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Time for ME Assoc to quit the UK Research Collaborative?
- Thread starter RustyJ
- Start date
worldbackwards
Senior Member
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- 2,051
I agree that this is worrying. But I'd also make the point that the ME Association have not been shy in fighting PACE in the media: when the time came to make a call on PACE, they rightly stayed well away whilst AfME compromised themselves and, to be honest, are well beyond saving in my opinion.
If the MEA were to start gagging themselves in this way then I might reconsider my view on this, which is that they're right to stay in and get what research funds and influence they can. But so far, I haven't seen that.
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The notes make very interesting reading, especially the definitions of 'harassment'. Do you think things have moved on since then or does the SMC still have useful (to them) influence within the UKRC - I'm wondering this in the light of the predominance of biomedical research presented at last months conference?
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March 2015. The SMC chose Psychiatrists and psychologists to give Expert Opinions for the Press Release about the Hornig/Lipkin study. The MEA wrote to Ed Sykes (SMC, on the CMRC) to ask a number of questions about the SMC handling of their press release. The SMC response does not encourage confidence that the SMC have changed in any way. The SMC response is a masterpiece of Crocodile Tears.
http://www.meassociation.org.uk/201...on-and-the-science-media-centre-3-march-2015/
The SMC's Ed Sykes wrote this gem (amongst others) in his response:
"Any organisation serious about CFS/ME should not care whether the causes of and treatments for an illness are physical, psychological, or a combination of the two. I find this pitting of psychological vs physical medicine artificial and damaging, as do the very many scientists we work with from both fields"
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March 2015. The SMC chose Psychiatrists and psychologists to give Expert Opinions for the Press Release about the Hornig/Lipkin study. The MEA wrote to Ed Sykes (SMC, on the CMRC) to ask a number of questions about the SMC handling of their press release. The SMC response does not encourage confidence that the SMC have changed in any way. The SMC response is a masterpiece of Crocodile Tears.
http://www.meassociation.org.uk/201...on-and-the-science-media-centre-3-march-2015/
The SMC's Ed Sykes wrote this gem (amongst others) in his response:
"Any organisation serious about CFS/ME should not care whether the causes of and treatments for an illness are physical, psychological, or a combination of the two. I find this pitting of psychological vs physical medicine artificial and damaging, as do the very many scientists we work with from both fields"
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- 1,446
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Even more recently the SMC asked Rona Moss-Morris to review the PACE Trial follow up.
http://www.sciencemediacentre.org/e...nts-for-cfsme-and-accompanying-comment-piece/
Science Media Centre
October 28, 2015
expert reaction to long-term follow-up study from the PACE trial on rehabilitative treatments for CFS/ME, and accompanying comment piece
A paper published in The Lancet Psychiatry reports results of a long-term follow-up study to the PACE trial for CFS/ME. The study has assessed the original trial participants’ health in the long-term, and asks whether their current state of health, two and a half years after entering the trial, has been affected by which treatment they received in the trial. These comments accompanied a briefing.
Prof. Rona Moss-Morris, Professor of Psychology as Applied to Medicine, King’s College London, said:
“I think this is a robust study with some limitations that the authors have been clear about. The original PACE trial published in 2011 showed that at one year people with CFS/ME who received either graded exercise therapy (GET) or cognitive behavioural therapy (CBT) in addition to standard medical care were significantly less fatigued than those who received standard care alone or those who received adapted pacing therapy. The authors concluded GET and CBT were moderately effective treatments for CFS. Now, moderately effective may not sound all that impressive until you consider that many of our commonly used pharmaceuticals for medical conditions have similar moderate treatment effects. When using pharmaceuticals as treatment, maintaining these effects may mean taking ongoing medicines. This study shows that even two years or more after treatment has completed, patients receiving GET and CBT sustain their clinical benefits. A small percentage of these patients accessed some further treatment, but even so, these sustained effects are impressive.
“Despite these impressive results, this isn’t time for complacency. Some patients do not benefit from the treatment. We need to do more to understand why. We also need to develop and tailor existing treatment to get larger effects. It is also important to note that the CBT and GET protocols used in PACE were developed specifically for CFS. They are not the same as CBT for depression and anxiety or the exercise training you may receive at a local gym. The therapies are based on a biopsychosocial understanding of CFS and the health care professionals in PACE received specific training and supervision in these approaches. This is an important note for commissioners as not all CBT and exercise therapies are equal. Specialist knowledge and competence in these therapies is needed to obtain these sustained treatment effects.”
