Via the POTS Uk facebook page I’ve learned that a group at Newcastle University here in the UK, have received £1.6 million to do research into the bio-medical side of ME. Specifically they are trying to discover what causes the autonomic dysfunction in patients with ME. Prof. Julia Newton is involved and from what I’ve gathered on forums she has a very good reputation.
I can’t work out exactly what’s happening here but from a discussion on Pheonix it looks as though this new research is a continuation of a sleep study done some time ago.
What’s interesting about this study is it seems to see ME and dysautonomia as linked. Prof. Newton is known for her work with POTsies. According to one comment on the Newcastle University page Ramsey in 1981 included orthostatic tachycardia as part of the ME diagnosis.
There’s a couple of aspects of this research that I am uncertain about – and therefore being cautious about. First of all there doesn’t seem to be a definite answer, that I can find, on the ME criteria they will use. One poster suggests separating out patients who fit the International Consensus dx and those who don’t.
Proper well targeted research into ME in the UK has been very thin on the ground. The bizarre insistence that patients have either made the disease up, brought it on ourselves or are depressed (and nothing else) has helped block funding and proper care for patients, especially in the UK, but elsewhere as well.
I am not an optimist. But I’m not a pessimist either. I do wonder, even hope, that as the “old school” people retire and die off, their egos in tact, that new research, that genuinely tries to find a suitable treatment, management and, hope of hope, a cure, could happen.