In Newcastle Dr Julia Newton has been doing some proper research into ME/cfs. Her findings are interesting and show that autonomic disorder seems to be pretty universal with this disease. She is hoping that her work on dysautonomia in ME may provide us with a straightforward biomarker for accurate dx. But she is sensible enough to note that ME is a very complicated disease with a range of disorders co-morbid within it.
Dr Julia Newton’s lecture with slides is available here. This is the same lecture given at and Action For ME meeting. She entitles it Standing Up for Fatigue after the brief intro she starts talking at 2 mins 6 secs in.
I would like to see this genuine researcher get an award, but that is highly unlikely. It’s still a massive fight to get the funding for the research!
Perhaps she should suggest workhouses for really annoyingly sick people. Then she’d get an honour or two.
Dr Newton is taking muscle cells and testing them in her lab. From this hopefully some more proof of Post Exertional Malaise can be found, and perhaps a treatment. (I am living in hope). PEM is one of the most debilitating aspects of this disease. It’s what a lot of us call the “crash”. It’s not just feeling tired – whatever some eejits might say, it’s brain fogging, body lead like utter yukkiness.
Dr. Snell who has a background in sports medicine has done some fascinating research on this area.
There are members of Phoenix Rising who have volunteered for follow up studies on PEM. Knowing what it feels like I have to say I applaud their immense courage.
Sorry to do two MEcfs FM Dysautonomia posts on the trot, but it’s good to see real research happening even while the British Government reward those who block it’s application.
I saw the Cardio on Oct 29th and had a 24 hr ECG 13/4th Dec and finally managed to get through to the hospital today where I received a promise that the Professor’s sec would phone me tomorrow. I’ll be amazed if she does.
I am awake during this afternoon’s crash which is better than it has been!