Action for ME censoring YouTube comments

ME patient organisation, Action for ME (AfME), are censoring comments left on YouTube about the forthcoming Royal Society of Medicine’s “Chronic Fatigue Syndrome” Conference.

AfME has placed three videos on YouTube launching “The Ultimate Pillow Campaign”

Go to YouTube: Ultimate Pillow Fight

One AfME member had this to say about AfME’s Ultimate Pillow Fight fundraising campaign:

creamywhite (13 seconds ago)

I cannot be the only ME suffer (and AfME member) who finds this video and fundraising event insulting.

Has AfME no compassion for its members?

Those of us who suffer from debilitating exhaustion and malaise and who can hardly raise our arms to brush teeth do not welcome these images of those who should know better ponsing around with pillows.

AfME, please put your money and energy into the real issues surrounding ME.

This morning I posted two comments on YouTube:

MEagenda (4 minutes ago)

That’s Sir Peter Spencer, AfME’s new CEO, being a jolly good sport and getting thumped in his office. On 28 April, Sir Peter will be one of the speakers at the Royal Society of Medicine’s Conference on “Chronic Fatigue Syndrome”. This  conference is for health professionals only. There is a very strong psychiatric/psychological bias to the presentations at this meeting and many ME sufferers and their carers are very unhappy about the line-up of speakers: so is the ME  Association.

MEagenda (8 seconds ago)

Speakers at the RSM CFS conference include Professors Simon Wessely, Peter D White, Matthew Hotopf, Rona Moss Morris and Dr Anthony Cleare; session chairs include Professor Mansel Aylward, Unum Provident Centre for Disability. There are no seats for members of the public. A demonstration is being planned for the afternoon of 28 April outside the RSM building; find out more about the demo and the conference and read the MEA and AfME’s position statements on the Read ME UK Events WordPress blog.

And in response to Heather Walker’s (AfME) comment:

Money from a private fundraising dinner raised money for a research conference in 2006 and the charity plans to fund up to three pilot projects this year which came out of that.

I posted:

MEagenda (5 seconds ago)

In order to establish just who participated in the AfME/MRC Research Summit, held in 2006, it was necessary to apply to the MRC under FOI. AfME has also been unwilling to provide a list of the members and researchers who make up the  Steering and Management Groups responsible for the spending of the £500,000 Big Lottery Fund grant for the six National ME Observatory projects. Why is AfME not prepared to be transparent and accountable to their membership, to the ME community and to the public?

All three comments were promptly removed by AfME and my YouTube User name blocked from leaving further comments.

Not such good sports after all?

Update: During the course of the day, AfME has removed further comments and disabled the comment facility altogether on all three of its Ultimate Pillow Fight videos.



Royal Society of Medicine | Monday 28th April 2008
Wimpole Street and Henrietta Street | 1pm to 6pm
Enquiries to organiser Gus Ryan
Information here and here


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