Tom Kindlon
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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Great stuff. And (for the record) a reaction to the paper which spawned this long thread:
http://forums.phoenixrising.me/inde...-and-move-on-keith-petrie-john-weinman.50681/
It was pointed out somewhere in that thread that, as Steven Lubet writes, the authors of that paper have what are clearly paid positions with a company that sells a "belief-based behavior change approach", something they didn't think worth mentioning when declaring interests for their "Time to Move On" paper.
Lol, what? Trump, the Republicans, the gun lobby as a few counter examples?? And free market health care just won't work when the healthy don't have to pay for the ill.it was only Americans who never forgot they were human, because their country allows you to think and say normal things without fear or reprisals.
Go team USA and down with communism that entraps social health care systems in nanny-state politics and policy.
That's what I like about Americans. They have an enviable right to free speech and remember their job is to defend patients at all times
Lol, what? Trump, the Republicans, the gun lobby as a few counter examples?? And free market health care just won't work when the healthy don't have to pay for the ill.
Apologies for a long slightly-offtopic post.I don't think stupidity, greed, corruption, bribery, conspiracy, cover up etc has a border at which it stops, they are just some of the traits of humanity which for some reason always make it to the top of the pyramid. There is no perfect system.
There is however alot of self preservation, self censorship and self interest that allows something flawed to be maintained, and sometimes the original flaw is deliberate.
My personal belief is that once it is obvious there is a flaw in something all of those not bringing attention to it, who should be doing so in their position, are then guilty of making it deliberate.
Bad initial advice is one thing in terms of policy etc but once the genie is out of the bottle all too often the next stage is denial and narrative control.
While none of the researchers involved in PACE are remotely the scientific caliber of Hoyle, the self-imposed academic isolation seems to be a common perpetuating trait. And if this history is any guide, proponents of the BPS model of ME/CFS truly believe their theory is correct and will remain scientifically isolated while their model simply dies a slow death marginalized by the larger research community.Mario Livio said:Hoyle’s blunder was in his apparently pigheaded, almost infuriating refusal to acknowledge the theory’s demise even as it was being smothered by accumulating contradictory evidence, and in his use of asymmetrical criteria of judgment with respect to the big bang and steady state theories. What was it that caused this intransigent behavior?
A few statements made by Hoyle himself provide the best evidence. In Home Is Where the Wind Blows, he wrote the following striking paragraph:
The problem with the scientific establishment goes back to the small hunting parties of prehistory. It must then have been the case that, for a hunt to be successful, the entire party was needed. With the direction of prey uncertain, as the direction of the correct theory in science is initially uncertain, the party had to make a decision about which way to go, and then they all had to stick to the decision, even if it was merely made at random.
The dissident who argued that the correct direction was precisely opposite from the chosen direction had to be thrown out of the group, just as the scientist today who takes a view different from the consensus finds his papers rejected by journals and his applications for research grants summarily dismissed by state agencies.
Life must have been hard in pre-history, for the more a hunting party found no prey in its chosen direction, the more it had to continue in that direction, for to stop and argue would be to create uncertainty and to risk differences of opinion breaking out, with the group then splitting disastrously apart. This is why the first priority among scientists is not to be correct but for everybody to think the same way. It is this perhaps instinctive primitive motivation that creates the establishment.
One can hardly imagine a stronger advocacy for dissent from mainstream science. Hoyle echoes here the words of the influential second-century physician Galen of Pergamum: “From my very youth I despised the opinion of the multitude and longed for truth and knowledge, believing that there was for man no possession more noble or divine.”
However, as Martin Rees, Astronomer Royal for Britain, has pointed out, isolation has its price. Science progresses not in a straight line from A to B but in a zigzag path shaped by critical reevaluation and faultfinding interaction. The continuous evaluation provided by the scientific establishment that Hoyle so despised is what creates the checks and balances that keep scientists from straying too far in the wrong direction.
By imposing upon himself academic isolation, Hoyle denied himself these corrective forces.
Wow, a second article by Steven Lubet. Great to get a legal ethicist academic to tear it to pieces. I look forward to reading this.
