Worldwide PETITION to co-sign LETTER .......

[Guest guest]

PETITION to co-sign LETTER, " After PACE, a firm foundation for M.E. as a

discrete illness (19 March 2011)

PERMISSION TO FORWARD AND RE POST ANYWHERE FOR MAXIMUM IMPACT.

Short cut link directly to Petition - http://tinyurl.com/68asese

I have written a letter in response to the PACE trial, in particular, with some

comments about the way it and the whole catalogue of research, using the

variable hybrid CFS/ME criteria, make it untrustworthy. I suggest new

foundations for research, using a probability index of M.E. that is being

developed to identify M.E. as a discrete illness, with an underlying physical

cause, dissociated from the polluting CFS/ME.

Letters.

Headline reporting, around the world, of the results and conclusions of the PACE

trial for M.E.(White et al., Lancet, 18 February 2011), sometimes endorsed with

supportive comments on inside pages, including letters to editors from groups

purporting to represent M.E. (Myalgic Encephalomyelitis) give the impression

that there is universal accord. Nothing could be further from the truth; it has

caused the biggest rift ever amongst people affected by M.E.

In the interests of scrupulous fairness, we seek the same space and prominence

to present almost diametrically opposed views that people with M.E. should not

take Cognitive Behaviour Therapy (CBT), do Graded Exercise therapy (GET) or

avoid common sense pacing. Our advice is based on all research evidence to date

- astonishingly, including that of the same people who support PACE and advocate

referrals to clinics which offer a mix of only these two treatments - and, most

importantly, hard experience of M.E. sufferers, for whom they have not been

effective and made a majority worse, some irreversibly.

PACE exemplifies everything that is rotten in the field of M.E. research -

including, flawed experimental design, polluted data set and lack of objectivity

of investigators - that shakes the whole catalogue of research, which uses the

artificially constructed, Chronic Fatigue Syndrome hybrid CFSME, Studies are not

comparing like with like and, most often, there were very few, if any, people

with M.E. included in the study, yet the conclusions are applied to them.

Ours is not the destructive act of one demolishing a building and walking away,

leaving a pile of rubble. Rather, it is a constructive approach, laying solid

foundations for trustworthy research to be built upon, which may suggest

treatments towards recovery, in which faith could be placed by practitioners and

patients alike. The keystone is a probability index of M.E. as a discrete

illness, which is being developed to be used as a research tool and for

establishing a diagnostic test. This probability index may be continuously

refined but, even in its most rudimentary form, it would be superior to all

existing criteria for identifying cardinal symptoms required to be present for

M.E. and, radically, it banishes " fatigue " both alone and when sandwiched

between " chronic " and " syndrome. " Henceforth, the M.E. sample in any research

could not be polluted by people having conditions bundled in the collective

diagnostic group CFS, from which M.E. would now be excluded.

In the meantime, we call upon primary doctors not to refer M.E. patients to

clinics for CBT or GET and all healthcare professionals not to act upon these

treatment recommendations for fear of breaching a basic principle of the

Hippocratic Oath, " First, do no harm " and for people speaking on behalf of

organisations, who support PACE and its ways, to remove the M.E. part from their

name, or consider a change of employment.

Yours sincerely

drjohngreensmith@...

Dr H Greensmith

Founder, ME Free For All.org

+

Co-signatories as named in the petition

" Co-sign the letter: After PACE, a firm foundation for M.E. as a discrete

illness (19 March 2011) " --- Short link http://tinyurl.com/68asese

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If you wish to co-sign this letter please sign the petition here

Short link http://tinyurl.com/68asese

http://www.thepetitionsite.com/1/co-...19-march-2011/

May I suggest that you sign your name; whether you are a group officer, M.E.

sufferer, carer, doctor, researcher etc.; the name of the publication (s) you

would like the letter to appear and, if you are able, a considered, intelligent,

comment based on scientific evidence or experience that will give M.E. research

the dignity and integrity it deserves.

Best wishes

drjohngreensmith@...

Dr H Greensmith

ME Free For All.org