Patients with severe ME/CFS need hope and expert multidisciplinary care, 2025, Miller et al

[Utsikt]

I can't help hoping the authors of the original article are reading all the responses with open minds and will be more careful in future, maybe even publish a retraction article. Probably a vain hope.

This article is completely in line with what Pedersen has been saying previously:

Maria Pedersen highlights that for some, the hopelessness has become so great that they have committed assisted suicide or taken their own lives because they cannot bear to live with the disease.

– It is absolutely terrible, absolutely horrible! It says something about how much suffering this patient group is under and how incredibly important it is to convey hope. It is about them believing they cannot recover, but they can, and it is incredibly important to bring this up in the debate, but it often does not come up, says Pedersen.

Auto-translate from:
https://www.nettavisen.no/nyheter/t...nar-de-horer-de-kan-bli-friske/s/5-95-1656273ME, FHI | Taking a stand against ME attitudes: – Some people get provoked when they hear they can get well.

 

[V.R.T.]

This article is completely in line with what Pedersen has been saying previously:

Auto-translate from:
https://www.nettavisen.no/nyheter/t...nar-de-horer-de-kan-bli-friske/s/5-95-1656273ME, FHI | Taking a stand against ME attitudes: – Some people get provoked when they hear they can get well.

Ironically without a BPS approach I likely never would have gotten sick enough to consider assisted suicide.

 

[SNT Gatchaman]

23 rapid responses to date. According to the indexes in the URLs all but 10, 13, 14, 17 have been published.

 

[Utsikt]

Ironically without a BPS approach I likely never would have gotten sick enough to consider assisted suicide.

Exactly. I know far too many that have said the same..

 

[Deanne NZ]

I can't help hoping the authors of the original article are reading all the responses with open minds and will be more careful in future, maybe even publish a retraction article. Probably a vain hope.

I very much doubt they will be open minded in reading the responses. Great effort was made to present facts in the recent “Brain Training” discussions with the two proponents who joined in, but I never got the sense they were open to those facts.

I listened to a podcast interview of Angela Saini, British journalist & founder of the Challenging Pseudoscience Group. She basically said you cannot use facts to challenge believers of pseudoscience. Instead you need to keep probing them to find out why they believe what they do & by helping them to uncover the reasons for their own beliefs it can expose the flaws.

 

[Utsikt]

I listened to a podcast interview of Angela Saini, British journalist & founder of the Challenging Pseudoscience Group. She basically said you cannot use facts to challenge believers of pseudoscience. Instead you need to keep probing them to find out why they believe what they do & by helping them to uncover the reasons for their own beliefs it can expose the flaws.

I doubt the would be willing to engage in that..

 

[Deanne NZ]

I doubt the would be willing to engage in that..

. and it is unlikely the opportunity would present. EDIT - for some reason my Winking smiley emoji did not stick.

 

[JellyBabyKid]

Great effort was made to present facts in the recent “Brain Training” discussions

It wasn't entirely wasted; I found it incredibly helpful and learned things

 

[JellyBabyKid]

I listened to a podcast interview of Angela Saini, British journalist & founder of the Challenging Pseudoscience Group. She basically said you cannot use facts to challenge believers of pseudoscience. Instead you need to keep probing them to find out why they believe what they do & by helping them to uncover the reasons for their own beliefs it can expose the flaws.

Isn't this deprogramming?

 

[Deanne NZ]

Isn't this deprogramming?

Yeah it probably is.

 

[Turtle]

I can't help hoping the authors of the original article are reading all the responses with open minds and will be more careful in future, maybe even publish a retraction article. Probably a vain hope.

I help you hope that.
My feeling is that it's not about their article in the first place, but the responses.
They probbably want to find ammunition to fire back.
@dave30th Does FWM, reacting on your blog of May 24th, write like one of the braintraining gospel group?

 

[Deanne NZ]

@dave30th Does FWM, reacting on your blog of May 24th, write like one of the braintraining gospel group?

Remarkably like @Friendswithme from discussions here.

 

[Trish]

Remarkably like @Friendswithme from discussions here.

I assumed it was the same person.

 

[Jonathan Edwards]

But wouldn’t imposing unrealistic hope on someone, be the same as imposing cruel optimism on them

It sounds as if it fits but Berlant was, I think, talking about something different - a shared optimism in a community that turns out to be causing everyone harm - like driving big cars and flying in jets.

