Norway: Opinion piece on "Facts and myths about ME" by Reme, Flottorp and Wyller

Trish said:
I think they are different. Hence treatments need clinical trials to show effectiveness, but can be withdrawn if there are lots of yellow card reports, ie anecdotes, from individuals of serious side effects.
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Also harms are obviously far more important to look at than benefits, even more so in illnesses that are widely known to be both highly fluctuating but also often relapse.

This is the literal basis of "first do no harm", but it's not in effect for an issue that's been demedicalized. It should be self-evident that people ending up bedbound or far more disabled than they came in, sometimes permanently, consists of harm, no reasonable person would argue otherwise. The problem is that the deterioration itself is denied, because it is "subjective", even though it is far more objective than all the subjective benefits combined, which are conveniently emphasized.
 
I also don't think harms and benefits should require equal evidence.

Human psychology and business interests are strongly biased towards a treatment being effective. It's much more difficult for harm to be noticed.

If there are consistent reports of harm this needs to be taken far more seriously than consistent reports of benefit.
 
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Peter Trewhitt said:
Yes, those attacking claims of harm, very much fail to be objective about the available evidence balance.

Anecdotes of harm are sufficient to put a drug treatment on hold, so the same should apply for other forms of treatment. Anecdotes of success might be indicators for further research but not for universal application of the treatment to everyone.

If there are anecdotes of both harm and success from a treatment anyone providing that treatment needs to be able to distinguish between who will suffer and who will benefit before applying it universally or if offering it as an experimental intervention give accurate probabilities for being hurt or benefited before they can claim any informed consent. How many proponents for say GET point out the surveys indicating a majority of recipients experience no long term benefit or even significant harms to their patients.

This imbalanced approach is reinforced by the many anecdotes from such as participants in such as the PACE trial or recipients of LP who claim they tried to report harm, but that they were disbelieved.

Also the information on harm resulting from GET and CBT is very different quality to anecdotes of success pushed by interested parties. Those pushing anecdotes of success either give/report personal perceptions of individual clinicians that are never quantified or independently verifiable, or single case studies that are also usually independently unverifiable. In contrast the evidence of harm is consistent with current understanding of PEM and comes from large surveys, where there are effectively thousands of anecdotes of harm and where reports of success in these surveys are invariably very much a minority. Also different independent surveys are reasonably consistent with each other.
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Trish said:
I think they are different. Hence treatments need clinical trials to show effectiveness, but can be withdrawn if there are lots of yellow card reports, ie anecdotes, from individuals of serious side effects.
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I think that the potential problems with bias are largely similar for anecdotes of positive and negative effects, but that there are also legitimate reasons to be more concerned about anecdotes of harm, and to emphasise the need for caution in making claims about how others should treat their health problems. So it might be more justified to change behaviour in response to anecdotes of harm, but in both instances I think it's still important to be cautious about claiming that these sorts of anecdotes allow us to know anything about the effect of a treatment with any real confidence. I'm not sure our current understanding of PEM allows too much confidence either.

strategist said:
I also don't think harms and benefits should require equal evidence.

Human psychology and business interests are strongly biased towards a treatment being effective. It's much more difficult for harm to be noticed.

If there are consistent reports of harm this needs to be taken far more seriously than consistent reports of benefit.
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Yeah, there are these other biases that seem built into the system that can lead to ways of patients being harmed getting discounted.
 
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Two more contributions to the current ME debate in Aftenposten. One from Paul Garner who says Reme, Flottorp and Wyller's opinion piece was well received among British colleagues who are researching ME, and among clinicians. He therefore got worried when he read Tuller's misguided comment and describes Tuller as a man who is crowdfunded for criticising psychological ME treatments.

He says he's been involved in evidence based medicine and has evaluated research for over 25 years and can safely say that Tuller's views have no ground in science nor are shared with researchers in the field. He also says the objections are unethical, cause confusion and prevent patient from seeking treatments that can help.

