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Minutes of UK CFS/ME Research Collaborative Executive Board Meeting 21 March 2017

Discussion in 'General ME/CFS Discussion' started by AndyPR, Apr 6, 2017.

  1. AndyPR

    AndyPR Senior Member

    I've replicated the full minutes here, original available at https://www.actionforme.org.uk/uploads/images/2017/03/DRAFT_Minutes_CMRC_21.3.17.pdf
     
  2. user9876

    user9876 Senior Member

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    I think there is something quite strange in Holgate's piece near the beginning where he seems completely unaware of worldwide efforts a part from the IoM and NIH which as big organisations he probably feels he can't ignore. I guess what seems worrying is that I don't think he is aware of the research that is going on and it looks like the CMRC is existing in its own private bubble. At one point he talks about repurposing drugs "Repurposing of compounds can be explored while recognising that we don’t always understand how some compounds work" but I believe there are some attempts at this in the US as well as things like Rituximab but he seems to want to start new efforts rather than build on the existing work.

    I don't think he understands why patients don't trust him either.

    I noticed this comment
    Without acknowledging what went wrong with PACE this is hard. Also PACE have interesting data in terms of questionnaire answers and the 6mwt and step test that could help gain more understanding and keeping these data sets closed slows things further.

    He also talks about their 'bioresource' but fails to talk about the bio bank.

    I think the idea of just randomly collecting lots of samples without a greater understanding of the disease could mislead. If it were me I would have a project of collecting lots of samples regularly from a smaller number of patients to understand variation.
     
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  3. Sean

    Sean Senior Member

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    And yet Esther Crawley, one of the worst offenders in the psych camp, is still involved in this advisory group. :meh:

    Still, it is progress of sorts, I guess.
     
  4. trishrhymes

    trishrhymes Senior Member

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    Esther Crawley appears to be the principal investigator for this study, based at Bristol University where she is a professor of paediatrics.

    She not only uses such broad definitions of CFS/ME that she includes any child who self reports as tired for 3months, but she also describes PEM as something like fatigue after activity.
    Then she treats them with sleep hygiene and activity management, her term for GET. She has wasted millions of funding on completely unscientific trials including SMILE, MAGENTA and FITNET.

    She describes PACE as good science and says kids who don't get better have treatment refusal syndrome.

    And she attaches her name to an endless stream of extremely poor quality small studies, presumably carried out by her students, that treat the biopsychosocial model as fact and make outrageous deductions about parents perpetuating their children's illness.

    Now she wants us to believe that she is the best person to set up a biobank, duplicating the already up and running highly respected UK ME biobank.

    Even if the PAG manage to get a better definition including PEM properly defined, i do not trust Crawley or Holgate to run such a project.

    The requirements for 12000 people seem to be entirely driven by genomics, yet other genomics projects have used more like 2000 patients and comparison data of healthy controls and other illnesses could come from existing resources. Genomics seems to me to be eminently suitable for international collaboration with other biobank, no need to reinvent the wheel.

    Other omics do not need, and could not get the funding to use, such huge samples.

    I cannot support MEGA, while it ignores the existence of the existing biobank, has Crawley running it and aims for such a huge sample that will take years to collect, yet still excludes the severely effected.

    I hope the MRC will be alerted to the OMEGA petition and the existence of the UK biobank.

    Edit: sorry to go over old ground. I'm aware that lots of new people have joined PR recently and may not be fully aware of the background to why some of us oppose MEGA, as i wasn't until a few months ago. Apologies to those who have educated me about this and know it all better than i do. I just couldn't let this bland report of the meeting pass without comment!
     
    Last edited: Apr 6, 2017
  5. Daisymay

    Daisymay Senior Member

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    Well yes and no, it comes over to me as being rather duplicitous, trying to fool outsiders that it is all kosher whilst still having Crawley in a leading role and Ed Sykes, senior press manager and head of mental health and neuroscience at the SMC, and representatives from BACME, AfME, AyME etc so its not exactly a bunch of people who you would trust to be on the side of genuine biomedical research and the care of patients interests.

    The phrase "speaking with a forked tongue " comes to mind.
     
  6. slysaint

    slysaint Senior Member

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    "This application will be for sample collection only due to the nature of the call.".........is this urine sample collection? shouldn't it be 'call of nature'? or is it over the phone?:redface:
     
  7. user9876

    user9876 Senior Member

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    I think as a group they seem to have their hooks into the MRC (i.e. part of the club) so will expect funding.

    The fact they seem unaware of the rest of the world and don't seem to be addressing duplication of resources should matter to reviewers.
     
  8. Sean

    Sean Senior Member

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    Yeah, I am still very skeptical, and did sign the Stop MEGA petition.

