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

[NelliePledge]

The morphing of GET into pacing, and vice versa, has been underway for some years.

I did CFS management course only 5 years ago. It had much content that on the face of itseems to be compatible with pacing. When I was going through it I though I was avoiding GET elements. On reflection there was an underlying assumption of increasing activity. Not taking account of the fact that attending a course for a morning a week was already a substantial increase in energy expenditure. I doubt very much that a fully symptom contingent pacing approach setting aside increasing activity is being adopted within CFS services . Pacing up is not the same thing as pacing yourself.

 

[Kitty]

Pacing up is not the same thing as pacing yourself.

'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.

 

[rvallee]

The pro-psych comments on that Guardian article read like a list of talking points. They don't engage on any technical stuff, it is all the standard deflection and misdirection about (alleged) anti-psych attitudes in ungrateful nasty patients, and how could anybody possible object to taking into account psychosocial factors.

Excuse me if I suspect they didn't all turn up by complete coincidence, in the natural course of a public debate. Just a bit too organised and scripted, IMHO.

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's M.E. Linda]

That looks like poor advice, to be honest - specifically the bit parroting CG53. It's too weak a warning to be much use.

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.

 

[It's M.E. Linda]

I did CFS management course only 5 years ago. It had much content that on the face of itseems to be compatible with pacing. When I was going through it I though I was avoiding GET elements. On reflection there was an underlying assumption of increasing activity. Not taking account of the fact that attending a course for a morning a week was already a substantial increase in energy expenditure. I doubt very much that a fully symptom contingent pacing approach setting aside increasing activity is being adopted within CFS services . Pacing up is not the same thing as pacing yourself.

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)

 

[Adrian]

I don't think folks out there are necessarily shitposting, or that there is some kind of "organised campaign" to put positive stories about CBT/GET out there. Those experiences are likely real, and there are probably more of them than we think. It's just that a lot of people keep quiet about getting well again because of the negative responses they get.

It doesn't mean they weren't really ill in the first place, or that they "never had CFS/ME" (I'll use it that way round because that's what many are diagnosed with). It just means that everyone's experience is different, and that we are still a very, very long way from working out what this illness is.

Unfortunately for us, many of the narratives have stuck - and the reason they have stuck is that provide seemingly valid explanations for many people. They fit with their experience, so that are taken as true. It's confirmation bias in action. And then it becomes a battle between whose "lived experience" is more valid. In a world where moral attitudes are mixed up with medicine, those who get well are always going to be taken more seriously than those who don't.

It is one of the reasons to stress the need for high quality science and proper evidence rather than individual anecdote. Although I tend to think that proper evidence is needed to demonstrate value and multiple anecdotes can demonstrate possibilities of harm (although not likelihoods). There will also be those who benefit from having someone (a therapist) to talk to - very different from recovery but that can simply be having someone take symptoms seriously and give practical advice rather than CBT things that the therapist is doing.

It does seem we have very little information about people who do really recover after a diagnosis of CFS/ME let alone the numbers who recover after ME (and how quickly and whether that makes a difference. I suspect there is quite a bit of misdiagnosis of ME including people who have early stages of severe acute illnesses and MS etc. In truth we know so little about this illness there is a complete lack of reliable data.

I think there is another thing that people who recover just get on with their lives and don't talk about it.

I think it is a reasonable hypothesis that those reporting 'recovery' via psycho-behavioural means didn't have ME in the first place.

If say x% of people with ME symptoms after a virus recover in the first year there is quite a good chance that say y% of them will be referred to CF clinics and have CBT/GET as treatments. Hence there could be quite a number who seem to recover given the treatment. That could leave quite a high correlation between referals/treatment and recovery (depending on values of x and y) without any need for causation and no difference from a control group hence not showing in trials. There is of course a question as to whether someone with ME symptoms after a virus has ME or some similar post viral thing (i.e. is the mechanism the same or just the symptoms) but as we know so little that is speculation.

 

[DigitalDrifter]

It doesn't mean they weren't really ill in the first place, or that they "never had CFS/ME" (I'll use it that way round because that's what many are diagnosed with).

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?

To me it seems likely that lots of people within 'ME' have different things wrong with them but at the moment it's difficult to say what meaningful subgroups there are.

It could be that those able to recover via psycho-behavioural means are a distinct sub-group,

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.

 

[Esther12]

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?

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:

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.

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.

 

[Mithriel]

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.

 

[Kalliope]

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!

 

[Ariel]

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.

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.

 

[Sean]

Because even the PACE authors themselves acknowledge that it is very difficult to measure.

It's possible, but probably not helpful to say that. It looks too much like denialism. It also depends how 'recovery' is defined (as well we know). From what I have seen, most of those reporting 'recovery' also seem to report they are back to 90% - so not 'fully recovered'. But if calling themselves 'recovered' helps them in some way, who are we to argue?

Leaving aside questions of correlation v. causation (and direction of any causation), primary v. secondary features, and confounding effects on subjective measures, all serious enough on their own:

Within the limits of their statistical power the psychosocial studies on ME have failed to report any clear sustained practical benefit, not even on heavily primed subjective outcomes.

So either the number of patients getting any genuine benefit (let alone to the point of full or near-full recovery) from psychosocial treatments is too small to detect at that level, and hence those treatments are at best irrelevant to almost all patients. Or there just isn't any genuine benefit for ME patients from that approach, and those reporting good outcomes either don't have ME or improved/recovered naturally independent of any treatment.

If there are two (or more) distinctly different groups of patients being mixed together under the ME label, and at least one of them genuinely benefits from psychosocial treatments, then given sufficient stats power surely we should see some kind of modal distribution in the results. But IIRC we don't see that either. At least not in the data we have been allowed to see.

 

[Andy]

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

https://youtu.be/lQpvsgiCZno

 

[Andy]

 

[Sly Saint]

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

 

[InitialConditions]

 

[Jonathan Edwards]

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

So?

 

[Sean]

https://twitter.com/profmsharpe/status/1382975815219089408

"...the findings of the PACE trial that gradual rehabilitation can help patients with Chronic Fatigue Syndrome"

So, given up on the 'recovery' claim?

Recovery from chronic fatigue syndrome after treatments given in the PACE trial.
Psychological Medicine 2013; 43:2227-35.

"The percentages (number/total) meeting trial criteria for recovery were 22% (32/143) after CBT, 22% (32/143) after GET,...

This study confirms that recovery from CFS is possible, and that CBT and GET are the therapies most likely to lead to recovery."​

 

[InitialConditions]

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.

 

[Sly Saint]

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