Further that Tuller is part of activists with a "belief" that illness is either in the mind or in the body. "We know that ME is related to processes in the brain, and this influences several systems in the body, but also cognitive, including expectations and understanding of symptoms. The last is the essence in treatments, as cognitive therapy and graded exercise, and help people recover".

link to google translation:
https://www-aftenposten-no.translat..._sl=no&_x_tr_tl=en&_x_tr_hl=en&_x_tr_pto=wapp

The second piece is from the leader of the Norwegian Association for Lightning Process instructors about the ongoing LP study with Landmark with headline "Finally there will be more research into ME!"

link to google translation:
https://www-aftenposten-no.translat..._sl=no&_x_tr_tl=en&_x_tr_hl=en&_x_tr_pto=wapp
 
Kalliope said:
https://www-aftenposten-no.translat..._sl=no&_x_tr_tl=en&_x_tr_hl=en&_x_tr_pto=wapp
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"British colleagues working on research into ME"
Apart from the 'recent' regurgitations of PACE trial 'analyses', White,Sharpe, and Chalder have not done any new research on ME or CFS for many years. Wessely also 'left the field' a long time ago.
The British researchers currently working on ME (eg Ponting, Morten) afaik do not support the CBT/GET model and have not been approached for comment by journalists or indeed Paul Garner who's only 'claim to fame' with regards to ME research is...... what exactly?
 
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Sly Saint said:
"British colleagues working on research into ME"
Apart from the 'recent' regurgitations of PACE trial 'analyses', White,Sharpe, and Chalder have not done any new research on ME or CFS for many years. Wessely also 'left the field' a long time ago.
The British researchers currently working on ME (eg Ponting, Morten) afaik do not support the CBT/GET model and have not been approached for comment by journalists or indeed Paul Garner who's only 'claim to fame' with regards to ME research is...... what exactly?
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While White, Sharpe and Wessely say they have left the field, there is still a long list of people with BPS views in England doing BPS ME/CFS research, or research into what they variously call PPS, MUS, FSD etc., particularly Chalder, Crawley, Loades, Moss Morris, Deary, etc etc. And they are still getting funding and training up lots more students. It's nowhere near over yet.

Garner is just the latest recruit from outside the field, and is showing all the signs of a new recruit to a cult who wants to prove his credentials to his new chums. It's sickening.
 
Do people like Garner ever consider that post-viral fatigue is almost always self limiting, and therefore he maybe lucked out? Does he also consider that the patients highlighting flaws in psychological studies tried to exercise and push there way out of the illness? We didn’t all just capitulate at the first sign of symptoms. People had careers, families, etc. Their idea of who we are indicates such a lack of familiarity. It makes one wonder who they’re actually speaking with, or more likely, speaking at.
 
Lou B Lou said:
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Garner conveniently misses that the point that @dave30th ’s current work is not to promote any particular understand of ME/CFS, Long Covid, MUS or FND but rather to point out the major logical and methodological flaws and apparent research misconduct in this field.

Ad hominem attacks and a failure to address his substantive methodological issues somewhat undermine Garner’s claims to be an expert in clinical research, when he fails to grasp the basic points that anecdote is not the same as experimental evidence and that unblinded trials relying on subjective outcomes are always at risk of bias. These are issues that are taught in any credible undergraduate courses in the relevant fields.
 
Kalliope said:
Two more contributions to the current ME debate in Aftenposten. One from Paul Garner who says Reme, Flottorp and Wyller's opinion piece was well received among British colleagues who are researching ME, and among clinicians. He therefore got worried when he read Tuller's misguided comment and describes Tuller as a man who is crowdfunded for criticising psychological ME treatments.

He says he's been involved in evidence based medicine and has evaluated research for over 25 years and can safely say that Tuller's views have no ground in science nor are shared with researchers in the field. He also says the objections are unethical, cause confusion and prevent patient from seeking treatments that can help.

Further that Tuller is part of activists with a "belief" that illness is either in the mind or in the body. "We know that ME is related to processes in the brain, and this influences several systems in the body, but also cognitive, including expectations and understanding of symptoms. The last is the essence in treatments, as cognitive therapy and graded exercise, and help people recover".

link to google translation:
https://www-aftenposten-no.translat..._sl=no&_x_tr_tl=en&_x_tr_hl=en&_x_tr_pto=wapp

The second piece is from the leader of the Norwegian Association for Lightning Process instructors about the ongoing LP study with Landmark with headline "Finally there will be more research into ME!"

link to google translation:
https://www-aftenposten-no.translat..._sl=no&_x_tr_tl=en&_x_tr_hl=en&_x_tr_pto=wapp
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Aside from how his argument of 25 years of experience in clinical evidence absolutely beclowns not just the medical profession but the clinical evidence specialties, it's something that the ridiculous argument of Tuller being crowdfunded years after he began is supposed to be the reason for his work starting in 2011. Shows how little he cares for facts and evidence. As a professor of clinical evidence. Being a Cochrane co-founder now seems kind of evident in hindsight, if this is what the organization was founded on, it explains why they are so bad at it.