    The thing that will probably most control these guys is published research results from the serious biomed crowd, particularly outside the UK. Which is happening. Just wish it was a little faster.
     
  9. Jan

    Jan Senior Member

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    It made me feel physically sick reading this. I do not believe these people have our best interests at heart or that anything will ever improve under this CMRC. It needs ripping up and starting from scratch, as does mega. We have waited for decades for things to change, but change we aren't going to get. Is it entirely impossible for patients to have some input into who sits on boards representing their illness?

    They have taken snippets from other people's work to make it sound like they know what they are talking about which is laughable. I presume none of them apart from SC attend research conferences other than their own. What have they achieved in the last 10 years? Now they are playing catch up with the rest of the world whilst still wishing to keep the BPS school at the helm and presumably in the SMC.

    They state catagorically that ME is not a mental illness, but still expect us to accept a lead researcher who believes and promotes the BPS version of this illness. It seems she will be getting the lion's share of MRC funding yet again. They are still funding and churning out this garbage week after week, there seems no end to it.

    I don't know how they encourage researchers into the field, they have either refused to fund them, or scared them off by insisting the illness is psychosomatic. They do not admit that the problem of this illness being categorized at a mental health problem is due entirely to the all the garbage research agreed by them such as PACE and EC's endless studies.

    The majority of patients have no faith in Bacme, Afme, or EC and SH, and I wonder how many have confidence the current CMRC set up will result in any change for the better?

    I vote no confidence.
     
    Last edited: Apr 6, 2017
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  10. boombachi

    boombachi Senior Member

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    This is just my opinion but I noticed Professor Holgate made a lot of points that seem to be in response to the criticisms so many people in this site and advocates in the community have been raising. He sounds to me like someone who has heard some of those criticisms and is trying almost too hard to point them out. I notice the same pattern on the Mega website.

    What is missing for me is the aknowledgement of harm that has been perpetuated and aknowledgement that they should have been listening a long time ago.
     
  11. slysaint

    slysaint Senior Member

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    For anyone unfamiliar with any of the issues/concerns raised; you can find most of what you need to know on #mepedia.
    eg Esther Crawley
    http://me-pedia.org/wiki/Esther_Crawley
    "
    Esther Crawley is Professor in Child Health at the University of Bristol in the United Kingdom. She is a proponent of Cognitive Behavioural Therapy (CBT) and Graded Exercise Therapy (GET) as treatments for paediatric and adult Chronic Fatigue Syndrome.

    She is vice-chair of the UK CFS/ME Research Collaborative (CMRC) and leads the paediatric centre for children and young people with ME/CFS at the Royal United Hospital in Bath. (Previously at the Royal National Hospital for Rheumatic Diseases in Bath). Her work has been funded by the National Institute for Health Research (NIHR) and Action for ME.[1].

    She was on the guideline development group for the NICE guidelines published in August 2007 and the Medical Research Council CFS/ME expert working group (2009-2010).

    She has published studies in the Journal of Psychosomatic Research [2] and collaborates with Peter White of Queen Mary University of London. Prof Crawley is the Lead Medical Advisor at the British charity Association of Young People with ME (AYME) having replaced Dr Nigel Speight in 2009.

    Since 2006, Prof Crawley has been awarded £2.3 million in grants by various bodies to study ME/CFS."

    that's just for starters..........
     
  12. boombachi

    boombachi Senior Member

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    I want to see "call of nature sample collection" on a funding application. (my emojiis keep goin in the wrong bit but I am laughing here)
     
  13. slysaint

    slysaint Senior Member

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    "The Patient Advisory Group met yesterday evening with EC and SC’s colleague. There has been considerable input and the design of the study has changed as a result."

    What design? Didn't think anything had been decided yet(?) Changed how? I thought they were waiting until they got funding? Do they have a Steering Group/Committee yet............or is this now just EC?

    They still have to discuss funding for the 2017 Conference but "Tickets will go on sale in April with an earlybird discount"

    woopidoo
     
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  14. Molly98

    Molly98 Senior Member

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    Agreed.

    What is also missing, or I have never seen address by Holgate or any other member of MEGA is Crawley's input and position.

    This seemed to be the biggest factor as to why people opposed MEGA. Thousands of patients wanted an answer to their concerns.

    Our concerns about Crawley have not only not been acknowledged they have been totally ignored. Has Holgate answered anywhere about Crawley's involvement and patient's anxiety about this?

    There has been no open discussion between MEGA and the patient community on this fundamental issue.

    To claim they are listening to patients or have our best interests at heart is pure spin and marketing to get what they want.

    In my opinion, the driving force behind MEGA is not concern for patients, nor science, it is about Crawley's future career, an attempt to cleverly reposition herself, and guarantee funding to keep her university position over the forthcoming years. This will always be MEGA's number one priority. If this were not the case they would have heeded patients concerns and dropped Crawley.

