Jo Best
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New post on Opposing MEGA website - https://opposingmega.wordpress.com/2016/12/14/highly-misleading/
Bait and switch.
The bait is the promise of serious biomedical research.
The switch is when it turns out that MEGA is actually a way for Chalder et. al. to get their hands on 12000 questionnaires from "fatigue" patients. The blood samples may not actually ever be used, as there are no detailed plans for anything.
The MEGA Q/A also repeatedly tells readers that fewer tests than planned may be run as result of budget restrictions, or because the patient advisors say so. Even if the blood samples are used, the result may be disappointing.
With Chalder involved, there's the risk that important symptoms of the illness will be distorted to fit into a BPS narrative, creating confusiong and undermining the value of the work.
Finally, there already is an existing biobank, and interestingly the MEGA Q/A page when asked whether they will make use of it, gave an evasive answer, which probably means no. Is it because this biobank has taken some care in selecting patients that are clearly sick with a serious illness?
New post on Opposing MEGA website - https://opposingmega.wordpress.com/2016/12/14/highly-misleading/
indeed they did: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.
OPPOSING MEGA PETITION UPDATE 15 DEC 2016 —
https://www.change.org/p/opposing-m...idence-in-mega-research-for-me-cfs/u/18796154
In response to a question on Phoenix Rising forum today, Jonathan Edwards, Emeritus Professor of Connective Tissue Medicine, had this to say about MEGA (The M.E./CFS Edpidemiology and Genomics Alliance) a project of the CMRC (CFS/ME Research Collaborative) -
"The more I see of communications coming out of the CMRC and MEGA team the clearer it is to me that they have no real idea what they are doing other than trying to secure money for certain researchers. The token involvement of a patient group at a point in time when one assumes the first grant application has already been written and submitted to local administrative offices is a farce. It reveals a complete lack of respect for the patient community. As far as I can see the initial bid will be for the amount they are allowed to bid for, which will be quite small. They have made it clear they have no real idea what they are going to do with that money other than set up in direct competition with the existing Biobank which is about five years further down the line and needs continued funding. This seems to me destructive and irresponsible. This is no sense a 'collaborative' venture'. It is driven by self-interest as far as I can see. I do not hesitate to say that because it is the norm in science these days - one of the reasons I retired to do something else.
To my mind the CMRC is not a 'big tent'. It is almost totally isolated from the international research community. As far as I know it has no involvement in European interactions and precious little support from the US, if any. 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. And I have no axe to grind on this. None of it makes any difference to me doing my birdwatching and philosophy. I just get angry when people behave like this.
If I was involved in a charity I would not wish to be associated with the CMRC. But I respect those who feel differently about the best way forward."
Jonathan Edwards, Today at 12:51 PM #373 -
http://forums.phoenixrising.me/inde...te-30-november-2016.48118/page-19#post-794723
Jonathan Edwards, Today at 12:51 PM #373 -
http://forums.phoenixrising.me/inde...te-30-november-2016.48118/page-19#post-794723
Some of the people involved in MEGA were involved in the PACE trials which have been shown to be near fraudulent in their scientific incompetence. That's the view of over 60 international scientists who signed an open letter for the withdrawal of the PACE study from the Lancet. https://www.change.org/p/opposing-m...dence-in-mega-research-for-me-cfs/c/557393885
Or teetering on the edge of a precipice to the tune of 'Self Preservation Society'?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.
Or is this stuff too out of date???
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
You can still talk to us about other things and not break your new years resolution.