Michael Sharpe skewered by @JohntheJack on Twitter

[MarcNotMark]

Always nice to see a house of cards collapsing, I have this video started just before they start shouting "stop, stop". Hmm, where have I heard that before?

 

[Amw66]

If we have a fear, it is a fear of exceeding the amount of activity we can do before suffering PEM. We don't fear exercise as such, just too much exercise (or activity). People with this fear, of exceeding their safe threshold of activity, could easily be recruited to do GET. All the researchers need say is 'we will start you off at a low safe level of activity and then, because we have superior knowledge, we will be able to help you push that safe threshold up'.

I know this is true because after the first horrendous year of my illness, when I was getting better but already knew that too much activity was a problem, I signed up for pilate classes, me and an instructor twice a week to gradually work on 'getting me fit again'. (It didn't work of course. The instructors periodically took measurements of my strength, hoping to show great gains, but I just got worse.)

Had we had " specialists" I am sure that my daughter would be even worse.
For a child to be able to regulate activity is a hard thing - to increase it with the premise of recovering would be easy - it's something that would give you your life back, who wouldn't.
If you are told pushing through is " normal" and you think you can return to school, socialising with friends, having days out... who wouldn't aged 5-18?
It is the will to recover that can be the most dangerous aspect in the early stages. It is not want of trying that has the deleterious effects, but trying too much.

 

[TiredSam]

There's nothing inconsistent in that. Here is a typical German ME sufferer before behavioural intervention:

Following this video and another one involving a sledge, patient X stopped posting to youtube. He has been added to the "cured" statistics.

 

[Jenny TipsforME]

My ME dyslexia is worse than my general cognitive ability so I’m struggling to follow the twitter threads, and can’t pretend to have even made an attempt to read this thread, but the Popper thing particularly interested me.

We did look at this when #MEAction UK were writing our NICE feedback last year. My partner (an academic) suggested we needed to go back to the principles of the philosophy of science, Karl Popper etc. I’d learnt about Popper and CBT at uni so could draft something (1h). We had editing help from George Berger, a philosopher.

Looking at the CBT Model overall (not the specific design of the PACE trial) we decided it was falsifiable and could already be refuted.






Of course the evidence to refute this model doesn’t come from the PACE trial itself, so this isn’t contradicting Mike Godwin, but it’s relevant.
To read more see 1h, p12 of http://www.meaction.net/wp-content/...nse-to-proposal-to-not-update-CG53.pdf#page12

 

[LightHurtsME]

Because people recruited for PACE knew they might have to do GET the cohort cannot be taken as representative because people who knew that exercise made them worse (or had heard so) would be likely not to have volunteered.

I can confirm that this has happened - I declined to be considered for taking part in PACE for this very reason. Twice.

 

[Barry]

I think there may be two different arguments that may get conflated.

The important one for me is this.

Because people recruited for PACE knew they might have to do GET the cohort cannot be taken as representative because people who knew that exercise made them worse (or had heard so) would be likely not to have volunteered. The risk/benefit analysis for GET would then be skewed to inappropriately positive. This means that the results cannot be extrapolated even to an Oxford defined population. Using Oxford would have been valid to a first approximation if applied to patients fitting Oxford if there was no recruitment bias of this sort but since it is more likely than not that there was bias then the problem with the recruitment is not the criteria used but the built in bias.

The more philosophical argument is that the BPS people appear to be setting up a trial that will not recruit people who fit the theoretical justification for CBT they claim to be basing their approach on. If the claim is that you need CBT with its mysterious 'cognitive strategies' to deal with a phobic fear of exercise then that's OK. But nobody actually thinks this is a phobia in that sense, I suspect. moreover, the rationale draws on stuff by Richard Edwards that says that when unfit people exercise they do actually feel awful. But the more one looks the more it is clear that none of this was really thought through.

And I guess the upshot of such selection bias is you recruit people more predisposed to answer the questionnaires 'favourably', from the investigators' perspective.

 

[Barry]

This type of avoidance has nothing to do with fear, and will not respond to graded exposure therapy.

Akin to GET trying to cure people 'suffering' from common sense.

 

[Jonathan Edwards]

I can confirm that this has happened - I declined to be considered for taking part in PACE for this very reason. Twice.

