JoanDublin
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Just wondering if you missed the bit where he said this was good quality research?
Petition: Opposing MEGA
- Thread starter AndyPR
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Just wondering if you missed the bit where he said this was good quality research?
charles shepherd
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There is an element of people on ME/CFS internet discussion forums preaching to the converted, especially when it comes to a topic like this where some people have very strong and fixed viewpoints
For example, almost all of the traffic on PR is against the MEGA study and the CMRC
But to what extent this reflects wider public opinion is uncertain
At the MEA we receive a huge amount of feedback from both members and non members on the phone, by email to ME Connect, on social media etc
But the number of calls and emails that we have had over the past few weeks regarding MEGA has been very small indeed
What concerns our members is practical management, getting a diagnosis, DWP benefit disputes, lack of social support
I have written a feature on MEGA for the November issue of our magazine and asked our members to let us know what they think about MEGA - which will obviously help to influence our decision when it comes to deciding whether we are happy to support the protocol that will be used in the research grant application bid for funding
Because at the moment we just don't know what the majority of people feel about MEGA…….
charles shepherd
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That is NOT correct if you are referring to his position on ME/CFS research
Professor Hugh Perry works in experimental neuropathology and is Chairrman of the MRC Neurosciences Board
I have obviously had many discussions with Hugh about the neuropathology of ME/CFS, post-mortem research, the use of neuroimaging studies etc etc
Hugh is extremely well informed about neurological research into ME/CFS, where it should be going, and he definitely wants to see much more research into neuropathology taking place
Hence the MRC highlight notice asking for research applications covering neuropathology
Hugh is not only a neuroscientist - he genuinely wants to see good quality research into the neuropathology of ME/CFS
He is one of the reasons why I am a member of the Board of the CMRC
Graham
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Hi Charles:
Yes, my comment was over-simplified, but I believe the essence is correct.
I'm not knocking what you have been doing at all. The whole situation is complex and deeply entangled, and whatever you do, you cannot satisfy everyone. I know you have been fighting on our side for a long time and am truly grateful for that, and much goes on in the background that we do not know about. But I am a pragmatist, and the facts are that over the last 35 or more years, the only clearly biomedical research that the MRC funded was for those 5 studies after the Early Day Motion. In my opinion they were "small" studies, in the sense that we need a proper, large-scale attempt to find diagnostic markers. These would not have delivered anything that was powerful enough to influence medical decisions: they may have suggested further investigations, but we have a plethora of studies that warrant further, large-scale investigation.
Back in 2001, when I was diagnosed, my specialist commented on the difficulty then of attracting specialists or researchers into the field because the psychological interpretation of ME/CFS had overwhelmed everything. The Gibson Inquiry listed three senior researchers who they knew had had biomedical research applications turned down. Jonathan Kerr reported that his applications typically came back with scores of 9, 8 and 3. Anyone who knows anything about assessment would worry about that: you don't even get that much disagreement on scoring in Strictly - certainly it should never happen in professional assessments.
In America, NIH have set aside more this year towards research into ME/CFS: $15 million instead of the $5 million spent in 2011, and apparently intend to target it properly this time (very little, if any, of the money ever found its way into biomedical research). Their annual budget for research into HIV/Aids is $3000 million. It would take 200 years for ME research to reach one year of that budget, and we know how long it took to get to grips with Aids. Here in the UK we do not spend our equivalent proportion on medical research: but we have the Wellcome Foundation with massive spending power - it doesn't appear to have spent anything on biomedical research into this illness.
The CMRC has made great efforts to attract "biomedical" researchers, but in the meantime, a steady procession of funding goes towards the behavioural researchers, and their supporters figure prominently in the CMRC. What message is that conveying?
There were only three UK names on the letter to The Lancet expressing concern about the PACE trial: you, Jonathan Edwards and William Weir. The hierarchy continues to build a wall around the behaviourists, blocking any public criticism. It has been a real struggle to get even a tiny amount of data released so that patients could make their case. Alem Matthees had to go to the states to find researchers with statistical skills who were prepared to confirm his analysis of that data. They were very impressed. But here in the UK, can you name me one statistician prepared to break ranks?
There is no actual evidence that the MRC has shifted its attitude: there is no evidence that the NIHR, which hasn't funded any biomedical research into ME/CFS, has changed its attitude. Statements are made, but nothing has changed.
But what really bothers me most is that, not only does it seem that some members of the CMRC are surprised by the distrust of patients, but they still do not realize that their continued support of the behaviourists, and the failure of the medical research world to react to the valid criticisms of the PACE trial are the key factors in persuading researchers that there is no big future in ME/CFS research unless it is behavioural. In the meantime, charities and crowd-sourcing are successfully supporting biomedical research. It can't be a fear of angry patients that is creating that difference.
