New post on Opposing MEGA website - https://opposingmega.wordpress.com/2016/12/14/highly-misleading/
Petition: Opposing MEGA
- Thread starter AndyPR
- Start date
- Messages
- 147
- Likes
- 755
"Our advice to MEGA is – disband"
Agree 100%. MEGA is an invitation to people with M.E to repeat the mistakes of the past. If they won't disband, we should reject.
Agree 100%. MEGA is an invitation to people with M.E to repeat the mistakes of the past. If they won't disband, we should reject.
- Messages
- 3
- Likes
- 34
I have been reading quite a bit recently to get more background info about my daughters condition and the politics relating to what I consider to be government neglect I came across this in Countess of Mar records and think it relevant if it is the Welcome Trust who could be funding MEGA.
Is wellcome to be trusted? below is an excerpt from my readings, it seems to the place where S. Wessely got his start.
FROM “Denigration By Design: Volume 1 (1987-1996) - Eileen Marshall Margaret Williams”
1. Wessely has had connections with the drug company Wellcome (now combined with Glaxo) over many years. He has often been funded by Wellcome and was the Wellcome Research Fellow in Epidemiology at the Institute of Psychiatry. He appears to subscribe to the Wellcome strategy of profitable enterprise documented by Brian Deer in The Sunday Times Review on 27th February and 6th March 1994: one learns from Deer that the Wellcome strategy is not only curative medicine but commercial success; most certainly, Wessely advocates the use of antidepressant drug therapy in CFS/ME, in that he advises general practitioners that this is a treatment of choice in CFS even though until recently there have been no randomised double blind placebo-controlled studies showing the effectiveness of antidepressant drug therapy in CFS.
….
It needs to be noted that Wellcome were promoting Prozac on behalf of the American producers, and that Wessely has been very actively involved in that promotion.
As Wellcome Research Fellow, Wessely is, of course, paid by Wellcome.
NOTES ON WELLCOME
Wessely's connections with Wellcome invite special interest, as does the company itself. In early 1994 Brian Deer, writing for The Sunday Times (Hard Sell by Brian Deer; The Sunday Times News Review: 27th February 1994) produced a two part in-depth article on Wellcome and its ramifications.
The headquarters of the Wellcome Trust are at 183 Euston Road, London; it is the world's biggest private medical research fund, a charity with assets worth more than £6 billion. The Trust alone distributes more money to institutions than even the British government's Medical Research Council: it gives some £400 million annually to doctors and scientists in Britain and around the world.
From the headquarters in Euston Road, the Trust controls a commercial drug company, the Wellcome Foundation (housed at 160 Euston Road), one of the top pharmaceutical manufacturers in the world, and through this, the Trust also controls Burroughs Wellcome, its giant US offshoot.
From all these - through grants and sponsorship - government agencies and hospitals are influenced everywhere: in offices in Euston Road, decisions have been reached that have affected lives and health on a scale that compares with minor wars (ibid). It is likely that Wessely is an assessor for the Wellcome Trust.
In his second article (The Money Spinners, The Sunday Times News Review 6th March 1994), Deer shows how medical research and company profits are inextricably linked.
…..
In a structure devised to distribute the profits of pharmaceuticals to the research work of doctors and scientists, there may be anxieties about Wellcome’s wider impact.
In 1993, 19 of the 21 members of the UK Government’s Committee on the Safety of Medicines either worked in institutions which received funds from Wellcome or they were granted a share of the drug revenues in their own right (ibid).
Or is this stuff too out of date???
Is wellcome to be trusted? below is an excerpt from my readings, it seems to the place where S. Wessely got his start.
FROM “Denigration By Design: Volume 1 (1987-1996) - Eileen Marshall Margaret Williams”
1. Wessely has had connections with the drug company Wellcome (now combined with Glaxo) over many years. He has often been funded by Wellcome and was the Wellcome Research Fellow in Epidemiology at the Institute of Psychiatry. He appears to subscribe to the Wellcome strategy of profitable enterprise documented by Brian Deer in The Sunday Times Review on 27th February and 6th March 1994: one learns from Deer that the Wellcome strategy is not only curative medicine but commercial success; most certainly, Wessely advocates the use of antidepressant drug therapy in CFS/ME, in that he advises general practitioners that this is a treatment of choice in CFS even though until recently there have been no randomised double blind placebo-controlled studies showing the effectiveness of antidepressant drug therapy in CFS.
….
It needs to be noted that Wellcome were promoting Prozac on behalf of the American producers, and that Wessely has been very actively involved in that promotion.
