Trisha Greenhalgh on ME/CFS and Long Covid

@Trish , Omigosh, Greenhalgh's responses were utterly bizarre and inappropriate. Hard to understand why she would consider your perfectly reasoned posts 'trolling'. Judging from her mass blocking of everyone with ME in their bio on Twitter, this further reinforces that she appears to have some odd hangup about people with this disease. Thank you for being brave enough to try to engage with her.
 
Thanks again everyone, I've got over it.

You know how we often think afterwards of something we wish we'd said in a difficult situation. I thought when I woke up this morning that I would have liked to say: "Thank you so much, Professor Greenhalgh, for providing me with a new experience to savour. I have never been accused of trolling before. In case you haven't either, let me share with you what it feels like to be so (wrongly) accused - it feels horrible. May I humbly recommend you consult a social media moderation expert on the definition of trolling."
 
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TG has reposted a thread from Twitter on Bluesky about the August Lancet paper on LC. I still can't get my head round the total disconnect between her hostility to ME patients and her support for the CBT-GET model for ME and her 'soundness' on LC.

She also appears so ultra-sensitive to anything ME patients say (in my reading based on her total belief in the 'dangerous ME activists') that there's no point trying to engage with her on it.

https://bsky.app/profile/trishgreenhalgh.bsky.social/post/3lbouimqmck2j
 
JohnTheJack said:
I still can't get my head round the total disconnect between her hostility to ME patients and her support for the CBT-GET model for ME and her 'soundness' on LC.
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She's friends with Wessely/Gerada. I think the only way some of that clique can hold on to their beliefs about ME/CFS is by demonising pwME. Some of their NHS colleagues now have LC, and I think Gerada even set up a support group for them, so it must be a hard disconnect to hold on to.
 
Trish said:
She's friends with Wessely/Gerada. I think the only way some of that clique can hold on to their beliefs about ME/CFS is by demonising pwME. Some of their NHS colleagues now have LC, and I think Gerada even set up a support group for them, so it must be a hard disconnect to hold on to.
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Yes, and in keeping with the mental gymnastics they've been performing for decades.
 
Given her previous hostility to (and mass-blocking of) pwME, I was surprised at this reply to the thread, where she said she was "turned down for a grant to explore the parallels between persistent LC and ME".

A lot of handwaving about clots and "exhausted T-helper cells" and rehab: perhaps the kind of scientific understanding that is to be expected from a "professor of primary care health sciences". She is a high-profile figure but from a scientific perspective her article does not add anything new and really just contributes to the confusion.
 
Nightsong said:
Given her previous hostility to (and mass-blocking of) pwME, I was surprised at this reply to the thread, where she said she was "turned down for a grant to explore the parallels between persistent LC and ME".

A lot of handwaving about clots and "exhausted T-helper cells" and rehab: perhaps the kind of scientific understanding that is to be expected from a "professor of primary care health sciences". She is a high-profile figure but from a scientific perspective her article does not add anything new and really just contributes to the confusion.
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She really hasn't produced or said anything useful about LC. It just shows the despair in the patient community for any recognition that isn't dismissive that people would celebrate someone who really hasn't done anything. Her papers on LC were mediocre and while she is still hostile to the obvious fact that ME/CFS is the biggest issue in LC, the LC community has long moved past this. Eventually she will trip and reveal her true beliefs.

It's definitely for the best that she doesn't study the parallels. Or anything having to do with us, directly or indirectly. Anyone confused about this at the 5 year mark has no business doing any of this. Best case is if she just drops the issue and disappears, but it's not like there's any chance of a shortage of bad research in the future.
 
Trish said:
She's friends with Wessely/Gerada. I think the only way some of that clique can hold on to their beliefs about ME/CFS is by demonising pwME. Some of their NHS colleagues now have LC, and I think Gerada even set up a support group for them, so it must be a hard disconnect to hold on to.
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And I suspect it’s some kind of pathetic ‘etiquette’ everyone is forced to observe and doesn’t either mind or see the utter harmfulness of it because they are allowed to get on with the bit that matters to them

you watch it even in good people and I’ve had to tiptoe myself even with good medical professionals where you have to say the pathetic thing of ‘I’m sure they meant no harm, or just didn’t realise’ which is nonsense when after a few months anyone involved had a massive moral dilemma of this is destroying the person you are treating forever ‘but it’s awkward if you stop cos you might disgruntle someone’ so it’s callous indifference of our lives being worth so much less that it’s just about sensitivity of speaking truth.

then everyone gets used to that as it’s a norm of ‘nice’ rather than bigotry and even we get told we aren’t being nice if we refuse to bigot ourselves by bowing to this ‘etiquette’

I suspect that this exists says everything about the personalities of the original people behind it and their reaction to power.

I still find it gobsmacking when you think of the married couple element at the top of the two big power bases at one point everyone being forced to pretend ‘oh of course it’s fine they never let that be an issue’ which I thinks another emperors new clothes they all had to toe the line on for example

for all the reasons people might keep their own name after marrying (which I have no issue with) it’s not a norm in gp circles as much as it is in academia or maybe surgical world and there are plenty of ways people make it clear everyone knows they are married ie it’s just about not splitting your literature in half not concealing that relationship. I don’t get the impression it is allowed to ever be a discussion point at all even when it has been brought up in the past (remember a newspaper article with whole family and it being closed down with a one liner implying it very much wasn’t an issue - which isn’t the same as not having the same views )


That one’s an interesting bellwether on culture too as to how free people feel to mention certain things or have their own views
 
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The paper:

"Muscle weakness post-COVID: a practical guide for primary care"
https://bjgp.org/content/74/749/573

Since the earliest stages of the pandemic, muscle weakness has been a key symptom described by patients post-COVID infection. Estimated to affect up to 60% of those with long COVID, it can have a profound effect on the ability to carry out activities of daily living.1 Many patients describe a fluctuating pattern to such symptoms, which can be triggered by exercise or fatigue.2 Most of these patients do not receive any muscle-specific investigations and many are told that they are experiencing the impacts of deconditioning or that they have a psychological or functional disorder. Such patients are often prescribed antidepressants or diverted down rehabilitation or psychological support pathways. Although some patients find this helpful, many patients experiencing muscle symptoms do not benefit from such approaches. Two case studies are given in Box 1.

Box 1.
Case studies
As more is learned about the impact of COVID on the neuromuscular system, recent research has highlighted a variety of ways that COVID damages muscle and nerve cells,3 resulting in muscle weakness. This changing knowledge needs to lead to changing practice.
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Trish said:
I can't see it as I've blocked her. Can you copy the post here, please?
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Trish G on Bluesky said:
Our new paper, led by @oohgpwales.bsky.social:

Muscle weakness post-COVID: a practical guide for primary care

TL;DR: patients with muscle weakness after COVID-19 infection may have myelopathy, nerve damage or other organic pathology. Not always due to 'deconditioning'!

https://bjgp.org/content/74/749/573
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