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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, 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 to the person doing the
'The Zombie Evacuation Race - ‘Only the fittest will survive’
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 then substantially, with greater interest in raisng money for the MEA by means that do not give relentlessly damaging messages about ME to the public.
Reply:
As I have already stated, the number of posts that have been deleted on MEA Facebook in relation to this discussion is very small in number
They have only been deleted because they contained comments that were aggressive or offensive towards another person who was taking part in the discussion
If you go through the discussions on both the current topics - the editorial on exercise from our Chairman and the one on the sponsored walk and mobility scooter ride - you will see plenty of critical comments
As with any heated internet discussion, it is difficult to assess the overall public opinion
The number of people liking the editorial on exercise by Neil Riley (=99) far exceeds the number of critical comments, and the number of likes for the item on the walk also exceeds the number of people making critical comments
I would also point out that we have just had a very successful Xmas research fundraising campaign to continue the work of the ME Biobank at the Royal Free Hospital in 2015 that we have been funding for the past two years - almost £30,000 was raised in just over 4 days!
MEA membership is rising compared to last year and judging by the number of people who contact us for support, advice and information each year (around 4,000 to ME Connect via phone or email) a huge number of people do appreciate what we are doing in relation to benefits, education, information, personal support and research >>
http://www.meassociation.org.uk/201...ociation-do-and-why-our-august-2014-snapshot/
We are listening to what people are saying and trustees are discussing the critical comments - which is why our fundraiser has started a separate discussion on what sort of fundraising events people with ME/CFS want to see taking place, or not taking pace
But, as I've already asked the critics, which other research funding charities in the UK refuse to accept donations from people who are doing a physical activity challenge?
Because I am not aware of any that do refuse to accept such donations
MEA Facebook discussion:
https://www.facebook.com/pages/ME-Association/171411469583186