As Wellcome Research Fellow, Wessely is, of course, paid by Wellcome.
NOTES ON WELLCOME
Wessely's connections with Wellcome invite special interest, as does the company itself. In early 1994 Brian Deer, writing for The Sunday Times (Hard Sell by Brian Deer; The Sunday Times News Review: 27th February 1994) produced a two part in-depth article on Wellcome and its ramifications.
The headquarters of the Wellcome Trust are at 183 Euston Road, London; it is the world's biggest private medical research fund, a charity with assets worth more than £6 billion. The Trust alone distributes more money to institutions than even the British government's Medical Research Council: it gives some £400 million annually to doctors and scientists in Britain and around the world.
From the headquarters in Euston Road, the Trust controls a commercial drug company, the Wellcome Foundation (housed at 160 Euston Road), one of the top pharmaceutical manufacturers in the world, and through this, the Trust also controls Burroughs Wellcome, its giant US offshoot.
From all these - through grants and sponsorship - government agencies and hospitals are influenced everywhere: in offices in Euston Road, decisions have been reached that have affected lives and health on a scale that compares with minor wars (ibid). It is likely that Wessely is an assessor for the Wellcome Trust.
In his second article (The Money Spinners, The Sunday Times News Review 6th March 1994), Deer shows how medical research and company profits are inextricably linked.
…..
In a structure devised to distribute the profits of pharmaceuticals to the research work of doctors and scientists, there may be anxieties about Wellcome’s wider impact.
In 1993, 19 of the 21 members of the UK Government’s Committee on the Safety of Medicines either worked in institutions which received funds from Wellcome or they were granted a share of the drug revenues in their own right (ibid).
Or is this stuff too out of date???
Yes and no. Didn't Wellcome very recently give a prize to Suzanne O'Sullivan for her book All in Your Head, which promoted the idea that a huge proportion of illness - including "CFS" is of psychosomatic origin. The chapter on CFS repeated the well worn claim that Simon Wessely (who may not have been directly named - not sure) is a brave soul battling to help us deluded people despite threats to his life, etc.
- Messages
- 147
- Likes
- 755
Thank you for posting this here Jo.
I strongly agree with @Jonathan Edwards on the CMRC: "I actually think the ME community would be better off without it if it is going to behave in this sort of incompetent and destructive fashion."
I would still dearly love to see all parties working together, but the CMRC acts as if the intellectual collapse of the Pace Trial had never happened. It acts as if medicine can continue to disregard, disrespect and mistreat M.E patients with impunity. I suggest the point at which doctors could get away with such behaviour has already passed.
@batteredoldbook
I strongly agree with @Jonathan Edwards on the CMRC: "I actually think the ME community would be better off without it if it is going to behave in this sort of incompetent and destructive fashion."
I would still dearly love to see all parties working together, but the CMRC acts as if the intellectual collapse of the Pace Trial had never happened. It acts as if medicine can continue to disregard, disrespect and mistreat M.E patients with impunity. I suggest the point at which doctors could get away with such behaviour has already passed.
@batteredoldbook
@batteredoldbook was just about to post the latest comment here -
- Messages
- 147
- Likes
- 755
"Fraud" doesn't, I think, capture the essence of Pace: I feel Pace runs in almost perfect contradiction to science; It is elegant but it is anti-science. The MEGA team appear, to me, to be trying to found their research endeavor, not on the shoulders of giants, but over a great big hole.
I have sent a long letter to Prof Holgate explaining our concerns about MEGA on behalf of some of us here which several of us signed.
Here is the polite reply:
Dear ******,
Thank you for in relation to issues you have over MEGA. Currently we have no funding for this project and the team is working on an application to secure funding to take this work forward. We do not have the capacity to respond to individual queries but we will review contact/questions every couple of weeks and add to the Q&A where appropriate. As the design of the project develops, we will provide further information and progress updates on the MEGA website. I am very pleased to let you know that the MEGA website is now live – please take a look at http://www.megaresearch.me.uk/
I suggest you submit any further questions to the MEGA team through the contact form on the website so that these can all be dealt with in the same way.
I hope this is helpful.
Best Wishes,
Stephen
No, I'm afraid I don't find this helpful as all our concerns have been left unaddressed.......not that I had any realistic expectations.
