Annie 1m Hi I recently started taking Rapamycin as it is now one of the drugs about to be researched by Simmaron Research as treatment for M.E. There has been quite a lot of anecdotal evidence that it is helping to reduce fatigue in people with M.E. I have found that the maximum I can take is 2mgs once a week which has boosted my energy levels by about 30% and I generally feel less unwell. The ‘normal’ dose for M.E is thought To be 4 to 6mgs once a week. But if I go above... Read more ..read more

Greetings! Looking for Recruiting participants: We are working on a research project which aims to explore the impact of chronic fatigue syndrome ME/CFS on identity construction among young adults aged 18 to 25 at Sheffield Hallam University. I am doing this research under the supervision of Dr Tria Moore C.Psychol, AFBPsS, who is Health Psychologist, Psychotherapist Senior Lecturer in Psychology and MSc Health Psychology Programme Director. We would like to hear from you if you: - Are... Read more ..read more

Dr. Lonsdale will be a hundred years old April the 22 (born 1924). Collecting thank yous, congratulations and well wishes to a Google form, collated and sent to Dr Lonsdale. If you haven't yet written something and want to help celebrate the centennial of a man who has spent his life to alleviate suffering - please add your note. Document is open until the 16th of April and so far we have 35 contributions. Link to document here ..read more

Stoo Brown submitted a new resource: Poo Transplant resolved my ME :-) - The Power of Poop I am a 53 year-old white British male living in Scotland. I had ME for ten years. Initially it was mild (although severe during relapses) and I was able to do quite a lot - although I had to retire from work. After about five or six years the ME got gradually worse and on average my ME would have been classified as 'moderate' although severe during relapses, which were quite... Click to expand... Read more ..read more

I’m not sure this is the right place to post this, but I just went to Florida to Nancy Klimas’s clinic and wanted to give you a report. I saw a different doctor, but the whole place was amazing. The doctor saw me for three hours! Who does that these days? It was a huge relief to finally talk to someone who knew all about ME/CFS. She ordered many, many lab tests (about 30) which I have to get at several different labs because they’re so specialized. When all the results come back, I’ll have a... Read more ..read more

Trigger Warning! Please help a fellow ME sufferer by signing the following petition and sharing if you are able: Sign the Petition Save Millie's life - Royal Lancaster Infirmary must STOP causing Millie harm www.change.org Some more info about what’s happening: https://twitter.com/i/web/status/1776977717021339883 'I can't walk, talk or eat - doctors don't believe me and I think I'll die' Millie McAinsh says she's 'constantly hurting' and claims doctors 'won't listen' to her wishes. The distressed teen is believed to be suffering with ME, a debilitating illness that is often misunderst ..read more

The AVA A Vagus Adventure private facebook page (a great resource) has just announced funding for a feasability study on VNS for ME/CFS. "We are HUGELY excited to announce that after several attempts at obtaining funding we have now been successful at receiving £109,520 from the Chartered Society of Physiotherapy to conduct a feasibility study investigating tVNS for people with ME/CFS!! Absolutely BRILLIANT... Read more ..read more

My ME entailed high blood nagalase causing loss of six teeth due to reinfection of past root canals and getting infections from simple cuts. I'm curious if CFS/ME patients are dying from Covid at a high rate ..read more

Diagnosed with ME in 1994, my son suffered from debilitating fatigue, unable to sit up and barely able to talk until 1997, when he was admitted to the National Neurological Hospital, London. Following 10 weeks as an inpatient, he learnt to sit and walk again but after some medication which was ceased, had developed constant dizziness, shortly after he developed tinnitus. By 2003, he was 50% recovered, driving, teaching guitar, studying, working in a bookshop, when he contracted Epstein-Barr... Read more ..read more

I've noticed over the 8 years of my ME/CFS, the few times I've taken antibiotics for about a twice-a-year UTI, I feel less fatigue. Not every time, but maybe 30% of the time. I don't feel any more fatigue when I come down with the UTI, just better taking some antibiotics. Anyone have any ideas why ..read more