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Time for ME Assoc to quit the UK Research Collaborative?

Discussion in 'Advocacy Projects' started by RustyJ, Nov 4, 2015.

  1. K22

    K22

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    I think MRC are successfully doing what ancien regimes have always done - offer something and people will be so afraid of going back to nothing that they accept it, even if that "something" falls well below what people need/deserve.
     
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  2. Esther12

    Esther12 Senior Member

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    While I have been supportive of the CMRC, this is very worrying imo.

    http://forums.phoenixrising.me/inde...ly-understand-chronic-fatigue-syndrome.41131/

    I think that patients should be informed of when advocacy groups are being told they must apologise or leave. I've not seen any mention of this in CMRC minutes - is important information being edited out.

    @charles shepherd : are you even allowed to tell us what behaviour people were told they must apologise for?

    Would the MEA be allowed to promote the current petition to have misleading claims about the PACE trial's results retracted?

    Is @Jonathan Edwards right to say “the harassment referred to is legitimate criticism of bad science.”

    "patient groups are banned from whipping up a media frenzy over research findings."

    What about the SMC? What about researchers?

    As things are publicly presented to patients the CMRC is not great. It increasingly seems that we're only getting half the picture.
     
    Last edited: Nov 10, 2015
  3. user9876

    user9876 Senior Member

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    Given the recent coverage in the telegraph and mail whipped up by the SMC and PACE this is not accurate. Even the harassment claims appear to be toned as whipping up a media frenzy to lead to disrespect for ME patients (rather than any individuals involved in inappropriate behaviour). I feel these approaches would be considered inappropriate against any other minority group.

    Its not just stories like the telegraph its things like Oxford basically misleading the press over claims that CBT and GET work best in the long run even though their work showed a null result.
     
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  4. Wildcat

    Wildcat

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    Professor Stephen Holgate first publicly aired an intention to create a 'Medical Research Council Interdisciplinary Expert Group on M.E.' and publicly stated 'that a collaborative needs to be formed from charities [sic], the MRC and researchers' way back in July 2009.


    This article creates the impression that Professor Holgate's actions in creating the MRC Collaborative on ME (CMRC) was a kind of rapid reaction response to the 'shock horror' 'harassment' media reports of 2011.

    But that is simply false.




    Professor Stephen Holgate quoted in 'The Battle to Finally Understand Chronic Fatigue Syndrome'
    http://gizmodo.com/the-battle-to-finally-understand-chronic-fatigue-syndro-1741658406

    2015 media article:

    'Following the 2011 PACE trial controversy, hostilities between researchers and patients in the UK were so fierce it was unclear how to move forward at all. The situation was desperate, says Stephen Holgate, an immunopharmacologist at Southampton General Hospital. He had never studied CFS-ME before, but believed he could bring some much-needed impartiality to the field.
    He knew the community had to start afresh. He wooed several charities to join a new CFS-ME research collaborative, and secured more than £1.6m from the Medical Research Council to fund five grants. The collaborative wants to raise the profile of CFS-ME research, talk to patients and professionals about priorities, and review the UK and international research landscape.'







    2009 report on the RSM 'Medicine and me' conference of July 2009. Commentary on Stephen Holgates talk.

    https://meagenda.wordpress.com/2009/07/25/rsm-medicine-and-me-event-commentary-by-john-sayer/

    RSM “Medicine and me” event: Commentary by John Sayer (Chair, M.E. Support-Norfolk)



    Royal Society of Medicine “Medicine and me” event on ME and CFS held Saturday, 18 July 2009


    'Prof Stephen Holgate (University of Southampton) spoke on “ME: a research orphan for too long”. He said we need research because too little is known [sic] and said that the history of M.E. has dictated a mental health approach, it being perceived as having evolved from neurasthenia [‘nervous debility’]. He said, “It’s a system disorder” and that ‘omics’ should be used – i.e. genomics, proteomics and metabolomics. He referred to ‘ME/CFS’ as a “condition or conditions (25 or more)”; that the government won’t allow integrated research. He is putting together a workshop in November (the Medical Research Council Interdisciplinary Expert Group on M.E.), a systematic review deciding priorities, saying that a collaborative needs to be formed from charities [sic], the MRC and researchers, and that there is a need to ‘join up’ patients from clinics/centres.