    As the Patients on the PAG are there to represent the interests of the patient community, I would really like to know has this fundamental issue been addressed? Has the views of patients on this been put forward assertively, has there been proper debate and discussion around this?
    If so, what was the outcome and how was it arrived at? If not I would like to see the patient representatives forcing this issue before MEGA goes forward, otherwise, how can the patients on PAG be seen to be acting in the interests of the patient community, this issue can not continue to be ignored.
     
    Last edited: Apr 6, 2017
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  15. Molly98

    Molly98 Senior Member

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    Yes, I would like to know how many of them are going to be attending the IiME conference?

    I think virtually all the top ME researchers and clinicians will be in attendance discussing ground breaking research from around the world.

    If they are not going to an event such as this in their home country then the patient representative on PAG need to be asking why not and pushing this issue again.
    It is not in the interest of the patients that they seek to research that they do not attend such conferences and do not collaborate and work with the global ME research and medical community. Especially if they are claiming to be 'bio' focused.

    At present they do exist in a bubble, I wish that bubble would burst and the whole thing be abandoned and something new which does collaborate and does recognise patients concerns be formed.
     
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  16. AndyPR

    AndyPR Senior Member

    One bit that got me the most was this
    The fact that the Chairman of the UK CFS/ME Research Collaborative Executive has to suggest to board members that they read the NIH report is laughable - it just goes to show the level of engagement with (or lack of) the wider research community outside of the room that the meeting took place in.
     
  17. Jan

    Jan Senior Member

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    Even if they do read the report, how does that tie in with PACE being a great, great trial?

    Either you believe the IOM report, OR , you think PACE is a great trial, and continue to do PACE type studies on children.

    Reading the report and completely ignoring it is pretty pointless.

    If you do believe the report, PACE type studies on children should be suspended immediately.
     
  18. ukxmrv

    ukxmrv Senior Member

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    If he reads your post @boombachi I can imagine him thinking "Bastard patients, they are never satisfied".

    That's the problem with his attitude all along. He didn't realise straight off that there was a body of educated and informed patients who had a point of view in opposition to those around him. That the patients were in fact right.

    We patients were always the problem, sending hate mail, demanding biomedical research, criticising PACE and "frightening off" researchers.

    Back then he could blame us, stick his head in the sand and hand the money to Crawley.

    Now the world is changing and he is slowly realising that all along that we are genuine people with genuine points of view that have had our lives and health damaged by a lack of proper medical research.

    My opinion is that it is too little, too late from the MRC. They need to get rid of Crawley and other impediments to progress. It may be that the rest of the world is dragging them kicking and screaming into a changed viewpoint but they are still far too entrenched in the old one to make a real difference to patients lives.
     
  19. TiredSam

    TiredSam The wise nematode hibernates

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  20. Cinders66

    Cinders66 Senior Member

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    My issue is we have Holgate, the charities along with the 3 big funders MRC, NIHR and welcome representatives all sit at these meetings, when they all attend, and remark at the enormity of the situation "this isn't rare", acknowledge the financial costs to our supposedly struggling country, acknowledge this isn't psychiatric but is being approached and viewed so but don't seem to have the power or bite or understanding or focus to actually set up a turn around situation. The ME expert group has been meeting since 2007/8, surely over that time the reasons why the field isn't respected or advancing in uk could have been explored and action plans drawn up beyond a yearly conference and need of reports looking into the situation. Why can the USA turn around (albeit with room for improvement) in 2 years and us still thrashing around stuck, under resourced and failed since the 2002 CMO report. Is there a total absence of something similar to the central direction and power that the NIH and CDC have in uk?

    If this Situation was a floundering business there would be action committees, reviews and then an action plan to bring a turn around within a specific time frame. This was all possible in the uk, even with the mess of a CFS umbrella and PACE narrative wasn't it? I assume, although the minutes aren't written to be understood by patients, that pharmaceutical companies etc were brought in to see how they can get involved more and speed up research etc but it all seems ineffectual and amateurish. That's why I think a centrally organised inquiry into the general handling of ME is needed, as every bit of the picture influences everything else, so you can't have one wing of the health service trying to approach the illness as MUS with behavioural treatments and it taught at medical school like that and then on the research front people bemoaning why the illness isn't capable of arousing serious interest....

    I could write a short report of what's happened in uk since the CMO report and it wouldn't be a cheery read. I could also write about the consequences of that for the severely ill. I still think , if everyone's concerned about lack of research interest that the quickest way to bring in some blood is offer up more ring fenced state funding. I'd be interested to know Holgates solutions to why things haven't turned around in uk like they have USA.
     
    Last edited: Apr 8, 2017
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