Sorry no offence -was just making a general remark. I am just really annoyed at this situation.
MEGA research for M.E./CFS: White & Crawley listed as involved
- Thread starter AndyPR
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Thank you.
AndyPR
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Spotted this on Facebook, I haven't tried it but I believe it should work.
Simon
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Update on the AfME facebook page
Sonya Chowdhury Action for M.E. is one member out of 17 in the ME/CFS Epidemiology and Genomics Alliance all from differing backgrounds.
We are working as part of this group to develop a strong engagement plan with people with M.E. and others. Alongside the information given on the change.org site, we are working on producing blogs from each member about why they are involved and what their expertise/field can bring to the Alliance and the big data study that we are hoping to establish.
Alongside this, we will look to engage directly to explore issues such as inclusion criteria and to respond to questions.
The Alliance is hoping to submit an application in January and we are debating a number of issues and final decisions have not been made. We appreciate that there are concerns and we will respond to these.
At present, there is no funding for this project or for the time (including Action for M.E. staff) to develop an application and undertake all the associated work. Please bear with us as we are not ignoring questions. We have received a very large number of questions alongside a large number of positive messages and emails and we are trying hard to keep up with it all, not least while we were running the conference and dealing with all the challenges this brings.
One of the challenges that we anticipate is that any funder will question how we can ensure we recruit the large number of people needed (10,000 adults and 2,000 children and young people) all of whom need to well-characterised/diagnosed. The petition is to demonstrate support for a big data study of this kind and an implied potential willingness from the community to participate if eligible and with all the expected information and consent.
It is only through better understanding this illness or illnesses that we open up the potential for better, more targeted treatments to improve the lives of people with M.E.
Sonya Chowdhury Action for M.E. is one member out of 17 in the ME/CFS Epidemiology and Genomics Alliance all from differing backgrounds.
We are working as part of this group to develop a strong engagement plan with people with M.E. and others. Alongside the information given on the change.org site, we are working on producing blogs from each member about why they are involved and what their expertise/field can bring to the Alliance and the big data study that we are hoping to establish.
Alongside this, we will look to engage directly to explore issues such as inclusion criteria and to respond to questions.
The Alliance is hoping to submit an application in January and we are debating a number of issues and final decisions have not been made. We appreciate that there are concerns and we will respond to these.
At present, there is no funding for this project or for the time (including Action for M.E. staff) to develop an application and undertake all the associated work. Please bear with us as we are not ignoring questions. We have received a very large number of questions alongside a large number of positive messages and emails and we are trying hard to keep up with it all, not least while we were running the conference and dealing with all the challenges this brings.
One of the challenges that we anticipate is that any funder will question how we can ensure we recruit the large number of people needed (10,000 adults and 2,000 children and young people) all of whom need to well-characterised/diagnosed. The petition is to demonstrate support for a big data study of this kind and an implied potential willingness from the community to participate if eligible and with all the expected information and consent.
It is only through better understanding this illness or illnesses that we open up the potential for better, more targeted treatments to improve the lives of people with M.E.
Esther12
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So nothing from Sonya on concern about White, Crawley and Collin's inclusion? I don't really see why the CMRC patient charities did not address this. I don't think that this project should be supported in this state, but assuming they do, the way they've gone about this seems completely misguided.
Thanks, @Simon. Looking forward to seeing what AfME's and MEGA's efforts will look like in practice but they need to get on top of this as fast as they can, given the massive public relations error they just committed.
I was telling a friend this afternoon that if they'd all sat down in a meeting and tried to decide how to present MEGA to the patient community in a way that stuck two gigantic fingers up at us all as violently as possible, it would have looked exactly like what they did.
I think they were clueless: and now it's AfME's job to give them that clue, and they won't do that by trying to sanitise the issues. This needs some straight talking, and I hope that other charities will also stick their oars in. Time to talk truths.
I was telling a friend this afternoon that if they'd all sat down in a meeting and tried to decide how to present MEGA to the patient community in a way that stuck two gigantic fingers up at us all as violently as possible, it would have looked exactly like what they did.
I think they were clueless: and now it's AfME's job to give them that clue, and they won't do that by trying to sanitise the issues. This needs some straight talking, and I hope that other charities will also stick their oars in. Time to talk truths.
