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Response to the editorial by Dr Geraghty by the PACE Trial team

user9876

Senior Member
Messages
4,556
In this ME charity member survey of National Health Service (NHS) clinics, 85 per cent of those surveyed wanted the charity to campaign to save these services and 92 per cent wanted more such services; 46 per cent had received cognitive behaviour therapy (CBT) and 65 per cent thought that CBT should be made available; 31 per cent had received graded exercise therapy (GET) and 48 per cent thought it should be made available (Action for ME, 2011).

The only reference I could find here was this one
https://www.actionforme.org.uk/uploads/pdfs/you-say-save-our-services.pdf

I suspect they have cherry picked which survey they quote. They don't quote the MEA or AfME surveys that report harm after GET.

But their claim '92 per cent wanted more such services'

The question didn't ask about more such services but:
Question two asked if you think Action for M.E. should campaign for
more services across the UK, so that everyone who wants can have access
to them. The overwhelming majority, 91.9% (893 people) said yes, 4.2% (41
people) said no, 3.9% (38 people) said don’t know and five people
skipped the question. One respondent commented: “Yes, we all are entitled to NHS
treatment, so services should be available to all, including us that have M.E.”

Which is quite ambiguous but suggests that people with ME want some NHS support it is not asking about any particular type of service.

In 2011 some patients were perhaps saying they wanted treatments that were being heavily pushed as if they worked. That isn't surprising maybe that only 31% of patients wanted GET despite being pushed in the press and by NICE is a strong message. CBT is more complex because people may want therapies to help cope which is sometimes what CBT is sold as rather than the PACE type which claims recovery by altering false sickness beliefs. But again patients want heavily promoted therapies. Would would the 2017 survey say now we have seen the PACE claims collapse.
 
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13,774
I've got to add more on White complaining about FOIs and presenting them as harassment:

"A lot of people have left the field because of this," says an
exasperated Professor Peter White, a psychiatrist at Queen Mary,
University of London, and one of the world's leading researchers in
the treatment of ME. "I spend a quarter of my time dealing with Fol
requests, complaints and other harassment, rather than doing more
research and treating patients."

https://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1305a&L=co-cure&F=&S=&P=10059

They are inaccurate here. In there paper they added additional clauses to their caseness definition so that there are a number of people who are rated as still meeting the Oxford criteria by doctors by are not in their recovery figures due to the sf36 or CFQ scores.

That's what they mean by 'a trial definition of CFS' though - it's a manipulative use of language, but it's a pain to explain it all clearly. A major advantage they've got in venues where there's a limited word count is that they shamelessly create these terms that take a lot of time to fully unpick. Then if something isn't fully explained, PACE get to come back and complain about their critics being misleading.
 

user9876

Senior Member
Messages
4,556
That's what they mean by 'a trial definition of CFS' though - it's a manipulative use of language, but it's a pain to explain it all clearly. A major advantage they've got in venues where there's a limited word count is that they shamelessly create these terms that take a lot of time to fully unpick. Then if something isn't fully explained, PACE get to come back and complain about their critics being misleading.

Given there language lacks precision I think any possible reasonable interpretation is valid. Hence I assume they mean the Oxford criteria. I see your point that they could mean the Oxford criteria along with the trial entry criteria but that is not clear in their language and since they claim to be scientists it is up to them to use precision I would by default take the most general interpretation of their language.

If they wish to complain they need to answer the question as to why they were vague. When I read it I did read it as the Oxford criteria rather than their modified version that first gets mentioned in the recovery paper hence my comment.
 
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13,774
Given there language lacks precision I think any possible reasonable interpretation is valid. Hence I assume they mean the Oxford criteria. I see your point that they could mean the Oxford criteria along with the trial entry criteria but that is not clear in their language and since they claim to be scientists it is up to them to use precision I would by default take the most general interpretation of their language.

If they wish to complain they need to answer the question as to why they were vague. When I read it I did read it as the Oxford criteria rather than their modified version that first gets mentioned in the recovery paper hence my comment.

A lot of people tend t just give the 'authority figures' the benefit of the doubt though. Maybe we've now reached a point when PACE are not being given the benefit of the doubt in this way? They've been successful in using that sort of ambiguity against us in the past though.
 
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15,786
Did the article really need all those contributing authors? Especially when it boils down to "the only correct interpretation of PACE is ours"?
It's a rather pathetic appeal to authority, a type of logical fallacy. If more people are saying something, it must be true! :rolleyes:

So 2 people, the ones crossed out, are not co-authors of the reply to Dr Geraghty.
Dissension in the ranks? Or a couple who just couldn't be arsed?

