I too was wondering about this. I have developed high BP in recent years for which I receive treatment although in early years of ME, BP was very...
I went to their conference in 2016 or 17, and am considering going this year if I have the energy. It’s a fair drive from where I live but I would...
Me too. But i’m thinking that 12 months or 2 years ago, we would probably have been even more thrilled. Does this indicate that we know at some...
Enormous thanks to Erica Verrillo.
Heparin injections used to thin the blood when flying ( I have factor V Leiden, a blood clotting disorder) temporarily improve my energy levels,...
Sleep is the problem for me. Have had to stop again because of significant sleep disruption. Will try again after a break because I think , not...
@Suffolkres - thanks. What is a stage 3 complaint?
In January, Helen Finn, Communications Manager for NICE replied to a letter we had sent re the composition of the Committee in the following...
Have I remembered correctly that this work has been financed by MEA? Will Charles Shepherd be going and could he produce a report for us, screen...
@Ben H While you are here - well done by the way- do you know what is being looked for in the spinal taps in Uppsala? Is it hypothesis testing?...
Dr Davis talked about the new research centre in Uppsala run by Dr Berquist who is the expert on spinal taps for ME patients which he seemed to...
@Sasha I can verify that waist high compression tights are wearable but with difficulty. I have damaged both thumbs, confirmed by X-ray, in...
Thanks @Sasha. Plenty to read there. ETA: Sorry to hear none of treatments helped.
My experience of OI:- Before I used a wheelchair, I used to carry a light folding stool with me so that if ever I had to stop walking, I sat on...
I have started and been increasing slowly my LDN dose- too soon to judge efficacy. But in the last week, sleep has worsened. Anyone else noticed...
I advertised it in a local group, also making the point that small donations were welcome and showed the involvement of many pwme.
I donated a couple of days ago but forgot to say here which is a shame because I missed the chance to tell David how much his work is appreciated...
Just in case anyone missed David Systrom’s presentation ( he is very impressive), there is already a thread here where Llewellyn King talks to...
I was prescribed LDN last Dec but because of ongoing chest infection and getting it made up, I didn’t begin to take it until about 6/7 weeks ago....
[MEDIA] Utube of Carol’s question. Added advantage that the House is very full so question will have had wide exposure. ETA: layout
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