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Wow, you have achieved so much good work in your first 5 years. What a team. :trophy@Thank you.

I think that's important. Single time point or single day upright and activity is not necessarily an indicator of health on that day, it needs to be combined with symptom severity and plotted over time to see what patterns emerge.

Do you mean financial incentives? I'm not sure what you are saying here. If we all worked on fundraising for research instead of using our energy to discuss research here, who would be here to discuss the research with the scientists when they get the funds and come to find us? I see part of...

That seems like cheating. They should report the overall figure, not cherry pick the one piece of data for those who did better that looks impressive.

I strongly disagree with the suggestion that patients should not be discussing the details of scientific research and should devote our energies instead to fundraising to pay the real scientists to do the research. Of course we need more funds for research, but that doesn't preclude patient...

I was also going to suggest time upright as a daily measure, ideally captured automatically with a wearable if possible. I think for 'in the moment', eg hour by hour or several times a day recording it's only feasible to use wearable data (HR, HRV, steps/motion, time upright) and 2 or 3...

I fainted a few times as a child and young adult before ME/CFS, but the cause was identifiable, eg standing too long in hot weather, severe pain (period pain) and having needles stuck in me. These are still true since I got ME, though obviously not period pain any more, as I'm 74. That is...

We have several threads on this treatment, including a discussion thread: Stellate Ganglion Block treatment To find threads on other research click on the stellate ganglion block tag at the top left of this thread.

I'm very sorry to hear you and your mother had such a hard time with Covid. A beautiful poem, as ever. Thank you. This part, inevitably, struck home with me too:

See also this thread: Works of fiction where characters have ME/CFS

Interesting question. I think FUNCAP asks for an average day over the last month, so it enables a sort of overview of our current state of health/function as we recall it over the last month. For some, that will have been a roller coaster of awful, bad and less bad days, for others it will have...

Sounds like good news. Well done those who made this happen. I hope this suggestion that PEM only affects 'some people' with ME/CFS will be corrected.

Fair point, @RaviHVJ, I was referring to treatments that are not prescribed on the NHS that have no basis. I also know someone in another country with Long Covid who has been helped by doctors concentrating on POTS treatments particularly.

Maybe he had a visiting professorship for this specific project while still based in Sheffield.

How can something be 'a little better but no noticeable change'? If the change isn't noticeable, how do they know it's a little better? That scale that only allows one negative/no change and lots of variations of positive should be illegal. It's not a research instrument, it's the cheats version...

Maybe write to the authors and ask how the figure was calculate. They shouldn't be reporting a figure without the clear source.

Chris Burton Department for Functional Disorders and Psychosomatic Medicine, Aarhus University Hospital, Denmark

This is so unrealistic. Who wrote this stuff. What if you can't afford to move somewhere nicer.

Well done with getting it all the way to publication. I think it's a very valuable resource.

I thought cancer fatigue didn't involve PEM or other ME/CFS symptoms, that it really is the symptom fatigue on its own.