Trisha Greenhalgh on ME/CFS and Long Covid

If she is a GET proponent with a plan to avoid controversy and then quietly sneaking GET into LC guidelines, she could do a lot of damage to LC patients. It's bad that she is avoiding discussion of the problems with GET.

 

I’ve asked TG several polite questions on Twitter about her views on ME/CFS research and treatment since she became involved with LC. She’s not replied to any of them.
https://twitter.com/user/status/1349828819369283584


As far as I’m aware there isn’t a single reference to ME/CFS let alone the ME/CFS Guideline in Long Covid Guideline. (Please correct me if I’m wrong.)

I am reminded of her article in the BMJ on patient-led research in which she used ME/CFS as a negative example and an exception.

[I’ve self-edited some my comments above to allow TG’s words to speak for themselves]



https://twitter.com/user/status/1349802978782433280

https://twitter.com/user/status/1349830059352350723

 

In one of the tweets in the post I quote, Greenhalgh suggests that the webinar wasn't recorded, which doesn't quite seem to match with the response I just got from the CIHR after I asked if it was recorded and will be available to watch,

 

I have a feeling that Greenhalgh has boxed herself into a corner in various respects.
The strident advocacy for LC together with the deafeningly silent approach to ME, when there is no doubt that they overlap to a very large degree will soon enough appear ridiculous.
Denying the existence of a recording of your talk is a bad move.

 

The webinar was recorded -- before it ended I messaged a request that it not be released unless Trish's assault on ME patients was edited out -- I believe I finished with something like "no use in traumatizing more people".

I doubt any of it will be released.

 

To be honest, my assumption was that we would never see it. Hopefully CIHR won't be asking her back again, at least on this subject.

 

Regarding Greenhalgh, I remember something happened before where someone was asked a question and the ME/CFS community didn’t like the answer and considered it bad PR. I don’t know what happened here but sometimes it’s best not to ask questions about ME/CFS if it might lead to annoying statements. ETA: Think it might have been a question to a doctor on the radio or TV.

 

I want to know what was said, especially after the way Greenhalgh complained of the patients who described what they remember she said, though they seemed to independently describe similar things. I think that the patients complained about should at least be able to access the recording so that they could either correct themselves, or confirm their own memories.

 

Fwiw, I can confirm most of what Peter White wrote in his twitter thread -- I can't confirm anything after she answered the first question, I was too triggered and had to leave the webinar early to prep for a meeting.

In her presentation, Trish had a long list of Long Covid symptoms but no mention of exercise intolerance generally or post exertional malaise specifically.

In the chat box, I asked about PEM, noting that I'd seen many social media reports of a dysfunctional response to exercise by Long Covid patients. I did not mention ME. After her presentation, Q and A started and my question was selected by Dr Khan to be asked first.

The narrative she shared was of militant ME patients and good research supporting exercise for 'chronic fatigue'. I wish I could remember more specifics, but like I said, it was physically and emotionally triggering.

Part of me wants it to be published to expose Trish's threat to patient safety.

She has not responded to any offers to discuss and debrief and be open to learning. And that makes her a hypocrite given her comment about another issue she got wrong.

 

I agree. I think we should know what was said at this sort of level of medical propaganda.

 

If in future anyone 'attends' any webinar, can I suggest that they record it on their pc/tablet. There is a lot of free software to do it; the one I use is Audacity. It's very simple to use; you just set the input to your pc sound system and hit record. It will then record everything that is being played thro your pc; you then save it as an mp3.
eta: obviously this is audio only.

 

Very good suggestion I very often record the webinars and talks I attend. I, too, use Audacity for audio.

For recording video on Windows/PC I would recommend OBS Studio (free) or Bandicam (there's a free version, and a full pay for version that lets you record longer videos). Both are very easy to use.

(Some webinar apps don't allow you to record video/screengrabs, so it doesn't always work.)

 

Like ScottTriGuy I also asked that the webinar not be posted or alternately be posted with the Q & A edited out. In addition I requested that the webinar organizers, Canadian Institute of Health Research who BTW support Alain Moreau's work, send an email to webinar participants clarifying their position on PACE and also stating the importance of the Workwell Foundation's research on PEM. This was through a personal email to Karim Kahn.

