Response to Professor Stephen Holgate: UK has “dream team” for Grand Challenge

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The article Professor Stephen Holgate: UK has “dream team” for Grand Challenge has raised significant concerns in the patient community.  As managing editor, I would like to take this opportunity to clear a few things up:

1) The article is not from Holgate, but from a longtime, British writer for #MEAction who has written over 30 articles for this community.  I know her personally and she is a PWME.  I stand by her right to protect her identity, due to the prejudices PWME are subjected to every day; however, she will have a pseduonym from now on.  All of her articles are now identified with this pseudonym.

2) #MEAction is unfortunately the default for anonymous authors; this was the case before I became editor two weeks ago.  This has caused some to believe that this article represents the views of #MEAction as a whole, which is not the case. We are ending this practice effective immediately and are drafting a revised editorial policy. As of this piece, where we use the author name #MEAction, it will represent the views of the organization unless otherwise explicitly stated. (This does not apply retroactively!)

3) Some have commented that the article makes #MEAction appear pro-PACE. Here is a short list of some of the articles and petitions we have written that are anti-PACE:

Please note: several of these are written by the author of this piece, and all are from April and March of this year alone. Additionally, a year ago, MEAction launched one of the biggest petitions ever generated by this community asking for a reassessment of the PACE trial and retraction of key claims.  It was delivered a little over a month ago, and was covered in the Wall Street Journal.

4) We recognize that the arguments and debate presented here represent PWME’s worry about patients being harmed by ‘another PACE’, and deeply regret the frustration and upset that this has caused.

5) We do not think it is wise to remove the article, especially with this addendum attached.  That the Grand Challenge is moving forward is important news for the ME community.  Moreover, we would not want others’ comments regarding this article to be swept under the rug.  The article will stay as it is, with debate intact.

6) We welcome contributions from all members of the community and would especially welcome a deeper analysis of the CMRC and concerns about the organization and/or the Grand Challenge. If you are interested in writing with us, you can submit a piece here http://stgmeaction.wpengine.com/submit-news/.

Sincerely,

Jaime, Managing Editor

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29 thoughts on “Response to Professor Stephen Holgate: UK has “dream team” for Grand Challenge”

  1. I can’t believe you’ve had to write an article saying that MEAction doesn’t support PACE. There’s this obsession with going around insistence that someone, or a charity has totally the opposite opinion than they actually have, which is frustrating and causes unnecessary hurt to the real people behind the screens. Really MEAction shouldn’t have to specify a particular viewpoint at all, as it was supposed to be a platform where we can have a diverse range of views and collaborate to make things happen, rather than constantly pulling things apart. Derailing bio research because of PACE too, the PACE authors are probably rubbing their hands with glee! Work together and respect each other. Peace.

    1. If MEAction wants money from the world of ME/CFS patients, they will indeed have the correct opinion and I believe they do. They just have to stay on top of things.
      Yes, they do have to write such an article because they posted an article that was double speaking for what is going to be bad research. It will not be bio research on ME/CFS, it will be research on every type of CF out there from every type of illness mixed with ME and CFS patients which is NOT the same.
      The Oxford criteria is a fatigue and mental health definition. Fukuda without PEM is a fatigue criteria. You cannot put 10,000 patients suffering from every type of illness that brought on CF and think you are going to research and help ME or CFS.
      There will be nothing to differentiate the true ME or CFS patients from other patients suffering CF and once again it will be interpreted as a mental health issue needing GET, CBT, Lightning Process and depression medications. And these are not just being applied to adults but also children and it will continue even after this bio-research due to the CRITERIA admitting the patients into the study.

      1. I find it bizarre that some people are unable to accept that we don’t all have to have exactly the same opinions. MEAction should reflect the views of all ME patients and I was told that this is not an organisation which has a specific view, it’s a platform for us all to use.

        1. Your type of wishy washy reasoning is what got the UK in the ME/CFS mess it is in now. It is not a platform for all views, it is for the correct view.

