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Summary of the latest S4ME letter to Cochrane: We mark the fact that it's 6 months since we first wrote to Cochrane and no action has been taken on our requests, and no progress has been made on the new review. We formally present the petition to Cochrane and encourage them to read the...

The committee has sent a new letter to key people at Cochrane, posted on the letter thread: https://www.s4me.info/threads/s4me-2023-open-letter-to-cochrane-request-for-action-on-the-me-cfs-exercise-therapy-review.34973/page-2#post-521800 It's quite long, so I'll summarise it in the next post.

I like the idea of the MEA/AfME/Bell scales because they are short, the person only has to select a single answer, so it's quick and easy to fill in, and in situations where we need a quick and clear indicator of level of disability, such as benefit applications, explaining to carers and...

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