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On that note. And maybe it is cloud-cuckoo land, but there is stuff we can do if we start actually thinking like this. The 'what's in it for me' question, but also the fact that people are given set timescales to complete research at whatever level and there are always easier and very hard...

And a lot of people will go to somewhere or someone with an intent of being quite 'transactional', they want something and they have a plan to get what they require and a plan - if they think it might come up - or just well-worn tactics of avoiding the 'giving' or 'giving away' or 'discussing'...

Of course what you are talking about is: ethics. There is genuine denial, which I don't doubt is also the case. And then there is also 'don't expect me to care', not my fight, 'so what'. A lot of people just don't have ethics. Unless they know they will be caught and it will make a difference to...

I've copied the following quote from David Tuller's interview with George Monbiot, Trial By Error: Guardian Columnist George Monbiot Discusses His Scathing Rebuke of the Biopsychosocial Brigades--Text Version | Virology Blog because I think it actually applied to a note I was thinking of for...

Biographical repair from the same people who keep the foot on the neck via misinformation that means we live in epistemic injustice where everyone at best thinks we are fatigued? and maybe doing mindfulness or all these additional exertions will be useful? to quote three men and a little...

:hug::banghead: I don't know anything about whether what I'm about to say is nonsense because I'm only quoting a few I know but this sounds more like what might work for people wiht fibromyalgia, some of whom say they need to 'do some movement' etc and it sounds pretty different to the now...

agreed. I've years ago having slept through alarm for something extremely important often found that I'd managed to sleep with my actual ear on said phone alarm. And as we all know they don't turn off for a bit unless you snooze them. Particularly when the tiredness had cumulatively 'built up'...

But it is what bleach is? This is what is used to bleach hair. It can bleach teeth. It will bleach clothes if it drops on them etc. It smells of bleach even when it is a very weak solution in a mouthwash As there are warnings for example about using too much too often even as a mouthwash then...

I agree with other people on swallowing hydrogen peroxide - it is not something I'd ever think to do based on what I know of it. Some mouthwashes for where you eg have gum disease have hydrogen peroxide (and taste blinking horrendous but needs must) I will admit that when I've had a...

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...