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Thank you - have now managed to download..
Try this link for the Behind the Scenes (of the CMRC ME Collaborative) notes, the text came up eventually but it seems a bit temperamental .... http://bit.ly/1vSRhOI
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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Thank you - have now managed to download..
Try this link for the Behind the Scenes (of the CMRC ME Collaborative) notes, the text came up eventually but it seems a bit temperamental .... http://bit.ly/1vSRhOI
I agree that this is worrying. But I'd also make the point that the ME Association have not been shy in fighting PACE in the media: when the time came to make a call on PACE, they rightly stayed well away whilst AfME compromised themselves and, to be honest, are well beyond saving in my opinion.The trouble is .... during the collaborative conference, when Sonia Chowdhury was asked by a patient to ask a question about PACE, Sonia's response was, as long as its not abusive. The question was not asked at the conference, but the patients were yet again pre-emptively put in a bad light, by the association of asking questions about PACE with 'abuse'....
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The trouble is .... during the collaborative conference, when Sonia Chowdhury was asked by a patient to ask a question about PACE, Sonia's response was, as long as its not abusive. The question was not asked at the conference, but the patients were yet again pre-emptively put in a bad light, by the association of asking questions about PACE with 'abuse'.... The Science Media Centre (on the inside of the CMRC) have not demostrated in any way that they are aiding the cause of funding biomedical ME research, either from inside or outside the CMRC.
Talking of Trojan horses inside the CMRC, the SMC is not on the side of the patients or biomedical ME research ..... with friends like the SMC .....
And with the unprecedented CMRC 'gagging' clause on individual members and charities, and Jane Colby's release of notes (FOI) from the setting up of the CMRC Collaborative, and the contribution of the SMC revealed in those notes,
https://www.dropbox.com/s/92m09l9tq55pihh/Behind the Scenes - Research Collaborative.pdf
or
http://bit.ly/1vSRhOI
...its easy to see why there is scepticism re the CMRC.
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Try this link for the Behind the Scenes (of the CMRC ME Collaborative) notes, the text came up eventually but it seems a bit temperamental .... http://bit.ly/1vSRhOI
As you say the SMC is simply PR for the money spinning psychosocial approach (insurance, DWP, NHS fatigue clinics). Why should they change? It's working out very nicely for them, thank you very much, although sadly not for patients. Perhaps what will happen is that some of the more high profile biomedical researchers will also object to the SMC spin and they will have their wings clipped in one way or another..
The ME Association keep writing to the SMC, and the SMC continue brazenly being a PR company for PACE and psychosocial treatment for ME, both outside and inside the CMRC
It would save the ME Association a lot of letter writing if the SMC simply acted as if ME did not exist. They are not doing us any good at all by their actions and press releases, and do cause us harm.
Dr Shepherd,
Was Carmine Pariante ever part of this group and if so when did he leave? Can you tell us why Peter White is no longer part of the group and also why Esther Crawley is still there.
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How is the CMRC going to handle the Science Media Centre? Its just not viable that the CMRC says it wants to increase biomedical ME Research, while the CMRC member, the SMC, continues to favour psychosocial research in its press releases and (for example), choice of Experts for expert Views of research ? It was first stated that the SMC representative would be merely 'an observer'. But that is not the case. It looks like the CMRC is being 'played' by the Science Media Centre.
This is a massively important issue. It does not help the credibility of the CMRC (with a patient population that has been messed about for decades) that the SMC is on the inside of the MRC ME Research Collaborative.
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Wasn't the psychiatrist David Nutt also involved in this group?