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Re pem, this same person made this comment: “Jason used this as a definition of PEM in his SEID research. "To meet the post-exertional malaise criteria, a patient would need to have indicated presence of at least 1 of our two post-exertional malaise symptoms: sickness/fatigue for >24 h after...

The main concern for me is people like Jason have done studies using data to show that SEID can diagnose even more people than under Fukuda which are too broad in my opinion. An American advocate explained it well in this following comment: “Data from a community‑based sample indicated that...

I believe there is atypical ME inclusion in the ICC which could pick up milder patients.

I read it in the light of US policy does seem to influence what happens in other countries and would include UK. In the current review of the NICE guidelines, they cite changes happening in the US as one of the reasons they agreed to the review.

I have signed. https://www.change.org/p/the-us-department-of-health-and-human-services-cdc-adopt-the-distinct-disease-myalgic-encephalomyelitis-me-as-defined-by-icc-now?recruiter=2417656&utm_source=share_petition&utm_medium=facebook_link&utm_campaign=share_petition

Thank you and no problem @Mithriel

I too do not agree that ME is characterised by fatigue. It is characterised by extreme low stamina wirh global increase in symptoms if a person passes their individual baseline. I also find there is very little mention of the sensory sensitivity problems in ME which like exertion have to be...

Will there be a transcript of the debate? Thank you.

@Dx Revision Watch, Merryn’s family kindly explained to me today that they are aware of this case and have established that although it is mentioned on her death certificate, unfortunately it is not classed as her official cause of death. They agree of course it should have been.

Thanks, I am glad they have put it in the print edition as well. It’s interesting to note that there were no comments under the online article. I am sure people did comment so the Daily Mail almost certainly have not allowed them as it is rare people don’t comment under Mail articles.

Have signed. Curious what drugs ME Action have in mind?

@mango, who are the people who wrote this request? Thank you.

Thank you everyone, v helpful, as and as awful as I expected.

I was reading the chapter again in the book Cure by UK author Jo Marchant (published in 2016) on fatigue and CFS. She refers to there being robust scientific findings that when CFS patients are convinced that their condition is biological and untreatable, and fear that engaging in activity will...

@dave30th, you said above if anybody has heard of White referring to the CSS model publicly you would be interested. In the book, Cure, by Jo Marchant she discusses the theory by the sports scientist, Tim Noakes, that the brain in people with CFS may be over-estimating how fatigued the person...

I second all of this. The politics of ME is key.

Agree what a waste of funds...

Constant since ME became severe 13 years ago combined with constant sensation of blocked ears that began first year of ME 20 years ago. Saw ENT doc for latter, found nothing.

Thanks @dave30th for that clarification. I wrongly thought when the author said, ‘He (PW) doesn’t call it a central governor, but he too believes that a combination of triggers – genetic, environmental, psychological – overwhelms the body and throws the nervous system out of balance, causing the...

@Cinders66, thanks for link to Times article, v useful in showing me people like White were using the troubling CSS theory in their work too. I thought people like White worked from the straightforward and preposterous model that ME patients had developed a fear of movement which led to...