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The Mental Elf: A PACE-gate or an editorial without perspectives? Kjetil Gundro Brurberg

Large Donner

Senior Member
Messages
866
A large number of trials have consistently shown that cognitive behaviour therapy (CBT) and graded exercise therapy (GET) may be supportive for patients with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) (Larun et al, 2016; Price et al, 2008).

What objectively does that mean? May be supportive for patients with chronic fatigue syndrome/myalgic encephalomyelitis? Very interesting as it actually seems like a concession that it doesn't cure or improve any symptoms...but it may be "supportive". Meaningless!!

This observation tells us nothing about the possible or plausible causes of the disease. It is worth noting that the effects of CBT and GET in CFS/ME are similar to those seen among patients with other serious diseases where fatigue is a prominent symptom, e.g. cancer (Furmaniak et al, 2016) and multiple sclerosis (Heine et al, 2015; van den Akker et al, 2016). The benefit of CBT and GET does not imply that we can conclude that cancer, multiple sclerosis or CFS/ME occur for psychological reasons. It is difficult to understand why the benefit of CBT and exercise in patients with cancer and multiple sclerosis seems widely accepted, whereas the usefulness of CBT and GET for patients with CFS/ME remains controversial.

If the effects are similar to those seen in MS and cancer the PACE trial then proves both CBT and GET to have zero efficacy in both cancer and MS aswell as ME.

Lastly people with cancer either die or get better. If they get better its because of chemo not because of GET or CBT they just happen to improve their symptoms at the same time as receiving GET and or CBT because they are on the road to recovery from chemo after having the cancer treated.

With MS there is zero proof that a GET CBT model aimed at correcting false illness beliefs has any efficacy and like cancer there is also bio medical treatments available alongside any "may be supportive" offerings.


If this is all they can claim it really says something......

cognitive behaviour therapy (CBT) and graded exercise therapy (GET) may be supportive for patients with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME)
 
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2,391
Location
UK
What objectively does that mean? May be supportive for patients with chronic fatigue syndrome/myalgic encephalomyelitis? Very interesting as it actually seems like a concession that it doesn't cure or improve any symptoms...but it may be "supportive". Meaningless!!
Hitting an engine with a large hammer may make it run better ... but then again it may not.
 

Snow Leopard

Hibernating
Messages
5,902
Location
South Australia
I'm skeptical this is a real patient. It sounds exactly like the PACE authors. There's no personal story. If you took the "patient status" away from the post, what would be left? Basically an argument to authority.

I think you're right. Who would say "safely applied as it was in PACE", rather than just safely?

Patient reported outcome measures have been criticised in the particular contexts of where objective measures are far more relevant and valid.

Note how only general articles were mentioned - none have considered the Chalder Fatigue Scale and none consider CFS or ME patients.
 

Snow Leopard

Hibernating
Messages
5,902
Location
South Australia
Yes, there are other tell tale signs also, "distorted narrative", is reminiscent of what the PACE PIs might say.

I wonder if we could compare this text to others from PDW to see if there is commonality.

Googling "distorted narrative" and pace trial doesn't reveal anything.

I think the comment was written by one of the Mental Elf cheerleaders.
 

halcyon

Senior Member
Messages
2,482
CBT as applied elsewhere, such as cancer, is a very different therapy.
This is often said, but is it really true? The intention (and often stated outcome) of CBT use in cancer, MS, etc. is a reduction of fatigue/pain and increase in quality of life/functional capacity. Yeah, the CFS CBT model goes a step further and talks about the presumed psychosomatic etiology, but on a high level the treatment model seems identical to me. Once the organic etiology of CFS is elucidated, my guess is that these people will still be pushing the same CBT treatment, just tweaking how they talk about the underlying model slightly.
 

RogerBlack

Senior Member
Messages
902
This is often said, but is it really true? The intention (and often stated outcome) of CBT use in cancer, MS, etc. is a reduction of fatigue/pain and increase in quality of life/functional capacity. Yeah, the CFS CBT model goes a step further and talks about the presumed psychosomatic etiology, but on a high level the treatment model seems identical to me.

It's very much not.
CFS CBT goes beyond CBT to active symptom denial, which leads to 'pushing through', which many believe can cause severe long term worsened disability.

CBT - if it was 'don't think overly about your symptoms and how they ruin your life, but how your symptoms allow you to maximise your available energy' - would be great.

For CBT for cancer to be similar, it would be about teaching patients not to worry about new lumps, and to accept their body image as beautiful.

https://www.nice.org.uk/guidance/cg...general-management-strategies-after-diagnosis

CBT for a person with CFS/ME should be planned according to the usual principles of CBT, and should include:

  • Acknowledging and validating the person's symptoms and condition.

  • Explaining the CBT approach in CFS/ME, such as the relationship between thoughts, feelings, behaviours and symptoms, and the distinction between causal and perpetuating factors.

  • Developing a shared formulation and understanding of factors that affect CFS/ME symptoms.

  • Agreeing therapeutic goals.

  • Tailoring treatment to the person's needs and level of functioning.

  • Recording and analysing patterns of activity and rest, and thoughts, feelings and behaviours (self-monitoring).

  • Establishing a stable and maintainable activity level (baseline) followed by a gradual and mutually agreed increase in activity.

  • Challenging thoughts and expectations that may affect symptom improvement and outcomes.

  • Addressing complex adjustment to diagnosis and acceptance of current functional limitations.

  • Developing awareness of thoughts, expectations or beliefs and defining fatigue-related cognitions and behaviour.

  • Identifying perpetuating factors that may maintain or exacerbate CFS/ME symptoms to increase the person's self-efficacy (sense of control over symptoms).