‘Rehabilitative treatments for chronic fatigue syndrome: long-term follow-up from the PACE trial’ by Michael Sharpe et al. published in the Lancet Psychiatry on Wednesday 28 October 2015.
‘Chronic fatigue syndrome: what is it and how to treat?’ by Steven Moylan et al. published in the Lancet Psychiatry on Wednesday 28 October 2015.
Declared interests
Prof. Rona Moss-Morris: “Two authors of this study, Trudie Chalder and Kimberley Goldsmith, are colleagues of mine at King’s College London. I work with Trudie on other CFS work and with Kimberley on different work. I published a small study on GET in 2005. I am a National Advisor for NHS England for improving access to psychological therapies for long-term conditions and medically unexplained symptoms. Peter White (another author of the present study) is Chair of trial steering committee for an HTA NIHR-funded RCT I am working on with people with irritable bowel syndrome.”
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Even more recently the SMC asked Rona Moss-Morris to review the PACE Trial follow up.
http://www.sciencemediacentre.org/e...nts-for-cfsme-and-accompanying-comment-piece/
Science Media Centre
October 28, 2015
expert reaction to long-term follow-up study from the PACE trial on rehabilitative treatments for CFS/ME, and accompanying comment piece
A paper published in The Lancet Psychiatry reports results of a long-term follow-up study to the PACE trial for CFS/ME. The study has assessed the original trial participants’ health in the long-term, and asks whether their current state of health, two and a half years after entering the trial, has been affected by which treatment they received in the trial. These comments accompanied a briefing.
Prof. Rona Moss-Morris, Professor of Psychology as Applied to Medicine, King’s College London, said:
“I think this is a robust study with some limitations that the authors have been clear about. The original PACE trial published in 2011 showed that at one year people with CFS/ME who received either graded exercise therapy (GET) or cognitive behavioural therapy (CBT) in addition to standard medical care were significantly less fatigued than those who received standard care alone or those who received adapted pacing therapy. The authors concluded GET and CBT were moderately effective treatments for CFS. Now, moderately effective may not sound all that impressive until you consider that many of our commonly used pharmaceuticals for medical conditions have similar moderate treatment effects. When using pharmaceuticals as treatment, maintaining these effects may mean taking ongoing medicines. This study shows that even two years or more after treatment has completed, patients receiving GET and CBT sustain their clinical benefits. A small percentage of these patients accessed some further treatment, but even so, these sustained effects are impressive.
“Despite these impressive results, this isn’t time for complacency. Some patients do not benefit from the treatment. We need to do more to understand why. We also need to develop and tailor existing treatment to get larger effects. It is also important to note that the CBT and GET protocols used in PACE were developed specifically for CFS. They are not the same as CBT for depression and anxiety or the exercise training you may receive at a local gym. The therapies are based on a biopsychosocial understanding of CFS and the health care professionals in PACE received specific training and supervision in these approaches. This is an important note for commissioners as not all CBT and exercise therapies are equal. Specialist knowledge and competence in these therapies is needed to obtain these sustained treatment effects.”
‘Rehabilitative treatments for chronic fatigue syndrome: long-term follow-up from the PACE trial’ by Michael Sharpe et al. published in the Lancet Psychiatry on Wednesday 28 October 2015.
‘Chronic fatigue syndrome: what is it and how to treat?’ by Steven Moylan et al. published in the Lancet Psychiatry on Wednesday 28 October 2015.
Declared interests
Prof. Rona Moss-Morris: “Two authors of this study, Trudie Chalder and Kimberley Goldsmith, are colleagues of mine at King’s College London. I work with Trudie on other CFS work and with Kimberley on different work. I published a small study on GET in 2005. I am a National Advisor for NHS England for improving access to psychological therapies for long-term conditions and medically unexplained symptoms. Peter White (another author of the present study) is Chair of trial steering committee for an HTA NIHR-funded RCT I am working on with people with irritable bowel syndrome.”
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RustyJ
Contaminated Cell Line 'RustyJ'
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Very illuminating. So much for homeric references.
