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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

We need to have much better knowledge of ME/CFS within GP services and then yes much better ongoing support and monitoring for non-ME conditions. I’ve asked for this multiple times. And sometimes feel I’m making progress then staff change and you have to start again. Then despite my severe...

Thanks for your involvement here @paulendat it’s been great following the discussion. Is there a way more of us can get access to the paper and/or is there a recording of the talk from last week available anywhere?

Never heard of her but looks like pseudoscience. Their disclaimer is interesting

So a bit like when an alarm call goes off in a forest and all the animals start shouting but nobody really knows what they’re shouting about? (and it may be that once it’s done the rounds some of those making the noise may have been the ones the others were scared of in the first place)

I have not gone through what is being proposed in detail and in many ways I agree with the points @Hutan makes My question though again comes back to how do we build the pipelines of researchers and the supporting frameworks/structures that will be needed to carry out research, drug trials etc...

Any sort of statistical analysis or graph generation is a bit beyond me or my iPad at the moment :)

They did measure a few things, the change in TGF-β seems notable? Here’s before, after and change values. TNF-α (pg/mL) 4.9 ± 26.3 4.0 ± 16.6 1.0 ± 13.5 (p = 0.60) TGF-β (pg/mL) 765.0 ± 1759.7 243.9 ± 708.1 521.1 ± 1946.3 (p = 0.07) IFN- γ (pg/mL) 11.7 ± 65.6 33.6 ± 214.3 21.8 ± 148.7...

A bit of info on what is in this preparation Astragali Radix (root) http://www.shen-nong.com/eng/herbal/huangqi.html https://en.m.wikipedia.org/wiki/Astragalus_mongholicus Salviae Radix (root) http://www.shen-nong.com/eng/herbal/danshen.html https://en.m.wikipedia.org/wiki/Salvia_miltiorrhiza...

I’ve just come across this place which may be useful to some, it’s a bit screen heavy for me but for those who want a visual or interactive learning experience it could be useful LabXChange The Basics of DNA...

How broad are these immunosuppressants? I wonder if they’d be taking a sledgehammer to a job better suited to tweezers. If the problem is just some cells or just some signalling, what are the hopes for targeted drugs? Are there any which target just one pathway/cytokine/whatever? Oh dear, I was...

When people talk of ‘hyper-activation and hyper-reactivity’ what do they mean/what is the cause? More receptors on cells, more of whatever signalling chemicals being produced, something else, all of the above?

Checking some old results my alkaline phosphatase level seemed to go up (but very much well within range) after I got ill. Only a few before and after data points and it may be noise. I was always interested in the within normal range changes I saw in blood test results though, not from any...

I think a lot of people here see knowledge, research as the route to all improvements. So supporting research and funding seems obvious. I really like the way you look at it Kitty. And how we can as patients, be the best participants in any research seems a very worthwhile cause. In various...