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Is there no decent evidence behind the Workwell Foundation basic anaerobic threshold theory (which Visible is based on) increased heart rate would be easy to demonstrate, we just need the studies which link it to PEM/relapse...

It seems St Marks are thought to have a strong psychiatric approach.

Surely there is an appropriate hospital where TPN can be instigated which is less than 100 miles away? I haven’t read back but I think there was more to St Mark’s than just the TPN

PACE was evidence based, it’s just that the evidence was it’s based on was trash.

Fortunately inews isn’t exactly a big hitter

I’m praying that Decode ME comes up with something which will stymie these PROMS. I really do think there should be a campaign against using them. PROMS HARMS

My neck isn’t big enough, and I’m not a man over 50 so I didn’t meet the criteria.

I was finally diagnosed with Sleep Apnoea recently. I’ve gone from severe to moderate since I got cpap. It took me years to persuade a GP to refer me. Apparently loud snoring, stopping breathing for up to a minute at a time and chocking and struggling to start breathing repeatedly “doesn’t...

Good idea. I’m a big fan of Visible. Even if you could “borrow” a communal one for a few weeks you would learn a few things from it. And almost more importantly, so do the people you show it to.

I feel like the invisible electric shock fence needs adopting as a regular description. Maybe a few memes.

I’m just taking every opportunity to be facetious about Sarah Tyson claiming the NHS and Wearables are like oil and water and will never mix. *apart from micellar water which is a mix of oil and water, making this an ideal analogy.

Combining “us” with any other group is ridiculous, the NICE guideline is clear that we shouldn’t be offered a general programme open to other people. Now people will be getting “breathing exercise through singing” (not me when I can’t speak) and home golf (when I can’t sit up) but I just ignore...

It described very well the “mental load” always hanging over us, doesn’t it? The invisible line of the electric fence, where is it just now? It was over there, before -ouch that’s an electric shock- I guess it’s now much closer than I thought.

I’m not in this discussion, I was on the Monbiot thread. If you’re looking at the Maeve case, you can re-read her thread as to what was said at the inquest, and the extensive discussions (which some here took part in) don’t tag me in here, I’m absolutely beyond my limit with being tagged...

At the risk of thread crossover, George Monbiot tweeted about whether a Public enquiry is needed. I know Sarah Boothby was looking at contesting the inquest. How viable might legal routes be, for Maeve and for pwME do we think?

Wow really? I wonder…

Can we see the grant application? kudos for Sarah for explaining further. Unfortunately I think there’s an echo chamber, and “advice” may be listened to, but not heard. Also the tail wagging the dog seems to have been revealed - building stats for commissioning services. Gotta show...

what I do is a flow chart. Start with “feeding” and draw lines down for each type (NG, NJ PEG PEJ TPN) at the end of the line give the reason “given at inquest” why it wasn’t done OR that is wasn’t even mentioned at inquest, and “assumed” reason. From there you do another line with your argument...

I’m bringing it back on topic quoting this important tweet by George Monbiot asking whether there needs to be a Public Enquiry