    .
     
    Last edited: Nov 10, 2015
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  5. Wildcat

    Wildcat

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    @charles shepherd . Can Professor Holgate, the CMRC Chair Dr Esther Crawley, the Medical Research Council, Dr Charles Shepherd, or any member of the UKRC/CMRC please explain and justify the statements in this article to the ME patient population? And if Professor Holgate believes he has been misquoted, how is he going to rectify the damage to the ME population from this grotesque article?

    This sounds like Professor Holgate and his big stick threatening the CMRC members, threatening the charities, and threatening 'patient groups' with the CMRC 'gagging clause' that has caused so much concern in the ME patient population, and great concern for the ME charities who decided NOT to sign up to be members of the CMRC Collaborative.

    The worst concerns about the inclusion of a 'gagging clause' in the UK CMRC Charter (that members have to sign up to) are being realised in this article.




    http://gizmodo.com/the-battle-to-finally-understand-chronic-fatigue-syndro-1741658406

    ' His [Professor Stephen Holgate] approach sounds a lot like what Jason wants in the USA: a collective of medical practitioners, researchers, patient groups and funders working to strategically improve the evidence base for this disease. Unlike Jason’s emphasis on transparency and patient participation, however, the secret to the UK collaborative’s success, according to Holgate, is a membership charter that forbids harassment or abuse of researchers. In effect, patient groups are banned from whipping up a media frenzy over research findings.

    The charter has already been tested a couple of times, says Holgate, who gave the aggressors a choice: apologise or leave. He’s even suggested that he’ll disband the collaborative completely if all parties don’t play by the rules.

    “We set up the charter to protect researchers; anybody who joins us can’t abuse or upset that trust,” he says. “There is power in this to stop silly publicity which is quite destructive.”


    .
     
    Last edited: Nov 11, 2015
  6. Research 1st

    Research 1st Severe ME, POTS & MCAS.

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    This apparent do what we say or else attitude regarding the CFS research group setup to any criticism by 'members' of the group, is quite narrow minded and clearly not an optimal situation. (Unfiltered debate is required in science), stifling debate maintains the modus operandi currently in place so no real progress can be achieved (who would benefit from this?).

    Naturally you can't rationally 'debate' if an established WHO certified disease (ME), is maintained by an individuals beliefs in it (if the WHO to this day, 46 years later still supports the disease ME) and the IOM supports the concept of SEID - which critically, rejects F48,0 Chronic Fatigue and CBT/GET to treat SEID.

    So you need to split 'CFS/ME' patients up using signs of the disease (ME) and tests (easily done). nb: many diseases don't have definitive tests, and many conditions test findings overlap with other conditions.
    E.g. Lupus. So we don't need a unique biomarker to make progress, progress can happen now.

    It's best to have subsets of ME designated (as they are in MS) and keep F48.0 for the MRC theorists to play with. This was obvious from day one, and not allow F480 fatigue anywhere near G93.3 syndromes for safety reasons (again, as was obvious from day one).


    Three simple subsets, to overcome the self imposed research impasse


    Subset 1: Psych Chronic Fatigue F48.0 CBT/GET.

    Subset 2: Organic moderate ME/SEID that doesn't meet severity criteria for ME, but may do if the patient has the progressive form, or slow onset form. E.g Subset 2.1 Subset 2.2.

    Subset 3: Severe ME with MS/Neuroborreolosis type presentation involving diagnosed nerve damage, dysautonomia, seizures, newly acquired autoimmune diseases etc.

    Subset 4: Primary Progressive ME including paralysis, incontinence, hormone failure, and possible fatal outcome.


    With subsets in place to fit the illness presentation subset (as it is with MS), subset 2 -4 can then stay well away from Subset 1 in terms of research, and everyone's happy. The MRC can fund CBT/GET all they want but the 'findings' then won't hurt those with organic disease (moderate, severe, very severe ME). That's a win win situation for all involved, including the psych lobby.

    To enable this, simply retire the term CFS/ME and ME/CFS used in the DOH or the confusion, misdiagnosis and harm to patients with incorrect treatments remain in place. It's that simple to evoke positive change.Then there is no problem at all in terms of group unity, progress and study design.

