Search results

I think this illustrates the problem in ME/CFS of the cumulative effect of activities. Being able to shower or cook every day for someone who can currently only do them once a week or a month, if it implies all other daily activities are also able to be increased by that amount too, indicates a...

I'm not sure about that. It makes a big difference to me whether I can shower daily or only once a week, for example. And whether I can prepare a meal from scratch with fresh ingredients every day, or about once a month.

I think it's a lot more than lack of energy that prevents attending appointments. Symptoms can make it difficult or impossible, such as OI. And I'm not too bothered about getting empathy so long as the clinician is knowledgeable, listens and acts professionally.

That's why I keep going on about wearables. If we have daily tracking of steps, resting heart rate and ideally time upright too with no effort apart from remembering to charge the device once a week, then the other tracking can be done less often.

My version for me in my current state: On entry on a better day: Upright (sitting, standing, walking) time no more than 5 minutes at a time and total 30 minutes per day, steps measured by fitbit as non dominant forearm movement 400 to 1000 per day, no more than 20 steps at a time, mild nausea...

A big difference between ME/CFS and the example given for SLE is we don't have any lab tests to include in the outcome criteria. So we're left with the fairly objective measuring via wearables of steps, time upright and heart rate, HRV etc, whether we are able to do specified activities, and...

Away with the fairies?

Maybe they have taken it down.

I think the approach of each patient picking 3 activities they currently can't do and want to be able to do may be OK for a trial of a treatment, with the follow up running for, say, a year, might be OK to give a clear indication of whether the treatment has had a clinically significant effect...

Can anyone find ths statement on the BACME website? I've searched and can't find it.

I have no idea what this means. Resilience is commonly used in work settings where bullied workers are expected to be more resilient in coping with the bullies, rather than removing the bullies and providing better management. No mention of PEM. Surely that's key to understanding the young...

Thread here: https://www.s4me.info/threads/our-own-delivery-plan.45305/

None of them has a clue. Nobody does.

Someone said earlier on this thread that BACME were not involved in development of the plan. Their statement says they were, it is signed: I note in particular their statement makes it clear they think existing therapist provided services should continue. Yet the Development plan says mild and...

Good response, thanks Hilda.

I first came across the word liminal when doing a poetry writing course. I think it should have no place in medical articles, it's too vague and confusing, intended to sound like they have important understanding of the problem when they are talking bullshit. This is another output of social...

I got the impression they were trying to persuade that Long Covid is a disabling physical illness not psychosomatic, and needs to be taken seriously by doctors. For reasons only known to themself they decided that in order to get this straightforward message published and to persuade their...

Discussion of the Science for ME Fact Sheets has been moved to this thread.

Thank you @dave30th for this article and thank you Sarah Boothby for continuinig to fight for justice and decent care for pwME. I am appalled that BMJ failed to post Sarah's comment on the article.

Please can you ask ForwardME to make the talk by ELAROS and the ME organisations questions and responses public online. We should be allowed to see what spiel they are selling to ME organisations. And what the ME organisations are saying to them. And not just as sanitised minutes.