Yes I take it as a statement from all the authors that they are happy to continue to mislead and lie to patients and other medical professionals. Given the current debate there is no excuse for them not understanding the issues.
Having read Bavinton's tripe on the CFS TalkHealth clinic a couple years ago, I wouldn't be the least bit surprised if she doesn't understand the issues. She really seemed to believe that there's evidence of GET increasing activity levels :jaw-drop: There's probably others on the list who simply believe what they are told by the authority figures who are higher up on the ladder.
 
Messages
2,391
Location
UK
But their claim '92 per cent wanted more such services'
...
The question didn't ask about more such services but:
Which is quite ambiguous but suggests that people with ME want some NHS support it is not asking about any particular type of service.
Those "alternative facts" again. Such a simple word-sleight, but skews the truth hugely. If this stuff was advertising, they could be taken to court (many times over) for deliberately misleading ads. But because of who they are, and the positions they hold, they seem to be above the law.
 

Keith Geraghty

Senior Member
Messages
491
Once more unto the brech dear friends - let battle commence.

I have had a very productive day writing up a 7 page reply. I will spend some time refining and ensuring that my rebuttal is facts based.

Yes Jonathan, their claim that my editorial or my work may discourage participants entering into trials is a low blow - its rather shameful.

I have just read the Price et al review and they may be right that Price and PACE mirror - given Price find no evidence for objective improvements in physical health and no consistent evidence for long-term benefits.

The AfME survey data they mention fails to mention that 90% of the same sample suggested the wanted Pacing advice/treatment. They fail to mention the MEA survey that shows that over 90% of respondents felt GET did not improve their conddition an over 70% stated their symptoms worsened.

There are so many facts to include in the rebuttal it will take me some time deciding on which ones to prioritise.

It is very clear that the PACE authors felt they'd have the final word - hence the arrogant tone and long list of authors - thankfully science allows critics a voice also.
 

user9876

Senior Member
Messages
4,556
Yes Jonathan, their claim that my editorial or my work may discourage participants entering into trials is a low blow - its rather shameful.

Science of course thrives on criticism. That is how things improve. But I would make the point that you hope it will cause people to up their game and do research to an acceptable standard. Its not just their research standard that should be criticized but also the way they spin results in the press.

There are so many facts to include in the rebuttal it will take me some time deciding on which ones to prioritise.

It is very clear that the PACE authors felt they'd have the final word - hence the arrogant tone and long list of authors - thankfully science allows critics a voice also.

Yet they fail to address the core issues of the criticism of PACE yet again. But then I don't see how they can defend them.
 
Messages
83
The authors are again pointing towards their 'FAQ' as some sort of definitive guide. Perhaps it's about time that we collated a true FAQ/core set of evidenced criticisms in an easy to access format to highlight and demonstrate their lack of actually addressing the issues.
 

Snow Leopard

Hibernating
Messages
5,902
Location
South Australia
That is of course ignoring the fact that these are not measures of ability but reports. So their claim should be that there is a moderate improvement in reports from patients for techniques that tell patients they will recover if they ignore symptoms and see them as temporary. Put in those terms it is not a good claim especially as it is not supported by the objective measures they did make.

Exactly. The map is not the terrain. A finger pointing to the sun is not the sun itself.

Unblinded trials that rely entirely on questionnaires and self reports are always going to be questionable.

But it always comes back to the above (self-reports are so easily biased in unblinded trials). I just don't understand why they didn't try to do it properly? It's not like they're inexperienced. It's just so sloppy. I mean it looks like they've tried to skew the trial towards their favored result in as many ways as they could get away with.

There are so many facts to include in the rebuttal it will take me some time deciding on which ones to prioritise.

Some advice: Try to make it as concise as possible, address the major points, ignore the nitpicky details. Try to avoid the too long;didn't read effect.
 
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Messages
2,391
Location
UK
I will spend some time refining and ensuring that my rebuttal is facts based.
Absolutely. For people whom honesty and truth seem alien concepts, presenting them with the truth, the whole truth and nothing but the truth, in open view for all to see, is often their undoing. Our two big advantages are: 1) We never need to tell anything other than the factually-provable truth (it is our biggest ally), and 2) We are able to make everything openly visible to all.
 
Messages
2,391
Location
UK
I just don't understand why they didn't try to do it properly?
I think it depends what their own personal objectives were. If it were to do good science, for the ultimate benefit of patients, then PACE would have inevitably have turned out very different/better. Even publishing that the results were inconclusive would have been good altruistic science; success often relies on identifying the blind alleys along the way. But to me the inevitable conclusion is they worked (and still do) to their own (badly) hidden agenda, with personal gain, career advancement, etc. as key motivators.
 