    The key benefit from subsets of ME rather than 'CFS/ME' (including F48.0 psych CF), is the effect of a hypothesis (when studying patients) would be far less heterogeneous in nature, and thus confidence in the findings increases. With this in place, drugs companies are more likely to invest, and thus patients can be helped sooner by becoming less disabled. Easy. But it takes guts to change a system powerful people are used to, who won't let go of the magnetic baton.

    Currently the most severely ill patients are the minority most in peril, within a minority disease (ME), with a generalised unexplained tiredness syndrome (CFS). This is a woefully inadequate situation to leave in place, to solve the problem of 'Chronic Fatigue' (CF is not problem for PWME), and so we are reduced to hearing about infighting that if you want your subset to be researched (by criticising the majority subset that prevents your subset gaining ground),then you must apologise or get throw out.

    That wont' work in a democracy (would work well in communism), but creating subsets of ME (away from F48,0 CF) will work, and restore a sensible plan of action at the same time.
     
  7. Yogi

    Yogi Senior Member

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    What about the Science Media Centre (who belong to the CMRC) and the PACE trial PI's who spun the results of that trial in the media with 'positive thinking' and 'exercise' with images of people weightlifting and numerous pictures of people riding cycles in the park. Did Holgate stop this publicity or is only big enough to be able to stand up to sick and disabled patients?

    He wants to protect researchers but what about patients and protecting them from the harassment that they will receive from the trivialisation of their disease due to pace trial images and misleading articles.
     
  8. Sean

    Sean Senior Member

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    After the null result in the 2.5 year follow-up (including that adding CBT and/or GET to APT or SMC makes no difference), and especially given the way it was spun in both the formal paper and the public relations media blitz that accompanied it, we are no longer obliged to tolerate any more excuses or delays from the medical establishment, especially in the UK.

    They can start by demanding that the PACE team get the 5 year follow-up paper done and published as their top priority. My bet is not only that CBT and GET will come out performing no better than APT or SMC, but indeed that APT and SMC are likely to do better in the longer run.
     
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  9. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

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    https://www.dropbox.com/s/92m09l9tq55pihh/Behind the Scenes - Research Collaborative.pdf


     
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  10. Wildcat

    Wildcat

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    These statements and actions of members of the UK CMRC deviously aligns sick ME sufferers with "Militant" violent animal rights protestors. With no evidence whatsoever. Members of the UK MRC Collaborative have engaged with a government contractor, Support4rs, to further treat and portray UK ME sufferers as violent. With no evidence whatsoever.



    BEHIND THE SCENES:
    SETTING UP THE UK CFS/ME RESEARCH COLLABORATIVE (UK CMRC)

    'A series of Action Points include:

    * 'Support4rs - Work with Peter White and Simon Wessely to develop

    resources for dealing with harassment'


    ~~~~~~~~~~~~~~~~~~~~~


    The Support4rs that is to 'work with Peter White and Simon Wessely to develop resources for dealing with so called "harassment" is:

    http://www.support4rs.com/

    'A Preferred supplier to the Department for Business, Innovation & Skills, a department of the UK Government'

    'Contracted to provide advice and a support infrastructure with regard to Animal Rights protest, for the Public Research Institutions, Universities and Medical Research Charities, we work collaboratively with the leading research facilities throughout the UK, drawing upon the experience of each for the benefit of all.'

    'We Assess'
    We consistently assess the current climate of animal rights protest and its impact upon individuals, organisations and the wider research sector.

    We Assist
    We assist with providing an understanding of the threat of animal rights and measures which may be employed to mitigate the potential impact.

    We Advise
    We give real time advice and support during adverse activity from outset to resolution.



    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~




    An example of UK reporting on a section of the Animal Rights Protesters ...... 'Detectives are already investigating links between ten nail bombs attacks in the Midlands and the North of England with the anti-vivisection movement.'


    http://www.dailymail.co.uk/news/article-22387/Animal-rights-protesters-rampage.html

    'During a six-hour synchronised blitz, masked protesters campaigning for the closure of a controversial drug-testing company smashed up laboratories and surrounded the homes of company directors.

