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Launch of inclusive UK CFS/ME Research Collaborative

Discussion in 'Phoenix Rising Articles' started by Mark, Apr 30, 2013.

  1. jimells

    jimells Senior Member

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    I think a cautious endorsement of the new collaborative is a reasonable approach. If the Wessely School manages to seize control, that would be a good time to raise Hell and publicly resign.

    One potential problem I see with creating yet another institution is the amount of time, effort, and money that goes into simply sustaining the organization without actually accomplishing anything useful. If they start renting office space and hiring staff, look out.

    The World Social Forum comes to mind. It has sucked up huge amounts of money over the years. Boatloads of small groups spend so much effort sending delegates that there's not much left over for their original work. And what do they have to show for it? Not much, as far as I can tell.

    I do appreciate Dr Holgate's efforts on our behalf. I wish him well, and many thanks to Simon for writing another fine article.
     
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  2. snowathlete

    snowathlete

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    MAY BE REPOSTED

    STATEMENT BY THE YOUNG ME SUFFERERS TRUST

    The Young ME Sufferers Trust is issuing this statement to clarify our
    reasons for not accepting an invitation to the launch of the UK CFS/ME
    Research Collaborative in London on 22nd April 2013. We will not be
    participating in the Collaborative.

    Key issues

    *Our research priority
    This Collaborative is continuing down the chronic fatigue route. By
    contrast, our priority is to end the confusion of including ME (myalgic
    encephalomyelitis), understood for decades by microbiologists as a
    persistent viral infection, under the umbrella term of CFS (chronic
    fatigue syndrome) which mixes patient cohorts and confounds definitions,
    research and treatment.

    Good quality biomedical research, relevant to ME, is vital. We ourselves
    co-funded such a study which showed blood abnormalities in children,
    consistent with a persistent viral infection. Our research priority is
    for enteroviral studies. Years of research by virologist Dr John Chia of
    the Enterovirus Foundation is validating ME as a persistent viral
    infection; his work on 'CFS/ME' should surely be repeated in the UK
    under ME criteria, for it could be that, in future, vaccinations and
    antiviral drugs will be effective.

    *The Collaborative Charter
    We would never sign up to such a Charter. This Charter, which
    Collaborative members must adhere to, contains 'gagging' clauses which
    appear to us to equate legitimate criticism and concern for patients
    with harassment. In our view it is intimidatory and entirely against
    transparency.

    *Charities
    We believe that charities signing up to this Collaborative and its
    Charter are repeating the mistakes of history, some examples of which
    are detailed in our address to the Scottish Cross Party Parliamentary
    Group on ME in 2004. You can find this address here:
    http://www.tymestrust.org/txt/view200403scottishparliament.txt.

    *Direction
    Back in 1996, the national charities of the time rolled over and
    accepted the term 'CFS' as a result of the Royal Colleges Report, where
    the lead was taken by the psychiatrists. Subsequent events have proved
    that it is unwise to compromise on one's principles, and the Trust will
    never do that.

    The Young ME Sufferers Trust
    www.tymestrust.org
     
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  3. Sasha

    Sasha Fine, thank you

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    I can understand there being a range of opinion on this. I don't think it's unhealthy to have some groups in, some groups out.

    I think time will tell.
     
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  4. maryb

    maryb iherb code TAK122

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    'gagging clause' - very interesting and who's surprised?
     
  5. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    This "gag clause" sounds really bad. I think we could use a look if anyone has a copy.
     
  6. Esther12

    Esther12 Senior Member

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    Presumably it refers to that part of the charter.

    There's some discussion of what this means starting here: http://forums.phoenixrising.me/inde...search-collaborative.22875/page-2#post-351875
     
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  7. Simon

    Simon

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    Bit more on how the CMRC will work/what it might do
    Fear not, no offices and an unpaid executive. Here's some stuff taken from the CMRC Charter
    Even though the chair and deputy are researchers, and presumably will be in future too, that still gives charities a big role, esp in an organisation where the vast majority of members are researchers.

    Activity focused on 'work streams'
    We already know there will be quarterly meeting of researchers and charities in four 'work-streams', which appear to be the main workhorse of the new organisation. The nature of the work streams has yet to be finalised but in the charter it says:
    I'd thought they might be focused on research areas, but obviously not.

    The Executive will meet at least twice a year in addition to at the AGM. Note too that all members of the Exec have to be involved in workstreams too, indicating it's a proper working group rather than a talking shop.

    A common strategy?
    Will be very interested to see how that pans out, given the diverse views of those within the CMRC.
     
