Petition: Opposing MEGA

[lilpink]

I've heard on the grapevine, not sure if it's true or just a rumour, that Esther Crawley collected large amounts of data for her ME/CFS National Outcomes Database without getting informed patient consent. ?

 

[Jo Best]

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.

Which brings me back full circle to the question - what can we do to enlighten Holgate and the other scientists? I'm out of touch with the letter writing group having withdrawn from these discussions for a while. Any information? There are so many threads, I haven't the energy or concentration to read them all.

 

[charles shepherd]

I think the CMRC was set up to protect and serve the BPS school.

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???

 

[lilpink]

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

 

[slysaint]

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."

 

[eafw]

New blog from Professor Hugh Perry >>

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]

My understanding of a petition is that it is something people sign and it is then sent to a council, government department etc

This petition is something where people can express support and register to receive regular information on what is happening with the study

I don't know about these sort of internet tools but I think it would have been better if the MEGA planning group had see a tool (if there is one) where people can register support, and sign up for information - rather than a site which involves petitions in the normal sense of the word

Not sure that this is really worth getting into a detailed debate over

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.

 

[char47]

I think that this is where the biopsychosocial lot have a huge advantage. Its seems to me that they actively love to sell themselves, their ideas, love an audience and are gifted in the art of persuation and marketing, they may be charming and convincing and good at networking.

I think you have hit the nail on the head there

We seem to be making big in road in scientific research lately but lets face it there has been masses of biological research over the years which show the biological differences in ME patients. I mean the IOM came to that conclusion. But its ignored as the BPS advocates go about their networking and charm offensive with the people who matter.

I think we need to be funding more doctors like Charles to take on the role of full-time advocate, diplomat even.for ME as a biological disease. We have some good people advocating for us such as Charles but its not enough we need more. The psychobabble may be winning the war on ME precisely because they are more savvy and skilled on a psychosocial level and know what works when it comes to selling ideas.

Lets face it even in war the politicians and forces chiefs know the importance of winning hearts and minds and the importance of diplomacy and alliance building. Strikes me that maybe we need to get a bit cleverer at playing the BPS lot at their own game and employ people with the energy, skills and knowledge base and professional qualifications to do so.
I for one would happily contribute financially what I could to help get medical advocates employed to help turn the tables.

(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?

 

[Sasha]

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.

@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]

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???

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.

 

[Yogi]

I have posted this on the main MEGA thread but it is very relevant here so have placed it here also and that so everyone is aware of this.

http://forums.phoenixrising.me/inde...-listed-as-involved.47082/page-17#post-777861

Apologies for not answering your question

You may not find this a satisfactory excuse but I'm afraid I just do not have time to answer all the emails that pour into my in box each day and keep up with all the questions that are directed at me or the MEA on the two social media sites where I am very happy to engage with the patient community - MEA Facebook and PR forum - for a couple of hours each day. After that I'm afraid I just have to move on to other work

And as you may know, I have this wretched disease and on top of trying to earn some money to pay the bills I spend around 60 hours per week dealing with MEA work on a purely voluntary basis - if you follow MEA Facebook you will know that my prime concern is with patient information and support

Regarding the petition in support of the MEGA study:

Firstly, I don't think that petition is really a good word to be using here - as it is not being used in the normal sense of a petition. But it may be that there was no other internet tool that could be used instead.

It is simply a way of registering support for a major new piece of research that will involve a large number of people with ME/CFS

To co-incide with a number of presentations on the Big Data study at the CMRC conference in September the planning group decided to engage with the public by giving them an opportunity to say that they supported the study if they wished to do so

This would then be followed by regular email updates on the study, Question and Answer sessions, and blogs by different members of the research group (Chris Ponting has done the first one) to anyone who signed in support

Please could you clarify what the 'unfounded statements' are

If it would help, I would be happy to speak to you on the phone tomorrow when I do a 'telephone clinic' at 5pm

Thank you for finally acknowledging after tagging you four times when you were on the forum. I appreciate your constraints by being on various social media.

I am shocked that you are now saying it is not really a petition.

".Firstly, I don't think that petition is really a good word to be using here - as it is not being used in the normal sense of a petition."

It is A PETITION.

Change.org is a PETITION website.

https://www.change.org/about

The MEGA page has the word petition 14 times on it.

You have used the word petition.

I do not wish to have a separate debate about what that is if it is not a petition. It is a petition.

CMRC and MEGA have completely failed to listen or engage with patients to garner support and have instead resorted to a petition. We are not stupid.

The counter petition had been opposed by you and some have said it could stop MEGA and genomic research but as you say it could be merely to gauge support like the original petition and should therefore not have such strength.

I still do not understand why a petition site was used. I have not received a response a satisfactory response to the serious question over the petition. The original petition should be removed as it is unethical and unprofessional given the misinformation and changes since it was originally put up.


People were given only two choices to support it in its current form or not by the petition. Their was no avenue to support MEGA in a different form.

There are important and very serious issues which have arisen about the conduct of MEGA and CMRC which have been raised in all the MEGA threads here on PR and CMRC and MEGA themselves have endangered the study and not patients due to their conduct. I think you should re-read all the comments on PR about MEGA as you have misunderstood peoples legitimate and reasonable concerns and constructive criticism.

I shall try and respond to you fully here by 5pm tomorrow.

My understanding of a petition is that it is something people sign and it is then sent to a council, government department etc

This petition is something where people can express support and register to receive regular information on what is happening with the study

I don't know about these sort of internet tools but I think it would have been better if the MEGA planning group had see a tool (if there is one) where people can register support, and sign up for information - rather than a site which involves petitions in the normal sense of the word

Not sure that this is really worth getting into a detailed debate over

@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.

 

[Yogi]

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

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.

 

[Jan]

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 shepherd]

@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.

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]

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?

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

 

[Binkie4]

@Charles- we have been in contact with Sir Andrew Dillon at Nice since May via our MP and individually. We have gained some information which we are happy to share with you. Could you contact me via my fb private message page.

 

[charles shepherd]

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.

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]

@Charles- we have been in contact with Sir Andrew Dillon at Nice since May via our MP and individually. We have gained some information which we are happy to share with you. Could you contact me via my fb private message page.

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

 

[Aurator]

JThe 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

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]

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

Sorted!

I have just written to Stephen Holgate to see if something can be done about this