Ultimate Pillow Fight- A Response

AFME have posted a video on YouTube about their fund raising event The Ultimate Pillow Fight. I noticed they have disabled comments and ratings on it. Looking at the responses they left on it, it would appear they had some negative comments about the event and about their involvement with the psychiatricly based RSM conference on CFS on 28th April. I thought that it is a shame that AFME fear a debate about these issues so I made this video.

Please feel free to make comments, whether written or video. I am hoping that this video will feature alongside AFME's video in the YouTube listings. Please stick to facts and be reasonable.

My intention is not to damage AFME, but to wake them up! They claim to represent people with ME but their involvement with the PACE trials and the RSM conference are only helping to make life for people with ME worse. AFME have huge media power, and this is part of the problem. Their atendance at the meeting only gives it credibility in the eyes of the media. Sir Peter Spencer defends AFME involvement by saying " It is better to hace a balanced debate than for differing factions to exist in parallel worlds, where they do not engage in dialogue or work together to increase our understanding of this debilitaing illness." (Interaction Spring 2008. I have two problems with this statement, firstly it implies that all other ME charities are unbalanced and a bit weird where as AFME is balanced and rational. Secondly there is no balanced debate! The psychiatrists set the agenda and AFME goes along with it.

If AFME stopped supporting men like Prof Simon Wesseley and Prof Peter White, and started to stand up for people with ME, they may get the government to finally listen to people with ME and start funding biomedical research.

Interestingly Invest In ME have a conference about the latest research in to the biomedical causes of ME. AFME say that they support biomedical research and yet no one from AFME has ever attended one of these conferences.

It's about time AFME stopped trying to promote itself and start to stand up for those they are supposed to represent.

Search The internet and help raise money for Invest In ME http://charities.everyclick.com/info.xq?id=275467

Category:

News & Politics

Tags:

• afme
• ultimate
• pillow
• fight
• action
• for
• me
• me/cfs
• chronic
• fatigue
• syndrome

[deadgirldreaming]

Well done! Finding ways round the idiots and censorship is fundemental...

Just you flashing those Pelham Blondes... well...

AfMe is membership organaisation... yet no AGM of members since 1996 - this is against their legal obligation under their governing document.

Also - the RSM confernce was set up by some of those who are speaking... anyone found out who put that particularly oily wheel into motion yet?

And having a Unum rep' there - gob-smacking.

Follow the money!

[kaazoom]

Interestingly the current Dean of the RSM is a neurologist based at The National Hospital For Neurology, Queen Square London. Both Simon Wessely and Trudy Chaulder started to use CBT and GET on ME patients when based there. It was made quite plain to me by one of the consultants at the National that they view ME ase a psychiatric illness! It makes you wonder doesn't it? Is this the view of the Dean of the RSM?

[mercurialism]

Good on you! Its funny the politics of ME are exactly the same as the politics of anything else where money/power are involved. The same tactics of using shill groups and appointing them as the only official representatives, then only dealing only with those representatives since they are "official". Circulatory logic if ever there was. Sound familiar? (Hint: switch on the news and look at any conflict we are currently engaged in).

Afme do not represent our interests in any way shape or form.

[kaazoom]

I don't think that afme or those who run it are evil, just wrong and misguided. They are being used by the psychiatric lobby and their government & insurance industry bosses to give credibility their theories. AFME think they are bring about change by working with them but they are just being used. I'm told afme do some good things, such as helplines and practical advice to people with ME. The problem lies in their support of doctors who promote a psychosocial model.They set the agenda not afme.

[simonwesselysfanclub]

The path of the righteous man is beset on all sides by the iniquities of the selfish and the tyranny of evil men. Blessed is he who, in the name of charity and good will, shepherds the weak through the valley of the darkness. For he is truly his brother's keeper and the finder of lost children. And I will strike down upon thee with great vengeance and furious anger those who attempt to poison and destroy my brothers. And you will know I am the Lord when I lay my vengeance upon you.

-Pulp Fiction

[MEagenda]

was any external body or organisation not directly involved with the conference or a sponsor of the conference consulted by the RSM for suggestions for potential speakers, and if so please specify which bodies or organisations were approached and which speakers were identified as a result.

When the RSM has provided answers to these questions I shall post these on Read ME UK Events WordPress blog where info on the RSM CFS Conference and copies of ME charities' position statements can be found.

[jesusluvskeeter66]

Hi, surely I understand. 28 years I have been ill. You get dragged through the psychological trauma the medical community puts you through. It would be better if they were humble enough to just say, this truly is a difficult debilitating illness for than to protect their reputation & give a must diagnosis since it threatens there ego as doctors who feel they must diagnose or blame us if they have no biomarkers. With their diagnoses of mental conditions towards us who are so vulnerable. Ana

[DysautonomiaMD]

There is much to understand about the politics surrounding this subject. I just wish that society valued people with disabilities more...it is so hard for us to exist, plus have a family, plus keep our spirits up with YT friends (not a chore, but a place of serenity and understanding..., plus have a larger picture of the 'players'. I get the jist. We need to rely on helping ourselves, as you have so nobly done. Hats off to you! Fondly, Dr M

[luminescentfeeling]

A fantastic video - well done!

[maxinebasset]

Well said - how can the medical establishment continue to ignore the overwhelming evidence for biochemical involvement in most cases of ME and deny those afflicted freedom of speech?

[happydays4ME]

Thank you so mcuh for doing this video and giving us all the freedom of speech that afme have taken away from us. I also had my comments errased. Afme's trudie chalder colleague of archangel Wessely is featured in lumminesant feelings video (warning this will make you blood boil). i know how you were thinking paul that as a member you could become involved and make your voice heard. Hwever if no one gets a reply then voice your opinion by asking for a refund.less money/members less influence

[MEagenda]

Have you sent yours, in yet?

Just two posting days left for sending a postcard to the Dean of the Royal Society of Medicine.

Visit "Read ME UK Events" WordPress blog for updates, information on the RSM CFS Conference and address for the Postcard Campaign.

[MEagenda]

4] Through what process were potential speakers for this conference identified, that is: was the drawing up of a list of potential speakers for this specific conference the preserve of the CFS Planning Committee or did any external body or organisation with an interest in, or sponsorship status within the conference put forward suggestions for potential speakers, and if so, please specify which bodies or organisations and which speakers were identified as a result;

cont/

[MEagenda]

2] If externally, please specify which companies, bodies or organisations initiated the concept and/or have sponsorship status within this specific conference?

If internally, are any companies, bodies or organisations sponsoring this conference and who are these sponsors?

3] Through what process were members of the CFS Conference Planning Committee, other than RSM office holders and personnel, appointed?

cont/