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

'Pacing up' sounds like a contradiction in terms!

Gradually building up activity levels after an injury makes complete sense, but you can't apply it to ME because there are always snakes as well as ladders. It demonstrates that either the practitioner or the patient is denying the diagnosis.

 

Probably a bit of that but seriously the Venn diagram of people who believe in magical psychology BPS stuff and Internet trolls, people who rant and whine against vaccines, climate change, lockdowns and "the real virus is fear" is a near perfect circle. BPS fanatics say the same things as your average "dur it's the same as chronic lyme just whiny shirkers", they just frame it and phrase it differently but the underlying opinions and beliefs are the exact same.

And speaking of which, a number of the BPS gang have made their opinions public about such things as whether the pandemic were serious, or whether masks were useful, and a bunch of other things like whether kids would be affected or spreading. So far their track record is basically a perfect mirror of reality, as best as I can remember (which admittedly is poorly). They are genuine failure whisperers, a gauge of the opposite of reality.

 

It certainly isn’t perfect - it was a big thing to be announced in July 2020, for people left with debilitating symptoms who were still being told to exercise. It is even better than the current ‘working guidelines on LongCovid’ tbh, where no warning is given at all. The reference to CG53 with the addition of the proposed changes to that Guideline, is possibly better than nothing at all.

 

There was never any recognition at all about “real life”.

The clinic seemed to think that every day was identical, no allowances were factored in for
-the day’s symptoms
-family life
-personal circumstances
-what arrived in the post (eg DWP)

I found it was probably 10-11 months after finishing the course, that the symptoms improved a little (less driving/homework)

 

I have to disagree. I think if we let every Tom, Dick, or Harry in to the diagnosis of ME it dilutes and distorts what it means to have ME. It convinces people that ME is a mental illness. How would cancer patients feel if we let anybody who was fatigued in to their club and convinced the general public that cancer was over come by positive thinking and exercise alone?

Agreed that ME represents different subgroups but ME should be reserved for those who get worse from exercise not better. The confusion can seriously harm those with ME as it has in my case, I'm now 100% bed bound thanks to people not understanding.

 

But at the moment we're really lacking good evidence on how to accurately identify which patients have similar problems that will respond in similar ways. eg:

What about patients who found exercise was harmful, but then found forms of exercise that were beneficial? Currently we don't have any real way of identifying who will be harmed or helped other than just leaving it to patients to see whatever they find most useful. Of course this is all made massively more difficult by the problems around things like PACE, and people making misleading claims about exercises as a treatment for ME.

 

The description of ME has been widened and widened. When I was first diagnosed it was thought to have a prevalence of about 0.5%, now we have Crawley saying it is about 2.4%. Do they really all have the same disease?

Wessely's stated aim was to make ME disappear. It has been lost within a category of fatiguing illnesses thanks to him and his colleagues.

 

Trial by Error by David Tuller: The World According to Sharpe

Quote:
Poor Professor Michael Sharpe. The distinguished psychiatrist from Oxford University has a dilemma. His science sucks big-time, and he can’t defend it effectively with standard argumentation. He does not seem to grasp why people have called the PACE trial fraudulent, so he lashes out, trying to bully and bluff his way through the mess by accusing critics of harassment. In doing so, he has a tendency to score own goals—such as insulting a member of Parliament for engaging in behavior “not becoming” her post. (In the UK, these are apparently fighting words when you’re talking about a member of Parliament. The behavior in question involved criticizing the PACE trial.)

And now Professor Sharpe has stumbled into a major pissing match with Guardian columnist George Monbiot. Hey, grab some beers and pull up the chairs! This could be fun!

 

Somewhat off topic but does this include the govt science advisors re: sympathy with BPS agenda? The CMO has made some fairly dubious comments about risk to kids. I am unfamiliar with the orientation of the individuals involved. Obviously there has been a decision not to speak about Long Covid at all.
This does not help matters, as there is a vacuum of information and messaging in which psychologizing nonsense like that under discussion in this incident can spread.

 

George Monbiot on Long Covid, Chronic Fatigue [sic] & Misogyny

Code:

https://youtu.be/lQpvsgiCZno

https://www.youtube.com/watch?v=lQpvsgiCZno

 

https://twitter.com/user/status/1382982200916852738

 

not sure about the 'Terminator', Sarah Connors clip being used
eta: in the George Monbiot video

 

https://twitter.com/user/status/1382997063974203392

 

By the way the draft NICE evidence review is not accepted by those with a vested interest in not liking it.

So?

 

I think it's telling that Sharpe is focusing on the evidence review in this tweet, rather than the recommendations per se. I worry that this is their way in; the basis of any challenge to the recommendations playing out right now behind closed doors.

 

Maybe George would be interested in Trudie Chalders talk she did a couple of years ago:
"

So we found then that CBT and graded Exercise therapy were more effective than Specialist Medical Care or Adaptive Pacing therapy . There was no difference between APT and specialist medical care,.

The effectiveness was moderate so it doesn’t get everybody better. The effect was similar however we defined Chronic fatigue syndrome. So whatever operational criteria we used for defining the syndrome the effects were the same. The treatments we found were safe given as described in the manuals and they are all downloadable from the website. And the bottom line really was that pushing the limits was better than staying within the limits as one would do with Adaptive Pacing therapy.


So you’d think that this would be good news.

[gasps from audience]


But these were some of the reactions of some of the ME groups.


“When is the Lancet going to retract this ?? study”

“There are deep problems with the credibility of the trial”

“We find the trial results extremely worrying”


And this is a classic

“That the trial shows that the therapies are safe and effective is hugely damaging” "

"

So in terms of the mechanisms of change then going back to the PACE trial, we were wanting to know well what was it that needed to change in order to bring about a change in the outcome.

And if you think back to our model which was the fear avoidance model we were specifically interested in whether those beliefs were bringing about a change in the outcome."

of course she doesn't mention that their solution was to lower the threshold for 'recovery'.

transcript here:
https://www.s4me.info/threads/13-ma...journey-over-30-years.5576/page-3#post-152193

recording here:
https://www.s4me.info/threads/13-ma...journey-over-30-years.5576/page-2#post-150857