    Last night as firms counted the cost of the damage, more than 80 suspects were under arrest.

    The lightning attacks hit clients of Huntingdon Life Sciences, the Cambridgeshire based animal testing laboratory which protesters brought to the brink of financial ruin last month.

    They were said to be 'fired up' following an 11th-hour rescue package for the laboratory.

    Police are increasingly concerned about the surge in militant animal rights protests - and the way they are being carefully orchestrated.

    Detectives are already investigating links between ten nail bombs attacks in the Midlands and the North of England with the anti-vivisection movement.


    Yesterday's mayhem was organised by SHAC - Stop Huntingdon Animal Cruelty - via the group's Internet website and billed as 'National Demo Alert'.

    Last night protesters threatened to escalate their activities until the firms withdrew contracts from HLS.'
    .
     
    Last edited: Nov 12, 2015
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  11. Sidereal

    Sidereal Senior Member

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    This is quite likely. If so, we are likely to either never see these data in print or they might end up buried in some low impact journal years from now, never to be read or cited by anyone, and certainly with no front-page national newspaper coverage.
     
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  12. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

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    *Tail wag*
     
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  13. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch

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    "the secret to the UK collaborative’s success, according to Holgate, is a membership charter that forbids harassment or abuse of researchers. In effect, patient groups are banned from whipping up a media frenzy over research findings.
    The charter has already been tested a couple of times, says Holgate, who gave the aggressors a choice: apologise or leave. He’s even suggested that he’ll disband the collaborative completely if all parties don’t play by the rules.

    “We set up the charter to protect researchers; anybody who joins us can’t abuse or upset that trust,” he says. “There is power in this to stop silly publicity which is quite destructive.”



    I find these statements by Prof Holgate (assuming he has been quoted accurately) very, very disturbing. Beyond disgraceful.

    The patient organizations who are full members of the UK CMRC should, in my opinion, also find them disturbing.


    Suzy
     
  14. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch

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    If Prof Holgate did make these statements and has not been misquoted by the journalist, if these alleged transgressions by selected of the patient organizations that are full members of the UK CMRC are considered worthy of being placed in the media by Holgate, why were they not minuted at the time in order that the public with a stake in the UK CMRC can scrutinize what was said, by whom, and the manner in which this was dealt with, at the time or subsequently?

    Suzy
     
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  15. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

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    Remember Wessely's both sides of the Atlantic blog, well I don't think it was just about PACE.

    If the paymasters are a tier above Wessely, eg those involved in Welcome Trust, SMC, MRC etc, then he could have been alluding to other developments both sides of the Atlantic.

    What else happened at the same time as the Tuller story, and Wessely's blog? How about the NIH move? What if we have got it wrong, that the NIH wasn't riding to our rescue, but aligning even more closely with the UK. Remember Wessely's blog came out after the Tuller piece, so he already knew PACE was on the nose.

    Without a doubt he already knew about the data release from ICO. So what was it all about?

    I think the model, CMRC, has been adopted by the NIH.
     
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  16. Scarecrow

    Scarecrow Revolting Peasant

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    I tend to agree with you but I don't believe that's a bad thing.

    One crucial difference is that the CMRC doesn't have access to funds. They can attract researchers, nurture them and and assist with applications for grants but they have no money to fund research.

    The NIH could make progress far more quickly with an appropriately directed research effort.
     
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  17. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch

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    So, it only needs to be "negative towards specific research"...


    [​IMG]
     
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  18. Wildcat

    Wildcat

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    Gagged.
    .
     
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  19. searcher

    searcher

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  20. rosamary

    rosamary Senior Member

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    'Following the 2011 PACE trial controversy, hostilities between researchers and patients in the UK were so fierce it was unclear how to move forward at all. The situation was desperate, says Stephen Holgate, an immunopharmacologist at Southampton General Hospital. He had never studied CFS-ME before, but believed he could bring some much-needed impartiality to the field.'
    ..............

    I am sure his name is on that research Johnathan Kerr did on seven subgroups published around about 2007. I think Prof Holgate over-saw it.

    (Actually I like him. And can remember when he was criticised in the Times by someone...,probably one of the captain of the titanic's mates, when he was sticking up for ME patients years back).


     

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