Petition: Opposing MEGA
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Jo Best
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I don't know if this has been answered Trish as am just catching up today but Stephen Holgate has been involved in ME/CFS research for many years and has as much access to all the information as anyone else in the field.
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charles shepherd
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That is not correct
And I'm not going to write yet another long defence of the CMRC - I have too much to do tonight and this discussion is supposed to be about the MEGA study
Did you read my report on the 2015 CMRC conference in Newcastle -
http://www.meassociation.org.uk/2015/10/global-mecfs-research-22-october-2015/
where I saw about 4 psychiatrists or psychologists out of around 100 people who attended
Do you really think this is a research conference/group designed to promote the psychosocial model of causation and management???
Useful comment on behalf of a patient support group.
https://www.change.org/p/opposing-m...dence-in-mega-research-for-me-cfs/c/526585487
https://www.change.org/p/opposing-m...dence-in-mega-research-for-me-cfs/c/526585487
slysaint
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How to spin it so that you are the only hope;
SImon Wessely in the Independent two years ago being heralded as the saviour of those with mental health problems, including Gulf War Syndrome and ME.
"
Simon Wessely still remembers the letter that he received more than 20 years ago from a neurologist referring a woman with chronic fatigue syndrome (ME). “Please see and treat this patient,” it said. “There is nothing wrong with her.”
It summed up the attitude of many doctors to the condition that he made his speciality. But it also encapsulated a widespread belief about mental illness: it wasn’t real like physical illness."
And yet last year Cort reported this on his blog:
"The prime mover behind CBT and GET's prominence in the UK - the man who argued that chronic fatigue syndrome is not a real disease but is caused by poor coping skills - said in response to a recent Rituximab study that it's tragic that ME/CFS has not been taken seriously. He also called for a major Rituximab study to take place.
"There is now a strong case to be made for a larger trial," says Simon Wessely of King's College London, who has treated people using cognitive behavioural therapy.
"The belief that [CFS] is all in the mind has been around since the beginning," he says. "It's tragic that it might take a study like this to take sufferers seriously."
SImon Wessely in the Independent two years ago being heralded as the saviour of those with mental health problems, including Gulf War Syndrome and ME.
"
Simon Wessely still remembers the letter that he received more than 20 years ago from a neurologist referring a woman with chronic fatigue syndrome (ME). “Please see and treat this patient,” it said. “There is nothing wrong with her.”
It summed up the attitude of many doctors to the condition that he made his speciality. But it also encapsulated a widespread belief about mental illness: it wasn’t real like physical illness."
And yet last year Cort reported this on his blog:
"The prime mover behind CBT and GET's prominence in the UK - the man who argued that chronic fatigue syndrome is not a real disease but is caused by poor coping skills - said in response to a recent Rituximab study that it's tragic that ME/CFS has not been taken seriously. He also called for a major Rituximab study to take place.
"There is now a strong case to be made for a larger trial," says Simon Wessely of King's College London, who has treated people using cognitive behavioural therapy.
"The belief that [CFS] is all in the mind has been around since the beginning," he says. "It's tragic that it might take a study like this to take sufferers seriously."
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Can you (or someone) please, please, please ask the petition organisers to set up a better way of responding to these blogs than forcing people to go to change.org with a facebook account.
We have the ridiculous situation where Prof Ponting couldn't even reply to his own (very interesting) article, and Simon was acting as go-between taking comments off these boards and then emailing, then getting email back then posting via his own facebook . And again with Prof Edwards (very interesting) comment from this thread. We need these discussions to be able to take place directly, and be much more accesible to the rest of us than they are right now.
Jo Best
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The MEGA petition is addressed to 'Mainstream research funders'. I think the first paragraph of the counter-petition makes that clear and is also addressed to 'Mainstream Research Funders'. I agree it wasn't worth a heated debate fueled by emotive hyperbole such as 'strangling at birth' and so on. It's quite simple. MEGA set up a petition and petitions give only one option - to show support. It's perfectly reasonable to set up a counter-petition in such circumstances and as I said in an earlier post, people and support groups had written to CMRC/MEGA and received unsatisfactory responses so it's perfectly legitimate to use the same means of communication that MEGA chose to use.