I run a small local ME support group, and no-one, including me, had signed the OMEGA petition until the BBC interview with Esther Crawley. Then, realizing that she was a prominent part of the MEGA appeal, they signed it. Look at the way the numbers shot up, and you will find that this was a widespread reaction. They are horrified that PACE is now being directed at children: horrified that lessons have not been learned.
As I said, I genuinely do appreciate what you are doing for us, and I genuinely do understand how difficult it is. But as long as the hierarchy pretend that all is well with PACE (and for that matter, many other studies), that they represent good scientific methods, and that those researchers have earned serious respect for their skills, it's not only the patients who will continue to be suspicious.
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@charles shepherd wrote:
"There is an element of people on ME/CFS internet discussion forums preaching to the converted, especially when it comes to a topic like this where some people have very strong and fixed viewpoints. For example, almost all of the traffic on PR is against the MEGA study and the CMRC"
That was not always the case, was it. Two or three years ago there was much, much, wider support for the CMRC on PR, support which has drained away.
So what has happened to turn so many people off, people who were previously broadly supportive of the CMRC, who saw it as a source of likely research progress and hope?
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@charles shepherd wrote:
"There is an element of people on ME/CFS internet discussion forums preaching to the converted, especially when it comes to a topic like this where some people have very strong and fixed viewpoints. For example, almost all of the traffic on PR is against the MEGA study and the CMRC"
That was not always the case, was it. Two or three years ago there was much, much, wider support for the CMRC on PR, support which has drained away.
So what has happened to turn so many people off, people who were previously broadly supportive of the CMRC, who saw it as a source of likely research progress and hope?
.
.
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daisybell
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The CMRC should be willing to push info out to the media on the recent advances in biomedical understanding of ME and the need for more researchers. If they aren't, then that is a deafening signal.
Also, I wonder how much EC is playing to her gender in getting support from the other members of the collaborative..... I may be well off-target, but given how she has played the 'game', I wouldn't put anything past her. She appears to be highly manipulative and as a woman, I know how well some women can play this game.....
Also, I wonder how much EC is playing to her gender in getting support from the other members of the collaborative..... I may be well off-target, but given how she has played the 'game', I wouldn't put anything past her. She appears to be highly manipulative and as a woman, I know how well some women can play this game.....
Perhaps you should cast your mind back to his speech at A4ME's Severe ME Synopsium. He made it clear he thinks it needs substantially more funding.
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Keith Geraghty
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The sustained nature of these vexatious complaints to my host institution has provoked me to put my story in the public domain, sharing it here on PR with the patient community and patient advocates.
I may suffer even more negative consequences just for writing an account of my experience over the past two years, but I feel I have no choice but to stand up against bullying and harassment. What is ironic, is that the PACE team claim patients have harassed them, yet their claims were not substantiated in the Information Tribunal.
I am doing fine, I appreciate every comment of support, I dont need or want any accolades, I just think its important the patient community are given accurate information about many things - I am very busy with my work and hope to have some good papers on the way, and a very interesting project starting in 2017 looking at neuro-cognitive function in ME/CFS
I may suffer even more negative consequences just for writing an account of my experience over the past two years, but I feel I have no choice but to stand up against bullying and harassment. What is ironic, is that the PACE team claim patients have harassed them, yet their claims were not substantiated in the Information Tribunal.
I am doing fine, I appreciate every comment of support, I dont need or want any accolades, I just think its important the patient community are given accurate information about many things - I am very busy with my work and hope to have some good papers on the way, and a very interesting project starting in 2017 looking at neuro-cognitive function in ME/CFS
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When I spoke with Tony of the MEA a few weeks back, he said the MEA had had hundreds of calls about MEGA. A time when you took a similar stance about there not being many calls.
Esther12
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I've not been able to keep up with this thread, but just wanted to saying 'thank-you' to @Jonathan Edwards for his response to Holgate. I do hope it's properly read and responded to by those at the CMRC and MRC: http://forums.phoenixrising.me/index.php?threads/petition-opposing-mega.47466/page-41#post-786478
batteredoldbook
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You know, I do have problem with the CMRC as a "big tent". But don't get me wrong: I am in favour of a far broader grouping of researchers, advocates and patients than most, and although I can come across as challenging, in reality I want nothing more than medicine, patients and researchers to find a way to work together.
