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CMRC 2017 conference update: Look who’s flying-in next month!

Discussion in 'General ME/CFS Discussion' started by charles shepherd, Aug 18, 2017.

  1. Esther12

    Esther12 Senior Member

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    Thanks!

    I think that Crawley does think CFS can be 'physiological'. Classing it as 'physiological' doesn't need to mean much though, and imo is largely a distraction from the real problems with the way people like Crawley apporach patients. TraditionAlly there is an assocation between classing patient's health problems as 'psychological', and approaching them in a manipulative and 'paternalistic' manner, but there's also a lot of people who think that it's okay to treat those with 'physiological' problems in the same way.

    Crawley's shown that she's a quack (see the links in my signature!) regardless of what she thinks is the likely cause of symptoms in CFS.
     
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  2. BurnA

    BurnA Senior Member

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    Sometimes looks can be deceiving :)

    If you search some of the names on these forums I am sure you will find more information on the speakers in question. A 'full day' may have been an exaggeration, but not too much.
     
  3. Jan

    Jan Senior Member

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    I don't think I could bear to hear him talk about the treatments he uses, knowing full well in the UK we are denied access to any of them. It breaks my heart, we suffer, whilst others profit from our misery. All those poor souls in darkened rooms, all those poor souls with no hope, contemplating suicide, and the poor, poor children. I think of them every day, they are in my thoughts every time I write on here, those with no voice.
     
  4. trishrhymes

    trishrhymes Senior Member

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    I wonder whether Crawley and others of her ilk will actually attend all the biomedical sessions, or will they just breeze in for their own presentations?

    If Holgate and Crawley really listen to Montoya and Nath, will they have a blinding realisation that all Crawley's previous research should be retracted and present research such as FITNET should be halted?

    Will Holgate withdraw his support for Crawley's work?

    Will Crawley stop misdiagnosing tired kids as CFS? Will she stop diagnosing kids with severe ME as pervasive refusal syndrome or whatever it's called now?

    Will she withdraw from ME/ CFS research acknowledging she's got it wrong?

    Will she hand over running of MEGA to the team running the existing UK ME biobank if funding has been granted, or close MEGA down and support the biobank instead?

    If none of these thing happen, and following this interesting and informative conference, Crawley and Holgate carry on just as before, then what's the point of so called collaboration?
     
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  5. slysaint

    slysaint Senior Member

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    I would like to see one of the UK researchers dare to say anything like this with relation to what has been going on and continues in the UK; and point out that GET and CFS-style CBT are totally inappropriate treatments for ME given the biomedical research findings.
    There is no point in talking about ME being a neglected, complex and 'misunderstood' disease while tolerating those who perpetuate the situation.
     
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  6. charles shepherd

    charles shepherd Senior Member

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    I know that I'm banging my head against a brick wall here - but you have a very distorted and inaccurate impression of what happens at CMRC conferences

    They are not crammed full of presentations from psychologists and psychiatrists - their input is almost non existent

    The audience is not crammed full with psychiatrists and psychologists - I can only recall meeting two last year in
    Newcastle

    And people do not disappear for biomedical presentations

    If they did, there wouldn't be any point in people (CS included) forking out £400 to attend!

    CS
    (who is now having a day away from the keyboard for a change)
     
    Last edited: Aug 20, 2017
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  7. trishrhymes

    trishrhymes Senior Member

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    I don't wish to quarrel with you @charles shepherd . I appreciate all you do for us.

    But I have to respond because you have completely misrepresented what I have said.

    My comment made no mention of the conference being crammed with psychologists or psychiatrists. In fact the two people I name, Crawley and Holgate, are neither of these things.

    Nor did I distort what happens at the conferences - in fact I described it as an 'interesting and informative conference'.

    What I did question was whether all the biomedical presentations would change the minds of Crawley and Holgate.

    I am pleased to hear that they will be attending all the presentations. I just hope they listen with open minds.
     
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  8. slysaint

    slysaint Senior Member

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    I watched all the presentations from last year on Youtube (which only got a few hundred hits at best); I also watched coverage of the IiME conference in London, and the recent OMF symposium.............the last two had several memorable presentations.
    All that the 2016 CMRC brings to mind is this:
     
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  9. daisybell

    daisybell Senior Member

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    I watched a few minutes and couldn't bear to watch any more.
     
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  10. Cinders66

    Cinders66 Senior Member

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    I couldn't hear Montoya presentation last year as the streaming didn't work
    I do remember holgate either introduced him or followed him and seemed to think uk and the likes of Montoya all on same page when clearly not. I think that it's the uk and CMRC preference for broad CFS umbrella, widest definitions etc that means Holgate sees all approaches valid including CBT /GET valid. Holgate thinks IOM definition was nice as it was broad , I disagree, although it's less specific than CCC.


