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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, would do a very little exercise. If not, I had coffee and went home. I never pushed myself to do any gym work. After a while I even improved. Don't tell...

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 I've come away on holiday. We arrived on Fri afternoon and I have just dressed for the first time ( Mon pm) which was not advisable since it's crashed...

@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 ME was a major part of the discussion, how could she present the closing remarks?

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? ETA:https://en.m.wikipedia.org/wiki/Gillian_Leng

@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 set out in his letter as his Dept's stance? Am unsure on your point about whether Prof Hooper is assuming that to support Pace is to...

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 writer's approval. The tone was strong but the argument made that the DOH had recognised ME as a neurological illness for many years, several examples...

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 been very very careful, no salads, ice, sealed bottles etc. Husband recovered and I didn't. Was not feeling dreadful but still had the runs so went...

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 things but has S4ME submitted a response to Nice as a response from the forum? Several individual people have written their own opinions but have I missed...

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 headings. For anyone who can't read the whole, there is a summary near the end. Well worth reading for anyone who will be representing a group of...

@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 and the insurance companies don't like approving it. I didn't know Dr Speight was interested. An odd point for me is that when I developed "...

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 for other illnesses can be used to improve symptoms of ME. At 71, I will not be alive to see drugs specific to ME be developed unless Dr Davis' theory...

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 with false illness beliefs and reconditioning. There is also a cover up of medical misfeasance/malfeasance.

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-hospital-qqdw3zffj "The GMC also faced criticism for “a lack of candour” with families over the potential for conflict of interest, because Dr...

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 Barton and how the GMC handled that. Unbelievable. Have asked mod if title can be changed to better reflect the content. I don't remember seeing...

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 workings. Dr Myhill's case was being heard at a similar time to Dr Jane Barton's. ( Rather a shame that Dr Myhill was inaccurate in saying that Wessely...

@Stewart - strongly agree that relationship with MP is best seen as an ongoing dialogue not a one off communication. @Barry- thank you for your description of how you made a connection with your MP. Very different from the template letters which do the rounds and which I suspect are not very...

@Andy- thanks.