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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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  1. E

    ME/CFS (CFS/ME!) on BBC "Today" Programme NOW - can anyone tune in

    Petition still open. https://you.38degrees.org.uk/petitions/me-association-to-leave-the-cmrc
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    The Mental Elf: A PACE-gate or an editorial without perspectives? Kjetil Gundro Brurberg

    Just thought I'd mention that some CMRC members also contribute to the Mental Elf blog. https://you.38degrees.org.uk/petitions/me-association-to-leave-the-cmrc
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    Petition: That the ME Association leave the CMRC

    "The national patient organisation I didn’t mention by name above is the ME Association. I would like to make plain that I have a great deal of respect for their work and that of their Medical Advisor Dr Charles Shepherd, who much of the time do a very good job of representing our interests. An...
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    VIRAS Stakeholder Comment on: The NICE Guideline CG53, Review - July 2017

    It's a great point and one I shall be taking up with my MP.
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    Petition: That the ME Association leave the CMRC

    He's spending a ridiculous amount of time on not answering questions. If he answered the questions directly and not like a politician this could have been over weeks ago. This is my whole point, it's a waste of time and energy Charles replying like this and also being a memeber of the CMRC...
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    Petition: That the ME Association leave the CMRC

    Keith Geraghty was ignored when he asked to join the CMRC so it clearly doesn't bring together everyone.
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    Petition: That the ME Association leave the CMRC

    FWIW providing that research grant to Keith Geraghty is such a better use of time and resources - more like that please!
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    Petition: That the ME Association leave the CMRC

    "The CMRC has no funding, no staff and no active volunteers - so there is a limit to what it can actually achieve." I rest my case your honour.
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    Petition: That the ME Association leave the CMRC

    I wasn't and I'm not expecting it to be finished any time soon. I wasn't planning on talking about it to Charles for a while but this thread turned up so I felt I had to put across my views and it was maybe a good place for patients to discuss it without MEA input. Charles could easily say 'I'm...
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    Petition: That the ME Association leave the CMRC

    Ps there's no need to crack your knuckles. I'm just trying to understand MEA position which so far doesn't make sense.
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    Petition: That the ME Association leave the CMRC

    To make it clear my petition was in response to Charles refusing to answer my questions on Facebook and saying that he had not received any letters from patients to suggest leaving the CMRC which is actually untrue and he should check his correspondence. He was implying that there was no...
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    Petition: That the ME Association leave the CMRC

    -"what I don't understand is why those people don't express that anger themselves to the people in authority, rather than continually demanding someone else do it on their behalf" Believe me I am (happy to show you my fat file of letters - I've just had a meeting with a facetious physio at the...
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    Petition: That the ME Association leave the CMRC

    Charles no one is denying the good MEA do in other areas, but continuing to ignore my questions shows to me that 1.they can't be answered because you don't know (seems unlikely but fair enough just say so) 2.you can answer them but you won't (which is rude) 3.you can answer them but won't...
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    Petition: That the ME Association leave the CMRC

    Charles I really wish you would answer my genuine questions please 1.why is the situation different for MEA than ME research UK? 2. How long has CMRC existed and what have they achieved for the severely ill? Thanks.
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    Petition: That the ME Association leave the CMRC

    Alternatively the MEA could just address the concerns.
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    Petition: That the ME Association leave the CMRC

    It feels like we are hitting our heads against a brick wall. That does not reflect well on the MEA. I think both the CMRC and NICE petitions are linked and aligned, we may discover more directly if we ever find out who is on the NICE review panel or consulted experts. Given I've been ill for...