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I am wondering: is there somewhere an illness actively researched but without any patients' advocacy?
If patients don't fight, will there be anybody else who will?
When it comes to say MS there is one main UK charity - with ME we have, what, six, seven? Why?
An MS Society that has used its funds to fund a CBT study by Chalder and Moss Morris?
A children and young person's charity (AYME) that is supportive of the SMILE Trial and has Dr Esther Crawley as its medical advisor.
Action for M.E., who kept the lid on the aims and objectives of Dr Richard Sykes' CISSD Project and the make-up of its workgroup, that was chaired by Michael Sharpe and Kurt Kroenke, about which virtually nothing was known until I and others started investigating and who twice changed its name on its logo to "Action for ME and Chronic fatigue" until it was forced by the Charity Commission and patient and advocate pressure to revert to its registered name and Charity Objectives and who until relatively recently, excluded its membership from attending AGMs and participating in a democratic trustee election process.
I could go on...
...the point being, that the policies and positions of a single patient organization may not reflect the views of its membership.
What are the six or seven main UK charities that you are thinking of Firestormm?
We have
Action for M.E.
ME Association
AYME (specifically for children and young people)
TYMES Trust (specifically for children and young people)
Invest in ME (run by a non elected committee, not a membership organization that is consulted on policy and position)
ME Research UK (a research organization, not a membership organization)
I am wondering: is there somewhere an illness actively researched but without any patients' advocacy?
If patients don't fight, will there be anybody else who will?
Those that do become involved in advocacy in the UK find themselves victims of the Wessley/White/Crawley etc smear campaign labelling them harassers of researchers (for daring to make FOI requests) snd even dangerous terrorists making death threats (no evidence of this has ever been produced, it is hearsay).
The TYMES trust document on the setting up of the Collaborative is one example of how misrepresenting us as harassing researchers is deliberately being used to put off any new biomedical researchers, so that the lucrative White/Crawley etc psychobabble gravy train can continue rolling.
Those that do become involved in advocacy in the UK find themselves victims of the Wessley/White/Crawley etc smear campaign labelling them harassers of researchers (for daring to make FOI requests) snd even dangerous terrorists making death threats (no evidence of this has ever been produced, it is hearsay).
The TYMES trust document on the setting up of the Collaborative is one example of how misrepresenting us as harassing researchers is deliberately being used to put off any new biomedical researchers, so that the lucrative White/Crawley etc psychobabble gravy train can continue rolling.
Yes, disempowered and demoralized is how I put that, by the attitude and actions of those enforcing the status quo. As I have put it elsewhere, we cannot blame most medical professions for this situation (and this extends to scientists as well) but the medical profession, and allied scientists, are responsible. To fix things they need to stop ignoring problems and act.
Where the situation then becomes complicated, in my opinion, is when Action for ME and AYME come in. I don't know about the history of when, why, or by whom Action for ME was formed, and who decided that a separate national charity to the MEA was required. That history would be highly relevant to the question Firestormm raised, because really, in terms of major national charities with a generic focus, there are only the two: Action for ME (and its 'youth wing', AYME), and the MEA.
Perhaps many of them do not know of the situation and need some good advocacy in regards on why they should help! Millions of sufferers and the Billions it cost economies in various countries!!
GG
Perhaps Julia Haggis could helpYes, maybe some our limited energy and resources could be spent finding good PWEE's (people with Extraordinary Energy) to get educated and volunteer to help us be seen.
Perhaps Julia Haggis could help
http://www.kentonline.co.uk/sheerness/news/forty-mile-paddle-to-claim-place-22954/
Is this that serious a problem? Where is the media to shine some rays of light on this?