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Are you on the MEGA PAG?

Demepivo

Dolores Abernathy
Messages
411
People were notified today if they were on the MEGA Patient Advisory Group (PAG). There were 45 applicants for 15 roles.

I know that Spoonseeker is on it. (https://twitter.com/spoonseeker)

<blockquote class="twitter-tweet" data-lang="en-gb"><p lang="en" dir="ltr">Found out today I&#39;m on <a href="https://twitter.com/hashtag/MEGA?src=hash">#MEGA</a> PAG. Will do my best to represent patients. Anyone else out there also on PAG, please get in touch...</p>&mdash; Spoonseeker (@spoonseeker) <a href=" ">20 December 2016</a></blockquote>
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Are you on it?
 
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charles shepherd

Senior Member
Messages
2,239
Has @charles shepherd any comment on this? That's really bad that three members have resigned giving indications that things in MEGA were as bad as we feared

I am aware that 3 members of the group have resigned today and I have seen their letters of resignation

However, I think it's up to them to provide more information as to why they have decided to resign

Although I agreed to go through all the applications for membership of PAG and (along with MERUK and someone from MEGA) make recommendations on the most suitable applicants I have not had any further involvement with PAG and I am not a member of the MEGA planning group

CS
 

Snowdrop

Rebel without a biscuit
Messages
2,933
What I'm really interested in is: Why hasn't the rest of PAG resigned yet?

We knew what MEGA was about and it's confirmed by three resignations so. . .
It's really not helpful to all those suffering with ME to prop up and give credibility to MEGA.
 

JoanDublin

Senior Member
Messages
369
Location
Dublin, Ireland
I am aware that 3 members of the group have resigned today and I have seen their letters of resignation

However, I think it's up to them to provide more information as to why they have decided to resign

Although I agreed to go through all the applications for membership of PAG and (along with MERUK and someone from MEGA) make recommendations on the most suitable applicants I have not had any further involvement with PAG and I am not a member of the MEGA planning group

CS

You misunderstood me. I know you had no further involvement with PAG than initial streaming and recommending. I was only asking if you had anything to say about three members resigning in this way. But clearly you don't.
 

A.B.

Senior Member
Messages
3,780
What I'm really interested in is: Why hasn't the rest of PAG resigned yet?

We knew what MEGA was about and it's confirmed by three resignations so. . .
It's really not helpful to all those suffering with ME to prop up and give credibility to MEGA.

The patients that are staying probably think it will be the good biomedical research that we all need, or that it will be at least decent and that Crawley and White pose no real danger.

Good biomedical research would erode the credibility of the BPS approach, which in turn would threaten the CBT/GET business that White and Crawley have built and are defending. It doesn't make any sense to trust them with a project that claims to be interested in good biomedical research. The only interest these people have is in ensuring that CBT/GET continues to be viewed as the evidence based treatment of choice, and what they really need right now are biomedical null results because the OMF, Aussies and the Norwegians are about to put them out of business. The easiest way to get a null result is to simply use a crap sample. No amount of good science can produce anything of value from that. Another way to get null results is to measure things that are irrelevant, and they have not told us exactly what will be measured, while also repeatedly telling us that tests may be cut due to budget constraints or following input from the patient advisors (with at least a portion of advisors coming from Crawley's predetermined advisor group IIRC).
 
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Messages
13,774
I am aware that 3 members of the group have resigned today and I have seen their letters of resignation

Do you know if MEGA have a responsibility to inform any funders they've applied to of the resignations? If the patient panel was a part of their applications, wouldn't they need to update on this?

It's difficult to see how Crawley could agree to the sort of safeguards informed patients would want. The PACE promoters are so far from reality I don't see how some happy compromise could be found. We need to focus on going past them.
 

Demepivo

Dolores Abernathy
Messages
411
One such person is Russell Fleming.

Unfortunately the science is over his head and he's admitted to having a crush on Esther Crawley. He got the role by being a non stop sycophant.

Surely the ME/CFS community deserves better representatives.

Fair play to Spoonseeker & the other 2 for making a stand.
 
Messages
13,774
One such person is Russell Fleming.

Unfortunately the science is over his head and he's admitted to having a crush on Esther Crawley. He got the role by being a non stop sycophant.

He used to post as Firestorm (?) here and I always got on with him. How could he possibly not be disgusted by Crawley? Hopefully it will implode before Crawley gets her mits on any more funding.
 

JoanDublin

Senior Member
Messages
369
Location
Dublin, Ireland
He used to post as Firestorm (?) here and I always got on with him. How could he possibly not be disgusted by Crawley? Hopefully it will implode before Crawley gets her mits on any more funding.

I'm afraid he was a big proponent of MEGA on Twitter, encouraging people to sign, telling people to ignore the critics and saying that we needed Crawley as it would involve children, etc.