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In my own n=1 experience, the only definition that makes sense to me is Ramsay's 1986 definition, which became the go-to definition after I got ME in 1983. This was before ME got reinvented as 'CFS' and it became all about 'fatigue'. https://me-pedia.org/wiki/Ramsay_definition#cite_note-2 . Am...

What on earth? Prof Malcolm Hooper and Dr Byron Hyde are long-established, well known biomedical, not psychiatric, ME researchers and advocates. See, eg, ME-Pedia: https://me-pedia.org/wiki/Malcolm_Hooper , https://me-pedia.org/wiki/Byron_Hyde . What the heck are they doing in a psychiatry book...

Yes, it was a new tweet of his that led me to that older one! He often tweets about his having invented pacing (and in this case, standing work desks too) on various ME-discussion Twitter threads. I feel bad for him that he feels he invented it, but TBH it's something most patients (myself...

Sorry to necro this thread, I just found out the name of the Australian man I mentioned in one of my posts on the previous page who claims he invented pacing as a treatment for ME/CFS back in the 1970s-early 80s and that the idea was stolen from him without giving him the credit: For those...

LOL! That's really the only purpose it has...

For anyone who, like myself, is unable to see the two embedded Reddit links above, I searched and found the thread, see if this works: www.reddit.com/r/cfs/comments/15i34mh/my_personal_experience_with_cfs_recovery/ (My bold.) That would explain the many glowing comments on the above video if...

No, no it hasn't. In fact the NICE Guidelines explicitly say not to use it on people with ME. What a shameless lie! How the heck did this pass peer review? Exactly that.

Good clip, but yes, why on earth did they keep displaying 'CHRONIC FATIGUE' banners on the screen while verbally calling it ME?? It again reinforces the erroneous idea to the general public that this serious illness consists of just 'fatigue'. A good job otherwise.

You can 'Quote Tweet' such people's tweets, in which you state your views on the person's tweet. Then it's at least a sort of reply even though you can't reply directly.

Same here, since having ME I feel more thirsty than previously, and have to 'go' much more often, and produce much more, than before. I wonder how many of us share the same phenomenon, and why that is?

This is such fantastic news! Really well-deserved (unlike, as mentioned above, some others in the ME field who harmed rather than helped and got knighted or OBE'd or similar...). An MBE "For services to People with Myalgic Encephalomyelitis and to their Families and Carers" is something that...

Same as @Florence . The initial viral infection at first resolved and I seemed fully recovered, then suddenly a few weeks later the symptoms all returned with a vengeance (plus new symptoms as well), at which time I found myself unable to drink any alcoholic drinks. Just a few sips would cause...

Yes, the Nick Brown on the show is the data police guy, not the editor who published the SMILE trial! He's a member of this forum as @sTeamTraen but hasn't posted in a long while. He has mentioned in the past that there were problems with the PACE trial. I listened to the show and found it...

Agree. Any doctor in this day and age who writes an article for the press which equates ME with 'or am I just tired', shockingly and wrongly claims it's "not necessarily something that will cause medical harm", and still relates it to psychological issues in face of the corrected NICE...

Yes, that's the Witcher 3 long COVID mod. (In German, have to enable English subtitles if you don't speak the lingo!)

I found out about the game mods from this tweet, which has a screenshot of WHO's tweet rather than the live tweet. I took a quick look through WHO/Europe's timeline but couldn't find the tweet, so I wonder if that was the above mentioned tweet that has disappeared? Maybe they got too many...

I saw this on Twitter and just cringed. Two of the three game mods (for Witcher 3 and Elden Ring) are on Nexus, a big game mod site, where I am also a game modder, and I know they can be a tough crowd. And predictably, both mods have received a good deal of negative feedback, eg from Long COVID...

Same here! I tend to say I have a neurological disease that causes muscle weakness and dizziness. And then change the subject if someone wants to know more!

That's basically what the deal was back in the early 1980s - what to do about ME was a 'Wild West' situation rather than everything written in stone. The only 'criteria' was the Ramsay definition, none of the later definitions/criteria existed, NICE and their Guidelines didn't exist. Hard to...

I can't remember whether it was specifically called 'pacing' in the book. But it described pacing as we know it, for ME. (If someone can find a copy of this long-out-of-print book, which I gave away when I recovered from ME in 1990 [only to relapse badly in 2005...], it would be interesting to...