  • Addressing any over-vigilance to symptoms and related checking or reassurance-seeking behaviours by providing physiological explanations of symptoms and using refocusing/distraction techniques.

  • Problem solving using activity management and homework tasks to test out alternative thoughts or beliefs, such as undertaking pleasure and mastery tasks (tasks that are enjoyable and give a sense of accomplishment).

  • Building on existing assertion and communication skills to set appropriate limits on activity.

The whole lot (some deleted, and some highlighted is problematic.
There is the underlying assertion that the whole pathology of the disease is fear-avoidance, with no other pathology. The 'provide physiological explanations' part for example is to instruct doctors to lie to patients (the supposed hypothesis makes no sense from an exercise physiology point of view).

This is not neutral or harmless therapy.
It is DANGEROUS, and sets the scene for worsenings possibly meaning people spending the rest of their lives in bed, or housebound.

It is doubly dangerous as non-compliance may have other consequences.
 
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Messages
724
Location
Yorkshire, England
You're right @RogerBlack, the CBT is nearly identical to what I would expect for Exercise Phobia (if such a thing existed)

I own a CBT manual for Agoraphobia and Panic Disorder, so I can easily compare, and it clearly is CBT for a phobia.

PACE proponents often use language from the manual, and I find it easy to spot, they just use words with obscured meanings from everyday use.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
I use a different word - Fraud

Frankly IMO fraudulent research should face prosecution.
Fraud has to be proved, even if its strongly suspected. Pseudoscience is more easily demonstrable. To prove fraud you need a whistleblower or documented evidence that will stand up in court. Most cases of scientific fraud, even when people are indirectly harmed, have no legal consequences. The consequences tend to be social. To take people to court over alleged harm from fraud requires direct and documented harms. Its really hard to do, and it could be expected that the person taking it to court might have to pay costs on a failed case.

Pseudoscientific movements operate via social and political means. Identifying something as pseudoscience also does not require proving intent or harms.

Scientific fraud, as opposed to criminal fraud, is easier to prove. It also has no legal consequences in most cases, though anyone who paid for the research might have a civil case. The usual consequences are social ... loss of prestige, inability to publish or get grants, and for doctors it can include the loss of their medical licence.

I do however wonder what the legal standing of any patient of these doctors would be if they could demonstrate harm.
 
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15,786
DW said:
It is reassuring to read such a detailed and informative article. As an M.E. sufferer I have become increasingly incredulous of the criticism of the PACE trial. The more I have read the original trial publications rather than relying on second hand accounts, the more apparent it has become that a distorted narrative has arisen that does not serve the best interests of people with M.E. It would be far more productive and fairer to all involved if those who want to advocate genuinely for people with M.E. could focus on the broader issues such as ensuring that where patients undertake CBT/GET that it is safely applied as it was in PACE and therefore does not result in harm, on promoting better treatment from the broader medical profession for people with M.E. and on correcting common misconceptions among patients about what the PACE trial does or doesn’t say.

Perhaps some of the accolytes really believe the lies told them by the BPS inner circle.

I became aware many years ago that there are groups out there that really believe in the PACE trial, and that both CFS and ME are mental disorders. Its sad that they do not engage with the science.

I sometimes stumble upon these deferential patients who hate the fact that other patients are challenging authority, and feel that it gives them a bad reputation. Doesn't seem surpriusing to me that some genuine patients would be suckered by a blog like this.

I don't doubt there are real ME/CFS patients out there who honestly believe that PACE is right. But "DW" is not one of them.

The only way a patient could ever have such a belief is by not reading the research or any criticism of it. Skimming the abstract only of pro-PACE papers would allow it to stand, but there are so many blatantly obvious problems that DW's claims of having read it all are simply incredible. As in, his claims are not credible, and he's certainly lying. Lying about being a patient, lying about having read PACE, and/or lying about having read any critiques.

He might be a patient, but if so, everything else he said is still a lie. And unlike the comments critical of the Mental Elf blog post, DW offers literally no support for his pro-PACE claims.
 

Cheshire

Senior Member
Messages
1,129
I don't doubt there are real ME/CFS patients out there who honestly believe that PACE is right. But "DW" is not one of them.

The only way a patient could ever have such a belief is by not reading the research or any criticism of it. Skimming the abstract only of pro-PACE papers would allow it to stand, but there are so many blatantly obvious problems that DW's claims of having read it all are simply incredible. As in, his claims are not credible, and he's certainly lying. Lying about being a patient, lying about having read PACE, and/or lying about having read any critiques.

He might be a patient, but if so, everything else he said is still a lie. And unlike the comments critical of the Mental Elf blog post, DW offers literally no support for his pro-PACE claims.

If DW is a PACE supporter, the irony is that his assertion is built up on the argument of authority (present yourself as a patient, give no explanation, just say read the text). But he doesn't seem to realise that argument of authority doesn't work at all for patients.

And BTW, DW is the only one to present themself "as an M.E. sufferer", (while talking like no patient would) this in itself is very suspect.
 

Snow Leopard

Hibernating
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5,902
Location
South Australia
I own a CBT manual for Agoraphobia and Panic Disorder, so I can easily compare, and it clearly is CBT for a phobia.

This is interesting, perhaps you'd like to show the clear similarities in a bit more detail?

I don't doubt there are real ME/CFS patients out there who honestly believe that PACE is right. But "DW" is not one of them.

Agreed. Most of the patients who defend CBT or GET are simply the ones who basically say they're willing to take the risk to try anything at all that "could" help, regardless of the quality of the evidence.