Petition: Opposing MEGA

lilpink

lilpink

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batteredoldbook

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Checked back in to see if this question had ever been answered but can't see anything. It was a very good question. Best wishes all.


batteredoldbook said:
I'd like @charles shepherd to comment on whether he thinks Prof Holgate fairly and fully addressed the issues raised, or whether his response exhibited the same bias and selectivity that has crippled UK ME thought for decades.
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batteredoldbook said:
@charles shepherd,

I'm asking because, a huge number of remarkably talented M.E patient advocates just signed a very clear vote of no confidence in Professor Esther Crawley. I've had a closer look at it and, well, wow: Look at all this!

"Unfortunately we have no confidence in any study involving Professor Crawley and certainly not one in which she is involved in this all-important role. [cohort selection]
"Professor Crawley seems unable to distinguish between M.E. and generic fatigue."
"Prof Crawley effectively selected children with generic fatigue yet called it CFS/ME"
"Professor Crawley is recruiting a group of patients with generic fatigue yet calling it CFS/ME."
"Professor Crawley further confusing the picture by selecting new definitions willy nilly for no obvious reason."
"she continues to defend the now discredited PACE trial"
"She continually refers to the Dutch FITNET trial having a 63% success rate even though its long term follow up showed no difference between the FITNET and control arms of the study;"
"Even more astounding is her continued defence of the PACE trial itself"
"yet Professor Crawley’s judgement seems to have been that one size of goal is as good as another."
"Perhaps most alarming is Professor Crawley’s intention to proceed with the Magenta Trial effectively a PACE trial for children, in spite of the debunking of PACE and the evidence from patients of severe and sometimes permanent deterioration as a result of GET."

And yet somehow Professor Holgate's response included this:

"As you will have noted I have brought the very best scientists from across the UK to assemble this application."

We cant seem to get through to PDW, the Lancet is currently going against the wishes of 12,000 of us, the CMRC is unable to say whether it supports the biggest bit of UK CFS research to date and Professor Esther Crawley appears to be going FULL STEAM AHEAD at a time that demands caution at the very least. After FITNET, MEGA and his response today, I do not think people with M.E can get through to Professor Holgate.

I want to know whether you are still with us Charles. I'm asking, quite simply, whether you think Professor Holgate responded adequately when 200+ M.E advocates told him very, very, clearly that they had no confidence in Professor Crawley?

@batteredoldbook
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JoanDublin

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Just posted on twitter. What does it say that mainstream funders haven't even bothered to acknowledge the concerns of this project? What potential funders would not respond to the legitimate concerns highlighted in the letter by OMEGA? Ones who already were infiltrated and had made up their mind before any applications, that's who.

It's so obviously a stitch up from the start. Getting more and more annoyed over this

https://twitter.com/i/web/status/842801342154510338
 
Jonathan Edwards

Jonathan Edwards

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JoanDublin said:
Just posted on twitter. What does it say that mainstream funders haven't even bothered to acknowledge the concerns of this project? What potential funders would not respond to the legitimate concerns highlighted in the letter by OMEGA? Ones who already were infiltrated and had made up their mind before any applications, that's who.

It's so obviously a stitch up from the start. Getting more and more annoyed over this

https://twitter.com/i/web/status/842801342154510338
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It is not part of the protocol for mainstream funders to respond to communications of concern, any more than it is for them to respond to referees who are asked to rate the project. If mainstream funders agreed to respond to all communications they would sink in a sea of paper.

What matters is whether or not the MEGA application had a favourable response. that remains to be seen.
 
Jo Best

Jo Best

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I would expect mainstream research funders to assess each grant application on merit and I think that the Opposing MEGA petition did its job by exposing the callous disrespect of patients and families shown by MEGA in their petition and by making it a 'matter of public record' that more people rejected the MEGA petition than supported it.
 
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batteredoldbook

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MEGA started with the views of two hundred advocates being disregarded. Without a foundation of respect; things were never going to go well. Within M.E, patients' precious time is continually wasted.

I move into full opposition to the ME Association.
 
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AndyPR

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slysaint

slysaint

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AndyPR said:
No change in numbers who have signed but if you haven't signed yet, you might want to read the experience of three members of the Patient Advisory Group, who last week resigned - http://forums.phoenixrising.me/index.php?threads/are-you-on-the-mega-pag.48421/page-2#post-827184

https://www.change.org/p/opposing-mega-a-vote-of-no-confidence-in-mega-research-for-me-cfs
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Apart from the one who made the post, have either of the other two commented?

Any plans to replace them @charles shepherd ?
 
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AndyPR

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slysaint said:
Apart from the one who made the post, have either of the other two commented?

Any plans to replace them @charles shepherd ?
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Spoonseeker has put up a blog post since resigning but it merely has a short intro by him and then replicates the info I linked to above.
Hello – I’m back from the MEGA PAG. It didn’t go too well. I’m afraid.

Yes, I know, you told me so…

I’m still trying to work out how to report what happened without falling foul of the confidentiality clause. In the meantime, here’s an account from Natalie Boulton, co-producer of the Voices From The Shadows film, who left at the same time as me. This also appears on Natalie’s Voices From The Shadows Facebook page:
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https://spoonseeker.com/2017/03/24/4210/
 
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charles shepherd

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slysaint said:
Apart from the one who made the post, have either of the other two commented?

Any plans to replace them @charles shepherd ?
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I was involved in selecting the 15 people who became members of the MEGA PAG - 3 of whom have now resigned a

I spoke to 2 of them before they actually resigned

But I am not a member of either the MEGA PAG or the MEGA planning group

Simple answer is that I do not know if they are going to be replaced - I assume that this is something that will be discussed by members of both groups

CS
 
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