Michael Sharpe: Mind, Medicine and Morals: A Tale of Two Illnesses (2019) BMJ blog - and published responses

large donner said:
But my point was - what is the source of the scientifically validated claim that CBT helps people to "cope" with cancer anymore than a multitude of other things they could using as coping mechanisms. When did CBT come out on top against any range of other possibilities that people already access in everyday life and do not call them treatments?

If such studies exist how did they control for bias of people changing how they answer a question rather than actually measuring "coping" accurately". What definition of "coping" was used etc.

Who reviews such studies, was there any critique of them, did they suffer from the same flaws and biases that most or many psychological studies seem to nowadays?


Basically the claim that CBT even works purely as a coping mechanism treatment has to stand up to scientific scrutiny in cancer as much as it would have to stand up to the recovery or improvement claims for ME.

Different aims yes, but anecdotal claims automatic pass for outcomes claims no.
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As far as I can tell it's just a fad. It will wane in time as people come to terms that it was way overblown and unethically misused with bad consequences. Medicine always falls for those, it's pathological because there never is any self-examination. The fall is already happening, CBT is failing all over the place in areas where it had no chance of being useful but there is a lot of inertia keeping it coasting for a while.

Magical thinking is just that powerful. People want it to be true bad enough that they will allow a huge degree of irrational ideas to run their course, cheerleading for it the whole time and switch on a dime once it has faded that they themselves were never really convinced of it and everyone else but them was overhyping it. Every time. Rinse. Repeat.

In large part it stems from the no-fault culture of medicine. It preserves sanity about the reality that every MD has committed lethal mistakes, to a point, but it also disables the normal self-correcting mechanism of science.
 
DokaGirl said:
The Oxford Compact English Dictionary defines "benign" as 1 kind and gentle. 2 not harmful or harsh; favourable...not malignant.

It does not say effective. Neither does the article.
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By referring to them as treatments the implication is they are effective otherwise they would not be treatments.

His initial question for the paper talks of why benign treatments are controversial but ignores the fact that they are controversial because they are neither benign or treatments. The rest of the article is just deflection and trying to put words in peoples mouths in an attempt to justify poor research.
 
@Adrian

That's one of the main disagreements - benign treatment according to the BPS model, versus doing potential, or actual harm according to the ME community.

We could also look at mistreatment - it can also be effective for the purpose it is used for. Mistreatment versus treatment - another way to look at BPS versus pwME. They call it treatment, pwME call it mistreatment.

Word games.......
 
I had the benign, (if I can use that word), form of CBT - so not coercive, as the therapist understood ME. I didn't find it did much though.

Physicians have told me to ignore my symptoms - or say things like "I will not react, I will not react" (to chemical smells).
This didn't help either, (of course).
 
@rvallee

There are lots of ads on TV about various brands of probiotics for treatment of IBS. Maybe these companies are onto something. We know people's microbiomes have been under "attack" if one can call it that for decades: antibiotics, which are necessary, but wipe out the good and bad bacteria, poor, or junky diets, chemicals foreign to the human body, and who know what else - maybe pollution - I don't know.

At any rate IBS may have mixed causes but good probiotics do seem to help some.
 
Adrian said:
By referring to them as treatments the implication is they are effective otherwise they would not be treatments.

His initial question for the paper talks of why benign treatments are controversial but ignores the fact that they are controversial because they are neither benign or treatments. The rest of the article is just deflection and trying to put words in peoples mouths in an attempt to justify poor research.
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This
 
rvallee said:
I just noted the presence of "morals" in the title and have an urgent need to vomit.

The utter immorality and ethical bankruptcy of this madness is so much worse considering it is promoted and defended by medical professionals.

Do no harm has truly lost all sense or meaning. There will have to be a lot of soul-searching to wipe the slate of this physician-induced human rights disaster.
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Yes. For MS and his dismal co-author to frame their argument around social and moral inclusivity is nauseating in their audacity. I hope it is torn to pieces by bioethicists and others.
 
Ruth said:
How do you know this?
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I just checked and not a single comment was approved despite several Twitter peeps saying they commented.

Predictable. Awful, but predictable.

Pretty likely that whoever hosted this post took Sharpe at face value and had no idea that the controversy was, well... Sharpe and his colleagues. And now they are surprised that it seems, shocker, that Sharpe may be a tad bit very much dishonest.