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The ME Association keep writing to the SMC, and the SMC continue brazenly being a PR company for PACE and psychosocial treatment for ME, both outside and inside the CMRC
It would save the ME Association a lot of letter writing if the SMC simply acted as if ME did not exist. They are not doing us any good at all by their actions and press releases, and do cause us harm.
The ME Association keep writing to the SMC, and the SMC continue brazenly being a PR company for PACE and psychosocial treatment for ME, both outside and inside the CMRC
It would save the ME Association a lot of letter writing if the SMC simply acted as if ME did not exist. They are not doing us any good at all by their actions and press releases, and do cause us harm.
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Esther12
Senior Member
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- 13,774
The SMC has repeatedly misrepresented CFS research findings to the press and there's no reason to be polite about this. I think that the MEA can be quite clear that the SMC is an untrustworthy organisation from within the CMRC, but they should be fighting against attempts by the SMC to insert themselves in the way that they have been doing. It's difficult for patients to judge what going on when the CMRC seems so secretive.
Research 1st
Severe ME, POTS & MCAS.
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From Wildcat's link to the Freedom of Information Act Request (FOIA) we can see two major points of interest for the ME patient community that remain unaddressed and need to be, if we are to move forward with confidence in not being 'done over' by the psychiatrists as we were with the last 'research' in the UK (CFS Working Party Report etc).
Dr Shepherd correctly states that the MRC has changed it's stance and that White and Wessely aren't even part of the group. This is progress, good. However, we need to review the omission (the FOIA shows us), that is of concern to many who know. Many don't know, and sadly the UK CFS Charities have remained silent on the matter..
Wessely is indeed, not on the MRC ME CFS resarch group in person, but appears to remain so in influence. It's the level of this influence, that concerns PWME, as they require their disease to be researched, not the condition they don't have (F48.0, CFS). F48.0 has already been looked at in PACE, so we don't need a repeat when attempting to promote F48.0 Chronic Fatigue beliefs of the researchers findings (non science) as applicable to CCC CFS, ME-ICC CFS, SEID or ME.
It is alarming to discover the FOIA request shows Dr Holgate (MRC) invited Wessely to select researchers he thought suitable despite Wessely believing ME is a ''belief in ME'' and not a neuroimmune disease along the lines of the IOM, of which Dr Holgate said in his latest speech, that the research initiative wants to replicate. It thus puzzled many, why Dr Holgate asked Wessely at all to be part of the group, even in his physical absence.
A problem is the names of these researchers chosen by Wessely, are redacted. Thus, we don't know if they are ME supporters or ME deniers. This is odd we aren't allowed to know, and makes the information, literally 'secret'.
A compromise, perhaps could be for the MRC to report back to the ME Association, what percentage of researchers of the UK ME CFS Research Collaborative are of the BPS theory of CFS (Mind-Body-Fatige), or of the Biomedical Fatigue opinion by releasing a full list of names, of better, make a website that shows the research in a transparent manner for the public to digest and make their own opinions up.
It's really not much to ask for the MRC to say look guys we have nothing to hide and the tally of biomedical vs pychological is this:
33 researchers.
20 of them think ME is ME and is a biomedical disease, along the lines of MS or Lyme disease.
10 of them think 'ME' is 'CFS' and that the mind is involved in maintaining symptoms of post viral fatigue event.
3 of them think ME doesn't exist, and CFS is a form of functional neurosis caused by faulty illness beliefs.
If the MRC were transparent, then no one would criticise. Arguably, it's the secrecy that drives patients into frustration that they aren't being given the whole truth, because it's deemed not for public consumption.
I would argue if the MRC is a public body, then it is for the public to know, and the best position is to be open about the way the research the public is paying for is going, rather than relying on sound-bites or reassurance to calm the public's suspicion we aren't being given the full story.
E.g. The MRC could say, when we say a 'CFS/ME research collaborative' we do (or do not) include funding psych research into F48.0 Chronic Fatigue (PACE) style research.
Simple details like this make a big difference in people getting behind an initiative or rejecting it because of apparent strange goings on, that might not be quite so strange if we had transparency and open and honest debate.
Another idea could be, to split the research into camps in terms of nomenclature.