KME

Messages
91
Location
Ireland
Once more unto the brech dear friends - let battle commence.

I have had a very productive day writing up a 7 page reply. I will spend some time refining and ensuring that my rebuttal is facts based.

Yes Jonathan, their claim that my editorial or my work may discourage participants entering into trials is a low blow - its rather shameful.

I have just read the Price et al review and they may be right that Price and PACE mirror - given Price find no evidence for objective improvements in physical health and no consistent evidence for long-term benefits.

The AfME survey data they mention fails to mention that 90% of the same sample suggested the wanted Pacing advice/treatment. Thehttp://forums.phoenixrising.me/index.php?threads/response-to-the-editorial-by-dr-geraghty-by-the-pace-trial-team.48915/page-2y fail to mention the MEA survey that shows that over 90% of respondents felt GET did not improve their conddition an over 70% stated their symptoms worsened.

There are so many facts to include in the rebuttal it will take me some time deciding on which ones to prioritise.

It is very clear that the PACE authors felt they'd have the final word - hence the arrogant tone and long list of authors - thankfully science allows critics a voice also.

Thank you, Keith, for what you’re doing. Delighted to hear that the MEA survey will feature in your response, since those respondents had actually completed GET/CBT, as opposed to the survey they quote, where according to their own response to your editorial, under point 2, only 31% of respondents had completed GET and 46% had completed CBT. When you haven’t done GET or CBT yet, and you’re told they’re effective, of course you say you want access. What matters, though, is whether people who have actually done GET and CBT say they work or not, and whether they’re safe or not, and that’s where the MEA survey results trounce PACE.

I find the PACE authors' reports of what patients want manipulative, but effective if unchallenged, so I think it's particularly important to counter misleading claims of what patients report about GET and CBT.

I don’t expect to ever change White/Chalder/Sharpe’s minds on GET/CBT, but there’s great potential to give other readers of this exchange access to material they would otherwise not have come across. I hope you can shoehorn as many good references in there as possible for the sake of those who are actually open to good science and patient feedback.

Cheering you on, Keith, and grateful for all your work.



For anyone who hasn’t seen the MEA survey yet, below are some highlights http://www.meassociation.org.uk/wp-...No-decisions-about-me-without-me-30.05.15.pdf

upload_2017-1-26_16-47-55.png


upload_2017-1-26_16-48-33.png


upload_2017-1-26_16-48-56.png


upload_2017-1-26_16-49-21.png


And check out the comparison with other survey results worldwide on p.286-8, showing that patients in surveys conducted in the UK (1990, 2001, 2004, 2007, 2008, 2010), USA, Netherlands and Norway consistently report results from GET and CBT that are inconsistent with PACE's findings and consistent with reanalyses by Wilshire, Kindlon, Matthees and McGrath 2016 http://www.tandfonline.com/doi/full/10.1080/21641846.2017.1259724 and Vink 2017.

Vink’s title kind of says it all: in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Cognitive Behavioral and Graded Exercise Therapy are Ineffective, Do Not Lead to Actual Recovery and Negative Outcomes may be Higher than Reported https://www.sciforschenonline.org/journals/neurology/article-data/JNNB-3-136/JNNB-3-136.pdf
 

Jenny TipsforME

Senior Member
Messages
1,184
Location
Bristol
But again patients want heavily promoted therapies. Would would the 2017 survey say now we have seen the PACE claims collapse.
Perhaps there should be a large survey on these issues soon?!

It is great that they are now quoting patient surveys as legitimate evidence. Means we can do this too and it should carry equal weight...

Which is quite ambiguous but suggests that people with ME want some NHS support it is not asking about any particular type of service.
Yes very dodgy and those authors must know it. If you ask people with an undertreated condition if they want treatment centres they are unlikely to say no. However, would any patients design the centres how they are in the uk? Probably not.

Those "alternative facts" again. Such a simple word-sleight, but skews the truth hugely. If this stuff was advertising, they could be taken to court (many times over) for deliberately misleading ads. B
How is advertising defined? Do you have to be a paying customer?!

This time they have dug their hole a bit too deep, I think.
Although on superficial reading it looks like authoritative researchers have slammed down the maverick (so short term gain) they've shot themselves in the foot. Even altfacting their own previous online statements. With all those cosigners someone should have spotted the mistake!
 

Dolphin

Senior Member
Messages
17,567