Search results

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:

I've read numerous Twitter threads by journalists and scientists re Jeff Wise's article, and judging from his responses he has indeed retreated into the militant activist trope. Many patients, scientists and journalists have given him links to studies with evidence re CBT/GET having no use in ME...

@rvallee LOL! Those were my same immediate thoughts on reading that abstract of stating the blindingly obvious! And yes, then trotting out totally lame psychosocial stuff as if it's something 'meaningful'. And I loved this: Seriously? How does that work, exactly? :laugh::rofl::p:bucktooth:

Not sure how much credibility can be given to this piece, considering that it was co-written by the infamous Danny Blanchflower who was trolling ME sufferers on Twitter in 2019 with his insistence that because rehabilitation fixed his broken ankle, it was definitely a cure for ME. When ME...

That's a fascinating article, very eye-opening. This bit had a ring of familiarity as regards the resistance various people have experienced in trying to get dodgy ME papers retracted or corrected (my bolding): So this reluctance by journals to correct bad science is apparently pervasive...

In my own n=1 experience, I never had any of my bits removed but I still got years & years of severe ME. I tend to have a feeling it's possibly more a genetic tendency than to do with tonsils, appendix etc. My mother had some weird undiagnosible illness for the last few years of her life which...