Large Donner
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Sonia Chowdhury.....
Just how stupid is this notion? That's her response to people who support the discredited PACE study being involved in a new study?
Blog 1
Blog 2
On the issue of people signing the petition without understanding the issues of who is involved I have been to a number of ME conferences and met numerous patients who have not even heard of the PACE trial.
One of them was a women who was head of a local ME group believe it or not and she was in a fight with her local health provider to have homeopathy treatment continue for ME instead of it being cut.
Just how stupid is this notion? That's her response to people who support the discredited PACE study being involved in a new study?
Blog 1
Blog 2
On the issue of people signing the petition without understanding the issues of who is involved I have been to a number of ME conferences and met numerous patients who have not even heard of the PACE trial.
One of them was a women who was head of a local ME group believe it or not and she was in a fight with her local health provider to have homeopathy treatment continue for ME instead of it being cut.
AndyPR
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You can always ask them to unsign. description of how to do so here:
https://www.change.org/p/change-org...sign-a-petition-on-change-org/responses/10902
Countrygirl
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I have been checking whether Prof Carmine Pariante is involved with the research as he is a member of the MRC group. I cannot find his name, however. His views of ME are below, underlined in red.
Edited to change Prof Pariante's gender.
Edited to change Prof Pariante's gender.
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BurnA
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This study is a great opportunity to flush out the psychobabblers for once and for all.
No support from PWME until they go - simple as that.
It's time to stand up for ourselves and not rollover at the mention of the word biomedical.
No support from PWME until they go - simple as that.
It's time to stand up for ourselves and not rollover at the mention of the word biomedical.
Countrygirl
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Countrygirl
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.................and just to register a little niggle.
I posted on AFME's page some of my concerns about MEGA and the petition and .........whoosh!........one minute my comment was there and then it disappeared. It seems one is only permitted to support the research and White's involvement. Not impressed!
I posted on AFME's page some of my concerns about MEGA and the petition and .........whoosh!........one minute my comment was there and then it disappeared. It seems one is only permitted to support the research and White's involvement. Not impressed!
AndyPR
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Hmm, I've been expressing my opinion on their recent posts and it looks like all my comments are there, and on the MEGA petition one there are a couple of comments of an hour ago - were your comments on a post of theirs or were they a visitor post?
It sees that patient representatives are divided into two:
Those whose duty it is to graciously inform patients of decisions that have been made. And those whose duty is to cover the backs of others and to be otherwise ignored.
Countrygirl
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AndyPR
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I guess you must have been really critical of them then, congrats! Just take it as a badge of honour
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AFME FB mods just delete inconvenient posts which are critical of afme and its policies. ...
That is an ultimately disempowering modus operandi by afme.
Infantilisation of its members is a long term MO by AFME, which ensures that only those members who are too ill to read much, and those members who are naive, and those members who have personal interests as high profile or personally invested AFME volunteers.... those are the people AFME listens to.
The wider ME patient population are excluded from dialogue with AFME. Informed activists are excluded from dialogue with AFME.
How come AFME is so involved with MRC funded ME research?
How Many Paid Up Members Does AFME Have?
The last count was 5,000.
How come a charity with such a low number of members wields so much influence on UK MRC Funded research?
Please note.... that AFME membership numbers are way down from the mid 2,000s number... the number of AFME members cannot possibly be representative of the UK ME population
.
.
AFME FB mods just delete inconvenient posts which are critical of afme and its policies. ...
That is an ultimately disempowering modus operandi by afme.
Infantilisation of its members is a long term MO by AFME, which ensures that only those members who are too ill to read much, and those members who are naive, and those members who have personal interests as high profile or personally invested AFME volunteers.... those are the people AFME listens to.
The wider ME patient population are excluded from dialogue with AFME. Informed activists are excluded from dialogue with AFME.
How come AFME is so involved with MRC funded ME research?
How Many Paid Up Members Does AFME Have?
The last count was 5,000.
How come a charity with such a low number of members wields so much influence on UK MRC Funded research?
Please note.... that AFME membership numbers are way down from the mid 2,000s number... the number of AFME members cannot possibly be representative of the UK ME population
.
.
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Countrygirl
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I guess you must have been really critical of them then, congrats! Just take it as a badge of honour
Puffs out (now ample) bosooooms!