So what's my problem with the CMRC's “big tent”? The problem is the way the canvas obscures our view. Just as the box prevents us from observing whether Schrodinger's cat is alive or dead, the CMRC's tent allows the blatant contradiction of PACE to go on and on and on. Within the tent it appears to be “okay” to consider PACE both good science and bad science. Outside in the light, that wave function doesn't last very long. Outside in the light, M.E patients need their physicians to make educated professional judgements and they need these immediately for they are suffering.
In a previous post, Dr Shepherd was asked to ask the CMRC to make a judgement on PACE. I feel he responded by draining all hope out of the request. A while back Mrs Chowdhury directly and publicly blocked a question on PACE at the CMRC conference. My own communications to the CMRC and requests for judgment on PACE have been met with silence. I take from this that the tent, and the cognitive dissonance that it maintains, is being defended. This is, in my opinion, not okay.
In the simplest of terms: people with M.E need help. In fact, physicians are paid handsomely to provide assistance. I think the single most important issue facing a person with M.E is whether to respond to their symptoms with rest or with exercise. This decision can and often does affect the whole of the rest of their lives. It is no exaggeration to say, that M.E patients' health, careers and relationships all depend on making the appropriate choice. Pace via NICE is currently either informing or misinforming this vital choice.
Medicine's betrayal of M.E patients is not BPS theory, it isn't even the methodological issue in Pace, it's that doctors are refusing to make informed, scientific, judgements. I feel the CMRC has actively chosen to leave the question of Pace up in the air, uncertain, indefinitely. And while they do this, patients are left to pick up the slack, to become the physicians that they themselves do not have and to make the judgements that their doctors deliberately avoid. Despite the cognitive and physical limitations concomitant with their condition M.E patients are forced to both educate themselves and fund their own research. And they often do this while medicine allows itself to badmouth and write off their efforts.
To be clear: we have a means of determining the truth of Pace: it's called the scientific method. Science is about making judgements, it’s filled with right and wrong answers, it’s filled with work meticulously and methodically done. Science is where reputations are risked and great knowledge is won. This is what people with M.E deserve, but what they get is a miasma of half-truth and magical thinking.
While the CMRC’s “big tent” keeps issues unsettled and unresolved, I think it likely that this body is doing politics as opposed to science. And let me be very clear: the maintenance of uncertainty within UK ME does not serve M.E patients. People with M.E have carried the burden imposed by BPS theories for decades. It would be highly disrespectful for medicine to expect patients to now carry the burden of concealing or perpetuating an unhelpful treatment for a further period of decades.
I have tried to make it clear that I respect the intelligence of all those involved and would do whatever I could to help medicine make a smooth transition, however, in deference to the lonely bravery of thousands of people with M.E who are suffering right now, I think British medical science needs to immediately and openly make the judgements they are paid to make.
It is time to open the box, remove the tent cover and clean up the mess left behind by three decades of medical bias. Pace is a dead cat. It's stinking up the place. Get rid.
@batteredoldbook
So what's my problem with the CMRC's “big tent”? The problem is the way the canvas obscures our view. Just as the box prevents us from observing whether Schrodinger's cat is alive or dead, the CMRC's tent allows the blatant contradiction of PACE to go on and on and on. Within the tent it appears to be “okay” to consider PACE both good science and bad science. Outside in the light, that wave function doesn't last very long. Outside in the light, M.E patients need their physicians to make educated professional judgements and they need these immediately for they are suffering.
In a previous post, Dr Shepherd was asked to ask the CMRC to make a judgement on PACE. I feel he responded by draining all hope out of the request. A while back Mrs Chowdhury directly and publicly blocked a question on PACE at the CMRC conference. My own communications to the CMRC and requests for judgment on PACE have been met with silence. I take from this that the tent, and the cognitive dissonance that it maintains, is being defended. This is, in my opinion, not okay.
In the simplest of terms: people with M.E need help. In fact, physicians are paid handsomely to provide assistance. I think the single most important issue facing a person with M.E is whether to respond to their symptoms with rest or with exercise. This decision can and often does affect the whole of the rest of their lives. It is no exaggeration to say, that M.E patients' health, careers and relationships all depend on making the appropriate choice. Pace via NICE is currently either informing or misinforming this vital choice.
Medicine's betrayal of M.E patients is not BPS theory, it isn't even the methodological issue in Pace, it's that doctors are refusing to make informed, scientific, judgements. I feel the CMRC has actively chosen to leave the question of Pace up in the air, uncertain, indefinitely. And while they do this, patients are left to pick up the slack, to become the physicians that they themselves do not have and to make the judgements that their doctors deliberately avoid. Despite the cognitive and physical limitations concomitant with their condition M.E patients are forced to both educate themselves and fund their own research. And they often do this while medicine allows itself to badmouth and write off their efforts.
