Psychology Today blog - The Dark Side of Social Media Activism in Science, 2019, S. Camarata

I don't have the brain cells for this at the moment but one trope that bothers me in this is the weird messiah thing about Sharpe and his colleagues boldly and objectively researching treatments for decades and giving hope. This is plain old bullshit.

This all started in the late 80's from the conclusion that CBT and GET were it, everything since has been about making up evidence for it. There has been nothing else. Well, besides the massive quackery of LP. Other than that, it's all been running around in circles doing the same trials over and over again on the exact same interventions over and over again. There has been zero progress, yet it seems to be discussed like something comparable to the 200+ different drugs that have been trialed for Alzheimer's.

Underlying it's still conversion therapy. One thing. The same thing. Over and over again. For 3 decades. Exactly like finding the exact right tune, cadence and rhythm that will make it rain. It's still the same thing it was straight from the start.

That's not how any of this works.
 
@Jonathan Edwards
my goodness you were really on a roll in those comments! Bravo :emoji_clap:

Michael Sharpe, Simon Wessely might be interested in this
Seminar at Queen Square
Submitted by Jonathan Edwards on July 23, 2019 - 5:49pm
If anyone in London, UK is interested in these issues around the PACE trial I will be giving a seminar on the topic at the National Hospital for Nervous Disease at Queen Square tomorrow evening at 5pm. I am hoping to get further opinions prior to submitting my testimony to NICE.
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Response yesterday by ME Patient Foundation

MEPF Response to Psychology Today Article
The Dark Side of Social Media Activism in Science, Scientists are targeted when results do not align with activist views - Stephen Camarata

The ME Patient Foundation would like to correct the many errors and assumptions made in this piece.

It is unfortunate that Stephen Camarata has been hoodwinked into thinking social media activism with regards to ME/CFS research is the dark side of activism in science. Patients and scientists have merely been highlighting the poor quality of Professor Sharpe’s work and understandably he doesn’t like it very much.

Patients are not ideologically against psychological support; chronic illness has a devastating effect on the lives of sufferers and supportive psychological interventions that help patients come to terms with those difficulties can be beneficial if used appropriately. However, the model of CBT used in treating ME/CFS is coercive, designed to change the patients’ ‘false illness beliefs’ which underpins the biopsychosocial illness model Sharpe uses (ironically this exemplifies their beliefs since there is no evidence to support this model) see Geraghty et al 2019 . This is not supportive or helpful as it questions the patient’s reality and encourages them to be more active than they are able, often resulting in serious damage to their health. Moreover, it disregards the overwhelming evidence of biological abnormalities in ME patients, a disease classified by the World Health Organisation as neurological disease and not a psychological condition as believed by Sharpe and his followers, that would explain why this is harmful (see reporting of patient harms and research from the Workwell Foundation).

Social media is used by patients and the scientists supporting them because many patients are unable to leave their houses and live isolated lives, it is often the only way they can effectively communicate. We understand why Professor Sharpe dislikes such communication exposing flaws in his research, but this does not address the power imbalance. Professor Sharpe utilises the print media via friends at the Science Media Centre and publishes in various journals. He is healthy and occupies a privileged and powerful position as a professor at Oxford University, while the patients he frequently criticises can only avail themselves of social media to make their voices heard. Meaningful patient involvement during the research process would prevent such a situation occurring.

If Professor Sharpe is serious about using the scientific method to resolve the issues then he should support the release of all PACE trial data, something we consider a basic requirement given the trial was publicly funded. Instead, very ill patients like Alem Matthees are made worse (now bedridden and unable to communicate with the outside world at all) by being forced to obtain such data via Freedom of Information requests. Mathees successful request led to reanalysis of the PACE trial using the authors’ original protocol and concluded:

‘These findings raise serious concerns about the robustness of the claims made about the efficacy of CBT and GET. The modest treatment effect obtained on self-report measures in the PACE trial do not exceed what could be reasonably accounted for by participant reporting biases.’ Wiltshire et al.

If Sharpe respected patients he and his co-authors would have withdrawn their paper after its multiple flaws were exposed rather than inflicting this burden on them and would have adhered to the Declaration of Helsinki and notified PACE trial participants of their conflicts of interest. The real dark side seems to be a lack of respect for patients’ rights and lived experience, especially given many of these patients are themselves scientists and medics. We are living in a time when many scientists and medical researchers are keen to engage patients following the patient and public involvement (PPI) in research model, it is unfortunate that professor Sharpe and his acolytes like Stephen Camarata, trapped in the historical paternalistic paradigm, are incapable of doing so, instead choosing to traduce the patients they should be helping.
For more information on the PACE trial flaws please see our website.




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Binkie4 said:
Response yesterday by ME Patient Foundation

MEPF Response to Psychology Today Article
The Dark Side of Social Media Activism in Science, Scientists are targeted when results do not align with activist views - Stephen Camarata

The ME Patient Foundation would like to correct the many errors and assumptions made in this piece.

It is unfortunate that Stephen Camarata has been hoodwinked into thinking social media activism with regards to ME/CFS research is the dark side of activism in science. Patients and scientists have merely been highlighting the poor quality of Professor Sharpe’s work and understandably he doesn’t like it very much.

Patients are not ideologically against psychological support; chronic illness has a devastating effect on the lives of sufferers and supportive psychological interventions that help patients come to terms with those difficulties can be beneficial if used appropriately. However, the model of CBT used in treating ME/CFS is coercive, designed to change the patients’ ‘false illness beliefs’ which underpins the biopsychosocial illness model Sharpe uses (ironically this exemplifies their beliefs since there is no evidence to support this model) see Geraghty et al 2019 . This is not supportive or helpful as it questions the patient’s reality and encourages them to be more active than they are able, often resulting in serious damage to their health. Moreover, it disregards the overwhelming evidence of biological abnormalities in ME patients, a disease classified by the World Health Organisation as neurological disease and not a psychological condition as believed by Sharpe and his followers, that would explain why this is harmful (see reporting of patient harms and research from the Workwell Foundation).

