Brain Retraining treatment for ME/CFS and Long COVID - discussion thread

[Utsikt]

It is a hard balance, but we also need to remember that each time people from this background are funded for whatever rationale to do said studies then some of the samepl have to do the actual treatment and that centre gets funded and establishment for that additional period of time where the alternative doesn't (and might not yet exist, or needs to move onto researching another condition).

Are you talking about BPS studies here? If so, this is a point that I had not considered. The money to run a BPS study goes to the practitioners (or at least to pay their salaries).

Just to be clear: I don’t think there is anything in BPS research that makes it appropriate to conduct a BPS study on ME/CFS right now.

 

[bobbler]

Are you talking about BPS studies here? If so, this is a point that I had not considered. The money to run a BPS study goes to the practitioners (or at least to pay their salaries).

Just to be clear: I don’t think there is anything in BPS research that makes it appropriate to conduct a BPS study on ME/CFS right now.

yes and no - whoever it is that is funded to do a study we need to remember that such funding tends to be a rolling stone in their existence. Just the way universities etc work. So whilst some research might be imminently urgent as a priority, it is also worth bearing in mind (though not prioritising) the idea of building a research base eg of people from whichever backgrounds and areas who have experience working on the illness, and institutions that have the infrastructure to work with patients.

Just like clinics finally being like normal clinics for any other biomedical illness and having biomedical physicians and/or scientists as part of them, maybe nurses then provides a base for education and research and recruitment from there are they are in front of and allowed to actually look at and measure in medical ways (which therapists are not - hence why I suspect the big push to keep patients cut off from ever being allowed to see a doctor by insisting on clinics being staffed as they are, cuts out anyone from being able to speak sense in the debate or an individual case, as we see when those with very severe ME end up in hospital and they claim 'only an NHS CFS specialist will be listened to')

once you start research getting into the figures that are involved with doing any substantive research any proper way ie other than the shortcuts and bias involved with some of the bps stuff then you are setting something up for x amount of time, and that gives that something a place and establishes it.

I agree we, ie including everyone beyond pwme, need a debunking unit to cut the huge sector of the health service and its spending that is now just psychosomatic non-medicine as it can narrow down and see precisely which, if any, conditions or individuals might benefit from anything they offer instead of it being imposed errantly because it's a supply-led (funded) situation that creates tail-wags-dog (diagnose with x because that is the only dept that doesn't have a closed waiting list ie the only place we can refer to, and said place never checks diagnosis) problems to keep its territory/reason for being (claimed demand based on footfall of who gets sent through their door).

It probably needs to come from an alliance though given how many other conditions it seems to be drifting into and you know 'the politics' and what is being asked for people to do vs their careers and getting some traction.

In a politer terminology of course there are clinical trials units at various places across the country so I don't see why there shouldn't be at least one with similar stringent standards testing these other areas that are drawing large % of funding that could also bring independence from the hierarchy that dogs and makes blinding so apparently difficult etc.

As I was trying to hint this is a bit of a 'once you break the seal' discussion that might be better on a different thread.

 

[JemPD]

I’m assuming you might be on a laptop, because this paragraph is 9 lines on my phone?

But I agree with using frequent line breaks - walls of text are very difficult to read.

Ah, yes a very good point thank you.

I'm new to smartphones & only view S4 through a laptop. I have edited my post accordingly

 

[jnmaciuch]

@Friendswithme I did actually get a free copy of Lekander's book and spend some time reading the first few chapters. You were right that he is a very good writer, and makes the neuroscience that he discusses very accessible to a layperson. After getting through several chapters, armed with my own prior knowledge of science, I realized that his ability to write about science accessibly is doing a lot to obscure a rhetorical trick that he employs over and over again.

What I see him do repeatedly is take a robust scientific finding and describe it in terms of the possibility that the brain could end up doing something like generating a feeling of fatigue [added:] due to stress or feeling unsafe. At many points, he even makes a show of discussing the limitations of how those studies can be interpreted. But that really just functions as another rhetorical trick for credibility, since he fails to apply the same limitations for the speculations that ground his argument. It's entirely possible he's not doing it maliciously, it's just something that is arising from really believing in his own theory.

One example is with the phantom limb studies that have already been discussed in other threads. What is likely happening in the case of phantom limbs is a repurposing of neurons previously used to process pain signals from one part of the body, leading to a mis-attribution of what a stimulus is actually coming from.

In this case ,"The Neuroscience" shows that in one very specific context where there is a humongous change in the sensory input to one part of the brain, it can lead to the perception of pain from an impossible source. What "The Neuroscience" definitively does NOT show is that this same mechanism (or anything similar, even) is at play in ME/CFS, or chronic back pain, or what have you.

The only thing that "The Neuroscience" shows is that the brain can do some cool things we wouldn't initially expect. It categorically does not show that the brain does do X or Y cool thing in any other context. Simply the possibility of something occurring is poor evidence that it actually is occurring.