To be clear: we have a means of determining the truth of Pace: it's called the scientific method. Science is about making judgements, it’s filled with right and wrong answers, it’s filled with work meticulously and methodically done. Science is where reputations are risked and great knowledge is won. This is what people with M.E deserve, but what they get is a miasma of half-truth and magical thinking.
While the CMRC’s “big tent” keeps issues unsettled and unresolved, I think it likely that this body is doing politics as opposed to science. And let me be very clear: the maintenance of uncertainty within UK ME does not serve M.E patients. People with M.E have carried the burden imposed by BPS theories for decades. It would be highly disrespectful for medicine to expect patients to now carry the burden of concealing or perpetuating an unhelpful treatment for a further period of decades.
I have tried to make it clear that I respect the intelligence of all those involved and would do whatever I could to help medicine make a smooth transition, however, in deference to the lonely bravery of thousands of people with M.E who are suffering right now, I think British medical science needs to immediately and openly make the judgements they are paid to make.
It is time to open the box, remove the tent cover and clean up the mess left behind by three decades of medical bias. Pace is a dead cat. It's stinking up the place. Get rid.
@batteredoldbook
1.
I just found a couple of Hugh Perry's statements in response to one question about stress in ME at the A4ME Synopsium and here's what he said, as best I can transcribe it:
"I think that in fact that in the press just recently, some of our politicians have finally begun to recognise that mental health is actually important. It's hugely encouraging but I do think we have to push mental health up the agenda at all levels, and mental health for this group, for young people, for elderly people. It's hugely under funded and under explored, so we need to do more."
and
"As a biologist of course, my view is if things change in your brain, that's physical"
2.
It seems you shortened the board to which Hugh Perry is chair.
I can only imagine you've been standing too close to your BPS colleagues and a little of their art of manipulation has rubbed off on you, so I'll spare you the blame but it's not just the neurosciences board.
The title of the MRC board which Hugh Perry chairs is called the "Neurosciences & Mental Health Board'.
3.
On a separate note... I asked for my MEA membership to be closed yesterday.
With what we know about ME, GET and CBT etc., a charity does not represent sufferers if it supports and advertises a study deceitfully advertised as biomedical when it includes and is likely lead by so many BPS proponents. You must surely realise the numerous risks that puts a biomedical study at. Many, including myself, can not see the need for any BPS involvement or why anyone would support their inclusion when history tells us they are not to be trusted with science in ME. Given funding is scarce, sufferers clearly want pure biomedical science in MEGA, unhindered by psychosocial pseudoscience. The MEA are not representing what the majority of sufferers clearly want. You can keep avoiding the issue of the BPS involvement in MEGA but that's not going to make the problem dissapear, it'll more likely drive more people away from the MEA.
trishrhymes
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Thank you for this clarification. I am puzzled now. Why does the MEA need to have its Christmas appeal if the MRC is so eager to fund good biomedical research, and why is the MEA having to find the money to keep the biobank going, along with all the other projects it supports? Have these all been turned down by the MRC? I have just dug into my savings to try to help the Christmas appeal. Are you saying this wasn't necessary?
AndyPR
Senior Member
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2762 supporters, another 36 overnight, good job Professor Holgate, keep up the good work!
https://www.change.org/p/opposing-mega-a-vote-of-no-confidence-in-mega-research-for-me-cfs
https://www.change.org/p/opposing-mega-a-vote-of-no-confidence-in-mega-research-for-me-cfs
Or maybe Charles Shepherd could become whistleblower No 2 ? That CMRC ship is sinking fast, it will be interesting to see which of the patient charities lowers the life raft first.
We regularly hear the BPS school opine that 'our' threatening and abusive behaviour turns off scientists from coming to ME research (a notion duly quashed by the ICO Tribunal judge). It would seem the people whom the scientific community who wish to engage should be most wary of is the BPS school themselves... and here we have evidence to which we can point (we don't have to make up scurrilous nonsense. )
AndyPR
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Well, logically, it would suggest that the MEA aren't submitting "good quality research grant applications to the MRC", that is IF they have applied. If they haven't, why not? The same also applies to Invest in ME, if there is money available for biomed research are they not applying for it? If not, why not? If they are, why are they rejected?
Remember it is possible to un-sign the MEGA petition if people feel they signed without full understanding of its implications and wish to change their minds. The MEGA petition peaked at 2546 and has dropped 3 signatures since closing.
..and so it does. Nice allusion Time to Act Up.