Social media is used by patients and the scientists supporting them because many patients are unable to leave their houses and live isolated lives, it is often the only way they can effectively communicate. We understand why Professor Sharpe dislikes such communication exposing flaws in his research, but this does not address the power imbalance. Professor Sharpe utilises the print media via friends at the Science Media Centre and publishes in various journals. He is healthy and occupies a privileged and powerful position as a professor at Oxford University, while the patients he frequently criticises can only avail themselves of social media to make their voices heard. Meaningful patient involvement during the research process would prevent such a situation occurring.

If Professor Sharpe is serious about using the scientific method to resolve the issues then he should support the release of all PACE trial data, something we consider a basic requirement given the trial was publicly funded. Instead, very ill patients like Alem Matthees are made worse (now bedridden and unable to communicate with the outside world at all) by being forced to obtain such data via Freedom of Information requests. Mathees successful request led to reanalysis of the PACE trial using the authors’ original protocol and concluded:

‘These findings raise serious concerns about the robustness of the claims made about the efficacy of CBT and GET. The modest treatment effect obtained on self-report measures in the PACE trial do not exceed what could be reasonably accounted for by participant reporting biases.’ Wiltshire et al.

If Sharpe respected patients he and his co-authors would have withdrawn their paper after its multiple flaws were exposed rather than inflicting this burden on them and would have adhered to the Declaration of Helsinki and notified PACE trial participants of their conflicts of interest. The real dark side seems to be a lack of respect for patients’ rights and lived experience, especially given many of these patients are themselves scientists and medics. We are living in a time when many scientists and medical researchers are keen to engage patients following the patient and public involvement (PPI) in research model, it is unfortunate that professor Sharpe and his acolytes like Stephen Camarata, trapped in the historical paternalistic paradigm, are incapable of doing so, instead choosing to traduce the patients they should be helping.
For more information on the PACE trial flaws please see our website.




4343

11 comments20 shares
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I highly appreciate a patient association that actively responds to disinformation about this disease. About damn time and great response.
 
Sly Saint said:
@Jonathan Edwards

how did this go?
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It was interesting and useful. It was a small audience of medical staff at the Queen Square unit. I think therapists may have been put off by the title about unblinded trials!

It was particularly interesting that medical staff there were in agreement that the evidence for CBT and GET is not good - like the department at UCH they had no problem with my analysis.
 
I had to study both the NZ Counsellors Code of Ethics and the NZ Psychological Society’s Code of Ethics. This article would appear to breach these in three distinct ways. Firstly, the article appears to fail the standard of competence under the principle of “Responsible Caring”. Secondly, there is an expectation to do no harm—again under the principle of “Responsible Caring”. That burden of non-maleficence is considerably enhanced when the group in question is vulnerable in any way under the principle of “Social Justice” and “Respect for the Dignity of People”. I think it would be natural to argue the chronically ill and disabled should be considered a group with a greater expectation of protection from harm. Third, there is a ethical principal of justice and beneficence where members are supposed to actively pursue the well-being of those under their care and as well as the interests of wider society, particularly that of vulnerable groups. I’m starting to poke around in the ethical expectations of the APAs. Perhaps we can open up a forum specifically to pool our knowledge of the codes of conducts (psychology, psychiatric and medical), the complaints procedures, etc. That way we might be able to move swiftly and professionally when we need to address the behaviour of professionals which is likely to have an impact on our well-being, beyond letters to editors/comments which might be ignored.

Out of interest, has anyone lodged a complaint against Sharpe? At what point do we consider lodging a complaint of breach of ethics of Camarata or any other fool too stupid and puffed up with their self-importance they treat us with such disdain? Perhaps that is a question for another forum area.
 
Amw66 said:
A number of interesting comments now, including further contributions from @Jonathan Edwards .
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I think yet again this will prove to be a serious own goal for Sharpe and Co. This blog, and especially the comments and exchange of comments, publicly exposes very clearly many of the flaws. Hopefully some good scientists may become newly aware of PACE and its ramifications, thanks to this blog and the comments. Exhibit A m'lud.
 
I'm late to the party again, and I'll probably be going home early to bed. Wet blanket, that's me. But to me the article just underlines the deeply ingrained prejudice and uncritical thinking that goes on in this world. I've posted a comment that is very specific to my habit: I had to release some steam.
 
Graham said:
I'm late to the party again, and I'll probably be going home early to bed. Wet blanket, that's me. But to me the article just underlines the deeply ingrained prejudice and uncritical thinking that goes on in this world. I've posted a comment that is very specific to my habit: I had to release some steam.
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Lovely comment @Graham.
Graham said:
I have yet to see any scientific or statistical explanation to support these calculations. I have heard that they were given approval for this ("Please sir, those big boys told us we could do it!"), and that it was unimportant because there were other criteria being used ("Please sir, I didn't do your homework, but I have done the other subjects!"). These are not rebuttals.
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[My bold]
Absolutely! They are excuses of the feeblest kind. Even their plaintive claims of rebuttal are flawed, because they fail to effectively rebut anything.
Graham said:
The truth is that if you correct this one error, the claims of 22% recovery are wiped out. Surely that is significant: if such a basic error has such a fundamental effect on this result, isn't it worth looking more carefully at the other faults?
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And especially at the other data, as yet not released. I suspect this is partly why they are so petrified of further PACE data release, because it would at the very least probably expose their incompetences still further.
 
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