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Moderator note: Please take care in comments about individuals, and avoid speculation about their health, including their diagnosis and their mental health. Please also avoid personal insults about any individual's character, intelligence or other personal characteristics.

Copied post Paul Garner and Fiona Symington work together on the Consumer Advisory Council of COFFI, the BPS organisation. https://www.coffi-collaborative.com/consumer-advisory-committee See this thread: COFFI - The international collaborative on fatigue following infection

Paul Garner and Fiona Symington work together on the Consumer Advisory Council of COFFI, the BPS organisation. https://www.coffi-collaborative.com/consumer-advisory-committee See this thread: COFFI - The international collaborative on fatigue following infection

Posts about Paul Garner and his co letter writer Fiona Symington have been moved to Paul Garner on Long Covid and ME/CFS - BMJ articles and other media.

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...