So now the truth is out!

 

[large donner]

I can confirm that this has happened - I declined to be considered for taking part in PACE for this very reason. Twice.

Remember they had trouble recruiting enough people at all initially and were given extra time to recruit people via GPs etc.

I cant remember the full details but I recall something about them possibly tweaking the definition to get more/enough patients recruited.

 

[Robert 1973]

Because people recruited for PACE knew they might have to do GET the cohort cannot be taken as representative because people who knew that exercise made them worse (or had heard so) would be likely not to have volunteered.

I’m sure this is true. Further to my previous comment, I would add that I would have been much more likely to volunteer in the earlier stages of my illness (year 1 or 2) than later on. It was clear early on that exertion made me worse but again and again I refused to accept/believe it. In complete contradiction to BPS views, despite then being quite severely disabled – I could not walk more than about 100 yards and certainly not on 2 consecutive days – I think I was in denial to some extent. With so little understood about what was wrong with me, I felt that if didn’t push myself I could not justify my inactivity. Back then I might have welcomed the opportunity to either improve or prove (to them and myself) that GET did not work for me.

After 26 years (including 7 years bedbound) I still find it hard not to push myself but it is something I have learnt from very long and painful experience. I still test where my limits are but I try not to exceed them. Consequently, there is no way that I would agree to GET now, in a trial or otherwise.

Returning to precision of language: I think exertion is a better term than exercise.

So 'push / crash' cycles would be a better description.

Absolutely.

But by even discussing this difference, we're being way more sophisticated that these PACE researchers ever got. This type of avoidance has nothing to do with fear, and will not respond to graded exposure therapy.

I’m actually a bit worried that you might be putting ideas into their heads. “Aha! Maybe that’s why our CBT/GET aren’t more effective. It’s not because their problems are physiological, it’s becasue they have a different sort of psychological problem.” Was that was Wessely was alluding to when he made the comment on Twitter about ME/CFS patients needing some extra unspecified type of OT input in order to get us back to work?

Random thought about rational v irrational fear avoidance. I’m not at all knowledgeable about the subject but I wonder to extent hydrophobia/rabies may be a pertinent analogy.

Yes, but that patients are harmed by GET tells us that even the patients that are harmed by GET are initially willing to believe that GET could help (or would at least not harm them).

Good point, but patients may also be coerced into treatment without believing. They may feel they have to try it and be willing to harm themselves in order to show that it doesn’t work.

It’s also interesting to contemplate what differences there may be between those who are neither helped nor harmed by GET and those who are harmed. Are the differences due to the way it is applied by the therapist, the underlying illness, or the decisions made by the patient about whether to keep pushing on? I suspect that many of those who are not harmed simply do not comply with the therapy.

 

[MSEsperanza]

Remember they had trouble recruiting enough people at all initially and were given extra time to recruit people via GPs etc.

I cant remember the full details but I recall something about them possibly tweaking the definition to get more/enough patients recruited.

Perhaps it is worth taking into account that there also were pwme who did the 2-day-CPET testing.

As others pointed out, most probably the mildly or newly affected pwme are more likely to have participated in PACE trials. Additionally, they also more likely have participated in the 2day-CPET testings.

In a strict sense, the Workwell Foundation in their later studies based on the 2 days CPET testing results, also investigated something slightly similar to GET -- with different premises, tools and conclusions though, foremost applying objective measures and controlling physical functions.

The most important difference between the PACE and the Workwell Foundation investigators is perhaps that the latter never generalized their premises and findings, instead warned that exercise could do harm in pwme, especially in the severely affected. They acknowledged that a representative trial would be unethical.

Edit: cross-posted with @Robert 1973

 

[Simone]

I know this seems pedantic but precision of language is important, as the PACE/BPS crowd so often pick up on it as a way to divert from the valid criticisms of their research. As far as I’m aware – and as Sharpe has pointed out on Twitter – the PACE authors do not refer to “false beliefs”. They refer to “unhelpful beliefs”. Of course, it is reasonable to infer that an unhelpful belief which needs to be challenged by a therapist in order to effect recovery is false. But they don’t use the term, as far as I’m aware.

