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That was a great interview, big thanks to @dave30th and George Monbiot.

Thread here: Insights from Invasive Cardiopulmonary Exercise Testing of Patients with ME/CFS, 2021, Joseph et al You can link public posts from other social media including PR.

I agree there is no useful evidence of efficacy for GET in ME/CFS. However, as has been demonstrated time after time by surveys, there is credible evidence of serious harm. Cochrane reviews, according to their own handbook for reviewers, are supposed to include harms evidence investigation...

I don't think it's just incompetence, I think Cochrane's leaders have been persuaded to stall this new review process indefinitely and keep the 2019 review. The fact that the current editor in chief published the 2019 review demonstrates a lack of understanding of evidence. The fact that she...

It concerns me that stories like this one focus on the lack of clinics and doctors helping people recover, when the reality at present is that all the clinics in the world have no clue how to make anyone recover. There is no cure except time and luck. Though people still need validation and...

Cochrane updates Since Cochrane has not posted any update from Hilda and the IAG or anyone else this year, here's my update on what we're still waiting to hear from them. All the 5 updates, 3 in mid 2021 and 2 in late 2023, are listed and linked here Stakeholder engagement in high-profile...

It may be similar in terms of exertion. I find folding laundry exhausting - all that arm movement, sometimes lifting items with some weight above shoulder height etc. When possible I get my cleaner to do it.

Some posts that were taking this thread off topic have been moved to a new thread: Wellness Recovery Action Plan, as recommended by BACME, UK

The wellness recovery plan thing is in brackets as an optional extra, I assume for those who are asking for help with psychological symptoms. It's not part of the care plan. My point is that the care plan document already exists to cover everything this project is covering, so why reinvent the...

Thank you for trying, @Jonathan Edwards. I hope something useful will come of your efforts this time.

I've been exploring some of the current BACME guides, all of which have been updated or written since NICE 2021. Of particular relevance to this project: The BACME ME/CFS Care and Support Plan Guidance, December 2022...

I've been browsing some of the BACME guides which have all been updated to supposedly be NICE compliant. https://bacme.info/library/management_guides/ The guide to therapy includes a 'pragmatic model' on page 3 which still has stuff like early life trauma as a predisposing factor, and their...

Fixed.

The BACME guide for severe ME/CFS has a section on feeding. It does include enteral feeding as needed sometimes, but that is followed by a section on eating disorders, so may lead clinicians to assume eating disorders are the problem...

This article has useful case studies and commentary. Life-Threatening Malnutrition in Very Severe ME/CFS, 2021, Baxter, Speight, Weir

Afternoon sessions Delivering NSS & DHSC recommendations Dysregulation BACME severely affected guide. Long- Covid CYP & Adults Outcome measures led by Pete Gladwell Care & Support Plans Moving NICEly by someone who runs outdoor wilderness therapy Mindfulness by a psychotherapist

I think it would be reasonable for pwME to ask for a transcript of Dr Alan Stewart's keynote speech. He's one of the many medical advisors to the Sussex group led by Colin Barton that has a disproportionate number of medical advisors for a local group, all proponents of the BPS approach. See...

Some posts have been moved to: COFFI - The international collaborative on fatigue following infection

The project funded by the MEA and led by Tyson and Gladwell is creating several PROMs. The first two are TIMES and PASS. This is the project Sarah Tyson wrote about in the latest MEA article, and quoted from pwME who filled in the two questionnaires (PROMs) The separate Gladwell study referred...

Confusing, isn't it. They are both part of this project. TIMES is the symptoms one that was run in November 2023. We don't seem to have had much discussion about it: https://www.s4me.info/threads/‘the-index-of-me-symptoms-times-’-developing-a-clinical-assessment-toolkit-for-me-cfs.36345/ PASS...