Guardian piece on ME by Nick Duerden, mentions PACE 'controversy', includes quote from Chalder. Bit of a nothing article.

Esther12

Esther12

Senior Member (Voting Rights)
"Missing the fizz: my long battle to understand the mysteries of ME"

https://www.theguardian.com/society...long-battle-to-understand-the-mysteries-of-me

The author has written a book on pursuing alternative healthcare.

I became ill in 2011, laid low by a virulent virus that depleted me in ways that were novel and awful. It did not lift and exhaustion became my new norm. Confusingly, my GP asked if there were problems in my marriage, while an immunologist suggested he would diagnose chronic fatigue syndrome (CFS), also known as myalgic encephalopathy (ME), only I did not meet all of the diagnostic criteria.
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PACE bit, which does link to the new Wilshire paper:

A Pace trial – abbreviated from pacing, graded activity and cognitive behavioural therapy: a randomised evaluation – in 2011 reported positive results for CBT and GET, which ensured that the NHS continued to treat the condition in this manner. But last month new research was published to suggest that the first trial was “controversial”, because new analysis said CBT and GET “have no long-term benefits at all”.

Many patients, and some doctors, celebrated this analysis, convinced that the approach has always been wrong. But when I speak to one of the Pace trial’s authors, Prof Trudie Chalder of King’s College London, she tells me that she stands by its findings and that the patients she has treated over 30 years have routinely benefited as a result. Nevertheless, she adds: “There are groups of people who perceive all such trials negatively; I’m not sure why. Perhaps they think we are suggesting the problem is psychological. We’re not. This is simply a rehabilitative treatment to help manage the symptoms more effectively.”
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Pretty annoying to have Guardian's only coverage of the Wilshire paper written by someone who doesn't reveal an understanding the details. I guess the PACE authors only dare respond to people who don't display any understanding of the details?

[edit: just to clarify my concerns - presenting PACE criticisms in terms of this 'physical vs psychological' debate plays into so many of the prejudices that are used to dismiss criticisms of PACE. Also, presenting patients as embracing interventions with a poor evidence base can make it more difficult to have patient concerns about the misleading promotion of CBT/GET taken seriously.]

[edit 2: Also the "can there not be more collaboration between these two schools of thought?" seems like exactly the sort of thing that would appeal to the prejudices of Guardian readers ,but rather overlooks the fact that the PACE researchers have just spent a decade promoting smears and bigotry against the patients who dared criticise their work.]

At the same time, he uncritically includes stuff from William Weir that looks too strong to me, so it's an even-handed lack of critical engagement, which may be the best we can hope for from the Guardian.

Overall, I think that this piece is probably worse than nothing, but maybe I'm being unfair. I'm so pissed off with the Guardian's coverage of PACE in general, that this irritation is probably seeping into my reading of this article a bit, when it's not really fair to blame the author of this piece for it. At the same time, the fact the Guardian chooses to prioritise publishing pieces like this is frustrating.
 
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Esther12 said:
"Missing the fizz: my long battle to understand the mysteries of ME"

https://www.theguardian.com/society...long-battle-to-understand-the-mysteries-of-me

The author has written a book on pursuing alternative healthcare.



PACE bit, which does link to the new Wilshire paper:



Pretty annoying to have Guardian's only coverage of the Wilshire paper written by someone who doesn't reveal an understanding the details. I guess the PACE authors only dare respond to people who don't display any understanding of the details?
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As you no doubt know The Guardian has a somewhat terrible record on matters 'CFS/ME'.

Up until about 2000 it's quite sympathetic, especially in the eighties/early nineties, indeed in the mid to late seventies it's a little bit of a groundbreaker (if you include The Observer). As part of the project me and my colleague were working on (alluded to by me in earlier posts) we had to scour papers over decades and I could very much detect a change in editorial at the paper nearly twenty years ago.

This comes at roughly the same time the Living Marxism network begin to 'disband' and the likes of the Science Media Centre form.

It's long occurred to me that there's a 'group think' culture at The Guardian regarding this matter.
 
For the Guardian, it's not as bad as I feared. At least it does raise the problems with PACE, mentions the Wilshire paper, and talk about problems with energy metabolism, and mentions Unrest.

