Top reasons ME research is an opportunity

A "small" but important ask would be to get ME included in all medical studies. If all recently graduated doctors had the right end of the stick of ME they would probably get frustrated and start complaining that they had nothing to offer PwME. Doctors complaining will unfortunately (probably) be more effective than patients complaining, and of course more PwME would be taken seriously. This is a project that would take years to bear fruit, but would be very helpful in the long run.
 
andypants said:
A "small" but important ask would be to get ME included in all medical studies. If all recently graduated doctors had the right end of the stick of ME they would probably get frustrated and start complaining that they had nothing to offer PwME. Doctors complaining will unfortunately (probably) be more effective than patients complaining, and of course more PwME would be taken seriously. This is a project that would take years to bear fruit, but would be very helpful in the long run.
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Probably going off the point but there's a pilot study happening in the UK during the academic year 2018/19 on methods of teaching medical students about ME, plus a survey of all UK medical schools to find out what type of education they currently offer.
 
obeat said:
Probably going off the point but there's a pilot study happening in the UK during the academic year 2018/19 on methods of teaching medical students about ME, plus a survey of all UK medical schools to find out what type of education they currently offer.
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There is also the USA group set up by Lucinda Bateman and other clinicians who specialise in ME who I think are discussing medical education.
 
Ravn said:
How about linking in with work done on microRNA by Prof Alain Moreau who recently presented his findings at Stanford and CMRC2018? Health Canada is likely to feel safer looking at options involving Canadian researchers already established and internationally respected in the field of ME research, rather than starting from scratch. I believe microRNA is a fairly new field of research - not just in ME but new full stop – and it could have implications not just for ME but all sorts of other diseases which would probably make it more appealing to any funding body.
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Yes, 'give more to Moreau' is an easier sell, especially if he's doing cutting edge stuff.

Do you know how, if at all, Moreau's microRNA work may fit with the metabolic trap notion?
 
ScottTriGuy said:
Yes, 'give more to Moreau' is an easier sell, especially if he's doing cutting edge stuff.
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Yes, funding organisations are typically conservative but like to see themselves as progressive and cutting edge. That's why I think Moreau would likely be one of the few ticking both boxes.
ScottTriGuy said:
Do you know how, if at all, Moreau's microRNA work may fit with the metabolic trap notion?
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No idea, sorry. But somebody at the Stanford symposium said they thought possibly all the approaches presented there could be 'correct', just facets of the same thing.
 
Given my expectations based on previous meetings with policy advisors, the meeting went well - she was very open to hearing my narrative contrasting HIV and ME, both personally and professionally in our health care system, including and especially the polar opposites in research funding - turns out she is responsible for the HIV file - basically, ME is now on appearing on her radar and she is perusing the landscape and already had a few more meetings with key ME stakeholders lined up - so in spite of my reality based low expectations, I think, if we tread carefully, we can leverage this little bit of traction into more traction.
 
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