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I'm not sure a social media campaign would be fruitful unless it has a clear focus and and purpose.

The letters and MEA reply are on this thread: https://www.s4me.info/threads/open-letters-to-the-uk-me-association-trustees-about-a-research-project-developing-proms-led-by-sarah-tyson.37937/ I'm considering a response to the unsatisfactory reply. I think we need to look at the wider context...

But @FMMM1, this is not a clinical trial of an intervention, so subjective versus objective outcomes is not the point here.

Looks like it's already well under way: Start Date: January 2023 End Date: December 2024

Online cognitive training for people with cognitive impairment following SARS-CoV-2 infection: A randomised controlled clinical trial Abstract: Research question: What is the impact of the ReaCT cognitive training programme on cognition and other key health-related outcomes in people with...

I agree it's a wider cultural and justice issue. We may need separate discussion threads on different aspects if this discussion develops. I think getting other UK organisations fighting for justice involved could be worthwhile if they can be presented with a clear case about ME/CFS. I think on...

This thread has expanded into wider issues beyond just the PROMs. A new thread has been started where evidence and possible action can be discussed. UK: Collecting evidence on problematic UK approaches to ME/CFS and Long Covid

I can see this is ambitious, and they have signed up an impressive range of speakers, but it's far too much packed into two very long days. I hope there will be recordings available afterwards. There's no way I can watch that much in two days.

We are also still waiting for the government's implementation plan to be published.

I agree it would be good to try to spell out clearly what is happening, not just within this PROMS project but with BACME, rehab being promoted, PEM being redefined as symptoms after activity, ME/CFS being disappeared into FND, MUS, 'fatiguing conditions', neglect of severe and very severe pwME...

They shouldn't be setting 'therapeutic goals' since there is no treatment.

Thread with collected Wessely quotes here: Simon Wessely Research & Related Quotes

I think the new bit might be the taking away sick/fit notes from GP's and having people designated to do it instead. I gather it's already been expanded so pharmacists and some other varieties of clinicians can do it, but this seems to go further.

Thank you Maat. I am horrified by the Prime Minister's speech. He has no idea what he's talking about, and is pandering to prejudice for political reasons.

Except in the infamous chapter about ME/CFS in Fiona Fox's book about her work at the SMC. Beyond the Hype: The Inside Story of Science's Biggest Media Controversies

I'm pleased you are doing what you can to understand people's limitations. My ME/CFS is classed as borderline moderate/severe according to the NICE guidelines classification, but I can't manage zoom conversations at all. I can have short conversations with family or friends, face to face or by...

The sentence I have bolded is very concerning. While I appreciate that you are sticking to guidelines, I think it's important that researchers are made aware of harms they may not have thought of when psychological studies include asking people who are very sick to talk about the impact of...

I concur with serious concerns about the impact participation in this study may have on participants. It is no small thing, as I'm sure you are aware, exposing one's innermost thoughts and fears to an unknown researcher whose purpose is unclear, even when well. Many times more so when also...

Here's one. I hope you will read the discussion on the thread, as members point out pitfalls in the way the authors drew false conclusions: The importance of school in the management of (ME/CFS): issues identified by adolescents and their families, 2022, Cleary, Crawley et al

Edit: This post was written befor Dania edited the opening post to provide more information. Hi @Dania Ala, welcome to the forum. I think it's important that reseachers inviting people to participate in a study do so in a professional way, with details of their professional affiliation...