Phoenix Rising tells QMUL: release the PACE trial data
Mark Berry, Acting CEO of Phoenix Rising, presents the Board of Directors’ open letter to Queen Mary University of London (QMUL) urging them to release the PACE trial data, and hopes that other non-UK organisations will join British charities in the same request...
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2017 CMRC Conference

Discussion in 'Upcoming ME/CFS Events' started by AndyPR, Apr 25, 2017.

  1. Valentijn

    Valentijn Senior Member

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    Maybe it's time for another petition, this one (thoughtfully and politely) expressing patient lack of confidence in the AfME by UK patients. Then it can be cited any time AfME is about to support BPS research or other nonsense, and hopefully knock them out of any involvement they're having with the government or other organizations purportedly on our behalf.

    If anyone in the UK does feel inclined to make such a petition, please take your time, and get a committee of interested and constructive people together in a private group. It's disappointing when someone cranks something out in 15 minutes that inadvertently makes us look a bit unhinged, ignorant, and/or biased. If we want big numbers on petitions, they need to be of high quality, and not say anything that otherwise supportive patients can't sign on to.
     
  2. slysaint

    slysaint Senior Member

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    I've mentioned this numerous times. There is really little need to 'print leaflets' these days.
    Whilst I understand that running costs are a consideration I think the MEA overall have to look at why they are not the first 'port of call' for the newly diagnosed.

    Note: This is not meant as a criticism of CS who appears to do more than his fair share.

    eta: on another thread when I was looking at various health websites and fora the link for 'help' for ME/CFS was very often only AfME and no mention of MEA.
     
    Last edited: May 14, 2017
  3. trishrhymes

    trishrhymes Senior Member

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    I agree about not charging for leaflets, @charles shepherd.

    Back in the day when they had to be printed and sent by post, it made sense to charge for the costs of doing this. Now that most people will order the downloadable version, it seems wrong to charge for them.

    I have bought and downloaded a few, and don't feel most of them were worth the money - a few pages for 80 pence may not seem much, but it adds up if you are new and have lots of worries and questions. It is definitely a barrier, especially if the rival AfME does theirs free.

    I would prefer a slight increase in membership fees if necessary, and free access for all the short leaflets. I probably should be writing this directly to the MEA. @charles shepherd, can you clarify whether the MEA, or you on their behalf, takes notice of things raised here by MEA members or only of direct approaches?
     
  4. Cinders66

    Cinders66 Senior Member

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    Speaking personally I think people are Also drawn to AFME over MEA because of their name , it sounds more dynamic and positive ( undeservedly so) and the newly ill probably value positivity, bright coloured hope suggesting stuff and support over medical expertise and authority , something AFME have been strikingly without until recently and even now it's less medical, relying on a volunteer pharmacist for most of the scientific stuff. I aLeo think AFME are more palatable to the establishment and they are likely therefore to promote that charity at clinics etc. I have never seen for example TYMES trust recommended anywhere from the establishment websites, literature, press etc but AYME used to be everywhere. In Scotland where AFME is making intense effort all the Drs education stuff they are putting their name to and building with government money will mean Drs in Scotland will recommend their patients look to AFME. Although I suppose MEA educational material will have had similar effect.

    I doubt MEA see AFME as a problem or rival to be beaten anyway though.
     
  5. Esther12

    Esther12 Senior Member

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  6. slysaint

    slysaint Senior Member

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    And now all those links take you to AfME; good for them but not good for those now turning to them for help with children.
     
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  7. Barry53

    Barry53 Senior Member

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    I just wish @JohntheJack could add a clarification onto the page about what demand 3 is really saying. I would sign it gladly then.
     
  8. Yogi

    Yogi Senior Member

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    Thank you @Valentijn for saying something which has been on my mind for ages but did not post about.:thumbsup::thumbsup:

    This is a very important post. Please can we PIN something on the petitions section of PR for people to consider the wording of the petition with a few people ensuring it is correctly worded for brevity and maximum impact.
    I
    There are a lot of ME petitions which I did not sign because they were worded so badly and I could not fully agree and the receiver of the petition could just bat away with a non-response or worst it could be used against us.

    I also agree a solid petition against AFME should be set up. We should think carefully about the wording though.
     
  9. Barry53

    Barry53 Senior Member

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    I wholeheartedly agree. Though speed can be important, it cannot be done at the expense of thinking it through enough.
    This is my very real worry here, of doing more harm than good. The absolute last thing we should be doing is putting someone like David Tuller in a very difficult position and risk undoing his good work. e.g. If he ended up having to distance himself from a signed letter, because it compromised his own position. In truth he would probably argue that it was unfortunately worded, and meant something different ... but the damage would be done.
     