So this raises the question of a medical journal blog engaging in discussion and then rejecting all discussion because it contradicts the reason why the discussion was deemed pertinent. Oh, the hue manatee.

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Forbin said:
Yes...
DON'T TAKE THE BAIT!

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The responses on Twitter are pretty much on point, well-documented and factually correct so if it's a bait, it's a terrible one. Initially the BMJ media person was responsive then stopped engaging completely once it became clear that Sharpe's version of the controversy is horseshit.

And since the comments are systematically censured on the blog post it otherwise goes uncorrected, allowing Sharpe to promote his bald-faced lies unchallenged. Probably only responses from academic and professionals would get published on the issue.
 
rvallee said:
The responses on Twitter are pretty much on point, well-documented and factually correct so if it's a bait, it's a terrible one. Initially the BMJ media person was responsive then stopped engaging completely once it became clear that Sharpe's version of the controversy is horseshit.

And since the comments are systematically censured on the blog post it otherwise goes uncorrected, allowing Sharpe to promote his bald-faced lies unchallenged. Probably only responses from academic and professionals would get published on the issue.
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I'm glad to hear that. I think as a group of sick people we have been on a steep learning curve with regard to how best to respond. In the past so many comments that at first appeared to make some good point were actually poorly worded and easy to pick apart as a result of deliberate misinterpretation. My heart would sink a little each time as an opportunity lost to tightly argue for what is at the end of the day factually correct.
 
Snowdrop said:
I'm glad to hear that. I think as a group of sick people we have been on a steep learning curve with regard to how best to respond. In the past so many comments that at first appeared to make some good point were actually poorly worded and easy to pick apart as a result of deliberate misinterpretation. My heart would sink a little each time as an opportunity lost to tightly argue for what is at the end of the day factually correct.
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There is a lot of justified anger at playing it diplomatically because it has failed us so miserably in the past. Some of those who were spit in the face from the CFS debacle are still around, rightfully wary and weary.

But things are different with social media, we leave a public record that cannot be buried, unlike the small face-to-face committees that promoted the sabotage of CFS to erase ME. Even the 2007 NICE committee was way more private than what we can do now. Advocates were polite, worked politically and were completely dismissed and bullied. The bitter memory of that is hard to let go of.

But the game has changed. Over time we build a very embarrassing record that neither authorities nor medical institutions have control over. Eventually it will reach a tipping point that makes it obvious that the cost of ignoring us outweighs getting us the blacklist and acknowledging the clusterfuck that is the status quo.

There is every reason to be pissed at health departments, ministers and representatives giving us the verbal finger, lying their ass off about taking it seriously, that it's a "priority". Some of the institutions slow-dragging the tiniest bit of resources, like the NIH, CDC and NICE, were instrumental in the sabotage and it's normal to be very suspicious of engaging with them, I sure am.

But now it happens publicly. It adds up. And now people who were really sure of themselves at first, like this BMJ thing taking people like Sharpe at face value, shut up pretty quickly when we bring the receipts and build spanking-new receipts on top of a growing evidence base and accelerating progress in research.

It's depressing and discouraging but it will work over time, the complaints don't just end up in warehouses anymore. We are basically doing the equivalent of the AIDS movement except at 100x the pace because we have little to no allies. ACT DOWN, I guess.
 
rvallee said:
The responses on Twitter are pretty much on point, well-documented and factually correct so if it's a bait, it's a terrible one. Initially the BMJ media person was responsive then stopped engaging completely once it became clear that Sharpe's version of the controversy is horseshit.
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@rvallee are you able to provide a link to some of these responses?
 
  1. Replying to @MedHums_BMJ


    Perhaps the best you can say for Sharpe's work is that it's "well-written". It's not well-reasoned; it's not ethical.

    4 replies .0 retweets30 likes

  2. Paul Fox‏ @Rocket_Snail May 29
    Well written? Surely, only newcomers to English can be excused for writing "... In both cases disease-focussed treatment is commonly ineffective in relieving the fatigue, whereas, illness focussed treatments such as CBT and GET, can be..."

    1 reply .1 retweet6 likes

  3. It'sME(Jaime)‏ @exceedhergrasp1 May 29
    Anyone can misplace a comma. It's tougher to so regularly misplace one's moral centre.
Nice one @JaimeS :)
 
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