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Ugh. That's a new one - biographical repair. Yet another way to get patients to believe some nonsense and in consequence to pretend they have recovered and to stop bothering doctors. How to lie to patients and get away with it.

They are repeating what is said in the PACE trial documents and in the Cochrane review. It is factually incorrect. Surveys specifically about GET led by specialist therapists using the PACE model show very high rates of both physical and mental harm from GET. Maybe someone should send them our...

A bit of a rant. Why are psychologists and rehabilitationists so unaware that their research, questionnaires and treatment can cause harm? To answer my own questions: Research that causes harm includes all the stuff about catastrophising and chlidhood trauma and perfectionism and anhedonia...

It's good to see you are willing to learn and open to hearing different views. I note you say you have a lot of interest in ME/CFS. I think you have indicated you are interested in working further on ME/CFS after you complete your Masters' degree. If that's the case, I hope you will continue to...

Was there any mention of PEM, or which diagnostic criteria they used?

Maybe it's a translation problem.

The heading speaks for itself. We have had a couple of instances recently of researchers joining us to discuss their research who are completely in denial about the potential for their work to cause harm. Thus strikes me as very odd. How could they be so unaware. Discuss.

GET for the brain. :banghead:

I have been thinking about this again and have re-read the flyer and information for participants. Neither mentions anything about delving into childhood experiences or family dynamics. Can I ask again what the point of this study is? Do you have a hypothesis you want to explore, or have some...

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.