Garner's arguments are so mediocre, it's just cheap sophistry. WTF is even happening that only the victims of blatant pseudoscience care that pseudoscience is destroying healthcare.

The newspapers publishing this drivel for clicks and ads are despicable. Although even academic journals don't bother fact-checking so it's not as if it should be expected here.
 
dave30th said:
Probably not, but in any event what would I say in reply? I don't know that i have anything else to add to the discussion.
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Plus, you're from the US, as am I, not European. Personally I'd reply with something quintessentially American, like a Bugs Bunny balloon cartoon with the caption "What a maroon!", but I realize that we need to be professional and adult. I suppose.
 
dave30th said:
Probably not, but in any event what would I say in reply? I don't know that i have anything else to add to the discussion.
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Yup. The latest reply was just silly anyway, it added nothing at all. Just to get the last word, because they treat this as a debate and debates are for entertainment so they scream loud enough to feel smug about having shouted the most.

It's easy to understand stuff like Enron or how the tobacco companies could do what they did knowingly. Anyone is capable of anything if they live deep enough in a bubble. Literally anyone, medical doctors included, who live very deep in a bubble almost as tightly insulated as the military.

LMAO at the idea of technocracy. Government is about people. A government of technical experts would probably be far worse than even a randocracy (can't be bothered to search for the right word but election through lottery). It would be disastrous.
 
rvallee said:
LMAO at the idea of technocracy. Government is about people. A government of technical experts would probably be far worse than even a randocracy (can't be bothered to search for the right word but election through lottery). It would be disastrous.
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If ever there was a slam dunk argument against technocracy it is the history of psychosomatics, up to the present day.

Garner is probably doing more damage to himself than to anybody else.
 


Paul Garner
·
Nov 19, 2022
@PaulGarnerWoof
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Correcting the record. The objections to the trial evidence on CBT and GET are ideological, not based on science or evidence-informed synthesis and unconflicted assessment.#MECFS #LongCovid


Physios For ME
@PhysiosForME
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For those interested in just one of the reasons that the findings of PACE cannot be applied to the ME population, then this slide may be of assistance. (PACE used the Oxford criteria FYI)
bc5cMDcm_mini.jpg

Physios For ME
@PhysiosForME
Replying to @PhysiosForME
Slide 4: PEM, Fatigue and Diagnostic Issues
6:44 PM · Nov 20, 2022
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Midnattsol said:
The Norwegian term was "uverifisert", which has the same meaning as in English. Something that has not been verified, in this case the stories on Recovery Norway's pages.
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quite a specific term actually in certain contexts. Unverified could mean they haven’t checked the person whose name is on the story is actually the one who wrote it/agrees with it. Eg a notary checking signature and origin.

some of these are anon or without full names too so don’t know how it relates to that in confirming they are actually someone and what would be CMA regs in other sectors to prove they are real

Could also mean that no one checked the veracity of what is claimed in the story who is officially trustworthy. Eg someone close who witnesses health differences and/or confirms that’s what happened
 
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Sly Saint said:
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If objecting to the validity of open trials with arbitrary subjective outcomes lead by biased researchers with massive conflicts of interest, especially a trial that literally applied overlapping entry and recovery criteria, loose selection criteria and dodgy things all around, then count me in that ideology. That ideology is called science, that things are knowable using rigorous, validated and reliable methodologies. Not all ideologies are bad, this one is pretty damn good, actually.

But of course that's silly, the BPS model is purely ideological, which makes all of this turning straight into malicious territory. There is even mounting language over calling harm and deterioration from GET as fraudulent. But BPS features prominently in EBM, so it has to keep going.

This is mirroring the ugly politics that developed around trolling, 4chan, what's usually called dirty tricks ( basically it's the-ends-justify-all-the-means, no matter how ugly and dishonorable, truth be damned). The same tactics of DARVO, of accusing others exactly of what they are doing, even if we are doing the opposite and abusing any and all powers to get their way. This cannot happen accidentally. There will be no saying they didn't know. They did.
 
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