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

Sociopath

 

Not a recommendation; no idea who this person is but found his blog
The Perils of Popular Demand Science

Another one who has swallowed KK's diatribe hook, line and sinker.

https://rwmillard.com/blog/

 

ME patients, literally for decades: we want research funding, high-quality science, centers of expertise, specialist training, epidemiological surveys and more science, data sharing, open collaboration and science SCIENCE SCIENCE!!

Also ME patients, also literally for decades: we are desperately funding our own private research, lobby funding institutions constantly to get more funding, we succeeded in the creation of 3 NIH centers of expertise and have a growing roster of talented researchers doing more than ever

Also ME patients, also literally for decades: we strongly dislike the convoluted pseudoscience promoted by people who show a clear lack of understanding of this disease and have for years made false claims about their own research and about us

Also ME patients, whenever weird pseudoscience is promoted about us: here are 4 dozen research papers, population surveys, literature reviews, reports from multiple conferences, independent analyses confirming that the status quo is a complete disaster amounting to a human rights disaster

Random jackass: wow, look at those anti-science weirdos who disagree yelling STOP at their symptoms is groundbreaking science

 

Further blog from Dr Camarata
Distinguishing Social Activism and Healthy Scientific Debate

https://www.psychologytoday.com/gb/...social-activism-and-healthy-scientific-debate

he still doesn't get it

 

He seems tp miss the point that the findings from PACE were not preliminary. They were never intended to be. They were definitive - definitively negative.

 

He seems to miss (evade?) every point. I think this new blog is even more contemptible than the first. It's as if he really thinks that knowing what he's talking about is entirely unnecessary.

 

Circling the point without ever touching it. At least he is circling it, that's progress of sorts.

Just in case my comment does not get published:


You provided an excellent example with exercise in diabetes, in that it provides a false equivalency by using the common thread of exercise.

At issue with the ME research on exercise is not that the patients don't like exercise, it's that it is inappropriate for this disease. Competent researchers of this disease use minimal exertion to study its effects on physiology. Exercise is literally a trigger for this disease as is studied in labs by actual subject matter experts.

A proper equivalency with diabetes would have been to create a treatment programme of graded sugar consumption, where the treatment consists of habituating the body to sugar consumption by slowly building tolerance for it, and with the end goal of maximizing sugar consumption, using self-reported questionnaires of attitude towards sugar as research end-point.

This would of course be absurd, and so it is with exercise in ME. Promoting this viewpoint betrays a fundamental misunderstanding of the disease in the exact same way as proposing a model that diabetes is actually a fear of sugar and that graded sugar consumption is the obvious treatment.

The model created by Sharpe and his colleagues is sadly wholly fictitious. It describes a completely different illness than what has been reported by millions of patients for decades. It should come as no surprise that they would arrive at wrong conclusions from false assumptions. That is a choice they made against consistent objections by the only people who have first-hand understanding of this disease: the patients.

As far away from patient-centered medicine is patient-hostile medicine. The BPS approach to ME shows the way medicine should not be performed: hostile to patients' own experience as it has been reported and documented for years.

In every sense, Sharpe and his colleagues are to ME what HIV deniers are to AIDS. They have an alternative belief system that is wholly fabricated and as such it is normal that they be criticized. It is necessary to criticize those who make extraordinary claims without even ordinary evidence.

The consequences have been absolutely disastrous to the millions suffering from ME. Not only has there been zero progress, things have actually gotten worse. This is the only metric that matters and the last two decades of implementation of this model have made this failure irrefutable, hence the unending criticism.
It should come as no surprise that open label trials with self-reported outcomes and shifting thresholds published by biased and conflicted researchers would not be reliable. Every time this group of researchers has tried including objective outcomes, they dropped them entirely during trial and published only subjective outcomes, highly processed at that.

Truth is that the PACE methodology would show "improvement" about anything: Reiki, astrology, pet rocks, you name it. Everyone should be able to understand that science requires minimizing bias and that a body of research that instead maximizes it should turn out to be misleading is as predictable as it gets. No need to be an expert in anything to understand this basic fact.

Meanwhile the consequences are death and suffering. Not philosophically or metaphorically. Actual death and suffering, discrimination, ostracization and hopelessness caused by impaired progress. This is real and people have to start taking their job seriously. Sharpe and his colleagues do not.

Hindsight has a way of disambiguating and it will not be kind to those who actually managed to regress a disease despite overwhelming evidence and very accurate predictions of exactly what ended up happening. Everything was predicted, multiple times, independently. Yet the harm and contempt continue, all to protect egos at enormous cost in human lives. This is everything medicine is supposed to stand against.

 

How convenient to not have any knowledge with which to assess the PACE trial while calling for more of the same.

 

Ah. Yeah. The logic of "I'm not an expert but here's my opinion as an expert" is quite something.

As if this were any more complicated than it is. No doubt the author would absolutely rail about the very same methodological flaws if he found them elsewhere. A child could understand the problems with PACE and declare it, and I quote," a bunch of doo doo".

 

@Jonathan Edwards . Prof Tim Dornan is leading a " revolution" to change medical education to " humanise" it. He plans to use diabetes as a universal model for how doctors interact with patients. My concern is that as exercise/ CBT is becoming mainstream in diabetes care, this will become part of all medical care. I don't know exactly what he thinks on CBT etc so maybe I'm wrong.

 

He seems to be another one who talks a lot of twaddle about things he does not understand.

 

Oh good, sounds like he's calling for Michael Sharpe to get off twitter so that patient-experts can carry on their good work without harrassment.

 

If we polled doctors about 'panacea' I'm sure 100% will say it's a totally bogus idea, yet here we are with CBT.

 

Many excellent comments. Thanks to those those who contributed.

 

Seriously. Every single line of reasoning is spurious. I mean, how is this possible?

What I am sure he means is that the results do not prove that 'counseling' and 'exercise', as he puts it, are ineffective, because the specific design of the treatments used is preliminary and could be reworked to become effective.

It's probably a line that Sharpe etc. would have been happy to take but for their investment in the PACE trial specifically and the fact that rejigerring after such a prominent trial would probably do a lot to break the illusion of plausibility. I recall reading somewhere that White said they had to rework their approach in order to consistently get positive results, so I imagine something like the reasoning above was their working justification.

Unfortunately I fear it's much worse than simply failing to google "PACE trial" and thus not finding out that it was 600+ patients followed for a year or whatever it was for any specific analysis.

 

I think they may have been heeding @Trish's recent letter. First time I've noticed them talking explicitly about trying to find out who might benefit and who might not. Though it's all tosh, because PACE already answered that one for them pretty unequivocally.