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Yes. It's downright offensive. We all try to be as 'optimistic' as possible, it's only natural to hope for the best, but within the realms of reality, not the realms of false hope. And in any case, it doesn't cure the disease nor bring about a 'recovery'. And, we don't need 'encouragement'...

This times a million. So sick of seeing a life-destroying disease reduced down to 'tired', 'tiredness', 'fatigue', 'chronic fatigue'. That has GOT to GO. ME will never be taken seriously as long as people think it's 'tiredness', which they of course see as just laziness and therefore to be...

That would be an excellent idea, if someone knows how to contact the family to put that suggestion to them. It's insulting to her memory and to her parents that her photo is being used in such an underhanded, self-promoting way. (Edited to change 'contact them' to 'contact the family', for...

Possibly coached by the SMC, to make it fit their bias?

Re: I don't know if anyone has mentioned thinking the same thing I did when I saw that, maybe I've missed it, but what struck me was that of course, post-1980s was when CBT/GET started being pushed as so-called 'treatment' for ME; I've read numerous personal anecdotes of later sufferers saying...

Yikes, this thread having come up again, I see that all the ME-pedia links to Ramsay's 1986 definition mentioned in my previous post, are now all defunct! Luckily, I keep a copy of it, so here it is again. Yes he doesn't explicitly mention PEM, but I remember that not really being a concept yet...

Yes, that's why I looked at the thread too! This makes it seem as if they are trying to look like they are associated with the actual Mensa. I wonder if Mensa knows about this? They should probably be told! Could be infringement of trademark, or 'passing off', or similar?

How is it that they are able to use the acronym MENSA? Are they associated with the famous 'high IQ' organisation Mensa? If not, isn't it illegal to use their name? Seems a bit weird.

I found that the more severe I got, the less sleep I was able to achieve. At my most severe, it was taking approx 3 hours to get to sleep and then waking constantly all night, getting about 15 minutes of sleep at a time. Now that I am more moderate (severe-ish end of moderate) I get to sleep in...

This is so fantastic! Recently ME advocate Joan McParland was awarded an MBE for services to people with ME and their carers, and now our @JaimeS is in the Time 100 Most Influential health bods for advocacy for post-viral patients. Such acknowledgement of ME would have been unthinkable until...

THIS. :emoji_dart: Wish I could like this post a million times. It has always struck me that how the heck can millions of people all over the world, and now even more because of Long COVID, have the exact same notably infection-type set of ongoing very distinctly physical disabling symptoms...

This 100%. Everything they write is littered with 'it is assumed', 'it is thought', 'may be', and other vague belief-powered, not scientific evidence-powered, piffle. And the medical establishment laps it up uncritically, and calls US anti-science. Bizarro World! If 'simple rehabilitative...

Very good point. When ME was renamed CFS and reinvented/redefined as mere 'fatigue', contrary to the WHO classification and the original Ramsey definition, it was the BPS cult themselves who did that, so that was OK and they were somehow allowed to get away with it. Despite flying in the face of...

LOL. As a former programmer myself many, MANY moons back, this is a good analogy. No need to possess the pesky logic to write a program that works correctly, instead just stick their own beliefs in it and write EXIT.

And there was also Wessely's comment that 'we're in the business of rehabilitation' in a BMJ podcast back in 2010: He says it just after 11:15 of the podcast: (ETA: I can't seem to stop the link from autoembedding - in case anyone can't see it, it's on Soundcloud, on the BMJ Talk Medicine...

This :emoji_dart: It's just basic common sense that if someone is starving to death because they can't swallow/keep food down, you give them parenteral feeding. It doesn't matter what illness they have. It's not rocket science. Anybody working in a hospital who can't figure that out, really...

Good links - it could be a good idea for the families of these patients to get the Care Quality Commission to look into these cases.

This is how I've understood NICE Guidelines to operate too, that they're not compulsory as such, not rules written in stone, but guidance that one should follow for Best Practice. But to come out and say NICE Guidelines "don't apply at this hospital" is just outright flouting of Best Practice...

I saw that on Twitter, it's excellent. Worth reading the whole thread for a detailed no-nonsense account of how assigning an FND label rather than investigating and diagnosing/treating the actual illness, can be dangerous. We know all this, but for anyone to whom this is news, it's a good...

I just came across this on Twitter, has anyone else here seen it? Yet another young woman with severe ME, Carla, is being abused in an NHS hospital. They are refusing to follow NICE Guidelines on ME, saying "they don't apply at this hospital". ! What on earth? Do NICE Guidelines for cancer...