MEGA research for M.E./CFS: White & Crawley listed as involved

AndyPR

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Update posted to MEGA - https://www.change.org/p/support-th...ation-to-major-uk-research-funders/u/18337625

New MEGA website to be launched
M.E./CFS Epidemiology and Genomics Alliance (MEGA)
United Kingdom
2 Nov 2016 — We will be moving to a MEGA website in the next week or two so that we can better manage content and improve access to information for those that don't wish to sign up to support this study but are keen to hear the latest news. We plan to continue posting regular updates and blogs and to ensure there is the facility to ask questions and engage with the MEGA team. We will also be posting information about how you can become part of the patient advisory group soon. Working with the researchers, this group will inform the application and protocol for the study.

The website will be announced on the UK CFS/ME Research Collaborative webpage soon: https://www.actionforme.org.uk/research/uk-cfsme-collaborative/
 

JoanDublin

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Typical of them. Fingers in the ears, hands over the eyes, hear no evil, see no evil, etc. They are ploughing ahead despite the concerns expressed. Well OMEGA will continue to register patients opposition and comments
 

Countrygirl

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http://www.megaresearch.me.uk/get-involved/

The time is very short for those who want to apply for the advisory group. The members will be chosen by the MEA and MERUK and Prof Little.


The closing date for applications is 9am 6 December 2016.Applications will be considered by a panel consisting of representatives from the ME Association and ME Research UK and a representative from the MEGA team, Prof Paul Little.

Please ensure that you state fully how you meet the criteria/person specification in your application. Successful applicants will be selected by scoring by the panel against this specification.
 

Binkie4

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@Countrygirl
It's a bit of a conflict isn't it. While I would not wish to support MEGA, I would hope that the patient representative panel would include those who are not just natural MEGA supporters. What does the group think? Where is it best to expend one's energy? I find it tricky to decide. Once inside a group, might there be the danger of 'going native'? .......
 

AndyPR

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The Deadline for applying to be on the MEGA Advisory Group is the 6th December - only one week!

That in itself indicates the authors are worryingly ignorant about the limitations imposed by ME.

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5 days as they want applications in by 9am 6th December, I have commented on this on their Facebook post about it.
 
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Many of us, even being Facebook members, cannot post on AFME Facebook site due to having been banned. AFME have a history of banning ME sufferers and carers from its Facebook page that goes back many years. Its a disgraceful practice. AFME banned FB members for informing others about AFME's unaccountability, banned for calling Lightning Process "a scam" ..... etc etc.

It has been pointed out to AFME that they were in the habit of separating sick and housebound ME sufferers from an online community in which they had made friends and engaged in mutual support, in effect isolating housebound sufferers even more by banning them. But AFME are never moved. Representing housebound ME sufferers is not on AFME's agenda.
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