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Sure, I understand this. I see it all as part of the environment though. And I’ve seen both the lack of ability to effect change that MPs have but also the significant change if you get the right person at the right time. Let’s see. IMHO it’s worth a try. That’s all we can do.

But we do. Our politicians still decide on and change the funding and remits. Even on what happens in education which feeds into research. We have big spending reviews and long term plans for the NHS and ME/CFS coming up. I see every reason to be pushing for our cause. Yes, it could well be. I...

I’d say HIV/AIDS is a great example of what I’ve been trying to say. It took great discoveries to change things but also great amounts of lobbying and pressure by a vocal community. People worked together, learned from each other. Treatments and different drug combinations took time and effort...

For a few months when I was first getting ill I used stools a lot. I could walk around the house or when out for short distances, but found half a dozen steps then a sit down, then half a dozen more, worked best. Thankfully flexibility/agility wasn’t an issue but getting up/down off the floor...

Cats. They’ll happily leave an air conditioned room to find someone to sit on, no matter how hot it is. If they can complain at that person about the weather, all the better.

To expand a bit, the funding bodies have their funding allocated by politicians, their frameworks and remits set by them too. Problems there have been highlighted and influence them involves others outside those bodies. We’ve also discussed the need for clinical changes, these can be influenced...

Because of who gives the money to and sets up the funding bodies, who sits on them and advises them, because of all the other points we’ve talked about in this thread…

So in summary…is the the message to send Don’t waste money on the current clinics in the NHS, they’re crap Don’t waste time building big funding pipelines, they’re crap But be ready to get behind good science when it comes Because I agree with all that. But feel we need to work on the third...

I wonder if we can flip this around from thinking about what structures need to be built. So here’s my question What obstacles need to be removed to enable high quality research into ME/CFS in the UK? Or even if we wanted to sell it to politicians.. What obstacles need to be removed to enable...

This is the thing that fascinates me about this. I used to live in Singapore. 25-35 and very high dew point all the time. The country depends upon air con but didn’t live in it, I acclimatised. I spent time in places without it. I used to do long hikes, run even (not in the middle of the day)...

Using machine learning involving diagnoses and medications as a risk prediction tool for post-acute sequelae of COVID-19 (PASC) in primary care Seika Lee, Marta A. Kisiel, Pia Lindberg, Åsa M. Wheelock, Anna Olofsson, Julia Eriksson, Judith Bruchfeld, Michael Runold, Lars Wahlström, Andrei...

Thanks @Jonathan Edwards that’s really useful insight. And yes I meant all the surrounding supporting stuff rather than lab resources. I’m coming at this in a sense of, the people and processes and all that side of things are hard and time consuming so why not get prepared there. We want to have...

Agree. But equally (as I think I said before) we need to prepare, to ensure we are ready to do trials when we have the mechanisms. It is possible to do some things in parallel. If we only think about these things after we have the answers we will face potentially needless and long delays. I...

Agree, this is a really important point. People engage because they care. That care sometimes comes out in different ways. There’s good advice for us all here. I’m not sure exactly what the situation is now with the current structures but as I understand it in the past regions (so trusts and...

Erm. Yes and no. Visibility is way ahead of other areas but the amount of community and legal tangles and disputes that crop up in the world of open source software and licenses is not insignificant. I guess that comes under the people part of what you say rather than the technical though! And...

All really good points. I suppose I see this as being one of many stepping stones on a path. Perhaps we could put together something? Not a complete wish-list or response, but perhaps something to build on what has been proposed? Do others think we could agree on a few sentences? I don’t want...

I really appreciate this comment. I do think we are all mostly in the same page But I think it’s important to recognise some of us also have experience of the NHS systems, politics and medical politics. Of course not from your perspective but from others. It’s absolutely right to call out...

Thanks for the explanation and quoting one of my favourite Louis Armstrong and Ella Fitzgerald covers

I always find it comforting finding others experiences so similar. Also infuriating of course, but at least if we face the same problems there can be the same solutions

Thanks Kitty, I hope so too. I had a look around the Wednesday Seminar Series website and Harvard Medical School youtube channel but couldn’t find anything