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Now I know his background is rheumatology and nothing to do with neuro the idea of this being with intentions to find some ‘good cure that might be science fiction but at least heart in right place from someone somewhere ’ seems even less likely / I’m even more cynical. Not that there aren’t...

But MEA need to protect their fb users if they do a thread where she is mentioned by them agsin I think - plus there I think were many many more comments from her not replied to which wouldn’t be caught in a screenshot but have contextualised someone eg saying a polite ‘thanks but no thanks’ as...

I think that next time MEA mention her in an article or comments the sensible thing is to warn readers of this likelihood before she does begin writing to them (the rest of the fb commenters, by her replying to their comments). I only noticed that her and Paul’s reply was mentioned in their...

Yes I think she basically was replying to most comments with whatever spiels - like an antagonist might I now see in hindsight - then went back and amended to make whatever reply (which might have been pretty polite given what she wrote) look as if people were randomly puzzled with her etc. So...

I think we need to begin to have some good psychologist noting the long term common sense and obvious harms this therapy and assumption causes it seems they keep getting away with re trying different versions ‘just in case’ even after one has been proven not to work due to some insane pmass...

It would be an awful thing to do for many reasons, but putting other conditions at their various stages onto said scale would provide anchor points/comparators that ballpark the different levels. I agree that when I say 80% disabled it can sound like 'I'm almost disabled' rather than so...

I saw that post. She almost replied to every comment (even though the article was nothing to do with either her or her area) I've just edited this because her and Garner's reply was mentioned - I think it is worth noting many won't have known who this person was when it was originally up. It...

oops lacking insight a bit there is it not? But is this lightening process type thing related in which case I guess that is the brain 'retrain' of that isn't it ? On a general note, I'm always curious about people who claim things like this when it might be themselves they think might be...

We also need people to underline that we aren't 'unfit'. Which seems to have been turned into a dirty word (ambiguous meanings used again) and mis-applied due to people being allowed to make their own assumptions (diagnoses they aren't qualified to make) based on how people look or sound...

Exactly. I think that whether there are clinics that are ME-specific or some sort of other format (that provides a conduit to EDIT: and brings up to speed, local services like social services and GPs and hospitals) the Physios for ME information was transformative because it simply and...

@Trish and many others And yes, we do seem to have an issue that is well-encapsulated in the reading of this paragraph. Ironically the sentence that I have boldened seems to present the 'divide' "It covers multidisciplinary, person-centred care involving: family/carers; joint decision-making...

I agree. And reading it I find the order in which the sentences were composed into that paragraph insightful. I don't understand why the lines I have placed in bold - which relate to 'patient voice' - were placed where they were. They may have had a place as an important relevance as an 'and...

No indeed. Which sort of should make things more fixable. I note you posted in the MEA PROMS research and agree that it is important that we all perhaps are pushed to take some time to look at that one afresh, because it is one of the things that will directly affect treatment EDIT: most...

And @Trish Im a bit divided on this. I absolutely agree that those just wanting to plonk the same orthodoxy on it all need shifting out completely. It’s all smelling so so old fashioned and unfixable the way they are unable to hear or respect. On the other hand @PhysiosforME habe been...

To ask the obvious question - and this applies to UK as much too: of the professions that we've ended up being landed dealing with, which of them are actually taught this compulsorily at the start and then throughout their courses and vocational training? Is the issue that they are some of...

Yep they've made it seem like a country-based comparison rather than a condition-based one. And of course that is the classic reframe the set technique - look there are those who have the same thinking issue in the UK too rather than 'compared to what you'd expect from something that calls...

Interesting. So does Gerrard have the same worries when he is giving out Public Health information about eg STDs or heart problems or .. what else is it that he does as part of his job as a campaign area? I'd be interested to see someone posting a comparison of what he says on another area vs...

Are they that stupid that they don't realise the fact that their very first word was 'Some' [health services contact covid patients] makes the rest of what they say laughable BS unless they are citing a study proving that 'all the rest who didn't contact them had no long covid patients' Even...

I guess I just feel that this paper could have been an appeal for attitude-change. A rousing call to action for people to begin realising this could be an interesting area for them to develop science, instead of the same old 'patients just need our advice'. Based on the fact that: we aren't...

Here is the thing. I was one of those who probably still deep down doesn't want to think that it is just about never exercising again. And who as someone who was pretty athletic before never just cut it out, and would certainly be happy to add bits in. There were big differences between when my...