          1. That’s not what it says on the FAQ page, so I hope MEAction will clarify this. There isn’t just one view held by the whole community, and it’s a shame you feel it necessary to bully people out of MEAction because you can’t hold a civilised discussion without resorting to personal insults.

  2. Russell Fleming

    Thanks Jaime,
    I am not comfortable with ‘significant concerns in the patient community’. Why not be more frank? Some concerns from a handful of people.
    I believe it has been said that upwards of 9000 people are referred to NHS ME/CFS specialist services in England and Wales each year – are we really saying that these people – including myself – can’t possibly have ‘ME’?
    The UK has never before attracted the likes of George Davey Smith, or the potential funding of such heavyweights like the Wellcome Trust to the ME/CFS field. This study alone could require as much funding as the PACE trial did – but unlike PACE this will be purely BIOMEDICAL research!
    My thanks to Alex also. Nobody should have to put up with the ‘tone’ of some of the comments her piece attracted. A piece that – until the update – simply reported on the event.
    All the best to you both
    Russ

  3. The problem with this BIOMEDICAL research is the criteria. Fukdua without PEM is not even CFS let alone ME. Oxford is a mental health and fatigue criteria, everyone knows that. Yet every fatigued patient, patient with mental health issues and those who fit ME or CFS criteria fit this criteria and then they study all of them in ONE STUDY not at all differentiating ME or CFS from anyone with CF and all the health issues that can produce CF in a patient.
    They are not going to prove anything. It will all come down to the mental health interpretation AGAIN and all the wrong treatments and therapies. They will be throwing more depression medications at these people. GET and CBT are not going anywhere for any reason and the Lightning Process is next and all these are going to be used on children.
    This is going to be a mess.

    1. Some huge assumptions. I’m not sure where you’ve got them from. The whole point with epigenomics, which is one of the research methods which will be used, is that there are no starting preconceptions or biases at all. I welcome this because having interviewed the epigenomics professor who is involved, I think it will put all these arguments about diagnostic criteria to bed for good. You can read the interview here: https://www.actionforme.org.uk/news/ceo-blog-prof-george-davey-smith-on-the-grand-challenge/

      1. If you call it ME/CFS Research, then the assumption has begun. In that it is going to be ME/CFS Research. It is not, it is fatigue research which in reality does not have much to do with the grossly misnamed disease CFS and certainly not ME.
        They are calling it ME/CFS to get the patients and charities behind it and then blame the the patients and charities when the research collaborative is called out for exactly what they are doing, hiding a fatigue study behind the ME/CFS name.
        I think MEAction, Action for ME and MEAssociation need to state why they do not support the study like Invest in ME, Tymes Trust and 25 Percent ME Group already have.

        1. I don’t think they’d state they don’t support it, when both Action for M.E. and ME Association are in the CMRC making the decisions about how the study will be run.

          1. I don’t trust Action for ME at all as they got themselves swept in with the PACE trial trusting the people in charge and only requested the data when they were called out. I am not a huge fan of ME Association and I don’t think they are capable of making sure this study is done correctly as I don’t think anyone running all the research in the UK is really listening to them.

        2. It’s a shame you see fit to judge the UK charities from where you are. I work closely with Action for M.E. and I can assure you they’re in the right path now with their new CEO and staff. As Findlow says, we should leave it to the bio researchers that have been brought in, as they do know what they’re doing. I’m thoroughly disappointed in MEAction if their views on all these issues and their approach match yours. I think I’ll move on as there’s clearly no way to find a way forward as you aren’t open to working with others but you will not silence people who hold more moderate views, we are all entitled to express them. As someone who has had ME for 25 years I’m happy that new bio research is happening and that world class bio researchers are involved. Let’s leave them to it as they know what they’re doing.

          1. The entire of British medicine when dealing with ME/CFS is controlled by the UK Psych Lobby, UK Welfare and insurance companies involved with disability.
            Unless the bio researchers break from the Psych Lobby that is the UK CFS/ME Research Collaboration and go with Invest In ME conferences, it shows they are too afraid to break from the psychiatric hold as they are more concerned with reputations.
            If researchers use Oxford or that tricky Fukuda not using PEM as mandatory, all the bio Research done by them is useless.

