MEGA and PAG website update (March 29th 2017)

[Demepivo]

Does anybody know if Wellcome Trust were lobbied by any organisations or patients?

(ie was it a factor in Wellcome turning down MEGA?)

 

[Valentijn]

Does anyone know what their criteria for PEM is?

In the Q&A on their pro-MEGA petition, they referred to it as "exercise-induced stress". While stress can be biological, it would be used in that context as a cause of symptoms (the stressor), and not as the result of something else. Re-branding PEM as a stress reaction suggests that they are rejecting it as a biomedical symptom, and swapping it out with the reaction of psychological stress (which could include physical symptoms) following exertion.

What's really worrying is that this could be their best effort at communicating the details of MEGA honestly to patients.

Yes, AfME seems to completely lack the capacity to understand research and science, which is very unfortunate. I can't imagine that they'd be willing to look so stupid and incompetent in a deliberate attempt to deceive patients.

Let's hope it stays dead for good. I think it's premature to celebrate.

We'll keep our shovels handy in either event ... to bash MEGA some more, or to bury it, as needed

 

[Esperanza]

Delighted to hear Wellcome Trust turned MEGA down for funding. The latter acted like it was a foregone conclusion that they would get the funding! This in itself was rather interesting....
What a blow that must have been to EC's ego....

I wonder if MEGA have now applied for the MRC bioresource funding here:
https://www.mrc.ac.uk/funding/brows...-data-in-partnership-with-charities/#Timeline
The time line would fit & would explain the latest MEGA update.

IF they have applied for this then I hope they are not going head to head with the already established UKME Biobank ??......

IF MEGA get the funding they need/want ( & I sincerely hope not) I wonder how they will ensure that all 10,000 adult patients will have PEM.....

The same concern applies to the 2,000 children. I wonder whether they will be recruited from EC''s previous trials, SMILE, MAGENTA, FITNET etc & who on earth will ensure that the kids are correctly assesssed for ME & PEM....??

Also wonder whther the children's PAG exists in reality, who they are & what involvement they have with the propsed MEGA study.

We only ever hear about the adult PAG.

 

[charles shepherd]

Does anyone know whether the existing ME/CFS biobank applied to the same fund, and if so whether they were rejected too...? @charles shepherd?[/QUOTE]

We obviously have the results of the costings application to the Wellcome Trust

But I need to speak to the ME/CFS Biobank team before making a public annoucement on this

Dr Charles Shepherd
Chairman - ME/CFS Biobank Steering Group.

 

[charles shepherd]

Does anyone know whether the existing ME/CFS biobank applied to the same fund, and if so whether they were rejected too...? @charles shepherd?

We obviously have the results of the costings application to the Wellcome Trust

But I need to speak to the ME/CFS Biobank team before making a public annoucement on this

Dr Charles Shepherd
Chairman - ME/CFS Biobank Steering Group.[/QUOTE]


I have now discussed making a public statement with our team at the ME/CFS Biobank

I can now confirm that the first stage costings application by the ME/CFS Biobank to the Wellcome Trust was successful - which is clearly great news

So the second stage application is now being prepared

Dr Charles Shepherd
Hon Medical Adviser, MEA

 

[Esther12]

Yay!

 

[A.B.]

I can now confirm that the first stage costings application by the ME/CFS Biobank to the Wellcome Trust was successful - which is clearly great news

So the second stage application is now being prepared

Thanks for the good news. This was to increase the capacity of the biobank and to ensure its long term survival, right?

 

[charles shepherd]

Thanks for the good news. This was to increase the capacity of the biobank and to ensure its long term survival, right?

The aim is to help secure long term financial sustainability of the ME/CFS Biobank - which will obviously involve the collection of more blood samples

There are other components to the ME/CFS Biobank bid to WT

But I hope you will understand if I do not go into these right now for reasons of confidentiality

CS

 

[charles shepherd]

This was the December 2016 announcement from the MEA regarding the ME/CFS Biobank application to Wellcome Trust:

http://www.meassociation.org.uk/201...-the-uks-only-mecfs-biobank-29-december-2016/

CS

 

[Molly98]

 

[docsimsim]

Fantastic news, power to the MEA biobank. This is the first ever piece of ME research that myself and several other bedbound ME sufferers in the UK had the chance to be part of thanks to the outreach nurse/researcher who made domiciliary visits. Let's hope funding is obtained to make use of these invaluable samples.
Shame on MEGA for making no attempt to use this existing MEA biobank and instead trying to sabotage it by setting up a rival 'biosiurce' where fatigue and ME are conflated as per usual, by using inadequate selection criteria and excluding severe patients from the word go

We obviously have the results of the costings application to the Wellcome Trust

But I need to speak to the ME/CFS Biobank team before making a public annoucement on this

Dr Charles Shepherd
Chairman - ME/CFS Biobank Steering Group.

I have now discussed making a public statement with our team at the ME/CFS Biobank

I can now confirm that the first stage costings application by the ME/CFS Biobank to the Wellcome Trust was successful - which is clearly great news

So the second stage application is now being prepared

Dr Charles Shepherd
Hon Medical Adviser, MEA[/QUOTE]
s

 

[charles shepherd]

Fantastic news, power to the MEA biobank.

