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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...

The form of pacing I practiced in the early to mid 1980s was specifically for ME, not for pain or anything else (I didn't even know it was used for anything else), and didn't include plans, goals or targets. I heard about it in the news back then and via ME support groups, when ME was still...

Er, OK. I certainly didn't do it 'deliberately'. As she's a psychologist, I'd hadn't known about the Dr title.

Actually, she didn't, although she may have been one of the early ones to acknowledge it was a thing. After I got ME in 1983 I learned about it from a 1982 book written by a New Zealand ME sufferer, and there is also an Australian man who keeps claiming on Twitter that he 'invented' it in the...

This is exactly why, when threatened with being sent to a psychiatrist by one GP because my routine blood tests were always normal although I was seriously physically ill, I nearly took him up on it: I would have said "OK, send me to a psychiatrist. His report will be 'Why have you wasted my...

And so has physical healthcare. It's truly scary.

100% this! LOL. What does the word 'realist' even mean to the BPS folks? Almost certainly not the same as it means to everyone else... (Just like 'recovery' doesn't mean the same to them as it means to everyone else.) I don't think any disabled people need 'motivation' to get back to work and...

I would love for it to be called Ramsay's Disease. It would be a nice tribute to good Dr Ramsay, and not make any declarations about what the symptoms are, so then those who object to it being trivialised as 'fatigue' as in CFS, or being stated as inflammation of the brain/spinal cord/muscles as...

The name was invented by a panel of American doctors after the outbreak of a mysterious illness in Lake Tahoe in the mid-1980s. The illness may or may not have been ME, it had similar symptoms. They decided to call the outbreak 'Chronic Fatigue Syndrome'. See...

Copied post The name was invented by a panel of American doctors after the outbreak of a mysterious illness in Lake Tahoe in the mid-1980s. The illness may or may not have been ME, it had similar symptoms. They decided to call the outbreak 'Chronic Fatigue Syndrome'. See...

Well, the BPS crowd endorse the Lightning Process, eg Esther Crawley's SMILE trials and the official stamp of approval of LP by a few other countries' national health services we've seen discussed on this forum. And they claim that FND is a thing. So I wouldn't put anything past them.

Coming back to this again, I'm just sort of wondering if she is actually the latest shill for the BPS crowd, to boost their pushback against the revised ME/CFS NICE Guidelines and their bid to take over Long COVID by claiming it's 'fatigue' and psychosomatic. I wonder if by any chance she is an...

How, oh HOW, will it ever get through to the press, and everyone else who is not conversant with the disease, that it is not 'extreme exhaustion'? What about all the rest of the, much more crippling, symptoms? I absolutely detest the day that ME got renamed CFS, and the people who invented the...

"...Many also have depression or anxiety. Therefore, treating the associated psychological problem can often relieve the physical symptoms." LOLwhat? How does that work, exactly? I would guess that most people, myself included, develop a degree of anxiety and depression as a result of becoming...

This is an excellent letter. Most likely the magazine editor will just ignore it in favour of supporting the article they published, but, the letter says what needs saying, and conveys it very well. I like that she proposes to them that she write an article on the subject herself - would be...

Oh dear. I just saw that Jeff Wise thinks post-treatment Lyme Disease is a post-viral syndrome... Guess he knows as much about Lyme as he knows about Long COVID and ME/CFS, then! :facepalm: