Search results

Same here, I got what was called ME or PVS in 1983. I never heard the term PVFS until much later, maybe about 1990, and the change from PVS to PVFS baffled me because when I got ill, it was understood that the condition was a prolonging of viral-type symptoms, eg feeling very ill and flu-like...

Hadn't heard of him, did a quick google on him and turned up this quite enlightening article from April: https://www.forbes.com/sites/ryancraig/2020/04/18/exhibit-a-in-the-case-for-the-primacy-of-stem-education-my-classmate-alex-berenson/

LOL, I was struck by that phrase too, and really wanted to be able to read the rest of the sentence to find out the context of what the heck they were on about. When I get sporadic muscle twitching, 'amusing' isn't quite the word I would choose!

For me, it was just one simple sentence I read back when I fell ill in 1983, from a book called The Mile High Staircase by Toni Jeffreys (1982) which I had just serendipitously stumbled upon in my local library. It was the autobiographical account of a New Zealand woman with ME, and the first...

I'm one of those slim chances: I got ME in 1983, recovered enough to resume normal life in 1990, then got bitten by a Lyme tick (I had the bullseye rash) in 2001 but didn't know what it was at the time, I thought it was just some weird bug bite and ignored it. Was ill with what I thought was...

Utterly weird - they lump ME/CFS and SAD together as if they're the same thing. https://www.simplytreatment.co.uk/me-cfs/ . They lump them together on the home page too: 'ME/CFS + SAD'. How on earth did they arrive at such a bizarre connection? :confused:

Yes! That's the one I was thinking of. "They changed the recovery measure because they realised they had gone too extreme and they would have the problem that nobody would recover." It would be funny if it wasn't so serious.

Heh, yes, that was his 'Mental Elf' blog post about the Good Ship PACE: https://www.nationalelfservice.net/other-health-conditions/chronic-fatigue-syndrome/the-pace-trial-for-chronic-fatigue-syndrome-choppy-seas-but-a-prosperous-voyage/

I recall someone on the PACE team saying they had to move the goalposts because they realised that if they stuck with the original protocol, nobody would have shown as having recovered. Just went searching but couldn't find a quote along those exact lines, but there is something similar in...

Yes, BPS folks really LOVE 'may', and also 'suggests', 'it is assumed', 'it is thought', and other words/phrases along those lines, to make the results suit their own biases/personal beliefs. Science and, y'know, actual evidence, are unnecessary!

It was the Mayo Clinic https://www.mayoclinic.org/diseases-conditions/chronic-fatigue-syndrome/diagnosis-treatment/drc-20360510 That whole page is just dreadful.

Wow, that's a heckuva patronising and downright potentially dangerous set of personal beliefs on display in that article. I wondered who this person was and a quick google turned this up (apologies if everyone here knows who he is, I hadn't heard of him)...

'Often'? Really? Are they sure they didn't mean 'occasionally' but just spelled it wrong :whistle:? But seriously, can they produce actual evidence (real statistics, not something just made up in their own heads) that this is often the case? Nope, didn't think so...

These quotes, exactly. All the banging on about 'fatigue'/'profound tiredness' from the medical establishment is a red rag to a bull for me. Really wish they would listen to patients and get it right. The only contribution I can make to describing 'fatigue' as applies to ME, is that of quick...

Indeed, I now see by looking at her reference for that claim, reference [28], that it quite laughably is an old Guardian article from 2011 called 'Chronic fatigue syndrome researchers face death threats from militants'! Oh dear. If that's an example of the type of 'research' she does on a...

That's...rather insulting, as well as surprisingly ill-informed. She's seriously saying there have never been any 'negative tension generating' conflicts as regards HIV/AIDS or mental health? I seem to recall there being many back when HIV/AIDS wasn't being taken seriously, and still ongoing...

Yes, my boss was only using it to treat adults who had suffered a traumatic event in adulthood. I guess I can see how it could be problematic for treating childhood traumas, probably a much more sensitive and unpredictable situation. And yes, using it for migraine, skin diseases etc is...

It's disheartening to hear that it can have detrimental effects in PTSD. In the 1990s soon after EMDR was conceived, I worked for an NHS Consultant Clinical Psychologist who was one of the first UK-trained EMDR practitioners (trained personally by the therapy's developer, Francine Shapiro). He...

Very similar here: A consultant I saw years ago for my as-yet-undiagnosed ME wanted me to take antidepressants, and when I told him there was no point in that as I wasn't depressed, his highly scientific reply was "Well, sometimes the body can be depressed even if the mind isn't." Er, say what...

Yikes! That's very unfortunate and indeed something to bear in mind for future such articles! Maybe 'erroneously concluded' or 'concluded on non-robust evidence', something along those lines, so that casual readers only looking at the first para don't get the completely unintended impression...