George Monbiot on ME/CFS, PACE, BPS and Long Covid

Esther12 said:
Some slight nervousness I have about this is that there are so many things about the pandemic and covid-19 infections that could lead to real fear/mental health problems/etc. Just because there's a history of these researchers making misleading or exaggerated claims about the importance of psychosocial factors causing post-viral symptoms in the past doesn't mean that they won't play a greater role this time (or that they played a role in PVFS in the past, but that research has just so far failed to find good evidence for this). I think that seeing how hard it has been to make progress even when we're 100% right makes me want to stay away from any area of uncertainty.
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On today's front page of the Guardian's website, before the Opinions section, this article appears: "Brain fog: how trauma, uncertainty and isolation have affected our minds and memory".

The concern that there could be a conflation of symptoms shared by chronic illnesses such as long Covid, ME/CFS, fibromyalgia etc, and what might be experienced by otherwise healthy people during the pandemic period because the same vague terms are used -- "brain fog", fatigue -- is certainly a real one.
 
Esther12 said:
Some slight nervousness I have about this is that there are so many things about the pandemic and covid-19 infections that could lead to real fear/mental health problems/etc. Just because there's a history of these researchers making misleading or exaggerated claims about the importance of psychosocial factors causing post-viral symptoms in the past doesn't mean that they won't play a greater role this time (or that they played a role in PVFS in the past, but that research has just so far failed to find good evidence for this). I think that seeing how hard it has been to make progress even when we're 100% right makes me want to stay away from any area of uncertainty.
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@Esther12 I think that's a useful note of caution. There may certainly be some people whose LC is anxiety related but it feels like Sharpe is too willing to make that assumption before the evidence is there.
 
Sasha said:
It seems like a major piece of news. I don't recall Sharpe being called out before in the mainstream media for his behaviour like this.
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I don't remember a single news report or interview with any of the BPS gang that was not friendly chit-chat or gushing over their claims uncritically. I dare say this may be the first time a journalist other than Tuller has actually did what journalists are supposed to do and asked actual questions.
 
Esther12 said:
Just because there's a history of these researchers making misleading or exaggerated claims about the importance of psychosocial factors causing post-viral symptoms in the past doesn't mean that they won't play a greater role this time (or that they played a role in PVFS in the past, but that research has just so far failed to find good evidence for this).
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This is the very area that BPS proponents make maximum use of to gain traction. You take a grain of truth and then conflate.

It's undeniable that there are people who already suffer health anxiety or are at a trigger point in their lives to develop such problems who will be tipped over the edge by the pandemic.

Those people, who deserve compassion and good, effective treatment just like everyone else, will be in a minority though.

It is as much in their interests as it is in ours that their condition is not conflated with ours.

In the same way we cannot honestly say no one will experience health related anxiety or mental health problems due to the pandemic (& I don't believe anyone has said that) we cannot let them get away with claiming the majority of patients who end up with health problems due to the pandemic are suffering primarily from anxiety or mental health problems.

I think we can safely say if Sharpe and his cronies had actually been genuinely interested and observant during their work for the last 30+ years they should be able to tell the difference between the two cohorts. I don't think they should be given a free pass on seriously underperforming as researchers for the last 30 years by letting that slide.
 
Invisible Woman said:
It's undeniable that there are people who already suffer health anxiety or are at a trigger point in their lives to develop such problems who will be tipped over the edge by the pandemic.
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Or people like Paul Garner with a very specific reaction.

Invisible Woman said:
Those people, who deserve compassion and good, effective treatment just like everyone else, will be in a minority though.
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It certainly is a very difficult time for people suffering anxiety or health anxiety or any mental illness.

I think though that related but distinct phenomena may get confounded.

E.g., it would be interesting to know some facts about illness phenomena that actually are socially transmitted. Also how long these patients on average use to suffer from these conditions.

On the other hand, it seems likely that some people who suffer from an illness that isn't medically explained attribute the symptoms to other, better known illnesses.

Others maybe even mimic additional symptoms to fit into a category of an illness that is better acknowledged.

Both examples don't mean that there isn't an underlying medical condition, though.

And all these phenomena, including those that are only socially transmitted, may occur only temporary, perhaps mostly for no more than a couple of weeks or months?

I have no idea, just some unsubstanciated thoughts.

(Once again, apologies for just popping in -- happy that today, I have to rigorously pace my forum activity in order to digest good news instead of bad ones. -- big thank you to George Monbiot and everyone who contributed to this excellent piece.)

Edited for clarity.
 
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So I haven't read the posts on this forum/in this thread about the Monbiot article yet, only the article itself (and I'm going to read them later). But I just wanted to share that it's such an unbelievable story that in the past couple of hours I had been working on a summary of it in Hungarian - actually I also had to give a lot of background information on the situation and story of ME/CFS and the Wessely school in the UK and how their dominance affected even how other countries viewed the disease (Hungary too, although here mostly ME/CFS is simply just not talked about at all, as opposed to being some sort of battleground). The explanation (with proper links/references included) was so long that my article ended up much longer than Monbiot's, although it was supposed to be a shorter summary. :laugh:

This forum with its collection of links is so very useful in this respect and following threads here gives me really valuable insight to what to expect/how to prepare for what might lie ahead here too. So it's great that now I have this article that covers the Wessely school, the PACE trial and the above story with Sharpe and Monbiot just illustrates the situation wonderfully. Now I'll just pull it out anytime someone psychologizes long covid, it is so ridiculous.

And now I'll go and have the worst PEM of my life. :p
 
rvallee said:
Uh, yes they did. Why lie about this? Oh, right, this is indefensible.
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Its interesting as they clearly now realize they were on the wrong side (although really there response was one of inaction, refusing to say that PACE should publish data - as well as rewarding the brave researchers who stood up to the nasty vicious patients).

There we asked them is basically with all trials they queried many trials and got no answers so it is not action they took specifically and yet they try to twist it to make it appear they were on the side of science all along.
 
So, in reaction to George Monbiot's article highlighting how MS and Co eternally cry wolf about "activists" and "harassment", MS recirculates this old July 2019 article where he was crying wolf about activists and harassment. Neat.
 
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