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This wording seems to suggest that physiotherapy and clinical psychology are the people who haven't been badly trained. How about: I might even suggest that we need people who have not been trained in disciplines such as physiotherapy and clinical psychology where uncritical acceptance of...

This is fascinating! Thanks so much for writing it, @Jonathan Edwards, and for staying with us and listening and working with us all these years, which has enabled you to produce this synthesis. Now I see why you were so interested in us having to lie flat. I'd thought that there were PwME who...

You do yourself a great injustice there! You write extremely clearly. :) Thanks for the update and further thoughts.

Thanks, @Jonathan Edwards. I'm wondering what you think of what @shak8 summarises above from the TWiV podcast: And also from another thread: I'm hoping to have an informed conversation with my GP about the risks/benefits of ongoing Covid vaccination, given that I've had a couple of different...

Could that manifest itself as something ME-like? (Or Long-Covid-like?) As opposed to a neurological area?

Is there anywhere an up-to-date summary of where we're at with vaccination and how to think about it? I'd like to have an informed discussion with my GP about risks and benefits, given that I've had some issues twice post-vaccination that may or may not have been vaccine-related, and how to...

What sort of timeframe would you expect?

I also have migraines on what appears to be normally roughly a weekly a cycle (three days on, some days off), but have managed to mitigate it somewhat by twice-daily Epsom salt footbaths (oral magnesium doesn't seem to do anything for me, possibly for reasons of poor GI absorption). Severity has...

How are trials like this even still being allowed? :banghead:

Superb talk, what an amazing guy. And what a great example he sets by wearing a mask!

Thanks for doing this, @Jonathan Edwards , and for asking for opinions and ideas beforehand. Great to have patients represented in this way.

I tried out the Powerbreathe and worked up through the lowest levels to find the point at which the training would essentially begin. Once I'd got there, and did the requisite 20 (?) reps, I absolutely could not do them again the next day. I'm going to try again at some point, but with lower...

I hadn't realised that! I'd thought that the epidemics of ME were simply when some bug was prevalent enough to cause mass ME, just as Covid is doing. Is it generally accepted in the ME world now that these are different things? Would you like to expand on this a bit?

I hope so, but I don't see in the media any recognition at all that we are in an ongoing Covid crisis with now up to 2m people in the UK with Long Covid and none of the public health action required to prevent the country becoming mired in ill-health. Is no-one campaigning for this? Someone...

No one seems to be talking any more about how to turn off the tap of new Covid-caused cases of ME. As far as I'm concerned, the pandemic is ongoing - I don't understand why all public health monitoring and mitigation strategies have been stood down, or why we no longer hear about emergency...

Interesting question! Bear in mind that some of us are remembering decades back, though. I remember an initial feeling of being under the weather and too unwell to risk travelling abroad as I'd planned in case I became too ill to get home, and then getting smacked with something flu-like and...

@forestglip This is really interesting about the body-position tracker. I think it would be huge to have an objective measure of how long we can spend standing/walking. Having to lie flat so much is a major drag on what we can all do and I would think this would be an important outcome measure...

The phrasing I use, if conversation with someone who doesn't know my situation heads into an area that is going to get weird without some sort of explanation, is 'My health's a bit rubbish, so I can't really do X.' I keep the tone light and make a joke if I can, and they'll maybe look slightly...

I don't know that people realise when they're following a butyrate-producing diet, so I think it would be hard to get that kind of observational evidence. I doubt that most people know what butyrate is.

Chris says here that they don't today have a result from DecodeME and don't have a date for when they do but that they're going as fast as they can - and that as soon as they have results, they'll put them out in a preprint. :woot: