David Tuller: Trial By Error: Professor Sharpe’s Pre-Hearing Briefing for Monaghan

[large donner]

The argument that GET is only harmful if carried out by the wrong person or in the wrong way goes back to the collaboration between the PACE doctors and AFME.

Here's a link to a letter in the BMJ co-authored by Prof Sharpe and Sir Peter Spencer (who was then the new CEO of AFME) in 2007.

https://www.bmj.com/content/335/7617/411

They tried to explain away patient surveys in that way

I'm sorry that I don't have a link to the whole paper

Smoking is only dangerous when the wrong shops administer it, its safe and effective in our trials.

 

[TiredSam]

It's also interesting that the briefing was not signed by the other PACE authors, just purportedly sent in their name.

Of course it's entirely possible that Turdie Chalder said "it's ok Michael, you don't have to write my name, just write the PACE authors, that'll be fine, really", assuming that at least he'd be able to spell PACE properly.

 

[Invisible Woman]

Turdie Chalder

That made me laugh hard enough to induce PEM!

 

[Arnie Pye]

The argument that GET is only harmful if carried out by the wrong person or in the wrong way goes back to the collaboration between the PACE doctors and AFME.

Here's a link to a letter in the BMJ co-authored by Prof Sharpe and Sir Peter Spencer (who was then the new CEO of AFME) in 2007.

https://www.bmj.com/content/335/7617/411

They tried to explain away patient surveys in that way

I'm sorry that I don't have a link to the whole paper

You can find it here on pages 5 and 6 : https://sci-hub.tw/10.1136/bmj.39316.472361.80

 

[Tom Kindlon]

 

[JemPD]

It doesn't seem like a good proxy to me. If you look at the graph at the start, for example:
PF 15 and PF 40 seems to have the same range of values on 6MWT from 150 to 500 metres, with a fairly even spread over that range.
I have no idea how anyone with such a low SF-36 PF score as 15 can walk 500 metres in 6 minutes.
What this suggests to me is that, as @Graham showed in his splendid video, interpretation is everything with questionnaires, and easily shifted by persuasion.

Exactly. I couldnt walk 500mtrs in 6 days. It took me a while to understand the chart because of that.
My SF36 is 10-15 on a good day, & my maximum distance, at al,l (never mind in 6mins) is 46mtrs without collapsing. This is up & down the garden. And despite making the trip as often as possible & trying to increase it regularly, I just cant. And i dont try to increase because i think i 'should', but because i really REALLY want/need to, but it's no good. So how on earth someone who's ill enough to have a PF score of 10 or below can walk more than 100 mtrs is beyond me. Which, as you suggest Trish, makes rather a mockery of the SF 36... which we already knew anyway. The sooner the SF36 is scrapped for use in ME, the better.

 

[Woolie]

There is / there are, much and many, has and have, singular / plural, present perfect - all the classic mistakes Germans make when they start learning English. If I didn't know better I'd suspect ... oh no, better steer well clear of Godwin's Law.

The acid test:

When they want to say: "If I'd done my homework, I would have passed the test"
Do they say: "If I would have done my homework, I would have passed the test"

I've never known any native speaker of a Germanic language (other than English) to ever get this right. And that includes people who've been living in English speaking countries for many years and use it every day.

 

[LightHurtsME]

When they want to say: "If I'd done my homework, I would have passed the test"
Do they say: "If I would have done my homework, I would have passed the test"

How about "If I had done my homework, I would have passed the test."

 

[Woolie]

How about "If I had done my homework, I would have passed the test."

Same as mine, I think, uncontracted.

 

[TiredSam]

Perfect is "If I'd done my homework, I'd have passed the test" whilst knowing that the first 'd is for had and the second 'd is for would. And if they get that right I ask them "If you hadn't had pumpernickel for breakfast, what would you have had to have had?"

 

[TiredSam]

• It is most unfortunate that hostility to such treatments and associated misconceptions have led patient activist groups (by not patients in general) to reject these treatments and to seek to discredit the science supporting them.