I think you have hit the nail on the head there
(my bold)
I agree, i think that IS what we need. But yikes it would cost a lot to get someone good. I think it would also be good to have a non ME sufferer, because q(uite apart from the health issues of doing a full time job like that), I think it's easy for those who have a fixed idea that ME is a faulty belief system to completely ignore what the excellent Dr S (for instance) says, - as soon as they find out he's a sufferer himself
- in their world he becomes a patient who needs CBT (and that in itself is so indicative of psychiatry's attitude to those it serves... if an MS patient told the neuro that a treatment they'd recommended made them worse, their attitude would be 'oh dear perhaps my hypothesis on whats causing that symptom is wrong'. But when a mental health patient tells their psychiatrist that, the psych doesnt for one moment consider they may have made a mistake - it must be some problem on the patient's part. I'm not saying thats all psychs, but many, & in wider society too. But i digress... back to advocates & the like....
How to fund it & who would organise it, interview them & actually employ them,.... - the logistics would be a challenge, but not impossible. Perhaps if we set up a crowd funding page & raised enough for say, 2yrs wages, then the MEA might be willing to handle the actual employment? I dunno, but I think it's worthy of serious consideration, because (eg) the PACE debunking, all the biomedical studies, all the patient advocates.... it all just seems to be like water off a duck's back.
Molly98 I think your post is worthy of it's own thread.....
so it could be fully explored without tangenting from OMEGA?
what do others think?
@charles shepherd - is there some reason that MEGA (or even the CMRC) don't set up their own website for free in 10 minutes on something like Weebly? Even children can do this - it just uses drag-and-drop for posting text and pictures. It's extremely simple, and includes the ability to quickly and easily set up a blog page.
They'd have to pay for a domain name, but that's only a few quid a year.
Jo Best
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I am not a member of the MEA. I have not invited you to defend the CMRC or asked you any questions on this thread as far as I recall. I've only been aware of this disgraceful mess since 2010 and have formed my own opinions by listening and reading the comments / papers from the various horses' mouths.
@charles shepherd
A - I have not received an adequate response to my question but instead got a response that the "petition" was not a "petition". My question about the purpose of the petition still stands and why it was necessary. Whatever one chooses to call it is a PETITION. I have not been given a proper explanation why you state that a counter petition is a bad idea but why the original petition is not and why it is still there.
I am sorry I do not buy it that the CMRC could only use Change.org to communicate with patients and gauge support.
It is very easy to set up website. They can be set up for next to nothing. One only needs to go to wordpress for example and a website can be set up for free.
The CMRC/MEGA have had 3 years at the very least, to set up a website and could not do it and had to use Change.org for a petition (the day after the #Millions Missing campaign which I believe CMRC hijacked and jumped on with this petition) ? I do not buy it.
Here is an example of a website being set up within days without any planning:
https://opposingmega.wordpress.com/
You correctly state that petitions are used by members of the public to sign up to raise awareness and pressure governments, councils etc and other institutions. CMRC is part of MRC and is the medical establishment. This must be the only case and may be unprecedented where an establishment organisation has set up a petition for the public. Everything really is topsy turvy with CMRC!!!
Either the CMRC are incompetent or have malicious BPS intent. I am fairly sure it is the latter. However whichever it is 1. incompetent or 2. corrupt - why should patients or ME charities support them?
This OMEGA petition has now been set up due to the (in)actions of CMRC/MEGA and they are responsible for any negative repercussions and patients should not be victimised and blamed any longer for standing up for their civil rights and asking legitimate questions.
I asked about removing the original petition as it was unethical and unprofessional or an explanation for why it was set up, but for nearly a month later I have not received any response from you or anyone on MEGA or CMRC. Well too late - now the OMEGA petition is up and MEGA will not get any support from patients and hopefully charities and Esther Crawley and Peter White will not get their £5 million. No-one should engage in any patient victim blaming for this.
B. I appreciate you coming on to PR to defend MEGA/CMRC but you should not have to do so as a volunteer. I see you are doing a lot of hard work on other ME issues so they MEGA/CMRC should be here communicating with us.
Given you have engaged here more than Sonya Chowdhury why is she the patient representative of MEGA? She does not represent me or many well-informed patients. Why does Sonya Chowdhury not engage with patients on here and other social media as that is her responsibility as patient representative? Why is Esther Crawley and the rest of the MEGA team including Stephen Holgate not communicating here with patients and leaving it up to you?
Why are CMRC/MEGA and Esther Crawley, Sonya Chowdhury and Peter White hiding from patients?
I will say again - We are not stupid!!
I along with many others have wasted so much time on this MEGA (aka GIGO). Thank you for your time and I look forward to your response.
P.S. I will respond to your question that you asked later on as I am having to deal with other issues currently but will respond fully in due course - I have not forgotten.
