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

According to Garner-

Indeed information -scary or otherwise - can have a big impact on patients. It gives them the tools to best manage their condition.

 

How many patients recovered back to their previous full lives after this ‘gradual and supervised rehabilitation’? And should you call it rehabilitation if the patient does not recover.

 

And how long does the "recovery" last? What mechanisms are in place to determine if it is a "recovery" or merely a remission.

Given we are still locked down and under fairly tight restriction can we really measure whether many of these people have recovered fully? We won't know until they are back to their daily commute and dropping kids off here and there and making sure everyone has the appropriate clean clothes every morning etc., etc.

 

Sharpe's was just a letter though.

Wouldn't our dispositional states be affected by many of our states of belief? I can see the value of recognising the differences, but to me it also seems likely that these things affect one another and that there are times it will be appropriate to lump them together.

The labelling of different responses as being a result of 'hidden' stress, or something like that, may be problematic but that her hair fell out on hearing of her mothers death is, assuming this was not just a coincidence, surely related to matters that are widely viewed as falling within 'psychology'. Even if we were to assume that almost all psychology is rubbish, through our language there's still a shared understanding of what 'psychology' is intended to be examining and it would include matters relating to this and English words are largely defined by our shared understanding of their meaning. If you're shrinking what is considered as 'psychological' to the point where it doesn't include things like peoples relationships with others, their expectations of how life will continue, etc, then that's an unusual use of 'psychological' that I'd have thought is likely to confuse people.

I don't think this is right, but are you using 'psychological' to mean something that is genuinely understood by psychologists? I'm using it, and I think it's more widely understood as, matters that psychologists are interested in. In that sense, would you agree that health can be affected by psychological factors (even if you don't think that's a useful way of defining 'psychological')?

 

That's how I used to breath after physical exertion in the early days of my m.e. just couldn't catch my breath and I was super fit

 

I think it's because him and his chums have gotten away with outrageous behaviour before and have never been punished for it. It makes a person very sloppy.

 

Yes. I suspect this may be the norm for them when dealing with those outside the inner circle.

Those within the circle or who are deemed worthy of becoming members will be treated to a charm offensive.

 

Can someone remind me what the Medical Research Council and the Health Research Authority actually said?

Btw I was thinking. Is there no group legal action that can be taken against the authors of the PACE trial, by those who were on the trial and were harmed? Or if someone on behalf of them, did so? Because they wrote the paper and didn’t report harms, and there was no mechanism to do so.

Also, is there no other (legal or otherwise) way of getting PACE retracted - given all its flaws? the editors of the lancet don’t agree - but is there no way of making them do it regardless, given what’s actually in PACE?

I fear that as long as PACE (and other papers?) aren’t retracted, this is the kind of pushback and claims we will keep seeing.

This post has been copied and the discussion moved to this thread:
PACE trial and legal action. Discussion thread.

 

Garners comment on the article (copied from @Invisible Woman 's post at top of page)

Oh well then, best not let anyone know that cancer can kill you, that must surely make them more likely to die. Oh wait, no that was debunked...

 

If NICE truly concede that Harms have resulted, (they do have a caution on their website). why cannot the Duty of Candour be invoked?

THE DUTY OF CANDOUR is a statutory (legal) duty to be open and honest with patients (or 'service users'), or their families, when something goes wrong that appears to have caused or could lead to significant harm in the future.

https://www.cqc.org.uk/sites/default/files/Duty-of-Candour-2016-CQC-joint-branded.pdf

 

We could be looking at this the wrong way round of course. If Sharpe is simply exhibiting behaviour that is innate to him, and perhaps to his colleagues also, then that could explain a great deal about why PACE went the way it did, and all the shenanigans since. Maybe we are just seeing Sharpe for what he really is - totally immersed in his own beliefs, and blind confidence in his own invincibility.

 

When I was still working a significant proportion of my case load were people with neurodegenerative conditions and round about the time of diagnosis it was often a fight with family and with some medical staff to ensure the patient was adequately informed of the diagnosis. Often one reason given for this was that nothing could be done to treat the conditions so why upset the patient. Whereas the reverse was true, by not informing the patient often you were effectively excluding the patient from making use of what could be offered.

For example with MND (ALS) for the patient to make best use of available aids they needed to be installed before they were needed not after, but how do you effectively introduce an aid if the individual has no idea that they will need them. Environmental controls or computer based speech aids need to be set up and people need to learn how to use them, the patient should be in charge of deciding when to use them, but they only have that control if they have access to the equipment and know how to use it. People need to engage in a process of managing their condition from the start.

Similarly with swallowing issues you need warning of what can happen in advance to know when to thicken liquids, to know what food stuffs to avoid, when to liquidise solids and when to consider entral feeding. Not to plan ahead risks aspiration pneumonia and preventable early death.

This also applies to long Covid or ME. It may be harder for these conditions than say MND because they are much less predictable, but someone can only effectively manage their own activity levels if they understand concepts like PEM and orthostatic intolerance. This is as true for those who are lucky enough to improve as for those who do not. People also need to be able to include in their plans the possibility of not recovering or of subsequent remission.

Many years ago a friend fairly early on in her ME found she felt really well when on holiday on a Greek island. Right she thought, this is the solution, she sold up everything, cashed in her savings and resigned her job which enabled her to have a six month ‘holiday’. She felt wonderful and, after the 6 months, believed herself recovered. She returned to her home country to resume her life. She initially got temporary work, but after two weeks relapsed, with the cycle of PEM and crashes kicking in. She was never able to undertake paid work again. She was financially in a considerably worse position than before. Because she had resigned her permanent job she had lost all her work related sickness benefits and any pension rights. A six month investment in her health left her financially disadvantaged for the next forty years.

[corrected typos]

 

Brian Hughes shares an article he wrote in 2019 about the HRA report on the PACE trial. Useful with this reminder of the details, as it was mentioned in Sharpe's Guardian letter today.
The Science Bit: The HRA report does not exonerate the PACE trial, it merely confirms that its Research Ethics paperwork was in order

 

Yes. At the time, I never wrote a thorough rebuttal of why the HRA report said nothing about the substantive problems with PACE. It was essentially a whitewash.

 

It so complicated to write a thorough rebuttal for.

I think that one of the ways PACE has fought back is that so many people feel ground down by the process of responding seriously to stuff like this. It's difficult to stay motivated.

 

well this is definitely true. It's cult-like behavior, essentially, or like dogmatic ideological beliefs.

 

Maybe I should look at it again along with all the other things.

 

Don't know if this has been posted yet. (1) George Monbiot on Long Covid, Chronic Fatigue & Misogyny - YouTube

 

https://twitter.com/user/status/1383329152300851203