News about Long Covid including its relationship to ME/CFS 2020 to 2021

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Trish said:
To be fair her article about long Covid doesnt promote GET. It talks about pacing and gradual cautious return to exercise and stopping if it makes you worse. I have no idea what she said in her talk.
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Well, my recollection is she said that she thought PACE was good (this may not have been the word she used but if not it's close) research. Next she made a comment about a prominent physician with long-COVID who initially was hesitant to exercise and wasn't recovering but then began to exercise and recovered.

Shortly after she was asked if she was familiar with the Workwell Foundation and their CPET research. She answered that no she wasn't and dismissed the comment with (I'll paraphrase from my memory) there are lots of things like that out there.

I don't think there was any ambiguity or room for misinterpretation in her comments.

These comments were all in response to questions so it's likely she hadn't planned on including them in the webinar. I'd have to question how you can do a presentation on long COVID without mentioning PEM or similarities with ME though?
 
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Tia said:
I think she very recently lost her mum to covid and so that may be why she is blocking rather than engaging.
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She's been threatening to block anyone who disagrees with her on twitter ever since she got involved with long-covid.

I also recall her reminding people that she's doing her long-covid work out of the goodness of her heart and that she will walk away from it if she gets criticised too much.

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It looks like she has the same definition of 'abuse' as the PACE authors.
 
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Helene said:
Well, my recollection is she said that she thought PACE was good (this may not have been the word she used but if not it's close) research. Next she made a comment about a prominent physician with long-COVID who initially was hesitant to exercise and wasn't recovering but then began to exercise and recovered.

Shortly after she was asked if she was familiar with the Workwell Foundation and their CPET research. She answered that no she wasn't and dismissed the comment with (I'll paraphrase from my memory) there are lots of things like that out there.

I don't think there was any ambiguity or room for misinterpretation in her comments.

These comments were all in response to questions so it's likely she hadn't planned on including them in the webinar. I'd have to question how you can do a presentation on long COVID without mentioning PEM or similarities with ME though?
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Thanks, @Helene, I does sound like she really has no idea what she's talking about with 'fatigue' let alone ME/CFS. As you suggest, how can anyone be an 'expert' on long Covid without even attempting to learn about ME/CFS and PEM, and listening to patients with both. Anecodes from a few of her friends are not evidence.
 
I suspect that TG believes all the things Wessely has told her about patients. A small group of vocal militants with false and unhelpful beliefs about the illess, like the existence of PEM. PACE a very good trial, CBT/GET safe and effective, it's just again those nasty patients trying to tear it down for no good reason.

From this point of view, ME patients would be a harmful influence on LC patients.
 
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The COVID Tracking Project - The "Good" Metric Is Pretty Bad: Why It's Hard to Count the People Who Have Recovered from COVID-19

In November, The Covid Tracking Project stopped reporting recovery figures for the United States as a whole, and today we are also removing many, though not all, of the state-level “recovered” values from our website.

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... many people who have had COVID-19 and have lived to tell the tale—and who are often categorized as “recovered”—don’t consider themselves to have actually recovered. COVID-19 can have many long-term health consequences, and none of the definitions for counting people who have “recovered” from COVID-19 account for latent or ongoing health issues that can be caused by COVID-19.

ETA: There's also an article in the Atlantic

 
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from the debate
Debbie Abrahams
I am pleased at the speed with which NICE has brought forward its guidelines for managing long covid. I particularly like the recommended holistic healthcare approach when assessing patients with symptoms between four weeks and 12 weeks, and after 12 weeks, with the emphasis on empathy and acknowledging the impact that the symptoms may be having on the patient’s day-to-day life, including their ability to work. However, I was surprised that there was no reference to immunology or immune therapies. I hope that we have learned from the mistakes made in how we prevent, treat and care for people suffering with chronic fatigue syndrome, also known as ME, and post-viral syndrome.
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https://www.theyworkforyou.com/debates/?id=2021-01-14a.549.1&s=Chronic+Fatigue+Syndrome#g558.0
 
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Helene said:
Well, my recollection is she said that she thought PACE was good (this may not have been the word she used but if not it's close) research. Next she made a comment about a prominent physician with long-COVID who initially was hesitant to exercise and wasn't recovering but then began to exercise and recovered.

Shortly after she was asked if she was familiar with the Workwell Foundation and their CPET research. She answered that no she wasn't and dismissed the comment with (I'll paraphrase from my memory) there are lots of things like that out there.

I don't think there was any ambiguity or room for misinterpretation in her comments.

These comments were all in response to questions so it's likely she hadn't planned on including them in the webinar. I'd have to question how you can do a presentation on long COVID without mentioning PEM or similarities with ME though?
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I'm getting the picture that she thought the talk was entirely on LC, despite ME being in the title. Either they did not communicate to her or she explicitly intended not to talk about any of it, which given the title is really odd.

Anyway at least this is something that $1.15B can crush easily so whatever, let's move on. Deniers will deny, it's what they do. It's sad that she is involved in LC but this was probably going to happen no matter what we do. There are billions in wasted spending and thousands on careers hinged on maintaining the denial, self-preservation is a powerful force.
 
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