 

[jnmaciuch]

The only thing that "The Neuroscience" shows is that the brain can do some cool things we wouldn't initially expect. It categorically does not show that the brain does do X or Y cool thing in any other context. Simply the possibility of something occurring is poor evidence that it actually is occurring.

And to this point, many such as yourself might point to some patient testimonies, or some small gains in clinical trials, to show that their success is retroactive proof that the theory actually is true. To that I would say: it really, really isn't proof.

If your theory relies on the fact that someone's perception and interpretation of their own bodily state cannot be trusted at face value when they are sick, you simply cannot claim that their perception and interpretation of their body after the treatment is proof of its correctness and effectiveness. You're quite literally saying that you can't trust the patient when they say it won't/doesn't work, but you should trust the patient when they say it does work.

That's why, as many have argued across different threads, a subjective outcome measure will never be effective proof that the treatments work. @dundrum I can understand why you say that you need to use subjective measures when nothing else exists, but the nature of any cognitive restructuring technique is such that it inherently invalidates their use. I really really hope you can understand that.

Even if we could prove that these therapies "actually work" by an objective measure, it's not proof that the underlying theory is true. You said yourself @Friendswithme that there are many examples of severe pwME "relapsing" over and over again after somaticisation techniques. In fact, many pwME report similar patterns from things like supplements and off-label medications. Just because a biological mechanism enables you to somehow push through what is wrong for a short period of time does not mean it's reversing the original problem.

What you might be observing in these situations is a very effective mobilization of some backup mechanism that can compensate for whatever is actually wrong for a short period of time. But the fact that relapses keep happening would then be evidence that this backup mechanism cannot be employed long term, and you simply don't know what the risks are of continuing to employ it. And again, because of lack of actual evidence, wild speculations are all that can be done here.

That's why many of us can never get behind a therapy that literally requires gaslighting patients to distrust their own perceptions. If it's:
1) not proven that you're actually right, and
2) you have no way to make sure they're being effectively "deprogrammed" after giving it an honest go, and
3) there's no way to make sure that there is no consequence of failing to get better from this method (wasted money, being disbelieved by family and medical professionals, pushing themselves so much their baseline condition permanently worsens etc.),

then the harms of continuing to push this method as an effective treatment are very substantial!

 

[Andy]

The cost of processing one sample for the SequenceME study is at least £700. So initial genetic studies can be terribly expensive because they require such a large sample size.

Depends on the what kind of genetic study is being done. SequenceME, if funded, would be analysing the full genome; DecodeME, which as a genome wide association study looks at approximately one million locations of the genome where people are most likely to differ, received £3.2m in initial funding to analyse a planned cohort of 25k. While £3.2m is a considerable amount of money, in research terms it's not that much.

 

[Utsikt]

Depends on the what kind of genetic study is being done. SequenceME, if funded, would be analysing the full genome; DecodeME, which as a genome wide association study looks at approximately one million locations of the genome where people are most likely to differ, received £3.2m in initial funding to analyse a planned cohort of 25k. While £3.2m is a considerable amount of money, in research terms it's not that much.

Thank you for explaining!
I believe I was thinking about only whole genome sequencing when I wrote ‘initial genetic studies’, but I realise now that it doesn’t have to be!

 

[Kitty]

That's great, but it is an issue for many patients.

But how do you know?

People here seem to be telling you the opposite, and you haven't offered any evidence of it. You haven't offered very much evidence of anything, really, which is why people keep asking for it.

Any biomedical researcher who comes here and makes assertions, then avoids providing evidence to back them up—and uses diversionary tactics like answering a question that wasn't the one asked—will get exactly the same response.

All we want is good science. Having informed, experienced people try to pick apart hypotheses and papers is crucial to progress, and experienced researchers recognise that opportunity for what it is: a gift.

We want them to succeed every bit as much as they do, but they won't get there on conjecture, assumptions and sloppy trials. Nobody ever did. As soon as you see why it's so important to keep insisting on robust methodology and reliable evidence, you won't be able to miss the glaring problems with the BPS-informed research that's been done so far.

 

[jnmaciuch]

Also, if the same group keeps putting out paper after paper with the same methodological issues, I don't think it is the responsibility of folks on this forum to rehash the same discussion for the umpteenth time. Someone commenting something along the lines of "same crap, different day" is entirely justified.

It's hardly "ad hominem" to make reference to an ongoing pattern of disregard for basic standards of research when the paper in the thread just continues that pattern that has already been discussed at length.

In fact, I've seen tons of instances where folks will chime in to say "at least this paper improved how they measure XYZ" in a paper's favor, even if they think other issues invalidate the findings.

 

[dundrum]

But how do you know?

People here seem to be telling you the opposite, and you haven't offered any evidence of it. You haven't offered very much evidence of anything, really, which is why people keep asking for it.