Biomedical Fatigue we are calling 'ME' (Newton etc)
CFS BPS theory mind body (Crawley etc)
If things were clear, the published research papers could then be called CFS or ME and not 'CFS/ME'. (The CFS/ME moniker is incredibly confusing, and as PACE showed, can be manipulated by the media for political gain).
ME patients don't have a problem with psych theories of F48.0 CFS, they have a problem with theories then applying to their disease, which is G93.3 'ME' or 'CFS/ME' or 'ME/CFS', or SEID.
At least then we'd know what the deal is.
Dr Shepherd correctly states that the MRC has changed it's stance and that White and Wessely aren't even part of the group. This is progress, good. However, we need to review the omission (the FOIA shows us), that is of concern to many who know. Many don't know, and sadly the UK CFS Charities have remained silent on the matter..
Wessely is indeed, not on the MRC ME CFS resarch group in person, but appears to remain so in influence. It's the level of this influence, that concerns PWME, as they require their disease to be researched, not the condition they don't have (F48.0, CFS). F48.0 has already been looked at in PACE, so we don't need a repeat when attempting to promote F48.0 Chronic Fatigue beliefs of the researchers findings (non science) as applicable to CCC CFS, ME-ICC CFS, SEID or ME.
It is alarming to discover the FOIA request shows Dr Holgate (MRC) invited Wessely to select researchers he thought suitable despite Wessely believing ME is a ''belief in ME'' and not a neuroimmune disease along the lines of the IOM, of which Dr Holgate said in his latest speech, that the research initiative wants to replicate. It thus puzzled many, why Dr Holgate asked Wessely at all to be part of the group, even in his physical absence.
A problem is the names of these researchers chosen by Wessely, are redacted. Thus, we don't know if they are ME supporters or ME deniers. This is odd we aren't allowed to know, and makes the information, literally 'secret'.
A compromise, perhaps could be for the MRC to report back to the ME Association, what percentage of researchers of the UK ME CFS Research Collaborative are of the BPS theory of CFS (Mind-Body-Fatige), or of the Biomedical Fatigue opinion by releasing a full list of names, of better, make a website that shows the research in a transparent manner for the public to digest and make their own opinions up.
It's really not much to ask for the MRC to say look guys we have nothing to hide and the tally of biomedical vs pychological is this:
33 researchers.
20 of them think ME is ME and is a biomedical disease, along the lines of MS or Lyme disease.
10 of them think 'ME' is 'CFS' and that the mind is involved in maintaining symptoms of post viral fatigue event.
3 of them think ME doesn't exist, and CFS is a form of functional neurosis caused by faulty illness beliefs.
If the MRC were transparent, then no one would criticise. Arguably, it's the secrecy that drives patients into frustration that they aren't being given the whole truth, because it's deemed not for public consumption.
I would argue if the MRC is a public body, then it is for the public to know, and the best position is to be open about the way the research the public is paying for is going, rather than relying on sound-bites or reassurance to calm the public's suspicion we aren't being given the full story.
E.g. The MRC could say, when we say a 'CFS/ME research collaborative' we do (or do not) include funding psych research into F48.0 Chronic Fatigue (PACE) style research.
Simple details like this make a big difference in people getting behind an initiative or rejecting it because of apparent strange goings on, that might not be quite so strange if we had transparency and open and honest debate.
Another idea could be, to split the research into camps in terms of nomenclature.
Biomedical Fatigue we are calling 'ME' (Newton etc)
CFS BPS theory mind body (Crawley etc)
If things were clear, the published research papers could then be called CFS or ME and not 'CFS/ME'. (The CFS/ME moniker is incredibly confusing, and as PACE showed, can be manipulated by the media for political gain).
ME patients don't have a problem with psych theories of F48.0 CFS, they have a problem with theories then applying to their disease, which is G93.3 'ME' or 'CFS/ME' or 'ME/CFS', or SEID.
At least then we'd know what the deal is.
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The MRC did not fund any biomedical ME research at all until 2011. The psychosocial researchers do not suffer from lack of research funds and never have, they are overflowing with funding for endless psychosocial ME research studies.
The MRC did not fund any biomedical ME research at all until 2011. The psychosocial researchers do not suffer from lack of research funds and never have, they are overflowing with funding for endless psychosocial ME research studies.