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Full post from the ME support group:
SUPPORTER COMMENT
I am the Chair of a local support group representing PWME in Sheffield and the surrounding areas. At the recent Board Meeting of the Trustees of the Sheffield ME and Fibromyalgia Group we discussed the MEGA project in depth and took a decision on where we stand. We wish to state that we categorically do not support this project. The rationale is simple: we are committed to supporting, promoting biomedical research into the neuro-endocrine immune system illness. We have no confidence in individuals behind the trial that have had connections to the flawed PACE trial and believe that funding could and probably will be directed away from pure bio-medical research rather than psycho-social research. We believe that the professional ethics of petitioning the public for support and in particular the vulnerable community of patients and carers is questionable. We believe that any research should represent all PWME and not exclude the most severely affected which the MEGA trial have not even considered. The wording of the petition includes words such as ‘biological’, biomedical’ big data’ ‘potentially game changing’ all emotive terminology that could mislead patents and carers desperate for definitive diagnostic tests and medical treatments but their updates show just how little thought and planning has been given by the team to their own proposal.
We believe that PWME, their families and friends should NOT support the MEGA petition but instead support the OMEGA (Opposing MEGA Petition) to make sure that any funding goes specifically to bio medical research without the involvement of key members and advisors of MEGA who are involved in the discredited PACE trial, and the MAGENTA trial in children with ME/CFS which follows from the PACE trial, run by leaders of the bio-psycho-social (BPS) movement known collectively as 'The Wessely School’.
We believe we have a duty of care to our members and people with ME in general, their families and their carers to oppose the MEGA trial, it is an opportunity for the larger ME community to stand together and raise their voice to make sure it is heard once and for all that we need bio-medical research and will not be hoodwinked by the BPS movement any longer.
So the PACE trial re-analysis results have been published in magazines, newspapers, including medical and pharmacy publications throughout the world, BUT, the NICE guidelines people refuse to listen and are going to ignore it all, until it's peer reviewed? The whole world is laughing at us, the UK is a laughing stock! So they are happy to risk patients health, despite the truth now being out there?
Charles, yes I know the guidelines were based on previous dubious studies, but the sheer size of PACE must surely make them irrelevant. PACE was supposed to confirm these smaller trials wasn't it?
Charles, yes I know the guidelines were based on previous dubious studies, but the sheer size of PACE must surely make them irrelevant. PACE was supposed to confirm these smaller trials wasn't it?
charles shepherd
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I will forward this to someone on the MEGA planning group
At the moment, I think it is here (rather than CMRC) that a simpler way of dealing with comments needs organising
charles shepherd
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Jan - I'm obviously playing devil's advocate here but out in the real world nobody is interested in the PACE trial - apart from people with ME/CFS (plus carers etc), a small group of doctors who follow ME/CFS research, and a very small number of sympathetic journalists like David Tuller (whom I sat with at the FoI tribunal)
Although there are clearly a number of doctors who believe that the reanalysis should be a cause for very serious concern at NICE, Lancet etc, we are very small in number and there has been no 'outcry' from the wider UK medical profession to discredit the PACE trial. The vast majority of my ordinary (i.e. non ME/CFS) medical colleagues don't know about the PACE trial and have no interest in it whatsoever
As I've already said, NICE will only take serious note of the PACE data re-analysis if it can be turned into a paper for publication, peer reviewed for accuracy (not that this always works) and published in a reputable peer reviewed journal - all of which will take many months
charles shepherd
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But when you make a comment like this:
"I think the CMRC was set up to protect and serve the BPS school."
on this discussion (which is supposed to be about the MEGA study) is it not appropriate for someone who is on the Board of the CMRC to point out that this statement is not correct and briefly explain why?
CS
charles shepherd
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Thanks for this info
Sorry - I do not know how to contact you via your Facebook page
Could you email me via: admin@meassociation.org.uk
Presumably you count some GP's among your non ME/CFS colleagues.
Are you saying that the vast majority of GP's have no interest whatsoever in keeping abreast of developments in the field of ME/CFS research generally, or is it just the PACE Trial that for some reason never caught their attention?
And what about other diseases? Does the complete lack of interest the vast majority of your medical colleagues feel for the PACE Trial extend to other diseases? Are they interested in research into any diseases? If they are, why is ME/CFS research, or at least one important piece of ME/CFS research, so uninteresting to them?
Thank you.
charles shepherd
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Sorted!
I have just written to Stephen Holgate to see if something can be done about this