It seems a bit muddled in places but I think that's fairly inevitable when an individual who is perhaps not up to speed with all the science and politics writes about their own experience - and attributes improvement to the therapies they have tried when it's just as likely to be down to time, rest and luck.

Perhaps someone should contact the author and encourage him to join us here to learn more!

That quote from Chalder: ''This is simply a rehabilitative treatment to help manage the symptoms more effectively.” is disingenuous, given her claims of 30% recovery.
 
Trish said:
For the Guardian, it's not as bad as I feared. At least it does raise the problems with PACE, mentions the Wilshire paper, and talk about problems with energy metabolism, and mentions Unrest.

It seems a bit muddled in places but I think that's fairly inevitable when an individual who is perhaps not up to speed with all the science and politics writes about their own experience - and attributes improvement to the therapies they have tried when it's just as likely to be down to time, rest and luck.

Perhaps someone should contact the author and encourage him to join us here to learn more!

That quote from Chalder: ''This is simply a rehabilitative treatment to help manage the symptoms more effectively.” is disingenuous, given her claims of 30% recovery.
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I would agree with "not as bad as I feared". I do feel there's a slight grudging nature on the part of the paper for carrying this though and, as ever, I cannot remember when I've been satisfied by a newspaper article on this topic but then maybe the likes of us (in this particular boat) are not the audience?
 
Oh I think positive on the whole. A well respected, successful, MALE journalist gets ill with CFS and is writing about it. Can't be a bad thing, I generally think that the more of us there are speaking out, even if not 100% informed about PACE etc., the better. Of course, I might be wrong.

I found this quote from one of the amazon reviews of his book (bolding mine):

"Eventually, Duerden’s search for a route to recovery led him outside the home and to the decision to document what was happening to him. One of his earliest experiences was with the London Optimum Health Centre, where he participated in a pricey 90-day program. At this apparently benign New-Age centre, “practitioners” linked chronic fatigue with defective thinking in a manner worrisomely similar to the followers of the questionable, even dangerous, doctrines of Christian Science. Participants in the program were taught to promptly notice negative thought patterns, yell “stop”, substitute negativity with affirmations, and then engage in “Emotional Freedom Techniques”, strange methodical rituals in which they were to repetitively tap various points on the body in order to unblock energy. It sounded to me as though this technique might only be encouraging a sufferer to substitute one pathology (fatigue) for another (obsessive compulsive disorder).

Emotional Freedom Techniques were only the beginning of the weirdness Duerden encountered. He is quick to inform the reader that for legal reasons, he is not suggesting that the man behind one treatment he looked into— Project Meditation’s “LifeFlow”, a kind of meditation muzak— is a “huckster”. However, he provides readers with all the information they need to draw that conclusion for themselves.

Duerden writes well and amusingly of the many, often wacky, alternative therapies he experimented with—from “Delta Isochronic Tones”, Ashok Gupta’s “Amygdala Retraining Technique”, and the brands of mindfulness meditation popularized by Oxford professor Mark Williams and former Buddhist monk, Andy Puddicombe (co-founder of the digital meditation platform Headspace) to the truly bizarre (and eyeball-rolling) practice of “Psych-K”, a form of online kinesiology (muscle testing) in which a practitioner uses a pendulum to communicate with a distant client’s super consciousness to guide the selection of just-right affirmations. Some of the interviews Duerden conducted with the founders and proponents of various techniques were enriching and enlightening. The conversations with the former NHS emergency physician and first chief medical officer at Headspace, Dr. David Cox, and psychoanalyst/social critic Susie Orbach, in particular, were standouts for me."

It sounds as though he writes off the OHC - I particularly like the way that the reviewer has put 'practitioners' in inverted commas, he obviously emphasises in the book how they are not at all qualified. It doesn't sound so positive about Gupta either. Although personally I wouldn't classify Headspace as wacky so it's unclear if he's lumped the two together. I'd be curious to know what Susie Orbach had to say, as far as I know she has no knowledge of ME/CFS so I worry she may have gone down the somatic route... but can't tell from the review and I don't have enough mind power to read the book! Basically though, I'm happy that he has not been sucked in by the OHC. AND he got Unrest mentioned so that's got to be good.

Also, isn't it a good thing that Chalder is quoted in a mainstream newspaper saying that GET only manages symptoms?
 
Thanks for that @Tia, I had no idea he had written a book. I'll have a look.

