So one challenge that I believe we face is that if most, if not all, research studies insist on PEM as part of the inclusion criteria, we run the...
Patient involvement in research—a brief history There is a well-described mismatch between the research that is done on a particular condition...
Moderator note: The first 8 posts on this thread have been moved from here. ____________________________________ Is there any systematic research...
I've written a blog post about the recent amendment to the Cochrane review and how it doesn't address the major flaws. I will post the full text...
Your experience of ME services - Survey report by #MEAction UK Article:...
Excellent article in Huff Post by a woman with ME who was told to exercise, and suffered as a result. I Sometimes Feel Defeated By My Disability...
write up on AfME website: What's it like having a debilitating illness that some people don't believe exists? When it leaves you too unwell to...
full title Dear Doctor: What Not to Say to Me and Other Fibromyalgia Patients although the author has ME/CFS Dear Doctor, I know you are...
A “fiercely independent” woman who has spent months trapped inside her own home after her medical condition deteriorated has said that it took a...
https://blogs.scientificamerican.com/observations/a-streamlined-pathway-to-drug-approval/ Author advocates for using patient experience data and...
I have no idea what this might be like. I just thought it was interesting to see "loss of resources" mentioned in a paper. There is also a "loss...
Cognitive symptoms are common for everyone who has M.E., but it is the cognitive fatigue which disables me the most. It is the reason that I...
Two images will haunt me to the grave. First image: my daughter, Zoe, then 14, sits on the bottom stair. It’s time for bed. Or in an hour it...
Abstract Background A significant limitation of the traditional randomized controlled trials is that strong preferences for (or against) one...
This looks like it could be very annoying https://journals.sagepub.com/doi/abs/10.1177/1367493519864745 Ditte Roth Hulgaard1, Charlotte Ulrikka...
Source: Psychology of Men & Masculinity Preprint Date: April 30, 2019 URL: https://www.dora.dmu.ac.uk/handle/2086/17973 'The real me shining...
In a couple of weeks’ time I’ll be meeting with the Minister for Disabled People, Health and Work to raise the recurring issue of access to...
A young woman with very severe ME contacted me to help tell her story. Over the past couple of months she’s told her harrowing story of...
By Open Medicine Foundation Researchers at Stanford University and UC Irvine appear close to giving people with chronic fatigue syndrome...
I don't think this article from yesterday has been shared yet on the forum? Nice to see coverage from Canada. White Rock woman shares her...
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