No worries @Squeezy - I figured you were probably knackered. [MEDIA]
Desperate parents forcing kids to drink bleach as autistic children become victims of sick US cult Sunday People investigation: At least six...
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...
@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...
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...
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...
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...
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...
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...
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...
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...
Except that at the very severe end of the spectrum, avoiding triggers is simply impossible, by virtue of still being alive. For example, noise,...
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...
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...
@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...
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...
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