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RustyJ
Contaminated Cell Line 'RustyJ'
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- Mackay, Aust
To me, this is the point which is critical, yet always dodged by MEA: The real problem isn't PACE, it's the Wessely/psychs. To rail publicly against PACE, yet tacitly support the structures which allow the Wessely group to pull the strings, appears misguided, at best. If this group didn't have so much sway, PACE would cease to exist.
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- 86
- Location
- East of England
As you say the SMC is simply PR for the money spinning psychosocial approach (insurance, DWP, NHS fatigue clinics). Why should they change? It's working out very nicely for them, thank you very much, although sadly not for patients. Perhaps what will happen is that some of the more high profile biomedical researchers will also object to the SMC spin and they will have their wings clipped in one way or another.
Especially as the biomedical evidence builds up and the stance of the psychosocial school becomes increasingly untenable - although no doubt the SMC has an 'exit strategy' already prepared based on something like 'we acted in good faith on the best available evidence at the time and all we wanted to do is to help those poor PWME'.
charles shepherd
Senior Member
- Messages
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Research Collaborative Board Members:
Dr Neil Abbott (MERUK)
Sonya Chowdhury (AfME)
Dr Esther Crawley (Reader in Child Health, Bristol University)
Dr Zoe Gotts (post-doctoral health researcher: sleep research, University of Northumbria)
Professor Stephen Holgate (Immunopharmacology, University of Southampton)
Professor Peter Little (Primary Care Research - University of Southampton)
Dr Alastair Miller (Infectious diseases, University of Liverpool)
Professor Julia Newton (Dean of Clinical Medicine, Newcastle University)
Professor Hugh Perry (Experimental Neuropathology, University of Southampton and Chair of Neurosciences Board at MRC)
Dr Charles Shepherd (MEA + other appointments)
Mary Jane Willows (AYME)
Perhaps those people on PR who want the MEA to quit (which we are NOT going to do) could suggest which ME/CFS charity would then take our place on the Board? As there would then be a vacancy on the Board…...
Dr Neil Abbott (MERUK)
Sonya Chowdhury (AfME)
Dr Esther Crawley (Reader in Child Health, Bristol University)
Dr Zoe Gotts (post-doctoral health researcher: sleep research, University of Northumbria)
Professor Stephen Holgate (Immunopharmacology, University of Southampton)
Professor Peter Little (Primary Care Research - University of Southampton)
Dr Alastair Miller (Infectious diseases, University of Liverpool)
Professor Julia Newton (Dean of Clinical Medicine, Newcastle University)
Professor Hugh Perry (Experimental Neuropathology, University of Southampton and Chair of Neurosciences Board at MRC)
Dr Charles Shepherd (MEA + other appointments)
Mary Jane Willows (AYME)
Perhaps those people on PR who want the MEA to quit (which we are NOT going to do) could suggest which ME/CFS charity would then take our place on the Board? As there would then be a vacancy on the Board…...
Large Donner
Senior Member
- Messages
- 866
Dr Shepherd,
Was Carmine Pariante ever part of this group and if so when did he leave? Can you tell us why Peter White is no longer part of the group and also why Esther Crawley is still there.
Was Carmine Pariante ever part of this group and if so when did he leave? Can you tell us why Peter White is no longer part of the group and also why Esther Crawley is still there.
- Messages
- 1,446
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How is the CMRC (MRC ME Research Collaborative) going to handle the Science Media Centre? Its just not viable that the CMRC says it wants to increase biomedical ME Research, while the CMRC member, the SMC, continues to favour psychosocial research in its press releases and (for example), choice of Experts for expert Views of research ? It was first stated that the SMC representative would be merely 'an observer'. But that is not the case. It looks like the CMRC is being 'played' by the Science Media Centre.
This is a massively important issue. It does not help the credibility of the CMRC (with a patient population that has been messed about for decades) that the SMC is on the inside of the MRC ME Research Collaborative.
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How is the CMRC (MRC ME Research Collaborative) going to handle the Science Media Centre? Its just not viable that the CMRC says it wants to increase biomedical ME Research, while the CMRC member, the SMC, continues to favour psychosocial research in its press releases and (for example), choice of Experts for expert Views of research ? It was first stated that the SMC representative would be merely 'an observer'. But that is not the case. It looks like the CMRC is being 'played' by the Science Media Centre.