Edit - I've just ordered myself a copy of his book which came out in February this year. If I ever get around to reading it, I'll let you know.
 
If Chalder wanted to do patients a real favour, she could write a letter to the DWP on the basis of that quote there, instructing them that ME/CFS is a lifelong condition and allow people on ESA/PIP to get 10 year gaps between their psychological torture sessions at the local ATOS miracle centre.

As regards to the rest of the piece, I always feel grumpy at how seldom people realise that it is illogical for psychiatry to get a preferential crack at the medically unexplained. As Dr Weir rightly points out, there is form with multiple schlerosis as well.

If we're lucky, a measured retreat from some in this field as Science progresses is about as much as we can hope for. I suppose the PR line that CBT/GET are 'symptom management' rather than recovery focused, is a somewhat useful quote.

I still think it's extremely sad because 'symptom management' as they put it, with adjunctive mental health support could have been approached and studied in infinitely better ways - in co-operation with the patient community. The fact that there is no equivelant yellow book scheme to report adverse effects fromPACE-style 'symptom management' is likely the only thing that has allowed such a collossal waste of money to continue for as long as it has.

The deus ex machina explanation of 'oh they probably administered the treatment wrong' is an example of the height of amateurism in the field of modern medicine. I think there is still advice out there in parts of the NHS that encourages patients to ignore their symptoms - why would they do that if it's 'not psychological'? Did the PACE trial prove that it is safe to ignore symptoms in ME/CFS? I wonder. If even 30% of patients improve in a treatment trial using almost certainly heterogenous diagnostic criteria, should you really be able to confidentally publish such information? And what of the patients too sick to participate in PACE?

I just can't logically see how PACE, even affording it the most generous interpration of its of findings, could have been used to support the rollout of fatigue clinics across the NHS. There are questions to be answered and perhaps a lot of them for people not involved in BPS-ME/CFS research.
 
I'm not so enthusiastic. At this point in time we've come a long way. Elsewhere in the media things have changed quite a bit.

Having a disingenuous Chalder quote to me signals a cover up for the BPS crowd. They're going to use the Guardian to remake history for themselves.

And again, I know it's important to each of us that we have our own stories. The things we tell ourselves that explain and empower us in our different situations but I have a hard time with people who are new to the illness telling a story that has been told to them and is full of nonsense.

ME is a medical condition. It is a disease and I find it disempowering for all of us when someone goes on about alternative treatments in the media (I don't have a problem with people trying different things for themselves). But one persons story impacts us all. We need biomedical funding for research. The stories of Gupta etc being useful are part of the past. There is nothing about any of that that moves us forward and there are many more people who have been sick for longer and more seriously.

This just panders to more people being steered away from coming together for a better future for all of us and doing their own thing -- wasting precious time, money, energy and resources.
 
Matt (@DondochakkaB) said:
If Chalder wanted to do patients a real favour, she could write a letter to the DWP on the basis of that quote there, instructing them that ME/CFS is a lifelong condition and allow people on ESA/PIP to get 10 year gaps between their psychological torture sessions at the local ATOS miracle centre.

As regards to the rest of the piece, I always feel grumpy at how seldom people realise that it is illogical for psychiatry to get a preferential crack at the medically unexplained. As Dr Weir rightly points out, there is form with multiple schlerosis as well.

If we're lucky, a measured retreat from some in this field as Science progresses is about as much as we can hope for. I suppose the PR line that CBT/GET are 'symptom management' rather than recovery focused, is a somewhat useful quote.

I still think it's extremely sad because 'symptom management' as they put it, with adjunctive mental health support could have been approached and studied in infinitely better ways - in co-operation with the patient community. The fact that there is no equivelant yellow book scheme to report adverse effects fromPACE-style 'symptom management' is likely the only thing that has allowed such a collossal waste of money to continue for as long as it has.

The deus ex machina explanation of 'oh they probably administered the treatment wrong' is an example of the height of amateurism in the field of modern medicine. I think there is still advice out there in parts of the NHS that encourages patients to ignore their symptoms - why would they do that if it's 'not psychological'? Did the PACE trial prove that it is safe to ignore symptoms in ME/CFS? I wonder. If even 30% of patients improve in a treatment trial using almost certainly heterogenous diagnostic criteria, should you really be able to confidentally publish such information? And what of the patients too sick to participate in PACE?

