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I can't find out anything about who is going to do this research. If it's the usual rehab people it will be a disaster.

This study is mentioned in several posts on the thread about the UK government delivery plan: https://www.s4me.info/threads/uk-government-delivery-plan-for-me-cfs-published-22nd-july-2025.45222/post-626239

As soon as I see someone has used AI I stop reading. I don't trust it to know what the important points are and not to add inaccurate stuff.

Note that we already have a thread from 6 months ago about an earlier stage in this research: Request for Steering Group members to guide a study on online connections of people with ME/CFS and their offline lives

No, with the BPS people still fighting on and holding sway in the Royal Colleges they would take it as an opportunity to return to the 2007 guideline or worse.

That seems to me a very unhelpful document. Why not simply say there is no evidence that any treatment has any beneficial effect on the underlying illness ME/CFS, whether involving changing thoughts, activity levels or taking medication or supplements, or using electrical devices. claims...

Well said, @JellyBabyKid. So what do we do now? This forum has no official standing, we're just a bunch of mostly severely affected pwME scattered across the world, crying in the wilderness. Efforts as a forum are largely ignored, dismissed and achieve nothing. We are creating fact sheets at...

What is TSLD?

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/