pem

PEM: It's Time to Retire the Term by Pete Hanauer It is long past time to retire the term PEM and replace it with somethingthat accurately reflects what happens to ME/CFS patients after physical or mental exertion and that respects their dignity. We suggest the term Post Exertional Disability...

Posts on PEM moved from this thread as they had gone off topic.

I was surprised that there doesn't seem to be a thread on this paper given it discusses a few times the survey that was run here. In this case, I found it difficult to know whether to put this in the biomedical or psychosocial research section. I didn't think it was a good fit for either...

I’ve been preparing to move now for 4 months. And I’ve been doing renos for 10 days. I don’t do any physical work, or very little, but I go to the house everyday to make sure workers are okay and know what to do. I also run errands so I don’t pay these guys to go shopping. I brought my...

Meta-analysis investigating post-exertional malaise between patients and controls First Published July 5, 2018 http://journals.sagepub.com/doi/full/10.1177/1359105318784161

Dr. David M. Systrom of Brigham and Women’s Hospital (Boston) is confident that his team has objective evidence of small-fiber polyneuropathy (SFPN) in 40-50% of ME patients. Dr Systrom was interviewed by Llewelyn King in this video: . I put the timestamp at the part involved with SFPN but the...

http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0197811

Mark VanNess, PhD presented at the annual meeting of the American College of Sports Medicine. Lariel Mateo presented at the University of the Pacific’s Undergraduate Research and Creativity Conference. http://www.workwellfoundation.org/research-and-latest-news/

For those interested in participating in ME/CFS research. https://redcap.is.depaul.edu/surveys/?s=YJNCDPHXTH

May 2017 Neural consequences of post-exertion malaise in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Dane B.CookabAlan R.LightcKathleen C.LightcGordonBroderickdMorgan R.ShieldsbRyan J.DoughertybJacob D.MeyerbStephanieVanRiperbAaron J.StegnerbLaura D.EllingsoneSuzanne D.Vernonf...

I’m currently crashing and I’m just curious about how you would describe your crashes/flares/PEM/bust phases? What does it feel like? (Bearing in mind I won’t be able to read long answers ;)) To me it feels like the top of my spine is inflamed and also the area which is likely my spleen. Light...

via https://cfsme-registry.info Brief Summary: This pilot study is intended to identify sex differences in myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS) during recovery from brief but high effort exercise tests. It is expected that women with ME/CFS as compared to males with...

I wrote this primer last year, outlining the flaws in the GET research and explaining why GET is likely to be harmful for people with ME/CFS. It is specifically targeted towards health professionals and disability assessors, to give them a summary of the issues with the GET research. The primer...

I came across a number of interesting Youtube videos which featured Dr Derek Enlander (who I had not heard of). One of the good guys and very anti-PACE. This was one of them from 2013 This is excerpted from the Mount Sinai Medical Center ME CFS Symposium November 2013 In it he talks about a...

Huge thanks to everyone who took part in the poll and shared it on social media. In January, our small group of research-oriented ME/CFS patients including Simon McGrath, Graham McPhee, Carly Maryhew and others, asked our fellow ME/CFS patients to complete an important poll. The poll related to...

Science for ME are pleased to announce that we have today submitted another critique to the NIH/CDC review (following our earlier submission on the Chalder Fatigue Scale). All credit for this submission should go to the authors, and we are very grateful for all their hard work. The post below...

From a Facebook post of theirs https://drive.google.com/file/d/1kr_OU3IHdBwl2VSgyfYNjJ4W5ltxNGok/view They have just recently created a Facebook page - https://www.facebook.com/StanfordCFSInitiative/

A small group of ME/CFS patients with an interest in research, including Simon McGrath, Graham McPhee, Carly Maryhew and others, are asking for the help of fellow ME/CFS patients with an important issue that will affect biomedical research in the US and elsewhere for years to come. The NIH/CDC...

Hello everyone and congratulations on a terrific website with great forums! It is my first day here and though this is not the standard way to introduce oneself I would like to do so by introducing what has been my single most pressing question for years and years: Getting at the heart of...

A researcher has asked me: does anyone know of any ME/CFS trials that have used a measure of post-exertional malaise as an outcome measure apart from the PACE Trial* *Aside: which published a yes/no measure (they had used a Likert scale but published a yes/no result) Edited to Add: The...