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

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 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.

 

Because if you went and reanalysed Lancet publications in accordance with their respective statistical analysis plans, there’d be hardly anything left on the Lancet website after all the retractions.

 

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.

 

Uh, yes they did. Why lie about this? Oh, right, this is indefensible.

https://twitter.com/user/status/1382298002740633600

 

Nice to see George doing Ian Samples job for him

 

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.

 

Or people like Paul Garner with a very specific reaction.

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.

 

well if we're going to start gloating; the Swiss re presentation (in February) wasn't picked up by anyone until I posted it here:
https://www.s4me.info/threads/swiss-re-expert-forum-on-secondary-covid-19-impacts-feb-2021.19910/

 

here we go again; MS has tweeted this old chestnut

https://twitter.com/user/status/1382314430197796864

 

I do not use Twitter, but is it worth tweeting a link to the DeCode ME study with lots of on line support and patient involvement, saying research in ME has hardly stalled.

 

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.

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.

 

Seems to be a lack of imagination here.

 

As usual. The criticism of Monbiot's article focused on the substantial issues. Sharpe tweets ad hominem attacks that basically amount to: no one has the right to criticize me.

The "controversy" in a nutshell: millions of lives ruined vs. a few egomaniacs upset they can't just BS.

 

It's just a parody account now. He retweeted this just over a week ago

https://twitter.com/user/status/1379114096650518530

 

You are a star @Sly Saint

 

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.

 

Screenshot of one line put down from Monbiot