Here is the polite reply:
Dear ******,
Thank you for in relation to issues you have over MEGA. Currently we have no funding for this project and the team is working on an application to secure funding to take this work forward. We do not have the capacity to respond to individual queries but we will review contact/questions every couple of weeks and add to the Q&A where appropriate. As the design of the project develops, we will provide further information and progress updates on the MEGA website. I am very pleased to let you know that the MEGA website is now live – please take a look at http://www.megaresearch.me.uk/
I suggest you submit any further questions to the MEGA team through the contact form on the website so that these can all be dealt with in the same way.
I hope this is helpful.
Best Wishes,
Stephen
No, I'm afraid I don't find this helpful as all our concerns have been left unaddressed.......not that I had any realistic expectations.
- Messages
- 5,256
- Likes
- 32,032
I think you may be about fifty years out of date. The Wellcome Trust has been independent of the Wellcome Foundation (pharmaceutical company) for decades. The Wellcome Foundation ceased to exist around 1990 when it was absorbed into Glaxo SmithKline. When it existed the Wellcome Foundation was a remarkably ethical and enlightened company - probably the last one I worked with where I respected the science implicitly. The Wellcome trust has been a huge source of research funding but has always been rather cliquey. It has never had to have a commercial approach because its only job was to give out money. I knew two of the previous directors personally and respected them as individuals. I do not know the new director.
3091 supporters currently.
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
3099 supporters currently.
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
- Messages
- 147
- Likes
- 755
A New Year's resolution is not spend any more of my precious time and energy discussing the ridiculous, and I think disgracefully self-serving, MEGA study. I thoroughly enjoyed talking to you all here on PR though. I am very glad I did that. It was cool. Super best wishes to all.
@batteredoldbook
@batteredoldbook
- Messages
- 147
- Likes
- 755
Thank you so much for the invitation. Unfortunately, it is also well past time for me to stop talking about M.E as a whole. To be honest I only stayed on because I believe MEGA to be such an unmitigated disaster for pwme.
From my twitter and facebook feeds yesterday:
"Last year I said I was going to leave M.E advocacy due to community acceptance of Prof. Coyne's treatment of JKB, myself and others. I remain of the view that I would be a really crap advocate for people with M.E were I personally to accept or tolerate abuse.
It has taken much longer than I anticipated to extract myself from M.E advocacy. There were plans, commitments and distractions etc etc. I now have one task left to perform. Appropriately enough it's to have a cup of tea with someone whose contribution is legendary.
I am very sorry it has worked out this way. A better person than I could have achieved more for you & your truly just cause. I'm certain you'll find the man or woman who will lead you to success and wish all #pwme, (including those with whom I have squabbled): Good luck, good cheer, and good health."
From August last year; further details here: "What would I say to others about the M.E community?"
https://justpaste.it/x1yi
And vlog on subject here:
From my twitter and facebook feeds yesterday:
"Last year I said I was going to leave M.E advocacy due to community acceptance of Prof. Coyne's treatment of JKB, myself and others. I remain of the view that I would be a really crap advocate for people with M.E were I personally to accept or tolerate abuse.
It has taken much longer than I anticipated to extract myself from M.E advocacy. There were plans, commitments and distractions etc etc. I now have one task left to perform. Appropriately enough it's to have a cup of tea with someone whose contribution is legendary.
I am very sorry it has worked out this way. A better person than I could have achieved more for you & your truly just cause. I'm certain you'll find the man or woman who will lead you to success and wish all #pwme, (including those with whom I have squabbled): Good luck, good cheer, and good health."
From August last year; further details here: "What would I say to others about the M.E community?"
https://justpaste.it/x1yi
And vlog on subject here:
- Messages
- 2,157
- Likes
- 17,726
I guess the MEGA application to Wellcome for funding will be submitted within the next week or so.
I guess the existing UK ME biobank application to Wellcome will be going to the same fund, so they will be directly competing for funds.
I guess the MEGA petition has already been sent to Wellcome in support of the MEGA applicaton.
I guess the founders of OMEGA will also be submitting their petition to Wellcome in good time for it to have maximum effect.
I guess the OMEGA founders may also tell Wellcome that the existing UK ME biobank is fully supported by the ME patient community.
That's an awful lot of guessing.
It would be nice to have a confirmation or denial of some of my guesses.
I guess the existing UK ME biobank application to Wellcome will be going to the same fund, so they will be directly competing for funds.
I guess the MEGA petition has already been sent to Wellcome in support of the MEGA applicaton.
I guess the founders of OMEGA will also be submitting their petition to Wellcome in good time for it to have maximum effect.
I guess the OMEGA founders may also tell Wellcome that the existing UK ME biobank is fully supported by the ME patient community.
That's an awful lot of guessing.
It would be nice to have a confirmation or denial of some of my guesses.