Search results

This is PrecisionLife's website: https://precisionlife.com/ Threads about their work: This one is a research paper: Genetic Risk Factors for ME/CFS Identified using Combinatorial Analysis, 2022, Das et al And this one has posts about PrecisionLife working with Metrodoro Metrodora Foundation

I see the value of OT's for equipment and workplace adjustment. My problem with OT's has been the sort who run my local clinic who seem to have been left to do whatever they like, including getting caught up with wacky quacky therapies.

My problem with all these scales is that I am on very different levels for physical and mental activity.

Also some of the very severe cases became that way because they were forced or persuaded to do GET and as a result got very much sicker.

I don't think any of the 4 physios who are Physios for ME are part of BACME or have worked in ME/CFS clinics. I think they said they came to it from the perspective of having friends or family members with ME. They were never part of the setup I want dismantled.

https://meassociation.org.uk/wp-content/uploads/DISABILITY-RATING-SCALE-FEBRUARY-2020.pdf?fbclid=IwAR2_Q4Qre79-xDpdqOAZqBixsIh1lyW4tJatrSf97-66VIFNBDHg8rhQTHo From Facebook: https://www.facebook.com/meassociation?comment_id=Y29tbWVudDo4Mzk4NTg0NjE1MDE1MjFfMTY5Nzc3NzU5NDA4Mjk3NQ== MEA Disability...

Still the same old nonsense.

This is one of several parts of the NICE guideline that look to me like compromises the committee had to make in order to get agreement and everyone to sign off on it. So we still have this nonsense about exercise when pwME are 'ready' to give physios a role, and we have CBT to help people...

Comes from Gilbert and Sullivan's Mikado.

For more about these research projects see this thread: $720,000 grants to 2 La Trobe University researchers from the Mason Foundation for ME and long Covid research

To discuss the idea of a research misconduct complaint about the study, go to the main study thread. Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome, 2024, Walitt et al If there's enough interest to take it forward, a thread in advocacy could be made.

Some posts have been moved to Trying unproven treatments - discussion thread

Some posts about how to address a Lord in the UK have been moved to the discussion thread about Simon Wessely (who isn't a Lord, at least not yet)

I don't think that's right. I think he would be addressed as Lord Wessely, and his full title would be Lord Wessely of Fairyland, not Lord Simon. Either way, given some recent appointments to the Lords, it's hardly an honorable status, if it ever was.

I think it's worth going back to the initial article by the MEA describing this project: https://meassociation.org.uk/2023/05/me-association-funds-research-for-a-new-clinical-assessment-toolkit-in-nhs-me-cfs-specialist-services/ It is clear from this that the aim is not just to produce an...

Posts discussing the results and data availability of the PACE trial have been moved to A general thread on the PACE trial!

The journal seems to be a marketing vehicle for sports and fitness related products and companies masquerading as a scientific journal with all the trappings of peer review etc. I assumed the cartoon that calls itself a 'graph' was a spoof.

Can someone copy the rest of the twitter thread?

It is very good. Huge thanks to George Mionbiot. It's wonderful to have someone working in the media, like David Tuller also, recognising the bad science and harm we have suffered. I hope it will be widely read.