  4. Janet, how do you know what criteria they are going to use? From what I’ve read, no criteria have been announced as of yet but they have said that they are going to record patient phenotypes so that subgroups can be identified. It’s seems unrealistic to assume that of 10,000 patients, none of them will have what you would consider to be ME.

    1. No, I don’t think they have announced that yet. Judging new research based on who is involved is even more biased and unscientific than those researchers we complain about. It’s the science that needs judging, not the people involved. This is a huge project and it has massive potential. What’s wrong with getting behind something good for once instead of all this nastiness? I’m getting sick of all the self-sabotaging and negativity. Why should we be given anything at all? People say the psych lobby has held back bio research, well some in the community seem determined to hold it back just as much, if not more. To slate and spread nonsense about a new bio research initiative before even all the details are out is ridiculous.

      1. Psychiatry is steering all of this and they want this to be a mental health issue so insurance companies do not have to pay out on disability and wellfare reform does not have to support people with false illness beliefs.
        Supporters like you are about to set back ME/CFS research another 30-50 years.

          1. NICE. That is what UK research produced. It won’t be better this time around because the psychiatrists, UK welfare and the disability insurance has their claws in all of this. Bio researchers are kept in the arena by them just to make everything appear valid.

        1. Perhaps you will be more encouraged by the launch of the new UK Biobank. Some excellent researchers here. As a long term pwME in the UK, yes, diagnosed with what the doctor called a classic case of Myalgic Encephalomyelitis, I welcome this.
          https://www.youtube.com/watch?v=ZamGjkCFKr4
          Regarding the CMRC – of course there are huge areas of concern – role of Science Media Centre, Esther Crawley etc., but if the whole thing was psychiatrist driven I wouldn’t have thought they’d invite Prof Jose Montoya last year, with his great speech about the need to apologise to patients, and about his work with anti-virals.
          http://www.meassociation.org.uk/2015/10/global-mecfs-research-22-october-2015/
          Part of comment by the very excellent Prof Jonathon Edwards on PEM study announced at 2015 collaborative:
          “Now we know what we are talking about. It looks brilliant to me. Neil is superb and he clearly has a big input. It is all about inflammatory and neural pathways and specifically about PEM so all that stuff about Oxford criteria can go in the bin. Presumably they will even correlate findings with the degree of PEM. This is proper science. ”
          http://www.meassociation.org.uk/2015/10/post-exertional-malaise-in-mecfs-medical-research-council-announces-new-neuroimaging-research-16-october-2015/
          There are clearly lots of researchers who have no time at all for the old, dated biopsychosocial twaddle. The weight of biomedical research worldwide makes anyone who trots out the old “false illness beliefs” look like an idiot. Let’s give a chance, and our support to the many biomedical researchers, many of them young and new and trying to help us.

          1. Yes, thank you Findlay. Having been at the conference last year, it was so bio that it was hugely encouraging. There really wasn’t any room given to psychiatry, given all the definitely bio researchers that were there, exchanging their ideas and work. There are lots of great bio projects going on and it’s very encouraging to see. We really need to move forward now and get behind these exciting projects, especially if we encourage science – which is actually on our side!

          2. Stanford and others were urged not to partake in the collaborative again by e-mail. They made their point and now they are not to dirty themselves with this group again.

