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@charles shepherd and All
People can read the MEA FB thread that you have linked,
but they will not be able to see the many posts that object to the physical exertion fundraising for the MEA, because the MEA Mods have deleted the most eloquent of those posts.
In fact it seems that certain MEA FB members have had several if not all of their posts deleted. So the MEA FB thread you linked to does not reflect the discussion that took place, and so is less than useful, as it is now one sided, having been censored
There was nothing offensive or abusive in the posts removed by the MEA mods; the posts were from ordinary ME sufferers expressing their great concern that the MEA is defending inappropriate fundraising activities, yet again.
The threads were read by a larger number of people than just those who posted on the threads. There was none of the "aggression" that you claim. But there were ordinary people with ME left very dismayed by the attitude and actions of the MEA in silencing objections on your FB page to the MEA supporting inappropriate fundraising activies.
There were two threads on the subject this week (on the MEA Facebook), in which the vast majority were not in favour of the MEA accepting funds raised in such a manner (until the MEA started deleting posts). Its not a small number of people who are very concerned about the physical exertion fundraising, not a "small group who don't like the MEA" as you keep stating, and its not the same people year after year.
Every time the MEA accepts the physical exertion/endurance fundraising activities by people with a CFS diagnosis, the MEA alienates large numbers of patients who think the MEA are giving out a wrong and very damaging message to the public. What is also offensive is the way the MEA then seeks to put the people who are upset by such activities in the wrong, as you have been doing on the FB page in the last week.
Dismissing genuine concerns as "angry and vocal" or "agggresive" is totally wrong. They were not "angry" or "aggressive". But I expect the patients whose posts were removed by the MEA mods, patients who are now being defamed by the MEA, are now pretty upset by the MEA attitude and actions.
The MEA is very polite and warm to the people doing the physical exertion fundraising, as you were on your Facebook to the person doing the outdoor rugged
'The Zombie Evacuation Race - ‘Only the fittest will survive’ http://zombieevacuation.com/
But the MEA is dismissive (and has been quite rude also) towards the sick people who are concerned (even distressed) about the damaging publicity from such exploits.
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Why the MEA places the rights of a few individuals who want to prove themselves by doing extreme physical activities, above the needs of the majority of patients whose lives and health are further devastated by disbelief in their physical infirmity, is a continuing puzzle.
If the MEA wants the money that badly, why don't you drop the physical exertion fundraising by 'CFS' patients, and instead campaign for the adoption of the CCC/ICC in Britian (as in the '50 Experts letter to the US HHS)?
Your membership would increase substantially, with greater interest in raisng money for the MEA by means that do not give relentlessly damaging messages about ME to the public.
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