Sunday, February 26, 2012

Keeping a symptom diary

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Letters to the Editor.

Many people affected by the illness M.E. (Myalgic Encephalomyelitis)
have been keeping a diary for decades. It is an ideal way to record
symptoms, experiences and feelings, as they happen and look back to see
if anything can be learned from it. But individual M.E. sufferers are
losing the best opportunity there is to compare all their observations
with fellow patients, from all over the world, simply by not sharing
them, as they could so easily do.

To achieve this connection, for everyone's benefit, the M.E. Community
Trust.org is inviting M.E. sufferers, to keep a diary in a uniform way,
in order to attempt to better understand the cause, onset, progression
and possible outcomes, using the benefit of a much bigger population for
statistical analysis and mutual support. Safety and confidentiality is
insured by each diarist, assuming an alias and saving data to their own
computers to avoid any hacking or personal abuse.

A more thoroughly explanatory press briefing has been sent to every
national and local newspaper in this country,in the hope that features
editors and health journalists will want to give it the further coverage
it deserves. In addition, we have "ambassadors" in every country in the
world - including Europe, USA&  Canada, Australasia, the Middle East,
Asia and Africa - who are publicising it in the same manner. It also
appears on our companion Facebook page, My M.E. Diary 2012 Trial -
http://www.facebook.com/pages/My-ME-Diary-2012-Trial/186206768135247

As a prelude to potentially the most ambitious longitudinal study of
M.E., on every continent, M.E. sufferers are invited to send an e-mail
from their assumed name to mymediary@mecommunitytrust.org with "My M.E.
Diary 2012 Trial" in the subject line today, or lose one of the best
opportunities ever for combined co-operative strength. Think of it this
way: If you don't do it, why should you expect anyone else to.

Everyone who does makes the collective M.E. voice more audible and this
awful illness more visible.

Yours sincerely
drjohngreensmith@mecommunitytrust. org
Dr John H Greensmith
ME Community Trust. org

Some countries still without ambassadors to distribute letters and press
briefings for this project.
Some M.E. support organisations conspicuous by absence of support.
Two few diarists signed up.
Please don't lose a good chance like this by leaving it to others -- who
may be doing the same!

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