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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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I guess the MEGA application to Wellcome for funding will be submitted within the next week or so.
I guess the existing UK ME biobank application to Wellcome will be going to the same fund, so they will be directly competing for funds.
I guess the MEGA petition has already been sent to Wellcome in support of the MEGA applicaton.
I guess the founders of OMEGA will also be submitting their petition to Wellcome in good time for it to have maximum effect.
I guess the OMEGA founders may also tell Wellcome that the existing UK ME biobank is fully supported by the ME patient community.
That's an awful lot of guessing.
It would be nice to have a confirmation or denial of some of my guesses.
My main effort from now on will be to assist with and support the application from the ME/CFS Biobank
This application for funding has now been submitted to Wellcome Trust
I am not involved with either petition (MEGA or OMEGA) - so have no idea as to what is happening with the petitions
My main effort from now on will be to assist with and support the application from the ME/CFS Biobank
This application for funding has now been submitted to Wellcome Trust
I don't have an update on progress with the MEGA application and am not involved with the submission
And having done my bit in helping to select people to be members of the MEGA PAG I am no longer involved with this source of patient input to MEGA
CS
I was planning on sending my feedback on MEGA to the MEA today but, while reviewing what I had typed out, my wife managed to delete my draft email....and, sadly, with no chance of recovering it
Is this to ensure the continued existence of the biobank, expand it, or conduct studies with the samples?
@charles shepherd
So pleased to hear your efforts are fully with the ME/CFS biobank. I understand you've been instrumental in it from the start, and I thank you for that. Good luck with it. I do hope the application is successful.
Can you clarify whether this application will be in direct competition with the MEGA application - is it to the same fund?
I'm wondering what the response was to the initial MEA consultation about MEGA flagged up in ME Essentials before Christmas. I remember there was talk back then of consulting members again once we know the details of the MEGA project. Has this been shelved?
If the two bodies are indeed competing for funding from the same source, I can't see how the MEA could possibly support MEGA or have anything further to do with it.
Good luck to them. They have my respect and best wishes for putting themselves forward into that role, I sincerely hope that they prove me wrong and that they are able to positively affect MEGA.The list of the PAG members has just been published:
http://www.megaresearch.me.uk/mega-team/patient-advisory-group/
I don't whether they have or not, although I would guess that if they had then they would have posted about doing so? Mind you, I can well imagine though that there would be nothing to compel Wellcome to view it alongside MEGA .Does anyone know whether the OMEGA petition has been sent to Wellcome to be seen alongside the MEGA petition and grant application?
Petition update 'Letter to Mainstream Research Funders'
- https://www.change.org/p/opposing-m...idence-in-mega-research-for-me-cfs/u/19240607