In the earlier days of my illness, I followed the energy envelope theory with some success. I even went to the gym and, if I had enough energy,...
I have some data from my Fitbit hrm which describes my last week of trying to avoid pem as much as possible. It's not been a usual week because...
@Snowdrop " I think ME will be off the table" I'm inclining to agree. I cannot see how the dep Chief Exec of Nice can be involved otherwise. If...
What is the dep chief executive of Nice doing there giving the closing remarks especially when ME is in the process of being reviewed by Nice?...
@Esther12 I agree with you that it's hard to follow the argument carefully when we don't have one side of the correspondence e.g.what did Lord...
O'Shaughnessy's letter wasn't submitted. Perhaps there is a code which advises that letters written to someone else not be reproduced without the...
I contracted an unpleasant disease in Sri Lanka where I was on holiday in about 2004, d and v etc, 4 years before I was diagnosed with ME. We had...
Thanks @Andy. Will this be available for members to read before submission to Nice?
My reading on the forum has had to be curtailed recently but I have tried to read on this thread as often as I could. I may still be missing...
http://occupyme.net/2018/07/16/how-to-represent/#comments This is a recent blog from Jenny Spotila on how to represent patients. Written under 5...
@Sly Saint Yes, in the US there are patients on the forums who are getting benefits from IVIG sometimes in combination with R'mab. It is expensive...
I would like a lot more work done on blood. Things like viscosity, blood volume, shape of red blood cells. My wish is to see if drugs prescribed...
In the context of ME, I also thought it a scandal that we cannot donate blood but we have a disease, to be treated according to Nice, by dealing...
Anyone?
@adambeyoncelowe Thank you for the date. I've incorporated it into the title.
https://www.thetimes.co.uk/article/hospital-deaths-rogue-doctor-jane-barton-still-lives-in-area-after-12-year-killing-spree-at-gosport-war-memorial...
Yes. I remember the S4ME discussion. I just think it's wise to be as accurate as possible. I was particularly interested in the info about Dr Jane...
Merged thread A report from Dr Myhill on the GMC, MAIMES and Dr Jane Barton-30th June 2018 A rather interesting insight into the GMC and its...
@Stewart - strongly agree that relationship with MP is best seen as an ongoing dialogue not a one off communication. @Barry- thank you for your...
@Andy- thanks.
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