'the parade of horribles' is a wonderful phrase.
I have now read the article. It's truly excellent, well reasoned succinct and damning of those who pretend to have a valid defence of the PACE trial. Wonderful. Thank you Steven Lubet.
Apologies for a long slightly-offtopic post.
There are a few parallels between PACE and the Steady State Theory of cosmology. 60 years ago, there were two competing models for the universe: The Steady State Theory which purported that matter was continually being created in an expanding universe, and the Big Bang Theory which said that all the matter in the universe was created in one "Big Bang". Both theories make very testable observational predictions.
By the mid 1960s, observational evidence had disproven the Steady State Theory (in favor of the Big Bang).
But it just might turn into a series?OK guys, remember the thread topic... lolol: "
Defense of the PACE trial is based on argumentation fallacies"
I just don't understand why the author left so many great ones out.
The ethical doctors, scientists and academically minded people like Mr Lubet (patient) who speak up for the disabled patients against the appalling British PACE trial (by reading and following Scientific evidence on CFS), tend to not to be British. In contrast it seems if you are British and you dare to stand up for patients you are very quickly forced fed propaganda and told how to behave in the public eye or simply ignored.
That's what I like about Americans. They have an enviable right to free speech and remember their job is to defend patients at all times, irrespective of political decree, so use it without hesitation because they are brave.
In all my years talking to people online, it was only Americans who never forgot they were human, because their country allows you to think and say normal things without fear or reprisals.
Go team USA and down with communism that entraps social health care systems in nanny-state politics and policy.
The very point of contention regarding the PACE trial, however, is whether or not myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) symptoms are the product of patients’ “unhelpful” or “dysfunctional” illness beliefs.
Doesn't Lubet's point here actually seems to support the claim made by Petrie and Weinman (that I disagree with) about what is at the heart of the controversy around PACE? I felt confused by exactly the point that was being made in this section.
A circular argument assumes or incorporates the desired answer in the premise of the question itself. Petrie and Weinman engage in circular reasoning when they begin with the statement that “differing beliefs about the causes of chronic fatigue syndrome (CFS) still influence how scientific studies in this area are accepted and evaluated.”
They offer no proof for this assertion, although they revert to it repeatedly throughout the paper, claiming, for example, that “this is really the key issue behind the criticisms of the PACE study” and “causal beliefs are an important factor in the way patients understand their illness” (citing only themselves for the latter proposition).
The 'Bait and switch' section seemed like a 'bait and switch' itself, moving from P&W's claims about treating 'cancer-related fatigue' to talking about curing cancer.
We talked on another thread about how these people are not exactly self-analyzers. But you seriously do see articles claiming that CBT helps everything from cancer to diabetes. The thing is, CBT practitioners who see cancer patients would never, never claim they can cure cancer. Instead, they'd say something like, "I teach my patients coping skills" or "I help my patients through positive thinking". They may believe it affects the course of their illness to a certain degree, or they may feel that talking things through and learning coping skills just makes the patient feel more comfortable in a difficult situation. I'm sure there are lunatics who believe they can cure cancer through the power of their words alone, but my impression is that they are outliers.
Petrie and Weinman engage in circular reasoning when they begin with the statement that “differing beliefs about the causes of chronic fatigue syndrome (CFS) still influence how scientific studies in this area are accepted and evaluated.”
The very point of contention regarding the PACE trial, however, is whether or not myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) symptoms are the product of patients’ “unhelpful” or “dysfunctional” illness beliefs.
The bait-and-switch that Lubeck is discussing is this very thing.
...
Therefore, when the authors of the original paper are saying "see? We use CBT even in cancer, and you don't hear any cancer patients complaining!" they are comparing apples and oranges. Clinicians who use CBT in cancer do not make any claims that the therapy is curative, whereas BPS CBT practitioners for ME/CFS do so.
Therefore, comparing the opinions of cancer patients who receive CBT versus ME/CFS patients who receive a very different treatment with very different expectations is a bait-and-switch.