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Section 1 About you Diagnosis, ME/CFS, Long Covid, location, gender, age, duration of illness, severity Section 2 physical activity Over the last month, have you done this activity on an average day (rather than a good/best day)? (Choose one answer)

It's on the MEA website: https://meassociation.org.uk/2025/09/clinical-assessment-toolkit-project-the-final-survey/

I think in this case it's a Phase 2 trial, which from memory is an early stage trial, probably not with a control group and probably aimed at determining whether pwME tolerate the drug, drop out rates, and whether enough report some improvement to justify a bigger double blind controlled trial.

Open What questions should a PwME ask if they're considering entering a treatment trial? (specifically Lindus Health ReMEdi trial)

Yes, I agree, there are clues here that this is the usual BPS crap. In principle the idea of apps to help patients access info, record outcomes and keep in touch with clinicians are a good idea, but not if they simply host all the old crap.

Has the trial protocol been registered on a recognised site? If so it should name the drug, the name of the research team leader and the ethics approval, and stuff about outcome measures, duration, number of participants etc.

Some things I would want to know. Name of drug What it's already used for Side effects Number of doses and length of trial Will they be trying different doses and will there be a control group getting a placebo What patient reported outcome measures will they use? What happens if I have bad...

In theory I think this is quite a good idea for people with mild to moderate ME/CFS learning about how to pace and providing feedback to clinicians. It could theoretically provide an accessible way for people with more severe ME/CFS to alert clinicians to their needs for specialist help, home...

Any idea what any of these are? Validated Outcome Measures: Track physical and mental well-being through your choice of EQ5D, GAD, Nijmegen, WSAS, and PDQ5 assessments, as well as the options for fatigue PROMs

I downloaded the Living With app on my phone but it wouldn't let me access it as you have to have a code from your NHS clinician. So we can't see what's on the app about ME/CFS. Here's what it says on the website: https://livingwith.health/me-cfs-therapies/ Living With ME/CFS is an innovative...

https://livingwith.health/platform/

Some posts have been moved to: Living With: UK digital platform for NHS services including ME/CFS

Some posts have been moved to: Living With: UK digital platform for NHS services including ME/CFS

Judging from the examples given in the fundraising document they are focused particularly on very severe ME/CFS, including those with feeding problems and on hospital care. I think it's an important aspect of ME/CFS care in the UK that is most urgent to be addressed by government and that they...

Some posts have been moved to a new thread: UK: #JusticeforME fundraising for legal case for UK Government to provide specialist ME/CFS medical care

I had to look up LLPC. I assume you mean long lived plasma cell?

It seems from the correspondence with the doctor that he has no idea what PEM is, equating it with post exertional fatigue. I wonder whether it would be worth sending him some more detailed explanations of PEM from various sources, including our fact sheet.

Looks like that's a direct competitor of Elaros.

I assume that's because the patients sample size was 18. An absurdly tiny sample for epidemiology.