This is the first ever piece of ME research that myself and several other bedbound ME sufferers in the UK had the chance to be part of thanks to the outreach nurse/researcher who made domiciliary visits. Let's hope funding is obtained to make use of these invaluable samples.

Shame on MEGA for making no attempt to use this existing MEA biobank and instead trying to sabotage it by setting up a rival 'biosiurce' where fatigue and ME are conflated as per usual, by using inadequate selection criteria and excluding severe patients from the word go




I assume that you had a home visit, assessment and blood taken by our wonderful research nurse, Caroline Kingdon:

 

[docsimsim]

Yes Caroline visited me twice, she did a wonderful job. They had been hoping to do a 2nd follow up visit (meaning 3 home visits altogether), but they ran out of funds. Really hope that the samples get used to the max by biomedical ME researchers, the more the merrier

 

[charles shepherd]

Yes Caroline visited me twice, she did a wonderful job. They had been hoping to do a 2nd follow up visit (meaning 3 home visits altogether), but they ran out of funds. Really hope that the samples get used to the max by biomedical ME researchers, the more the merrier

Blood samples from the severely affected cohort at the ME/CFS Biobank are being used in the research study into severe ME/CFS that we are funding in Spain (Professor Elisa Oltra et al):

http://www.meassociation.org.uk/201...in-people-with-severe-mecfs-20-december-2016/

CS

 

[TreePerson]

Fantastic news, power to the MEA biobank.

This is the first ever piece of ME research that myself and several other bedbound ME sufferers in the UK had the chance to be part of thanks to the outreach nurse/researcher who made domiciliary visits. Let's hope funding is obtained to make use of these invaluable samples.

Shame on MEGA for making no attempt to use this existing MEA biobank and instead trying to sabotage it by setting up a rival 'biosiurce' where fatigue and ME are conflated as per usual, by using inadequate selection criteria and excluding severe patients from the word go




I assume that you had a home visit, assessment and blood taken by our wonderful research nurse, Caroline Kingdon:

[/QUOTE

Yes Caroline visited me twice, she did a wonderful job. They had been hoping to do a 2nd follow up visit (meaning 3 home visits altogether), but they ran out of funds. Really hope that the samples get used to the max by biomedical ME researchers, the more the merrier

Caroline visited me too. She was lovely and very professional and it is the most care and understanding that I have received as a UK ME patient in 24 years. The fact that someone described as an ME nurse visited me, gave me a huge sense of validation. I really enjoyed her visits for that reason.
I did feel pretty ill the following day - I think mainly from the blood draws but it was wonderful to feel that I could contribute to future research.

 

[AndyPR]

Update from Spoonseeker on the MEGA PAG and leaving

Our attempts to get more clarity led to a souring of the atmosphere and it was hard to see how progress could be made. Far from being welcome partners in the development of MEGA, we seemed to be barely tolerated. Three of us felt that the time had come to resign

My best guess about what happened is that we were always intended to be consultative but when patients protested so loudly about the plans for MEGA as originally announced, the PAG was seized upon as a way to quieten us down: “Don’t worry – the PAG will be there to make sure it’s all done properly!” Prof Holgate even went so far as to tell Forward ME that “PAG members would be the equal of every other member of the MEGA team” which I have to say struck me at the time as neither likely nor even desirable. Personally speaking, as someone who knows next to nothing about –omics, I wouldn’t expect to have the same authority as an –omics scientist on an –omics research project. But I suppose when your mindset is simply to say whatever it takes to get the troublesome patients off your back, you don’t stop to think too much about accuracy.

https://spoonseeker.com/2017/04/04/my-perspective-on-the-mega-pag/

 

[Snowdrop]

As long as the other members remain MEGA will feel completely validated that whatever they do they have patients blessing. 007

 

[Esther12]

Weird that this confidentiality agreement stops them from saying more, even after they've left. A bad look for MEGA imo. I wonder what exactly they commited to not speaking to others about?

 

[Snowdrop]

Good Question. Is the confidentiality agreement confidential?

 

[JohnCB]

Good Question. Is the confidentiality agreement confidential?

I doubt that, but I'm not a lawyer. However from what I have read of legal matters I doubt that the confidentiality agreement is enforceable. If it is it would fall into the field of civil law not criminal law. If it was enforceable, it would be for monetary compensation and for that they would have to demonstrate that they had suffered damage and quantify damages as a monetary sum. They would have to demonstrate to a judge that that Mega had suffered a loss in some way.

However there is probably not a legally enforceable contract in the first place. A contract requires that each party gains some benefit. What benefit do the PAG gain from whatever it is they are supposed to have agreed? They aren't being paid, to the best of my knowledge and I don't suppose they are getting any benefit in kind.

I rather suspect that they have been presented with some pseudo-legal wording and it is being used by MEGA to frighten them. I doubt that there is actually anything MEGA can do. Perhaps they could say, "you have broken the confidentiality agreement, so we won't let you come to any more meetings on our premises." but then the PAG resigners don't want to do that anyhow.