          3. The very excellent Professor Jonathan Edwards was engaged in ME research by the power-packed people at Invest in ME. That small charity has forged a path to lead the way. Its 11th Invest in ME Conference takes place on 3rd June & 6th Biomedical Researchers into ME Colloquium over 1st-2nd June. The work in bringing the world’s leading biomedical researchers (too many for me to list here) together in the same room, and also with patients and politicians has been going on and this has attracted the keen interest and enthusiasm of esteemed researchers such as Jonathan Edwards & Jo Cambridge at UCL, Tom Wileman & Simon Carding at world-renowned Norwich Research Park (the base for a UK centre of excellence for ME), Angela Vincent at Oxford and others. This year Ron Davis from OMF & Vicky Whittemore from NIH will be joining them, as reported here on #MEaction.
            Extracts from Here’s Jonathan Edwards statement following the 2013 Invest in ME Conference:
            “My interest in ME/CFS was sparked when I was invited, unexpectedly, by IiME to the IiMEC8 Conference in May.
            “The meeting was impressive: not just professional science, but at a high level. I was particularly impressed that negative findings were given adequate weight.
            “It became clear to me that there was a community committed to identifying and encouraging the very best research in a difficult and neglected field.
            “After the IiME Conference I began thinking about my personal experience of patients and friends with ME/CFS. I was sent a copy of ‘Lost Voices ‘ by IiME, which made me think more. It struck me that, whether or not results are positive, further trials of rituximab for ME/CFS should be encouraged not only because impact on life for those affected can be so severe but also because further trials could give clues to disease mechanism. I am retired and would not be personally involved but have suggested to IiME that I would be happy to advise and to encourage others to set up a trial.” From – http://www.ukrituximabtrial.org/Rituximab%20news-July13%2001.htm
            The latest on that is that Professor Edwards recommended starting by a study of B-cells and the first paper on this has been published. Layman’s Summary here – http://www.ukrituximabtrial.org/Rituximab%20news-Mar16%2001.htm
            The Invest in ME Gut Microbiome in ME research also got underway in 2013 and Tom Wileman will be speaking on the gut virome at the Invest in ME Conference on 3rd June.
            A European ME Research Group (EMERG) was formed in 2015 by the European ME Alliance, of which Invest in ME is a founder member and current Chair, and which joined the European Federation of Neurological Associations last year.
            So the CMRC is somewhat late to the party, but has had Invest in ME to show them the way, which they will continue to do, so while I personally have learned from experience not to trust the members of the CMRC, I am less concerned, as I know there is another way.

    2. Of course they will have ME, but they will be lumped in with those with CF from any and every disease and illness including depression.
      They won’t be using a decent criteria. We all already know that. It will all be too late once they announce the criteria, they will be so deep into this that there will be no turning back.

      1. Oh well, Janet, sadly we don’t all have your ability at time-travel and see into the future. Call me naive if it helps, but as a pwME of 30 years duration, I think I’ll just give these proper biomedical scientists a chance to do their work.

        1. I am 37 years, 43 Fibro. Oh, and I figured Trump would be the nominee from day one. Go figure.
          While I am at it, it will be Sanders for the Democrats.
          And the research in the UK will be based on faulty criteria making the research useless and will probably come up with ANOTHER criteria, with a mental health symptom making anyone with it not allowed to have welfare or disability insurance payments.
          Signed, Been there done that.

        2. Absolutely, and perhaps we could leave behind the rudeness and arrogance evident to me in some of the posts here.
          To speak to any reasonable contributer to the discussion in this hostile and dismissive fashion is, to me, completely unacceptable. “Supporters like you are about to set back ME/CFS research another 30-50 years.”
          Perhaps it is the inability to hold a rational discussion without descending into destructive abuse that is holding things back?

          1. The CMRC and ANYONE supporting it until ALL Psychiatrists still supporting PACE trial, Lightning Process, GET and CBT are removed from the Collab or resign, need to be completely shunned.
            AYME UK will not request PACE data. Esther Crawley is about to embark on the equivalent of PACE, GET and CBT for kids.
            No one really fighting for ME/CFS bio research is going to have anything to do with this Collaboration. The people behind this Collab know, you keep your “enemies” closer. That is why they “welcome” any charity or doctors/researchers solely interested in bio research.
            Did I call someone to the floor by letting them know how decades of bio research were stopped by supporting charities like Action for ME? Patients are disabled and some died because of the psychiatric hold on ME/CFS. What a legacy for UK Psychiatry, the charities and patients working with them still.

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