This is a massively important issue. It does not help the credibility of the CMRC (with a patient population that has been messed about for decades) that the SMC is on the inside of the MRC ME Research Collaborative.
.
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Large Donner
Senior Member
- Messages
- 866
Wasn't the psychiatrist David Nutt also involved in this group?
charles shepherd
Senior Member
- Messages
- 2,239
Mea culpa - it's late and it has been a hectic day......
I had forgotten about three additions that were made at the last Board meeting
From our last Minutes:
7. Membership of the Board
SH outlined that CP and ME have agreed to join the Board. There is one other individual that the Board previously agreed SH should approach; the outcome of this is still unknown. Chris Ponting has also agreed to join the Board. SH to write to formally welcome them. These new members will really strengthen the Board covering a range of disciplines.
Updated Research Collaborative Board Members:
Dr Neil Abbott (MERUK)
Sonya Chowdhury (AfME)
Dr Esther Crawley (Reader in Child Health, Bristol University)
Dr Mark Edwards (Senior Lecturer at the Sobell Department of Motor Neuroscience and Movement Disorders at the UCL Institute of Neurology and Honorary Consultant Neurologist at the National Hospital for Neurology and Neurosurgery)
Dr Zoe Gotts (post-doctoral health researcher: sleep research, University of Northumbria)
Professor Stephen Holgate (Immunopharmacology, University of Southampton)
Professor Peter Little (Primary Care Research - University of Southampton)
Dr Alastair Miller (Infectious diseases, University of Liverpool)
Professor Julia Newton (Dean of Clinical Medicine, Newcastle University)
Professor Carmine Pariante (Professor of Biological Psychiatry, KIngs College Hospital)
Professor Hugh Perry (Experimental Neuropathology, University of Southampton and Chair of Neurosciences Board at MRC)
Professor Chris Ponting (Professor of Genomics, University of Oxford)
CV: http://www.dpag.ox.ac.uk/research/ponting-group
Dr Charles Shepherd (MEA + other appointments)
Mary Jane Willows (AYME)
Professor Peter White did not make a statement regarding his resignation from the Board
Dr Esther Crawley has been a member of the Board from the start
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charles shepherd
Senior Member
- Messages
- 2,239
I have already made it clear that I am very unhappy with the way in which an SMC press conference to promote an item of ME/CFS research has yet again led to some very inaccurate and unhelpful coverage of ME/CFS. I have communicated my concerns to members of the Board and to the SMC.
charles shepherd
Senior Member
- Messages
- 2,239
Professor David Nutt is carrying out the MRC funded sleep study (assessing the use of sodium oxybate to improve slow wave sleep) at Imperial College, London
He is not a member of the Board of the UKRC
He has never been a member of the Board
nasim marie jafry
Senior Member
- Messages
- 129
I'm with Charles on this. There are really good people in the Collaborative, you just have to ignore the dodgy BACME ones (and I did at CMRC2015). Also, I *fully* understand the concerns about AfME, but I really like Sonya, having met her twice now. I love her energy. I imagine she and I don't agree on everything, but tbh I feel uneasy when I see her being dissed. Moreover, she is not Action for ME, she is not their history.
As an aside: having for the first time just seen a clip of a news prog in 1996 when Simon Wessely told the UK that ME was now known as CFS and had a psychological factor, I am amazed we have any biomedical initiatives at all. My 1983 illness, ME, demolished, just like that! This crystallises, of course, why UK journalists today have no idea at all what ME is and why we are in the state we are in. Sorry if this is off topic, although it's not - I guess everything is related here - but I really need to post this wee clip of Simon changing the narrative - I saw it on Twitter today via @MEawareness
I want to know who all those people are around the table discussing this CFS label!
As an aside: having for the first time just seen a clip of a news prog in 1996 when Simon Wessely told the UK that ME was now known as CFS and had a psychological factor, I am amazed we have any biomedical initiatives at all. My 1983 illness, ME, demolished, just like that! This crystallises, of course, why UK journalists today have no idea at all what ME is and why we are in the state we are in. Sorry if this is off topic, although it's not - I guess everything is related here - but I really need to post this wee clip of Simon changing the narrative - I saw it on Twitter today via @MEawareness
I want to know who all those people are around the table discussing this CFS label!