    I'm amazed that the 2011/12 MRC funded researchers are still being dragged up as current.
    Whilst the conference has some impressive speakers as well as less great, the key point for me is that since 2011/12 I only know of the mark Edwards 2015 study that's got any funding for ME research from MRC.compared to what NIH are doing , as well as Norway and Australia I don't think it's acceptable so I see the conference as an inadequate response to the ME/CFS crisis from the big players MRC NIHR welcome.
     
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  11. dangermouse

    dangermouse Senior Member

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    I think this is the crux of the matter (in my humble opinion).

    Because those two people are so influential, and (it seems) hold the reins, at the CMRC it would be disappointing if Montoya and Nath's presentations don't get through to them.

    It wouldn't make sense that they'd be educated about ME and then just continue with the same as usual.

    That EC has continued involvement with ME beggars belief. If she gets funding for and heads MEGA....well, it'll be a sad day. It is wrong on so many levels.
     
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  12. Cinders66

    Cinders66 Senior Member

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    Lipkin and Montoya other years didn't change anything. I just hope the MRC feel guilty for not doing even the little NIH do
     
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  13. Cinders66

    Cinders66 Senior Member

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    If they're leaving the MEGA announcement until conference I Expect it's to deliver good news. The 2015 conference and 2016 conference featured positive announcements on it as the good news for long suffering patients and to be the "something happening"
     
  14. AndyPR

    AndyPR Senior Member

    Good news being Crawley, Holgate and anybody else BPS inclined has decided to leave research altogether?? ;)
     
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  15. Esther12

    Esther12 Senior Member

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    Trish already explained that you're complaining about points she did not make, but I just want to go one further, and explain that concerns about the CMRC is not really about the conference, which seems little more than a fig-leaf over the CMRC's on-going promotion of Esther Crawley. It doesn't really matter what show is put on at the conference. What matters is where research funding is directed. We saw Holgate claiming that Crawley's FITNET-NHS is exactly the sort of research we need. That matters more than Nath giving a 40 minute talk to some students who can see where the money and power lies if they want to make a career in UK research for CFS.

    The UK medical establishment, CMRC, NICE, etc are great at providing superficial signs of progress and respect for patients. But when it comes down to it, on the issues that matter, they show themselves to be bigots and quacks. Despite all that has happened with PACE, with Matthee's amazing victory at the tribunal, with Tuller and US academics speaking out, their only response has been to put their head in the sand and pretend that the problems stem from unreasonable patients.

    When it first started, I was deluded enough to mistake the superficial signs of progress from the CMRC as something more than they were, and hoped it would be a start of something really positive for patients. Lookng back on it, how can anyone now see it as anything other than a con intended to entrench Crawley and the biopsychosocial approach (while reassuring stupid dualist patients that it was a 'biomedical' illness, whatever that means)?

    I'm sure that the patient groups involved went in with the best of intentions, and expecting it would turn out better than it has, but I'm worried that they might now be trapped in some sunk-cost fallacy. As if by giving just a bit more support to the CMRC, they might turn it around and have become something positive? So much time and effort has already invested into it that the idea of turning away becomes emotionally painful, even though it's now clear that this is the right thing to do.

    Is there anything that the CMRC could do that would now lead to the MEA leaving, or do Crawley and Holgate know that they can get away with anything? With Crawley, we've had her clearly misrepresenting treatment efficacy (claiming PACE showed a recovery rate of 30-40% for CBT and GET); smearing critics, including Tuller and many patients, as anti-science and libellous; directing limited research funding to indefensible junk science like SMILE... how much worse could she show hereself to be before it was time to walk away?
     
    Last edited: Aug 20, 2017
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  16. slysaint

    slysaint Senior Member

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    I would suggest watching from around 24.45 which is when the audience are allowed to ask 2 questions and how EC dismisses any concerns about exercise also briefly talks about protocols in MAGENTA.
    After she goes off. The next speaker talks briefly about the severely affected........

    eta: In case anyone didn't know, EC is the Deputy Chair of the CMRC, and of course MERUK won't be there this year because they left the CMRC this year.
     
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  17. snowathlete

    snowathlete

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    The CMRC will never be accepted by aware patients while people who produce poor research and behave badly toward patients are involved and are strongly supported and promoted by the CMRC.

    Whilst there are a small number of decent people involved (such as Charles), there is just too much rot at the core of the CMRC and it primarily seems to be a vehicle for achieving funding for more poor research (whether that is poor biological or poor psychological research is really irrelevant).
     
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  18. Cheshire

    Cheshire Senior Member

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    It's today. Here are a few tweets.

    Humm, not the best of starts...






    For @Woolie

     
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  19. Cheshire

    Cheshire Senior Member

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  20. Valentijn

    Valentijn Senior Member

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    Looks like the expected mix of psychobabble, real science, off-topic presentations, and AfME being incapable of telling the difference.
     
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