Search results

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...

I think I mentioned it earlier but I don’t think it’s a coincidence in terms of the wider political landscape with a multi year departmental spending review, NHS 10 year health plan and yes the ME/CFS delivery plan all due this summer.

I went down a rabbit hole on Transcription Factors too Text Nature Transcription https://www.nature.com/scitable/definition/transcription-87/ Transcription factors https://www.nature.com/scitable/definition/transcription-factor-167/ Khan Academy Transcription factors...

I’ve recently found the NHS Genomics Education programme website, which includes a lot of resources, but the Bitesize genomics videos such as ‘What is genomics?’ and ‘What is Bioinformatics?’ are good accessible introductions. https://www.genomicseducation.hee.nhs.uk/education/...

I’m a bit late to this discussion and can’t access the full paper but from the “how did we get here” overview and ideas about crossovers with other theories people like @jnmaciuch have it sounds really interesting. Look forward to the talk being available somewhere. Happy to help extracting...

There’s a lot of differing points of view here. And amongst all the proposals, lobbying, charities, researchers… There’s the people I really care about. Patients, us. So I have a quite simple question (although there may not be a simple answer). At this point in time what is the most effective...

To get back to the original question… wasn’t one of the points of DecodeME to get a cohort that can be used again? Many of us gave permission not only for data sharing but to be contacted by other researchers. So at least in the UK shouldn’t the answer to the question how do we select...

I should have realised you would have :) That asynchronous nature I think works really well for me and others. And I’m absolutely sure there’s plenty of people here who would be happy to help give input or trial methods. I’d be interested in if tools like slack or even simpler IM or forums...