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I think I’ve said it before but I’m hoping for a new name at some point. Because honestly there is so much baggage and misinformation. To anyone outside and even to many with the condition all his arguing over a name looks utterly bonkers. Rebranding isn’t perfect but it happens because it...

Thanks @forestglip I had tried that website earlier, its a bit heavy going on my iPad and also didn’t seem to have much detail. It seems it was giving me the mobile view though and rotating my screen gives a more advanced desktop view with search!

If they can do this with reasonable accuracy it sounds promising. The metadata could be interesting and scale of the project sounds interesting. They seem to be focusing on relationships between papers/embeddings, but I’m unsure if this would translate into tje granularity of some of the...

Sad that’s it’s taken healthcare workers impacted to recognise the significant impact of these conditions. It would be nice if the government looked at the various financial impacts on the rest of us of lost income from being unable to work, of family having to care for us, having to pay for...

Not at all. That’s all really well communicated @Trish really well. Thank you. Agree wholeheartedly.

I was thinking more about this, it may be going over old ground but perhaps it’s useful as it clarified some things in my mind about what @Jonathan Edwards was saying around safeguarding. As patients, we can often be ignored, dismissed, not believed, receive awful care, etc. But legally we...

Absolutely agree. The push for apps in the context of ME/CFS seems completely inappropriate. And I share a lot of the other concerns about how things could be used beyond that. Perhaps I’m being naive in trying to set some of those aside. But I am also hopeful that we could have good digital...

That’s very positive news! Thanks for doing this @Jonathan Edwards And good probing questions @voner :)

Yes I think it could, I outlined some in my post. But we won’t know for sure unless we run trials and find out. Economies of scale, sounds good! It works for other areas of NHS procurement. Let me ask this. Do people think here is any place for digital services or apps in healthcare? I think...

I’d say both mean as much or as little as each other until we have evidence ;) no harm in exploring and discussing new ideas, it’s how we discover things after all isn’t it?

Appropriateness For conditions where rehabilitation is appropriate this whole approach may be a good way of helping them. I know a lot of people who forms of rehabilitation or physio has helped (post operation, musculoskeletal, even my mum with PD gets value from physio). Let me ask people...

A project retrospective But looking at it as an implementation study or project retrospective is useful. And I can see why that is seen as a success. There does appear to be some overselling in places. Possibly to justify the funding they got or to get more in an environment no doubt more...

My longer notes for the brave! (Sorry, longer than I realised, splitting into sections) Background and clinical picture The project was at a time when remote services were needed. Face to face wasn’t viable. The original plan made sense in the context set out. The problem was part of that...

My short overview The project aimed to find out if they could develop a digital and remote tool if it could in any way if not replace then support face-to-face care. Arguably it did succeed in doing those things and this is a paper on implementation. That there are question marks over the...

It does seem to be quite a confused project with a mix of or even moving and uncertain goals and outcomes. I suppose some of that can be put down to the time of the pandemic but possibly not all. The lack of recognition that Long Covid may lead to ME/CFS and the entire clinical blind spot...

I’d not seen it either. Many of us have significantly disabling symptoms which would be entirely discounted under those criteria.

Zebra fish… where is the oxidative damage… maybe in the blood? Finding Haemo? (No comment on the research I just couldn’t resist a joke)

And my mum has PD and her hearing is fine Honestly I hate the way these things are written up. It helps nobody. Scares people who are well and does nothing to help those with the condition.

This was something I saw in parts of the mental health community with some conditions. Not in huge numbers but it existed. I think it can be present in unexpected places tbh.

Do we have evidence which ties this stratification to the subgroups you have outlined? There is work like PrecisionLife’s which talks of subgroups but AFAIK nobody has shown this fits those groups or definitions. That’s also just one study, it sounds as if they will be talking about replication...