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Is this something that has been discussed a lot in the community? I`ve read a lot of ICC and CCC discussion back in the day, but I have no recollection of this at all! Granted it is hard to remember what was discussed in FB grps or on Pheonix Rising over a decade ago, but sleep dysfunction not...

My understanding from being surrounded by gym rats and personal trainers. Is that if you are a twenty year old male who eats right, takes the right supplements, rests properly and works out correctly. It pretty much is just non-stop improvement in the first months. It`s why steroids are so...

A number of posts about muscle fatiguability below have been moved from Plasma cell targeting with the anti-CD38 antibody daratumumab in ME/CFS - a clinical pilot study, 2025, Fluge et al ************************************************************** So firstly, a disclaimer, I might be in a...

It`s bizarre. Even the MECFS clinic was like, we have never heard anything like it, and they must have had thousands of patients at this point. The reason why they wanted to try it was because I described my MECFS fluctuating so wildly throughout all my time with MECFS. Just random fluctuations...

I was always extremely sceptical of anti-virals, having been part of the MECFS community (phoenix rising and S4me) for over a decade. Am in my mid 30s. Have had MECFS since I was at least 9 years old. That being said, after over twenty five years of MECFS. Valacyclovir is the only thing I have...

I was really worried about starting LD Abilify after reading some patients reporting negative reactions to it. Was it worth the risk? Well my family guilt tripped me into it and just like LDN... just... absolutely nothing. Can`t feel any difference at all. Kinda funny given how worried I was...

It`s very interesting. I definitely feel like I am in this very weird subgroup of MECFS patients (that might be considered none-MECFS in the future). Got progressively more ill as a child, couldn't even pinpoint where it started. Still did sports because my parents forced me, and I was so mild...

Surely some of the bigger international MECFS orgs should be able to contribute something? Or some privileged families who have a MECFS sufferer in them? This seems by far the best bet for a treatment for a subgroup of patients. The improvement in steps per day are especially remarkable...

Oh yeah there is no way. Not even that but most of the effective and good Long Covid advocates insist on calling what they suffer from ME/CFS (an example of which was the hearing today). And anyways things can never be worse than they were pre-covid when it comes to ME/CFS research. Haha, what...

I remember once having hopium that all the massive funding cancer got would some day benefit us. I mean, given the absolutely massive numbers it simply HAD to... right? Hopefully that day has just occurred!!

Long COVID could become Finland's largest chronic disease, warns minister | Reuters Interesting, I remember 4-5 years ago Finland was pretty abysmal with regards to ME/CFS. I´ve also noticed considerably more activity / talk about long-covid the recent month. I guess this is the inevitable...

Shame it didn´t take a global pandemic, but the mishandling of a global pandemic for over 2 years to get some recognition for ME/CFS. My heart goes out to everyone who has had their lives ruined by this clown fiesta. Unbelievable.

Their entire strategy has always been lying through their teeth to save their own careers. It's all they care about. They already pretended that they never told patients to push themselves in the PACE trial, when that literally contradicts the entire point of CBT and GET in the trial (as well as...

From https://www.sciencemediacentre.org/expert-reaction-to-nice-draft-guideline-on-diagnosis-and-management-of-me-cfs/ Prof Peter White, Emeritus Professor of Psychological Medicine, Queen Mary University of London, said: Genuine thanks to everyone who fought to make this happen. Usually...

I agree completely. I know some people are pessimistic about long-covid, but the research situation for ME/CFS is currently so neglectful that it barely takes anything to improve the situation significantly. Europe and America have completely screwed up the handling of Covid to a almost...

Theguardian aticle building on what Andy and Leila referenced https://www.theguardian.com/world/2020/oct/21/women-aged-50-60-at-greatest-risk-of-long-covid-experts-suggest No mention of post-viral fatigue syndrome or ME/CFS in the article.

Insurance companies: Okay, so we've given the patients something cheap yet also worse than nothing in the form of CBT. But how do we further reduce the payout to these awfully sick patients? Psychiatrists: Okay, imagine CBT.... but... in A GROUP SETTING!! Insurance companies:

They are deliberately lying. These people don't believe in anything other than the advancement of their own careers. I can still remember the details of exams I had 15 years ago, there's no way they don't remember the details of their 5 million pound study which was based on the idea that...

Yes, it was him. He basically said there's an awful lot of politics involved with ME/CFS which would be unfortunate to get mixed into the debate. He also said This was back in late July though, pretty arrogant to just assume the consequences are not chronic given we simply can not know...

ME/CFS is so controversial after the Danish Health Authority lost their fight with the Danish politicians that ''experts'' now go out of their way to ignore ME/CFS when it comes to post-covid. A Danish expert even mentioned this explicitly in an interview. Not mentioning fatigue, which obviously...