For better or worse, I found out today I’m on the MEGA patient advisory group. ‘Mixed feelings’ is the best way to describe my reaction. I ‘m pleased that I may have a chance to make a difference to the study but aware that it might not be easy. I will do my best…
In the meantime, if anyone who is reading this has also been accepted onto the group, please get in touch. I only know of two other members so far. It will be very useful for us all to be in contact.
7 thoughts on “MEGA Patient Advisory Group”
Let’s hope you can help them see sense.
I had applied, but pulled out at the last minute because my health just isn’t up to it with such a short timescale. I hope you will be able to share some of how it’s going, obviously within the constraints of privacy for others.
Great news. Our needs are pretty simple CCC plus post exertional malaise- entry criteria, so that the subjects have the disease. DePaul or similar questionaire re symptoms ie record actual the symptoms of the disease. MEGA seems to just be a bio bank at this stage hence samples need to be consistent with USA and the UK bio banks already in existence. Money for ME/CFS research not to be conflated with general tiredness studies. Diagnostic screening tests for ME/CFS exist- NCNED Australia, OMF – USA, Bio21…
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Great news for us. Good luck with it, hope it doesn’t take too much out of you.
Personally I would push for ICC which includes PEM/PENE but as long as a criteria is used that means the study is not just about general fatigue instead of ME.
Also hopefully you will be able to find out why the existing Biobank is not being used.
Please keep us as informed as you are able to within the constraints of the study.
You can always withdraw if you feel you are being used; let’s hope all the patient advisors share your ideals.
“It will be very useful for us all to be in contact.”
Only for the patients. The PAG will be more useful to the MEGA people if the Patient Advisors don’t actually talk to each other.
At any rate, good luck. I hope the work involved doesn’t make you sicker.
Good luck with this. I hope you can steer them away from it being under the control of the Wessely empire. Like others, I’d be happier if they just helped build up the existing biobanks. This is too much like territory building to ensure future work for Crawley and co.
Good luck. As Margaret Smith has said above, this is good news for us. Hope it goes well.