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You could be describing my bedtime experience @Michelle, apart from the autumn pattern. I just have such problems sleeping- have tried everything you describe even the modified sleep hygiene which doesn't work. Calming music, boring books etc. Never get 7-8 hours of uninterrupted. A good night...

I slept through Woman's Hour because my sleep pattern is all over the place at the moment but have just listened on iplayer. It is at the beginning of the programme 0-22 minutes. I can't really find words. It was a superb piece. Thanks to Sean for his bravery. He speaks as well as he writes- so...

Pleased to see my MP, Sir Ed Davey ( Libdem), in support of the EDM. As party leader (albeit of a small party) I know his time is now more pressured especially with seats in the House to win. Grateful for his ongoing help.

It is good to see some Forward ME minutes but I think it would have been helpful if there had been a bit more detail. I got a bit confused and the severe brain fog doesn't help. For example there has been a lot of change of personnel recently and it would be useful to know which organisations...

I don't tweet unfortunately but do subscribe to the Guardian. Have been feeling very cross at their lack of coverage. Once again it looks as if I will be changing my subscription back to the Times with a letter to the Guardian saying this. But where do I get the energy? I don't know why they...

I agree. I know many on this forum have tried to interest their MP without success but with persistence I think much can be achieved. Of course persistence takes energy which is what most pwme do not have. Sometimes I need to be involved via dictation to Mr B because I simply can't write. For...

Jerome Burne has written some good articles for the Mail on ME/c fs. This was written by a Jonathan Rose for the Mail Online. If you google his name he is described as a trainee reporter and has Muck Rack after his name- no idea what this refers to. He's written on a number of topics in the...

Is anyone in touch with Alem Matthees? Can someone send him the statement?

Rapid response by Derek Enlander to an article by Strauss in the BMJ (2002). I think Dr Enlander is now mostly retired but others might know more. Caring for patients with chronic fatigue syndrome BMJ 2002; 324 doi: https://doi.org/10.1136/bmj.324.7330.124 (Published 19 January 2002)Cite this...

https://recovercovid.org/funding Has there been research showing that new onset diabetes is a sequela to covid? Funding opportunities available for this and other sequelae.

Tweet from @Wilhelmina Jenkins p Wilhelmina Jenkins @minadjenkins Replying to @jspotila and @NINDSdirector If, as Dr Nath has suggested, there are serious recommendations for clinical trials coming out of the intramural study, there has better not be one word from NIH about not funding...

Moved from the Long covid in the media thread Just read a tweet in my emails so please excuse presentation. Jennie Spotila has just posted "Gosh! Lookit that! NINDS is funding clinical trials for #LongCOVID! Wow! And all these years they’ve been telling the #MECFS community that they...

currently, both sides of neck, left more prominent.

I had an anaphylaxis at the end of 2019, when I was 72, a reaction to eating a satsuma ( no previous reactions to any food, tree, pollen, just out of the blue). Was in hospital for 5 days, treated with steroid tablets which initially wouldn't go down because my throat was so swollen, and...

Done. Go well @dave30th .

Moved post My own comment relating to blood clotting is a personal story that rests on a comparison of my ME symptom response to long journeys. I realise that it is only my story but it has given me cause to wonder about blood clotting in relation to ME. I am currently in Cornwall just...

Moved post There is a letter in the Observer today ( hard copy, page 50) from White, Chalder and Sharpe which needs a (sharp) reply. It is in response to something written by Ravi V eriah Jacques. Headed "Long Covid: does rehab work? ........ " But we disagree when he (Ravi Veriah Jacques)...

@lunarainbows - I was prescribed compression garments at hospital for lymphoedema and lipoedema. Firstly I had prescribed by the hospital up to the waist tights for about a two to three year period. My blood pressure at ankle was never measured but each leg was separately measured and marks...

My dentist has sent an email saying that full covid precautions are being maintained for the time being. That means waiting outside until shown in when temperature is taken and sanitiser provided; hands to be washed with soap and water on entering treatment room. Masks to be worn of course.

https://www.thenorrislab.com/research/ehlers-danlos-syndrome Another link to the Norris lab who are doing the research on hEDS but I can't see a link to an article on the genetic basis of hEDS. There is a more detailed 2020 article on hEDS which I haven't yet had the time to read fully but it...