a very ill Barbara, who might have been thought by some to have

all the hallmarks of M.E. We now know that she had Epstein-Barr virus,

which causes Glandular Fever and is a common precursor to M.E. She took

more than two years to recover but she became sufficiently well to

rejoin the cast of " EastEnders " and, although she has now retired from

that show, she is still a working actress and has not relapsed. We know

all this because Barbara Windsor is a celebrity and this information is

in the public domain. But an unknown, plain, Miss Windsor, of the sort

we never hear about, might not have been diagnosed with Epstein-Barr

virus but, instead, Chronic Fatigue Syndrome, since she ticks all the

boxes for the diagnostic criteria for it. Now, if CFS is said the be

exactly the same as M.E. (as some patient support groups assert), it

could be said that Barbara Windsor had M.E., which we know is not

correct. If our (non celebrity) patient, who is actually taking a longer

than usually expected time to recover from Glandular Fever (or it could

be some other, such as Chicken Pox, Shingles, or a flu-like virus),

keeps returning to the GP for, say. six months or so and all tests show

negative, they may be invited to take part in research or treatment

trials for the loose CFS/ME subject pool. The results will then be,

erroneously, applied to people with M.E. who (just like the mangoes in

the fruit trial) were not in the sample tested and who are a very

different set of patients. We don't know how large a problem this is

because it could apply to such a diversity of patients, with a wide

range of illnesses and we don't know invalid or unreliable the research

is because we don't know how many who took part recovered, as celebrity

Barbara Windsor did, because the information isn't publicly known, nor

are follow ups made on those who were in the research trials and who

recovered.

It is clear that there is no set of diagnostic criteria sufficiently

reliable to separate M.E. patients from others with illnesses that have

the nebulous " fatigue " symptom, whether as a single term, or sandwiched

between " chronic " and " syndrome " . In the absence of a diagnostic test,

such as a blood test, or scan. I recommend tightening some of the

elements of current diagnostic criteria to screen for a profile of

patients, who are more likely to have M.E. and not to have some other

illness - probably from which they are recovering - that is not M.E. My

first suggestion is that the chronicity of symptoms, from onset, or from

the last time that a patient tried unsuccessfully to return to work,

school, or a normal lifestyle be increased from 6 months to 3 years, to

allow for the length of time that Barbara and unknown others, take to

recover. There should also be the requirement of the cardinal symptoms

of Post Exertion Relapse, that is an exceptionally slow reaction of

24-48 hours, after even minuscule effort in M.E. sufferers, which is

usually not witnessed and also a kind of dizziness, either POTS

(Postural Orthostatic Tachycardia Syndrome) or Orthostatic Intolerance,

which is almost always in M.E. patients but not usually CFS but I

believe the time increase from 6 months to 3 years alone, would rule out

most of the Barbara Windsor effect, which is causing misdiagnosis in

M.E. and probably other illnesses too, for the same reasons. It would be

instructive to see how many of the subjects, included in CFS/ME subject

samples, on which findings applied to M.E. sufferers have been based,

would not have been eligible if only this time factor is considered. I

hypothesise that we are dealing with very different sets of patients

indeed and such contamination of subject samples is hampering progress

for all.

Yours sincerely

Dr H Greensmith

ME Community Trust.org