Because patients are saying it all the time. I'd prefer not to point out individuals, but if you look you will see it is true, and I can certainly point out specific examples in private. (One was mentioned earlier, but was removed). There are many studies that have looked at this as well, and the PACE trial was based on it (you can look at the evidence they reference in their paper). And yes, I'm aware of the issues with the PACE trial.

We want them to succeed every bit as much as they do, but they won't get there on conjecture, assumptions and sloppy trials. Nobody ever did. As soon as you see why it's so important to keep insisting on robust methodology and reliable evidence, you won't be able to miss the glaring problems with the BPS-informed research that's been done so far.

Right now all we really have is patient experience. You really have to believe patients when they say they are afraid to exercise, or are worried their mitochondria are damaged, just as you have to believe patients when they say they are experiencing symptoms.

 

[Utsikt]

There are many studies that have looked at this as well, and the PACE trial was based on it (you can look at the evidence they reference in their paper). And yes, I'm aware of the issues with the PACE trial.

Are you aware of the issues with the studies that PACE was based on?

 

[dundrum]

then the harms of continuing to push this method as an effective treatment are very substantial!

[/QUOTE]

I think you have a number of misconceptions here. These programmes aren't saying random things about the brain. They are based on proven neuroscience, e.g. that fear, stress and expectation upregulate pain. Also, it's not about gaslighting yourself, ignoring symptoms or not trusting your perceptions.

I think that if done correctly there are no serious harms in doing these things. The problem is that when one specific technique is presented as "the cure", and it doesn't work, then patients can blame themselves. I think it's best for patients to research this and apply it to their own situation, looking at the evidence and at various programmes. There is a huge amount of completely free info out there.

 

[Utsikt]

And please, for the sake of your own credibility, stop with the ‘there are many studies’ nonsense. It might be accepted on other forums, but it is not here. You need to bring sources if you want to say that your claims are supported by the scientific literature, @dundrum

 

[dundrum]

Are you aware of the issues with the studies that PACE was based on?

Yes.

 

[dundrum]

And please, for the sake of your own credibility, stop with the ‘there are many studies’ nonsense. It might be accepted on other forums, but it is not here. You need to bring sources if you want to say that your claims are supported by the scientific literature, @dundrum

Yes, and I have always done that here, as you can see from my posts. I don't reference every single thing I say, as you don't either. If there is anything specific that you would like a source for, please ask for it. If I miss your reply, send me a PM.

 

[Utsikt]

Yes.

Then why do you use them to back up your argument?

 

[jnmaciuch]

Right now all we really have is patient experience. You really have to believe patients when they say they are afraid to exercise, or are worried their mitochondria are damaged, just as you have to believe patients when they say they are experiencing symptoms.

again, we’re not doubting that this might be true for some group of people of unknown size.

We’re arguing against the idea that this can be extended to pwME who are not saying this, which is exactly what we observe from BPS proponents time and time again, including in the quotes that have already been pulled up in this thread.

Because clearly these theories aren’t only being applied to people who are raising their hands and saying that they’re explicitly afraid of activity [added:] as an unfounded phobia.

 

[Utsikt]

Yes, and I have always done that here, as you can see from my posts. I don't reference every single thing I say, as you don't either. If there is anything specific that you would like a source for, please ask for it. If I miss your reply, send me a PM.

I would very much like you to provide sources for you claim that there are studies that support the notion that ME/CFS patients are afraid of [insert whatever here], please.

 

[jnmaciuch]

They are based on proven neuroscience, e.g. that fear, stress and expectation upregulate pain.

They are based on evidence that in some specific circumstances, fear stress and expectation may upregulate pain, and then present their treatments to participants as if those claims have already been found to be true in ME/CFS, which none of the existing research supports. For an example of this, you can look at the PACE CBT and GET manuals which are publicly available online.

Added: and yes, if you are made to believe that your specific pain is caused by fear, stress, or expectation when that is not actually true and getting you to that belief involved doubting your own perception of the origin of your pain, that is the definition of gaslighting.

 

[Jonathan Edwards]

It's hardly "ad hominem" to make reference to an ongoing pattern of disregard for basic standards of research when the paper in the thread just continues that pattern that has already been discussed at length.

I am probably as much to blame as anyone for the ad hominem comments. I am suitably chastised by the moderators. But I find it hard not to explete when I see stuff from colleagues I and other members of my family were at medical school with not just repeating bad methodology but deliberately ignoring valid critique and constantly making use of 'ad homines' (at them) denigration of patients who raise legitimate concerns. If patients cry foul they just get laughed at. Maybe if I, as a professor of medicine, cry foul, someone might realise that they aren't that stupid.

People with ME/CFS are rightly afraid of exercising if it makes them ill. I have learnt to be afraid of doing things that at my age lead to sleepless nights because of pain. They are also entitled to believe that their mitochondria are damaged if a doctor says so. But the evidence that either of these things actually perpetuates their illness does not exist. It may do for some but the supposition that it does has never been validated.