Perhaps this was a mistake but I'll explain my rational.

In Canada, where likely many of the webinar participants were from due to time of day and webinar promotion, I haven't seen the PACE trial as a major point of controversy or that it has significantly affected medical treatment. This is not to say that we don't have our own "all in your head - I know a very good psychiatrist" or "you need to do some exercise" or the even more treacherous "just do a bit more" medical advice. But IMHO the last thing we need in Canada is a belated widespread introduction to PACE theory from a ME trusted source, the CIHR.

I didn't see the number of participants on the webinar screen but so far the damage has been restricted to these people. I can't see posting it and increasing the risk of damage to long haulers or ME patients' health. A case of damage control.

I can see now though that the perspective of many people on S4ME will be focused on Trisha Greenhalgh's actions in respect to her current role and influence in Britain. From this perspective it makes sense to have the webinar publicly available.

Also, like ScottTriGuy, Greenhalgh's response to his question about PEM caused a strong, visceral urge to press "Leave the Webinar" in me. The image of purposefully marching out of the meeting room flashed before me. I did resist and stayed to hear what came next though.

And lastly I have no illusions that my email had any effect on CIHR's actions.

Edited grammatically

 

I certainly do not think the webinar should be posted. I suspect all of what Greenhalgh said was ill-informed.

What I, and I suspect @Esther12 are asking for is for a transcript to be available in the context of a discussion such as here so that it can be established exactly what was said. It is difficult to make use of this sort of inappropriate behaviour by BPS supporters and friends but there are times when it can be quoted back, even if in summarised form. I think it was useful to able to point out the unethical attitude/behaviour of BPS practitioners in my paper in the Journal of Health psychology and in my NICE evidence, for instance.

We have a very real problem in the UK in that the NIHR seems to have been more or less deliberately set up to allow poor quality research to be carried out that gets answers that are politically expedient rather than valid. Primary Care academic departments have grown up to provide fodder for this programme and are generating a counter-culture that is flooding out valid research. Greenhalgh seems to be a cheerleader. Somehow that has to be countered. Having information on how these people behave seems to me important. As in other branches of politics you do not get anywhere by just ignoring people who are destroying the system.

 

Just a reminder of some past Tweets:
https://twitter.com/user/status/490783079531692032

https://twitter.com/user/status/285308661604163584

https://twitter.com/user/status/1218175199662747648

https://twitter.com/user/status/1218973449617649665

https://twitter.com/user/status/1218974648555253762


The following Tweets were deleted by TG and CG:




And a reminder of TG’s the BMJ article on patient-led research which singles out ME/CFS as a negative exception (my bold: https://blogs.bmj.com/bmj/2019/11/1...owards-an-institute-for-patient-led-research/):

Despite my concerns, I really hope that TG and others may be persuaded to acknowledge their mistakes, apologise and help to correct them.

I hope a transcript of the webinar will be released. I wrote to Karim Kahn but no reply as yet.

 

Trish's tightness to SW explains why she was against ME patients without provocation.

Thanks for sharing the extra evidence of her inappropriateness to be the physician figurehead of Long Covid patients.

Her beliefs are a threat to the safety of Long Covid patients globally.

 

It looks as if TG is from the same academic circle as the PACE authors and has more or less the same views.

A dangerous situation for long covid patients for various reasons. Admitting that PEM is real and the implications of that would also mean admitting that ME/CFS patients were badly misunderstood and mistreated.

 

Not sure if this addendum has been posted:
https://twitter.com/user/status/1349811922087129089

https://twitter.com/user/status/1349864674309902338

https://twitter.com/user/status/1349865713440346119


For those of you not aware, Peter White (not PDW) also had a good letter on long covid and ME in Nature recently: https://www.nature.com/articles/d41586-020-03136-0

 

Ugh (replacing string of expletives)

Just found out that in 2 weeks Trish is guest speaker at Canada's Occupational Medicine's Annual Scientific Meeting -- this year's focus COVID.

She's first speaker on day one.

http://www.omsoc.org/wp-content/uploads/2021/01/OMSOC-2021-Program-Final-Final-1.11.2021-1.pdf