Improving Quality in Adult Long Covid Services: Findings from the LOCOMOTION Quality Improvement Collaborative, 2024, Darbyshire, Greenhalgh+

[Trish]

For the record and so as not to take this thread further off topic, I have posted the whole of my conversation with Greenhalgh on Bluesky here:
Trisha Greenhalgh on ME/CFS and Long Covid

 

[Lou B Lou]

I just want to give a shout-out to Anne Kielland and the others in the Tjenesten and MEg project that wrote their findings supported what patients have been saying (about lack of help etc). It should have been done here as well.

Can you give a link to that please @Midnattsol

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[tornandfrayed]

This seems like a positive paper.

I just don't understand Greenhalgh though. Sometimes she seems to get it, but then she's so hostile to patients.

I'm horrified by how she responded to you @Trish. No wonder you are upset.

 

[Wyva]

It was an unreasonable and uncalled for reaction to a quite polite request asking for help. Not surprising though, considering her history of mass blocking (often completely unaware) people on Twitter.

 

[rvallee]

Well that went well (not). Greenhalgh has just accused me of trolling her. I'm feeling surprisingly upset.

Wow. I saw it. How disrespectful. Dishonorable, even. But I guess that's the answer: PESE/PEM in Long Covid? Yes, be careful, genuine. ME/CFS, characterized by PESE/PEM? Screw you filthy trolls!

She seems mostly to write those papers to fluff up the reputation of the clinics. There's basically not much else in the string of papers she published. She describes what they do and basically present it as some vignette of how wonderful and smart the people at the clinics are. Skin and bone, zero meat.

 

[ukxmrv]

Imagine if we could charge royalties for inventing and testing 'pacing'.

At the very least people with ME should be credited somewhere?

All the new LC staff getting paid to teach this. Shouldn't they be passing some of the credit on?

 

[Midnattsol]

Can you give a link to that please @Midnattsol

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It is from the final paragraph of this document; https://www.fafo.no/zoo-publikasjoner/andre-fafo-utgivelser/tjenesten-og-meg-samlerapport The heading is "Funnene er tankevekkende" which translates to "Our findings are food for thought".

A google translation:
"Findings, both in qualitative and quantitative sub-studies in the project, are multifaceted, but supportive mainly previous claims from patient representatives and relatives that the services is little is adapted to the needs and situation of ME sufferers. There is a need for more knowledge about ME in the service apparatus and better dialogue with the users, but most of all research into the causes of illness and more effective treatment. Few of the findings in the project indicate that the measures the services can take offering this group today leads to an improved quality of life or better working ability for those affected, and sometimes they make life worse for both the sick and their relatives. We encourage the services to listen to those affected, and to a greater extent seek to adapt the services to their individual needs."

If anyone wants to discuss the Tjenesten and MEg project further it has its own thread here: Tjenesten og MEg | The health service and ME, Sintef FaFo

 

[TiredSam]

Everybody's doin' a brand new dance now