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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.

Tried the link and it says the requested page can't be found.

Yes, and they don't want that looked at too carefully. Has he diverted us from actions that would have helped us more? In my view, in the light of the debate last week, yes. Now it's over, then he can afford to drop it.

My husband woke suddenly during the night on the day of the debate believing I had been cured. He was so disappointed it was only a dream...........

Thanks @strategist. An excellent strategic speech.

Ed Davey ( Libdem) was there and made the first speech after Carol's. A strong, strategic speech which hopefully will give the Dept of Health pause for thought. He was interested enough to rearrange his schedule to be there and to be briefed the day before.

Ed Davey's constituent was me. The cardiologist actually said "pwme are mad but you're not". He thought he was complimenting me. Ed was shocked. Really appreciate Ed spending an hour the evening before the debate to get to grips with it. He rearranged his diary to be able to do it so next job...

This is @Alvin quoting @dave30th . Have spent an hour with my MP this evening and given him @dave30th latest letter as well as many other briefings. He has adjusted his commitments so as to be there for as much of tomorrow as he can. As I understand it, he wil not make a speech but is...