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  10. Barry53

    Barry53 Senior Member

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    I agree, but it goes beyond this. In this modern world, if I am ever in a situation where I need to learn fast about something, I turn to the web of course, initially at least. If you know no different (as is typically the case when doing such initial research), if there is a choice between sites offering free leaflets and others charging for them, my automatic/subliminal behaviour is to favour the free site because:-
    • I don't initially know who has the best information, and so I'm scanning across multiple sites, trying to assess validity, integrity, etc. Sites asking to be paid for downloads, when others do so for free, reflects poorly on the perceived good intent of the site. Initially it is the small/tiny signals I pick up on.
    • I want to gather as much information from various sources, as quickly as possible initially. I simply cannot be 'arrised to fuss with paying for stuff that others are letting me download there and then.
    • If some sites are free and others not, although I instinctively do some assessment of whether the freebies are a con or not, if they seem genuine then they get my initial vote.
    • I tend to feel slightly offended by the sites asking for money when others are happy to provide equivalent help for free.
    I think it is also worth noting that there is a human tendency to "lock in" to whichever organisation provides their first good experience; implicitly biasing against those that do not therefore. A natural loyalty factor I suppose.
     
    Last edited: May 14, 2017
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  11. Somer

    Somer

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    I agree with you @Snowdrop. I think it's all too muddied & confusing. I think anyone's charity position does need to be really clear now otherwise it's just too hard for a lot of people in the M.E community to make sense of things let alone anyone outside of it.
    I'm only just starting to try to get my head round it all & from what I can see so far is that Tymes Trust. ME Action & Invest in M.E all seem to speak with the same voice.
    I think conferring 'legitimacy' is a huge issue that you expressed very well.

    I've just read this on the MEA site from an interview back in 2011 with @charles shepherd
    CS: ‘Well, I think the main complaint about the government funding to the psychological-based research is that’s where all the government pot of money has gone. It hasn’t gone to the biomedical – this has had to be done by the charities, and most of this money has gone into CBT and Graded Exercise and we spent a vast amount of money a few years ago, two to three million pounds on something called the PACE trial, and I think there were again justifiable complaints about that because we felt it wasn’t going to tell us anything that we didn’t already know, and there are things that we do want to know about this illness.

    ........one of the things the Medical Research Council’s Expert Group on research priorities wants to look at.........And those of us who want biomedical research want the answers to these different aspects of the illness"

    So here there seems a very clear support for biomedical research from the MEA.
    Is the Medical Research Councils Expert Group the same as the CMRC??
    Has what's happened is that they (the MEA?) hoped that the group would attract & prioritise funding for biomedical research & yet what has happened is there has just continued to be funding & research on PACE related trials "not telling us anything we didn't already know"
    Also are 'the charities' funding biomedical research??
     
    Last edited: May 15, 2017
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  12. trishrhymes

    trishrhymes Senior Member

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    Hi @Somer, like you, I'm gradually getting my head around who are the good and bad guys in ME in the UK. Here's my version of what I've found out so far.

    IiME are good - uncompromisingly supporting biomedical research and running an excellent annual conference,

    Tymes are good - supporting children and families.

    AfME are bad, siding with the BPS/PACE people and fully supporting the CMRC and their MEGA project uncritically, despite it being dominated by bad researchers like Esther Crawley. AfME is dangerous for us because they seem to have the ear of politicians, etc.

    AfME is also bad because it's recently taken on AYME as its youth section which is in Crawley's pocket. Very bad news.

    There are also smaller charities like MERUK who I don't know much about.

    The MEA is almost entirely good - clearly anti- PACE and opposing GET, supporting patients, providing useful materials for patients and doctors, working to get the NICE guidelines changed etc. and funding biomedical research. @charles shepherd does a lot to try to bring about good change - interviews, meetings with politicians, writing one of the recent papers critical of PACE etc.

    The only thing some of us are critical of with the MEA is their representation on the CMRC and tentative support of MEGA. There are 2 sides to this - is it better to be a 'critical friend' inside the tent, or better to stand uncompromisingly on the outside? You will see both views expressed here.

    As for the standing of the CMRC - I'm still confused. No one seems to be able to explain clearly whether it's an offshoot of the MRC, and advisory body to the MRC, a professional group for ME researchers (they run conferences), a body to encourage others into research, or a body setting up a research project of its own (MEGA). Unfortunately, to me, it seems to be simply a vehicle for keeping the bad guys (Crawley, White. Wessely and their BPS cabal) in a controlling position in ME research. While they pretend to be in favour of biomedical research, they want to run it themselves under Crawley's leadership. Hence the opposition.
     
  13. slysaint

    slysaint Senior Member

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  14. Yogi

    Yogi Senior Member

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    CMRC was set up to just to derail the good progress that IIME was making in biomedical research/conferences and keep ME firmly in the biopyschosocial /mental box but claiming on the outside of the box it is biomedical.
     
  15. slysaint

    slysaint Senior Member

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    [​IMG]
     
  16. Somer

    Somer

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    Really helpful @trishrhymes - I'm much clearer now, big thanks.
    Thanks too for the reference @slysaint - looks excellent.
     
  17. NelliePledge

    NelliePledge plodder

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    :thumbsup:
    great summary Trish
     
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  18. Ysabelle-S

    Ysabelle-S Highly Vexatious

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    The ME Association has always been the one I looked up. Haven't really paid much attention to the other sites.
     
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  19. MEMum

    MEMum Senior Member

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    Loving the new Avatar @NelliePledge

    Still haven't got one, despite great suggestions
     
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  20. slysaint

    slysaint Senior Member

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    [​IMG]

    A Mum.........a wonderwoman........and blue hair the colour of ME Awareness
     
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