I agree that language is important, and the PACE authors do keep picking us up on this, in a sort of “gotcha”. I’ve been wondering where the phrase “false illness beliefs” comes from? Sharpe is claiming the PACE authors didn’t use it, so who did?

 

[Amw66]

I’m sure this is true. Further to my previous comment, I would add that I would have been much more likely to volunteer in the earlier stages of my illness (year 1 or 2) than later on. It was clear early on that exertion made me worse but again and again I refused to accept/believe it. In complete contradiction to BPS views, despite then being quite severely disabled – I could not walk more than about 100 yards and certainly not on 2 consecutive days – I think I was in denial to some extent. With so little understood about what was wrong with me, I felt that if didn’t push myself I could not justify my inactivity. Back then I might have welcomed the opportunity to either improve or prove (to them and myself) that GET did not work for me.

After 26 years (including 7 years bedbound) I still find it hard not to push myself but it is something I have learnt from very long and painful experience. I still test where my limits are but I try not to exceed them. Consequently, there is no way that I would agree to GET now, in a trial or otherwise.

Returning to precision of language: I think exertion is a better term than exercise.


Absolutely.


I’m actually a bit worried that you might be putting ideas into their heads. “Aha! Maybe that’s why our CBT/GET aren’t more effective. It’s not because their problems are physiological, it’s becasue they have a different sort of psychological problem.” Was that was Wessely was alluding to when he made the comment on Twitter about ME/CFS patients needing some extra unspecified type of OT input in order to get us back to work?

Random thought about rational v irrational fear avoidance. I’m not at all knowledgeable about the subject but I wonder to extent hydrophobia/rabies may be a pertinent analogy.



Good point, but patients may also be coerced into treatment without believing. They may feel they have to try it and be willing to harm themselves in order to show that it doesn’t work.

It’s also interesting to contemplate what differences there may be between those who are neither helped nor harmed by GET and those who are harmed. Are the differences due to the way it is applied by the therapist, the underlying illness, or the decisions made by the patient about whether to keep pushing on? I suspect that it many of those who are not harmed simply do not comply with the therapy.

There may be some whose insurance will not pay out unless they try it ...

 

[chrisb]

It’s not because their problems are physiological, it’s becasue they have a different sort of psychological problem.” Was that was Wessely was alluding to when he made the comment on Twitter about ME/CFS patients needing some extra unspecified type of OT input in order to get us back to work?

On this point there is an interesting comment by Sharpe during the discussion which followed the presentation of Edwards' paper at the CIBA conference in 1992:

"I would suggest that there may be other patient characteristics that are more useful than symptoms in predicting outcome and response to treatment."

I have no idea what he meant, I am not sure that he did. It would be helpful if he could clarify the point.

Muscle histopathology and physiology in chronic fatigue syndrome. Edwarrds, Gibson, Clague and Helliwell
1993 Chronic fatigue syndrome. Wiley, Chichester (Ciba Foundation Symposium 173) p102-131 in Discussion at p126

 

[Trish]

"I would suggest that there may be other patient characteristics that are more useful than symptoms in predicting outcome and response to treatment."

Susceptibility to brainwashing perhaps? So you fill in questionnaires to say you've recovered when objectively you haven't.

 

[Lucibee]

I agree that language is important, and the PACE authors do keep picking us up on this, in a sort of “gotcha”. I’ve been wondering where the phrase “false illness beliefs” comes from? Sharpe is claiming the PACE authors didn’t use it, so who did?

I tried to pin him down on what phrase he would prefer... (thread)

 

[Indigophoton]

"I would suggest that there may be other patient characteristics that are more useful than symptoms in predicting outcome and response to treatment."

I'm guessing he meant *yawn* childhood trauma, membership of support groups, perfectionism...

 

[Indigophoton]

 

[NelliePledge]

There may be some whose insurance will not pay out unless they try it ...

and employers who have an expectation that you will avail yourself of available NHS 'treatment' while off work sick, hence I did sausage machine IAPT CBT and CFS clinic 'management programme' (PACE-lite)

 

[Sarah]

employers who have an expectation that you will avail yourself of available NHS 'treatment' while off work sick, hence I did sausage machine IAPT CBT and CFS clinic 'management programme' (PACE-lite)

Did your employer specifically ask you to have yourself referred to an IAPT service?