 

[rvallee]

Has this one been shared yet:

https://www.bmj.com/content/389/bmj.r977/rr-19

Lots to like, but particularly:

"The use of biomedical terminology to repackage psychosocial models - referred to in rhetorical studies as “concept laundering” - is another red flag. Referring to “dysregulation” without specifying mechanistic detail allows psychosomatic framings to persist under the guise of scientific neutrality. This ambiguity not only muddles public understanding but also insulates authors from accountability for the models they promote."

That one was excellent. It should not be this easy to school self-appointed experts, as many responses have, but this is grad school level of doing it.

 

[rvallee]

I have not read their book, so my understanding of the concept might be wrong. But wouldn’t imposing unrealistic hope on someone, be the same as imposing cruel optimism on them, i.e. forcing them to believe they can recover instead of letting them see they probably can’t, and adjust their life accordingly?

And if the people in charge of the systems that are supposed to help sick people, believe that the sick people do not need help (due to their unrealistic optimism on the sick people’s behalf), that will conceal the flaws of the systems and the help it provides.

All of which, ironically, is inherently bad as it should not be the role of medicine to do such things. In fact it's a perversion of medicine to do that. It should tell the truth. In fact it's advised to do so, unless special circumstances dictate it. But those special circumstances are applied far outside where it's reasonable, and have in fact become commonplace to the point of being a new, and horrible, standard.

I don't know what's the point of having this co-called "duty of candor" when lying is so generally accepted, mostly in the form of this misplaced, and rather cruel, false hope. When in fact there are many instances when none of the so-called signaled virtues of medicine are respected, such as with us.

When the odds are what they are, when someone has a low % chance of surviving a disease with a verified and credible probability, then it makes sense to at least work with the idea of trying to achieve the less likely, positive, outcome, but this can only reasonably, and ethically, apply when there is treatment that can actually do that. Otherwise people need to be prepared. This is why weather forecasts focus on the worst-case scenarios, so that people can at least prepare for if it happens right where they live.

But of course since the idea that ME/CFS is a lifelong illness for millions is soundly rejected, then it becomes hard to apply ethical common sense. Rejecting reality and substituting their own is almost always wrong, on technical grounds, but here it's ethically, and even morally, Wrong.

 

[rvallee]

Exactly. I know far too many that have said the same..

Almost every desperate post on the LC sub-reddit (and elsewhere) I see not only emphasizes, but centralizes, the lack of hope in effective treatments as pretty much the only reason why they consider suicide. Some of which have gone through. It is by far the #1 factor in despair and suicides. In fact, the psychobehavioral approach has no doubt killed far more pwME than ME/CFS has, because of that systemic hopelessness they impose on millions. It's not even close. And we'd have to add to that all those who die of otherwise preventable diseases that don't get caught because we simply don't have competent health care available to us.

But the quacks misunderstand that they can simply "convey" hope, when in fact what's needed is to do the damn work. Something they obviously can't do. We are not a bunch of stupid children. We can see what the profession is doing, and it's not much to look at. We can see that the medical profession is hopelessly useless in its efforts here. This is rational despair. People will hold on when they see a reasonable chance of there being something soon enough, something worth holding on to. This is not a messaging problem, it's an effort problem.

The worst is how all of this is reaffirmed by most, if not all, medical appointments, showing absolutely no progression, nothing is being learned no matter how much time passes, because medicine is a completely all-or-nothing thing. Without knowing the pathology, nothing they do actually works. This is why people give up hope: because there isn't, and it's all the fault of this damn ideology.

 

[Sean]

In fact, the psychobehavioral approach has no doubt killed far more pwME than ME/CFS has, because of that systemic hopelessness they impose on millions. It's not even close. And we'd have to add to that all those who die of otherwise preventable diseases that don't get caught because we simply don't have competent health care available to us.

This.

 

[Friendswithme]

I help you hope that.
My feeling is that it's not about their article in the first place, but the responses.
They probbably want to find ammunition to fire back.
@dave30th Does FWM, reacting on your blog of May 24th, write like one of the braintraining gospel group?

Hi, I'm still here. I don't think I'm part of any 'brain training gospel group' (what are the entry requirements?!) I just got better using it and know many others in the same boat.