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Some posts have been moved to a new thread: Does ME/CFS cause permanent damage? Discussion thread A post has been moved to a new thread: USA - NIH: Clinical trial to test immune modulation strategy for hospitalized covid-19 patients begins, Sept 2023

The ME Association have made their response available. From an email newsletter:

Very well summarised, Ravn. I've had a go at picking apart the abstract, which is wrong on every level, yet written to sound convincing: Referring to 'Chronic fatigue syndromes is a sneaky way of pretending all fatiguing illness that doesn't have an easily recognised biological basis can be...

As of yesterday, 24th September, Science for ME has still not received any response from Cochrane other than acknowledgement of receipt of emails. The page at Cochrane with updates on the IAG and the review process has still not been updated since August 2021. Stakeholder engagement in...

In using the term syndromes, I think they are deliberately creating the impression that any fatiguing illness without an established pathology is essentially the same, so they include ME/CFS, Long Covid, as well as burnout and other stress related problems. Then they assume it's all stress...

:D I'm very good at forgetting. I should have googled it instead trying google translate it.

? Google translate has failed me on this one.

Very well put, @boolybooly. I am old enough to be around to observe the 1960's and 70's hippy adoption of TM among other mindfulness and meditation practices. At that time it was more about self exploration and learning from other religious practices by people who had rejected parts at least...

I'd guess Paul Garner and Live Landmark. Possibly others. All are listed as clinical or university affiliated.

Sure, I'm happy to hear about those who recovered, especially if there are statistically significantly more of them in the active treatment group of a clinical trial than in the control group, and recovery is clinically real and long lasting, not just filling in questionnaires differently...

These guys are so predictable. Assert you beliefs often enough and whinge about researcher harassment often enough and somehow everyone is supposed to believe this crap is evidence based medicine.

That study was on people hospitalised with severe Covid, I think, so not necessarily representative of people who had mild or asymptomatic Covid then went on to develop ME/CFS.

Thanks for confirming. It will be very interesting to get feedback from you and anyone else signing up for this.

Is this the same one, currently quoting me £86.50 on Amazon If so, you are paying nearly £100 for connecting it to Visible for a year. That seems excessive, but I guess business is business, and business will charge whatever people will pay.

:laugh: I'm clearly lacking a fairy godmother. Now I know what's wrong with me, hurrah. Thanks Peter, a great way of showing up the emptiness of this stuff.

I had a quick look at the website. From the glimpse it gives of the cards I can see that some people learning to adjust to disabling chronic illness might find them useful particularly in learning to break down activities into tiny achievable steps and learning to feel OK about that. For an old...

As far as I can see it was a simple database query and stats package study, with no external funding and done by a group of people. My guess is a student group project.

I'm disappointed the MEA hasn't mentioned the S4ME letters to Cochrane and petition in their email newsletters.

Email newsletter 21st September The ME Association is thinking about investing in the creation of a new Health App for ME/CFS and Long Covid. Before we commission the project, we wanted to ask about your own experiences with Health Apps and whether you think there is a place for a new App...

I have today sent this letter by email to Richard Morley, Cochrane’s Consumer Engagement Officer: Dear Richard Morley, I am one of the Science for ME volunteer staff involved in writing our recent letter to Dr Soares-Weiser requesting urgent action on the review Exercise therapy for ME/CFS...