Despite being poorly expressed, I think I have just realised what he is trying to say. Is the "(by not patients in general)" a claim that patient activist groups are being led by trouble-makers who are not genuine ME patients? If so, this is a new claim. So far being an ME sufferer has been a good enough reason to dismiss anything an academic, scientist or journalist might say about the PACE trial, but now not being an ME sufferer is a good reason to dismiss anything an "activist" might say.

So we now have the following:

So far all academics who are also ME sufferers have been dismissed as biased.
Now academics who are not ME sufferers can be dismissed as "not patient" activists.
And as for non-academics, with or without ME, they can obviously be dismissed as unworthy of notice.

Does that cover everyone? Has Michael Sharpe managed to find a category for absolutely everyone now, so that every critic can be dismissed, and everyone can be quite justifiably blocked from twitter?

 

[TiredSam]

And who are these non-patient activists who are trying to discredit science? How did they infiltrate us? And why? And does this get us off the hook now, or what?

 

[TiredSam]

And who are these non-patient activists who are trying to discredit science?

Sorry to keep posting, but I was just slicing my banana into my muesli when the penny finally dropped.

• It is most unfortunate that hostility to such treatments and associated misconceptions have led patient activist groups (by not patients in general) to reject these treatments and to seek to discredit the science supporting them.

@dave30th - that'll be you he's talking about. Congratulations, Michael Sharpe has invented a whole new category just for you. He already has one for @Tom Kindlon et al (biased ME sufferer), now we have "not patient activist" for those who don't have ME.

 

[Alvin]

to seek to discredit the science supporting them

You cannot tarnish a rusted blade Mr Sharpe...

 

[Hutan]

• It is most unfortunate that hostility to such treatments and associated misconceptions have led patient activist groups (by not patients in general) to reject these treatments and to seek to discredit the science supporting them.

I think what MS meant to say was '(but not patients in general)'. So it's those patient activist groups (including difficult people with ME (people like that well known rebel against society Charles Shepherd)) that have been rejecting treatments and making all the noise.

Whereas the 'patients in general' refers to the silent majority of patients who are deeply grateful that the BPS proponents have taken the trouble to quantify the patients' behavioural failings while offering up salvation with scientifically proven treatments such as GET and the Lightning Process.

 

[TiredSam]

I was wondering whether the "by" belonged to the "led" before it, as in "led by ...". Hard to tell what it means, we shouldn't have to work it out.

 

[arewenearlythereyet]

No wonder they summarise all these classifications of pointless people and activists into people with “unhelpful beliefs” it’s so complicated for them otherwise

In this instance I take it that an “unhelpful person” means anyone who disagrees with a random hypothesis generated by a superior being?

Perhaps we should just be strapped to a chair and called unhelpful until we are brainwashed by CBT to agree with the supreme being?

I guess those people who don’t respond to brainwashing (is it 92% or 80%?) can be lobotomised as having “very unhelpful beliefs”?

sorry I made up a new classification...I know it’s unbecoming of me as a lesser being but I’m making a bid for supreme overlord.

 

[dave30th]

I think what MS meant to say was '(but not by patients in general)'. So it's those patient activist groups (including difficult people with ME (people like that well known rebel against society Charles Shepherd)) that have been rejecting treatments and making all the noise.

That's how I read it--the "by" was a typo--it should have been "but." In other words, the patient activists reject it, but most patients are not activists and they accept the validity of the treatments.

 

[Trish]

That's how I read it--the "by" was a typo--it should have been "but." In other words, the patient activists reject it, but most patients are not activists and they accept the validity of the treatments.

In a sense he is probably right. Most patients, at least during the relatively short period they are having CBT or GET treatment probably do accept the validity of the treatment - especially if they are newly diagnosed and haven't researched it.

They trust doctors and therapists who tell them the treatments are proven to work. It is only later, when their symptoms don't go away, and they get worse if they try to go on increasing activity that the horrible reality hits and they realise they have been conned.

 

[chrisb]

This gives rise to the question whether all those who "accept" the treatment have given informed consent, or whether they are kept in the dark as to any potential risks, however small researchers and clinicians deem those risks to be.