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Yep, this is a real problem. I had some counselling a couple of years ago and told them how confusing their scoring systems were—both GAD-7 (anxiety) and PHQ-9 (depression). I said: do you want me to answer based on my mental health symptoms or just in general (i.e., including all my ME...

Unfortunately, as most here will know, IiMER have had historical disagreeements with other charities, and they generally do not work together. I think that's a shame. I'm not sure if eventually they became involved in the Delivery Plan.

AfME advertised for a Research Director in Spring 2022 (https://www.charityjob.co.uk/jobs/action-for-m-e-/research-director/817657). I thought it was the type of post the larger charities needed. It was never clear to me whether they filled the role, but there is a Science Director listed on...

But it was re-established with an entirely biomedical stance after the MEGA project was rejected and Crawley left (circa 2017). That's why I joined the PAG in 2019. I have no idea what's going to happen with MERC after the Delivery Plan is published. Everything is up in the air. I guess it...

I'm not suggesting they are not aware that larger investment is needed. But I don't think they've prioritized enough the need for a substantial change in direction from the large institutional funders. Remember, this is primarily what the CMRC was set up to do. But my experience in the CMRC PAG...

https://threadreaderapp.com/thread/1682007446116618243.html

I have posted a short Twitter thread on the research aspect of the UK ME/CFS Delivery Plan, which is now massively delayed. I hope the report is published soon.

His descriptions are clearly coloured by his own experience, perhaps too much.

You love to see it.

Ok, I didn't see that. I only read the abstract, which is not very clear as they seem to conflate ME/CFS group with 'fatigue symptoms'.

This is probably next to useless, seeing as they think ME/CFS is just fatigue and low ferritin is associated with fatigue anyway.

"but relates to how people diagnosed with mental illness are treated in society, psychiatry and the law." Have they spoken to patients with ME to see how they have been treated?!

I've not read this—and likely won't—but, based on the abstract, I don't accept this is why patients are resistant to psychiatrisation of ME/CFS. It's because it doesn't make any sense, it doesn't fit with data or patient experience, and because this mistake has been made several times in the...

Also, I think he's one of those strange types who believe the same basic interventions can treat and even cure myriad disparate illnesses, including your ME/CFS, your Great Aunt's fibromyalgia, and your neighbour's diabetes.

Two questions: Does anyone have information on funding for the PSP and how much each org gave? And would you include any contributions from the MRC and NIHR and Chief Scientist Office for Scotland in UK ME/CFS research spending? The project is not included in either the UKRI or NIHR databases...

There are a few threads on here where he is discussed. For me, he's firmly in the quack category. Perhaps he's a bit like the US version of Dr Myhill. Hypotheses presented as fact, and lots of expensive supplements (and several books for good measure)!

I should be invoicing the Guardian at this point.

It's strange that Lancet TV never took off...

The author is a freelance writer based in the US. He may have been asked to pitch by Remission Biome.

Thanks. Forgot about that thread. It overlaps with this one but much of that thread's discussion is about getting info together for advocacy.