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  8. David Egan

    David Egan Hermes33

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    I agree with Dr. Charles Shepherd that we all should give this CFS/ME Collaborative a chance to work. I would like to ask Dr. Shepherd and others involved in this Collaborative the following:
    1. what direction will it move in. Will it deepen existing research into viral / mycoplasma / bacteria / parasite / Borrelia infections in ME/CFS patients including infection of spinal fluids, nerve tissues, intestinal tissues which are rarely examined ?
    2. Will it deepen existing research into immune system abnormalities and dysfunctions in ME/CFS ?
    3. Will it deepen existing research findings into neurological dysfunctions, especially ANS dysfunctions ?
    4. Will it deepen existing research findings into mitochondria and HPA axis dysfunctions in ME/CFS ?

    Certainly, if it did the above 4 things, we could actually begin to make some progress in ME/CFS. I have outlined a few more biological areas which should be examined and which could help us understand the illness better at www.cfs-ireland.com
    I noted the involvement of psychiatrists. I just wonder if it is possible for psychiatrists to cure viral illnesses, autoimmune illnesses and other such biological illnesses ? If it is possible it would be a great new revelation to science and medicine ! though I doubt it exists. But one never knows these days as all sorts of claims of "miracles" abound.
     
  9. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Thanks Esther. I totally agree with the tynes trust that this gag clause is completely inappropriate as it bans "orchestrated campaigns against researchers." I find that clause immoral since we are In a situation like the Tuskegee experiments. We must campaign against the abuse of ME patients conducted by researchers.

    Now I am having doubts about MEA and other orgs joining and submitting to signing this inappropriate clause.
     
  10. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Why isn't there a charter clause banning "lying and otherwise misrepresenting the facts about ME and conducting fake science with fake definitions of "CFS", promoting dangerous 'treatments' such as GET or otherwise abusing ME patients"?
     
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  11. Bob

    Bob

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  12. lansbergen

    lansbergen Senior Member

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    She does not say lactate/lactic acid.

     
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  13. Firestormm

    Firestormm Guest

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    Not specifically here, no. But the inference is that this is what she is talking about, and indeed did specifically talk about in her presentation to AFME at their conference (transcribed previously).

     
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  14. lansbergen

    lansbergen Senior Member

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    I will wait for the paper.
     
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  15. Bob

    Bob

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  16. Firestormm

    Firestormm Guest

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    Thanks Bob. I picked this up and read on the MEA's site this morrow.

    BACME are onboard 'representing clinicians' according to the summary - important representation I am sure you will agree, even if we might not necessarily agree on the direction this Group have taken in some respects until now.

    Charles Shepherd made the following comments - out of interest - in reply to more 'concern' being expressed on Facebook earlier:

    Couple of points I plucked from the Summary that interested me:

    I actually think it is/will be important to have the Science Media Centre attending even/especially as observers. We could do with some positive press. Sure you'd agree. And this could mean a better chance at least of receiving some. Though equally, it might not (my 'nod' to the critics).

    The fact that a 'higher number of researchers' are committed to attending future meetings is a positive from my point of view. We need I think in this country especially MORE opportunities for interested parties to come together in the same space and TALK as well as LISTEN and SHARE. I believe this is termed - NETWORKING in modern parlance :)

    I suppose some might be concerned that the researchers in future will comprise those of the 'mind' but we will have to see. Personally I think this venture will build and in future years and more and more research comes on-line; this collaborative will grow. And, yes, even the likes of IiME will find it harder to sit on the sidelines.

    This was especially welcome news. Finally, an open acknowledgement about the bloody prevalence rates. For me this cuts to the chase about how you diagnose our condition and, obviously, how this impacts on the country at large. The better the ability of the diagnostician to discover what else might account for the presented symptoms - the greater the chance a person may not end up in the 'melting pot'. We know this - it's about time it was acknowledged.

    Will the prevalence rates used in the UK reach some scientific compromise? Possible. What I hope to see for now is that at least press releases will provide a RANGE of prevalence e.g. 0.4-1.0 or something. An acknowledgement that 'they simply don't know' and/or it depends on who is doing the diagnosing. Actually, what should happen is that the NICE prevalence range should be used exclusively (0.2-0.4% from memory) UNTIL a scientific study can confirm actual NICE-based-criteria prevalence.

    Of course this all depends on further negotiations and compromises about how diagnosis should be made and whether any improvement can be made on NICE at this moment in time or is it worth waiting for the various studies currently being undertaken to be published. Not my decision but I suspect for now, we might see the 1-2% prevalence figures DROPPED from SMC press releases.

    I do hope so. I spent a very long time with a film crew trying to explain why the 1% figure (in relation to economic loss) was incorrect).

    The acknowledgement about 'independent positions' not being compromised is important in this regard. Indeed one might say that this underlines the whole venture. Each 'person' will have their own beliefs based on experience and science etc. Nobody is asking them to surrender those beliefs - but it is about negotiation and compromise at the end of the day; and we must move forward.

    I doubt if it will always be a smooth ride but we have to start doing more of this collaborative stuff.