I just can't logically see how PACE, even affording it the most generous interpration of its of findings, could have been used to support the rollout of fatigue clinics across the NHS. There are questions to be answered and perhaps a lot of them for people not involved in BPS-ME/CFS research.
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Expanding on what I said earlier, I think The Guardian rather grudgingly published the piece but the "grudgingly" I suspect is a result of the last eighteen months of PACE criticism and, dare I suggest, the beginnings of backtracking/goalpost shifting.

I think even The Guardian may now be realising they backed the wrong horse.
 
To be honest, I'm not sure the Guardian will have thought that much about it. I think the publishers of the book the author have written will have pitched his article, the Guardian editor will have looked at the credentials of the writer and accepted it.

I think the more genuine stories there are in the mainstream the better. If he was claiming to have been cured by one of the miraculous magical thinking alternative 'treatments' that would be different but from everything I've read, I don't think he is.

@Trish I'd definitely be interested to know what you think about the book :)
 
While it isn't the 'PwME were right all along' article rubbishing PACE we'd hope to see from the Guardian, there are several leaps in the right direction.

The balance is in our favour; Chalder only gets a short quote while Dr Weir gets quite lengthy quotes. Unrest and Wilshire get mentioned and PACE is criticised at long last.
Alternative, rehabilitative and psychological therapies are not reported as curative, only as helpful.

But the biggest indication that the tide is turning at The Guardian is that comments have been allowed, they are not being pre-moderated and it is a Bank Holiday weekend when they have the smallest moderation team online.

All positive signs in my opinion.
 
[SIZE=4]Guardian piece on ME by Nick Duerden[/SIZE] said:
But when I speak to one of the Pace trial’s authors, Prof Trudie Chalder of King’s College London, she tells me that she stands by its findings and that the patients she has treated over 30 years have routinely benefited as a result. Nevertheless, she adds: “There are groups of people who perceive all such trials negatively; I’m not sure why. Perhaps they think we are suggesting the problem is psychological. We’re not. This is simply a rehabilitative treatment to help manage the symptoms more effectively.
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[My bold]

Tempted to respond along the lines of Michael Sharpe's programmatic response, "Have you actually read the paper? (Recovery from chronic fatigue syndrome after treatments given in the PACE trial, Psychological Medicine, 2013)". As untruths regarding PACE claims go, "This is simply a rehabilitative treatment to help manage the symptoms more effectively" is pretty blatant back-pedalling.

Edit: Adding link to 2013 paper, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3776285/
 
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Tia said:
Also, isn't it a good thing that Chalder is quoted in a mainstream newspaper saying that GET only manages symptoms?
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Yes I agree. I think it's great the public audit trail these folks are creating, of the untruths they pronounce which are so easily verifiable. I don't think they realise how this may well come back and bite them in due course.
 
There are good things about the article... it's just so Guardian! The culture of that paper bugs me.

Also, while it's rarely the author who chooses the headline, the 'my long battle to understand the mysteries of ME' intro to this piece really implies that some sort of rigorous examination of the available evidence will be forthcoming.

Liv aka Mrs Sowester said:
But the biggest indication that the tide is turning at The Guardian is that comments have been allowed, they are not being pre-moderated and it is a Bank Holiday weekend when they have the smallest moderation team online.
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Yeah... sad that's seen as a step-forward, but it's not long ago the Guardian were promoting the BS claim that "According to the police, the [ME/CFS] militants are now considered to be as dangerous and uncompromising as animal rights extremists."
 
Esther12 said:
Yeah... sad that's seen as a step-forward, but it's not long ago the Guardian were promoting the BS claim that "According to the police, the [ME/CFS] militants are now considered to be as dangerous and uncompromising as animal rights extremists."
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To me it looks like all sorts of people and organisations that have to date supported/promoted that viewpoint, might now be trying to disengage themselves from such obvious association. Hopefully this indicates a wish/need to desert their now-obviously-sinking ship.
 
to me it came across as a dumbed down fluff piece to flog a poorly researched book . rather patronising of the guardian to infer their readership is full of uneducated or simple minded folk to lazy to google anything in depth for themselves. but then most newspapers seem to think their readers are to thick to think for themselves hence the ridiculous numbers of factually incorrect stories published.
 
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