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No worries @Squeezy - I figured you were probably knackered.

Some parents apparently believe that the bleach is removing parasites from their children, but, rather horrendously, it is probably destroyed tissue they are seeing in the enemas, https://www.mirror.co.uk/news/uk-news/brit-kids-forced-drink-bleach-11924623 There is a petition on Change.org...

I agree that brain fog makes thinking anything tricky, but I guess the point is that we, the patients, live with this symptom, and so we're well placed to say how it should be decided upon, or assessed. It may not be something everyone is able to get involved with, depending on (remaining!)...

@Wonko I think he's talking about developing a new questionnaire, or instrument, as he puts it, that would give a way of screening patients specifically for the presence or absence of PEM, So I think he's suggesting that if the patient community want to develop an operational test...

That's a good offer. It could be interesting to engage with and contribute to?

Well done @Andy, thank you very much for doing that, and doing it so well :thumbup: and thank you to José Montoya for taking part. It's a very interesting interview. It's so nice to listen to someone who is passionate, compassionate, intelligent and sane, plus practical and capable. It makes...

Even when they get the details right, they still fix the results. Atos must have been set targets to refuse benefits by the DWP, despite the denials: my assessor actually wrote down everything I told her accurately, which should have given me about eleventy billion points, but then scored me...

They sometimes blame the patient. One of the other patients at my local NHS clinic dropped out because they wanted her to give up a private clinic she was finding helpful. She subsequently saw a letter written to her GP by the NHS clinic that failed her, and blamed her, for opting out of their...

Definitely humans, and she has the funding available for it. It sounds as if she will go ahead with an ME/CFS trial if the GWI trial results are good.

Yes, for many years. Since a downturn last summer I have been completely bedbound, marooned on a hospital bed at home, dependent on carers for even the most basic things, like being washed. Something like having clean sheets is a major activity that will knock me out for several hours, even...

Ouch, @Squeezy I really felt that! That's a painfully beautiful description. It works for the daily grinding wear of severe ME too. I hope you got more sleep over the weekend?:emoji_fingers_crossed:

I think it's also about maintaining one's worldview in the face of evidence that would otherwise challenge it. Presented with a fact that would undermine their whole conceptual model of the world, and perhaps their sense of self along with it, people often resolve the cognitive dissonance by...

Except that at the very severe end of the spectrum, avoiding triggers is simply impossible, by virtue of still being alive. For example, noise, light, being moved by others (for washing, bed sheet changing etc), and other things one cannot eliminate are enough to cause PEM at that level.

Wouldn't PACE be ruled out as evidence anyway, on the grounds that it is scientifically unsound?

Yes, my post wasn't clear enough, I've added an edit, thanks. I don't think we're disagreeing. I meant that the current clinics don't actually do much except CBT and GET, as it stands now, so take that away, and they're out of jobs, and the NHS can't say they have services for PwME. So the...

The idea that services would need to be scrapped sans CBT and GET pretty much illustrates the paucity of what is on offer for PwME. I suspect this is the stumbling block politically, in that if CBT and GET are removed, then there is not much left for the staff to do in most of the ME clinics...

@Valentijn Yes, well I guess it would prove the point of how useless Oxford is, if that were to be the case.

Yes, I meant that our functional capacity has a real, irremovable, lowered ceiling, depending on level of severity, not that PEM itself is fixed.

This would be ideal, but probably not possible because Oxford includes ME patients in its fatigue catch-all. Yes, I think perhaps the strongest argument we can make against Oxford-based evidence relies on PEM being fundamental in identifying patients correctly. To that end, there is a...

Then could we simply argue that Oxford is invalid because it does not require PEM? Proving the need to use PEM in any criteria might be relatively straightforward, as there seems to be an increasing consensus on that. For example, The BMJ Best Practice Review from just last month states that...