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NICE failed to appreciate the scientific evidence. Have you seen this review of the Lightning Process by Phil Parker? There are no harms from GET. Everyone gets tired after exercise. Ok, there are harms but from an inappropriate delivery of GET. If properly supervised then all is safe...

They rate outcomes (e.g. fatigue) for each comparison (e.g. CBT versus treatment as usual) rather than individual studies. It's in the evidence review part [G] Evidence reviews for the non-pharmacological management of ME/CFS. It's all a bit confusing though because there were so many outcomes...

I think those involved in "established rehabilitation practice" are afraid that outside experts like Edwards will look at the evidence in their field critically. They seem to demand that trials of "complex interventions" are evaluated differently and this exceptionalism seems hard to justify.

I think some of the assertiveness in the comments and the negative response from some royal colleges has to do with that this guideline 'goes against established rehabilitation practice'. There are several hints that indicate this guideline is seen as a threat for 'established rehabilitation...

Excellent interview. Thanks to both @Mike Harley and @svetoslav80 Agree. For some countries, they are also the only source of information about what life is like in that country. Valuable info.

Just recording that Robert Howard tweeted on 7:45 PM · Oct 29, 2021 (my bolding) "I’m proud that medical leaders have stood up for patients with ME/CFS and for continued access to the evidenced treatments that can help them in the face of destructive individuals and groups who wish otherwise."

The comments make clear that there's a lot that needs to change in the British ME/CFS healthcare system. Deepest sympathies to patients who have to navigate this Scylla and Charybdis. Hope the NICE guideline will bring some real improvements.

Many of these stakeholder comments are a depressing read: often very aggressive and dismissive. Some question whether ME/CFS is any different from fatigue. Post-exertional malaise is seen as unscientific cause everyone gets fatigued after exercise. Some deny there are harms or controversy about...

Jonathan Edwards testimony must have made an impression. Several stakeholders refer to it in their submission, often attacking him and his reputation in an aggressive way (especially the comments by the RCP are inappropriate). Here's a selection of what I'd stumbled upon but there might be...

There were others that defended The Lightning Process including the Royal College of General Practitioners who wrote: "We note that the committee has decided to make a recommendation against the use of the Lightning Process as a psychological/behavioural intervention. There has been a recent...

Disappointed by the statements of the royal colleges. BACME seemed ok to work with the new guideline. Nonetheless, I think the publication of this new guideline is an important change for the ME/CFS community. Evelien and I have written a blog post to put things in perspective. It's mostly...

There is a guideline on ME/CFS being prepared in the Netherlands and the plan was to take the NICE guideline as a starting point. I think something similar will happen in Belgium for a new deal between the government reimbursement and CFS centres: the NICE guideline will have some influence on it.

Related discussion in this old Thread: https://www.s4me.info/threads/a-database-website-for-me-images.7312/#post-130678 (Mod note - threads now merged) I think the main problem is that if the images of patients have to be in a main (and often free) photo library but this means they can also be...

Medscape (you need to log in to read it but it's free): https://www.medscape.com/viewarticle/961843 They seem to have taken as many SMC quotes as they can.

The news articles look pretty good except for the term "Victory for campaigners" The comments of Miller and White are annoying but they focus on "gentle and controlled pushing" of patients' limits. White says that "this guideline seems to suggest that patients need to learn to live with CFS/ME...

I think I heard Nath say this during the Q&A but at that point his audio was not very clear. Are there others who heard it too?

We're assuming that Wessely, White, Sharpe, Chalder etc. "sent" others to the meeting but who knows perhaps they weren't able to ensure a seat for themselves at the table. They might be quite frustrated that not they, the domain experts, but rehabilitation people like Turner-Stokes (who didn't...

This paper published in the journal Cell claims that they found Hygromycin A to be effective at killing B. burgdorferi (the bacteria that causes Lyme) in mice. The authors write: "his selective antibiotic holds the promise of providing a better therapeutic for Lyme disease and eradicating it in...

Highlights A selective screen against B. burgdorferi led to the rediscovery of hygromycin A• The mechanism of selectivity is puzzling because hygromycin A targets the ribosome• Hygromycin A is smuggled into spirochetes by the conserved transporter BmpDEFG• Hygromycin A is efficacious in a mouse...