    Great! Key thing is to keep this manageable with clear objectives for each meeting. Too many views and this will become cumbersome. Independence is cool but at the end of the day, we ALL have the same objectives I think.

    It would be good to see someone from the GMC onboard (that's the body Clare Gerada represents isn't it?) or someone that oversees/represents those GPs on the front-line; but it's great that they will seek a nursing representative.

    I almost dare anyone to knock this statement, but am probably tempting fate as it is :)

    UK Plc catches up with the modern world! It is important to ensure a rapid and accurate flow of information and what better than a website? Well, Facebook, Twitter, live video-streaming... etc. etc. ;)

    Knock that! :)

    An Annual Conference. I mean Wow! :)

    Anyway, back to work... ;)
     
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  17. Bob

    Bob

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    Firestormm, don't get me wrong, I am open minded about this venture, and I really hope it succeeds as we want it to, but unfortunately I do not share your unfettered optimism about it. (If it's possible to be open-minded, hopeful but sceptical at the same time, then that's how I feel about it.) Looking at the members of the collaborative, I cannot see how certain members of the executive are going to agree to funds being channelled into meaningful biomedical research. But we will see. I have an enormous amount of respect for Prof Stephen Holgate, who seems enormously capable at getting things done, so I hope he will help guide it in the right direction. And I do think it was a good move for the charities to get involved. However, considering past experiences in the world of ME research, it is not surprising that some/many patients have reservations about the collaboration. Let's hope for the best, and see how it pans out.
     
  18. Firestormm

    Firestormm Guest

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    There is ever an obvious risk about expressing 'unfettered optimism' of course, Bob ;) and I am sure such optimism will serve to 'bite me in the arse' :)

    This initiative will not be a smooth ride. Such things seldom are when we are driven by our own personal experiences, needs and beliefs. Still, I maintain that this effort is much better than any alternative.

    We could continue to move along disparate courses of independence - with all parties moving along their own paths and 'never the twain shall meet' or we could get behind, get involved, support, this effort and those who are trying to see beyond their own firewalls.

    Perhaps in bringing people together we will see some desperately needed sparks of innovation be nurtured in the UK and a continuing priority effort within the MRC.

    Gerada commented at the IiME conference - as you know - that ME requires specialist provision and not more-educated GPs necessarily. This could also receive the support and subsequent funding, out of an effort that involves NICE and will involve - hopefully - government representatives.

    I'm simply trying to look ahead - as well as considering where we have come from. If, for example, specialist provision is - again - given some priority then perhaps with this collaborative behind it from the start we might see a more effective implementation than the last time.

    A government-led initiative at a clinical level is more likely to have a greater effect than any independently funded and led one. Imagine another £8 million (not that I can imagine such a sum in today's climate) directed at specialist provision across the country; or a lesser sum ensuring coverage in areas with no specialist at present; or ensuring clinical specialists where currently only therapists exist...

    And we also need to think about the future in terms of those who are now more involved and dedicated to ME getting older and retiring - leaving the field. This collaborative could serve - should hopefully serve - to stimulate and sponsor more newcomers to become the leaders of tomorrow. And if those newcomers were less-likely to be of the 'mind' as a result of this collaborative - then I think we should give it our support.

    A lot of focus across the water in the USA of late has been on 'networking' and large central initiatives directed at collating data - BioBanks and Patient Registries etc. Such things will stand a far better chance of being supported and then used effectively/made more available to the scientific community - if they are supported by such a collaborative.

    Dare I compare this collaborative in some way to the FDA's more recent initiatives? To the raising of ME to 'serious condition' status? Another acknowledgement from the establishment that ME deserves to be taken seriously? Another example of change for the better perhaps?

    Or perhaps this collaborative of the little olde UK is less formal? I mean nobody here is in uniform ;)

    We will not like everything that flows from this effort - I do know that much. It will be about negotiation and compromise in certain respects - what isn't? But I'm prepared to give it a fair crack of the whip. The alternative is far more worrying I think.
     
  19. Esther12

    Esther12 Senior Member

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    I think that the collaborative is probably worth being a member of... but I'm not sure, and I think that it's possible that it would have been better to have had the main charities just go on the attack, and push for the release of data from PACE which followed the trial's protocol and more accurately indicated the efficacy of treatments.

    It's possible that good new research will help patients soon... but I think that a more reliable way of improving things would be to try to undo the harm done by poor and spun research. I don't think that more research is necessarily a good thing. Less research, but done to a higher standard would probably be preferable imo.

    Also, re the SMC involvement - they are hacks. They've recently been celebrating their role in the way PACE was presented to the media, and the way that they were able dum up concern about anti-psychiatry CFS patients while glossing over the problems with the poor psychiatric research which surrounds CFS:

    http://www.twitlonger.com/show/n_1rkle9f
     
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  20. Bob

    Bob

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