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It would be good to get an answer to this one - what for example happens if someone is particularly charismatic and it is the trustees who actually get the vote but perhaps Charles or a few others have concerns. Agree that given the environment in which ME has ended up there is good reason to...

and with sufficient time and process that perhaps those patients who are respected as having more experience in certain areas are able to read and provide their thoughts to those who would like it.

People's thoughts on whether there are any 'catches' I've missed? It feels like being able as a community to find ways to get as many people as possible - medics, HCPs, but maybe also others (I'd like to see us starting to get into education/schools etc for example as BPS hammered that one) -...

I don't think that you can always foresee everything - hence the control mechanism bit being the issue (and I don't know what is available there). I'm not in disagreement with you at all regarding the question of how can we help or improve assessing applications - and I suspect there is...

Programme: Improving our clinical understanding of infection-related chronic illness 18.00 Introduction & Welcome by Dr Kerri Baker, Dean of Education, Royal College of Physicians of Edinburgh 18.05 Co-Chairs: Dr Marie-Claire Grounds & Dr Hannah Preston Patient perspective Speaker...

I've seen this mentioned on social media so thought I'd link to it here. I think it looks good from the speakers. https://events.rcpe.ac.uk/rcpe-mecfs-and-long-covid Events Book Now TUESDAY 04 June 2024 RCPE: ME/CFS and Long COVID Please note that this event will be delivered online, and...

is this one of those areas where they've worked out they are as close as they can get to something for which they can do harm but can't be sued. Because actually getting that justice will involve 'proving' it wasn't anything else etc? It certainly seems to be that they think so from the fact...

Indeed I think the sense in which they care amounts to: "well... we didn't harm them that much, I sense this is either them trying to make us look bad or just lumping all the blame on us for 'unfortunate things'/sh** life etc'' in the same way you actually do get people in life who do...

Is there an Australian patient association who signed the petition who could organise allies there to send this as evidence of it not being withdrawn causing active harm? As a complaint to the Charity Commission, if that is the basis on which they act. It feels clear they are leaving it there...

I think that the other thing to remember is that there is often some grace given to some people as long as their illness is short-lived enough and they are seen to be heading in the right direction. And we know that from those who had covid they are almost in research separating off groups by...

Maybe this happenning is sort of insightful. The bit they objected to most was it being required for research samples in order to be able to claim it was representative of the condition. But then we have RCGP being happy to mention 'PEM' as a 'phenomenon' in long covid, which is different like...

Insightful point actually given elsewhere it has been noted that there were due to be experts speaking alongside said news pieces and these keep being cancelled by the news orgs whilst the patient bit remains. With maybe the family on their own trying to explain. I can't help but think that...

of course there is a difference between being genuinely unaware and choosing to not acknowledge and for/due to bystanders 'choosing not to look', so the old issue of getting caught/that thing about "did the tree really fall in the forest if noone hears it" being the only real driver (external...

I've just had a look through the general website. It is an interesting one and I don't know the situation regarding whether they are battling the same issues with guidelines and poor treatments etc? And whether the composition for their guidelines has any complications of different schools or...

I guess it’s actually evidence-washing , but the issue is what they are trying to wash away is the fact that what they called evidence was called out as having its pants down for cfs so they washed it thru the generic rehab where you just need to call ‘orthodoxy and assume’ as pretend sophist...

Yes - I didn’t word it well but was meaning of the 173 references on here. As it purports to be some sort of review Only looked at 9 and 8 were UK and stone, sharpe, Carson were in most of them be interesting to look further and see the actual spread of the rest.

interesting. so the money flowed first and then this was about them trying to explain that they weren't just a big old wastage-hole Shame we don't have a few more people like this in the ears of the correct people reminding them that maybe the gamblers fallacy issue with the dept and staff is...

Oooof! certainly right about it being a fantastic sum of money if 16% of the NHS budget was spent on psychosomatic illnesses in 1999. I'm assuming that means 'being given to those who are working psychosomatic depts' on the basis of the note regarding questions of how much of that was...

:thumbup: Brilliant

I agree however my issue is trying to tackle and highlight what has gone on with no change to what us being offered vs old guideline trying to be hidden fir me/cfs and I worry that whilst that might be a side hashtag they will cherrypick it to just distract a valid issue into the same debate...