severe me

https://www.meresearch.org.uk/research/activated-hervs-and-immune-response/

I have started this thread as a lot of advocacy campaigns , and some research utilise online questionnaires to gather info. The James Lind Alliance use this format for their PSPs , and will do so for the ME one. As discussions elsewhere have highlighted , getting input from those severely...

Promising news from Norway. The Norwegian ME Association is working together with the foundation and institution Røysumtunet with plans on developing care for patients with severe ME. The institution was established in 1965 and will soon have 12 available places, as an offer for patients with...

Submissions are now sought for a special journal edition, "ME/CFS - The Severely & Very Severely Affected" Guest Editors: Dr. Kenneth Friedman Laboratory Corporation of America Holdings, Burlington, United States Dr. Lucinda Bateman Bateman Horne Center, Salt Lake City, United States Prof...

I've only read the summary so far, but it looks amazing. Here are a few Google translated quotes from the summary: "A key message in the report is: The most ill ME patients are an extremely vulnerable group with minimal or no margins, where even small mistakes can lead to prolonged and severe...

New BACME guidelines for severe ME See post #17 for copy of the 2019 BACME document and post #43 for the 2024 update " The Sussex ME Society works for the nearly 5,000 people in the county affected by Myalgic Encephalopathy (ME) or Chronic Fatigue Syndrome(CFS) including many people from the...

I have created a website on severe ME: “A Life Hidden is dedicated to those shut away from the world because of the intense suffering of ME (myalgic encephalomyelitis). This site is a collection of my advocacy work, and I hope that it will serve as a resource for anyone wishing to understand...

https://bmjopen.bmj.com/content/8/9/e020775

The 25% ME Group: The Crushing Physical Burden of ME by Simon Lawrence of the 25% ME Group for those with severe ME on 14/08/2018 https://25megroup.org/the-crushing-physical-burden-of-me There is clear evidence that ME is not the same as depression or any other psychiatric disorder. In 2015...

Anyone read this book or know anything about the Essex severe ME service which was run by Prof Findley which the author Catherine Saunders got support from and appears to be basing advice on their approach Ive been asked to share it on a facebook group it is quite expensive even in kindle so...

The long version of this clip where Howard Bloom recalls having severe ME has been viewed 500000 times in 1 day...

My 33 yr old daughter is 95% bed bound. Ill for 2-3 years, and progressively getting worse though we are trying treatments with a ME specialist in NY. The caretaking support at my local hospital seems to have no knowledge or experience with ME. I'm looking for resources for caretaking info...

This thread has been split from the 'News from Scandinavia' thread Thought it might be useful to have a thread on news from Scandinavia. Hopefully it can become an archive and useful as a reference in future. Starting with the kickoff of one of the four research projects which recently got...