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

And fear and the idea of 'subconscious fear' nonsense (I say this as someone from a psychology background offended by someone trashing the subject by suggesting that BS that has always been an area scientific psychology has pointed out isn't proven ... to put the whole really it is just the irresponsible weaponising terms only meant for the responsible side of the subject given how much harm they can used for by those without good intentions and follow-through in mind)


Well it doesn't matter which one it is because it would in either case be this theoretical 'mediating factor' in their theory.... which is that it causes deconditioning. or causes exhaustion. And deconditioning 'treatment' and 'fear-avoidance CBT' have both been proven not to be helpful, nor either the cause or what is behind ME/CFS.

Plus of course most ME/CFS people do more than most people who are from bps - both before they get ill, and after, due to bps deliberately having constructed a dystopian bullying situation for pwme 'as treatment' for the last 2 decades (and before that) whilst they didn't have to live in that.

Basically for what they claim to be true it is actually incumbent on them to prove pwme all did significantly less than themselves, and indeed less than healthy but lazy people who stay without ME/CFS, nevermind the often much higher levels they are forced to damage themselves with.

But they don't like proof so just go around name-calling and pretending suggesting it's fear and they are so stupid (women) if they claim they aren't then they just 'don't realise they are fearful' misogyny nonsense instead, because actually the stats prove otherwise.

PACE forced people, literally forced it, and tanked people's health. SO what the heck does this crud - other than as slander , and silencing - have to do with the price of eggs for anything related to a serious illness other than an attempt to spread bigotry and waste the energy of those with an energy-limiting condition.



I'm not seeing, after plentiful polite requests, any papers that actually relate to any claims made actually ever listed (just 'see these show x' then 3 links to papers where there is nothing of the sort that I could find) from these individuals. Just rhetoric/sophism. It isn't acceptable to make so many unpleasant unreasonable claims and then still many pages on think you are above citing anything other than your own mindset and quoting a few mates and one-liners to justify it, by that point they are unjustified assertions.

 

I appreciate you being willing to hear me out and sharing how you try not to pressure others you know into brain retraining.

I also appreciate the acknowledgement that brain retraining just might not work for me. Unfortunately, in my experience, I have not encountered many people who are able to admit the same thing after seeing me try and fail to get better using any cognitive reframing method, including what you describe with brain retraining.

In my case, it took three years to realize that it won’t help me. At this point I think the time I spent doing introspection was worth it solely because I needed a space to process my grief and other issues relating to family dynamics, even if it did nothing for my ME/CFS. But that was three years where I was convinced that I just wasn’t working hard enough at it because I hadn’t seen any symptom improvement.

I am genuinely very lucky that the therapist I had was capable of admitting he was wrong. Because at the time, I was living with my parents, depending on them financially, and they were listening to him over me about what it would take to make me better.

As @Hutan already mentioned, we know the stories of family members withdrawing support because they have been convinced that the sick family member just needs to get in the right head space and they’ll be fine. I was genuinely worried that my family members might try to coerce me to move back on campus in an attempt to “encourage” me to get over my body’s “fear” of school.

So I understand why you are so passionate about these methods, I’m genuinely happy they worked for you. And in a different societal context, I think it might be possible, with a lot of care and qualifications, to discuss these ideas without causing harm. However, the situation that pwME are in is already one where our autonomy and wellbeing is constantly at risk due to systemic biases.

even if brain retraining has a different theoretical basis than other BPS models, it exists within the history and context of those models and how much damage they have caused. Ultimately it doesn’t matter how this theory differs from other theories, because it will inevitably be used as just one more thing to argue that those of us who are still sick just didn’t spend enough time finding the “right” method.

Added: The idea that a debilitating illness can be cured by cognitive restructuring alone, without certainty of who it will and will not work for, is a dangerous thing because of the lack of falsifiability. Without hard proof that these methods work, or at least clear falsifiability conditions and accurate predictions of who they will and will not work for, it becomes one more tool used to continue questioning all of our autonomy.

I don’t think I can ever support that even if it does come from good intentions.

Because it’s not isolated incidents of bad actors—for me it actually ended up being the entire experience until 3 years in. I think the ones who can walk away with no consequence despite still being sick are the lucky ones.

 

+1 to this.

And it raises some important questions:
At the risk of repeating myself:

When do you encourage someone to stop trying ‘brain retraining’?

And if you do, do you clearly state that the fact that they did not improve, strongly indicates that their symptoms are not caused by aberrant conscious or unconscious thought patterns, etc. (or whatever the model implies is at fault)?

As far as I know, Lekander & Co (OCFC) believe that most people can improve through the methods you describe (or something similar):

 

I'd be very interested in their theory to explain what happens to your brain if you never stop those normal activities. If you're in full time work and not only do you not know you have ME/CFS, you've never heard of it. If you don't consider yourself suffering from the symptoms you supposedly need to adopt a less threatening understanding of, because you assume it's part of normal adult life.

What's ME/CFS then?

That was my life for 23 years. I went through the same experiences as my classmates: excited by live music, plodding along in a dull office job, going out on protests, feeling happy and content, being really unwell, falling hopelessly in love, trying to help my collier relatives through the miners' strike, feeling incredibly bored, being over the moon at getting a new job.

It never once occurred to me I had a long term illness. ME/CFS fluctuations were linked to my menstrual cycle, and in a family with crippling endometriosis, none of it looked very unusual. I waved away the rest of it as picking up a lot viruses from working in open plan offices. The people around me were forever complaining about being knackered and everything hurting; that's how I felt, so as far as I was concerned I was living the experience of normal women. It somehow escaped me that I was between two and four decades younger than most of them.

I've no doubt all of that can be explained away—the rule seems to be that there are no rules. Theories can be stretched in any direction to explain every situation, and there's no need for them to be falsifiable or even rational.

 

So it seems that the up to date Brain Retraining theories derive from 'Schubiner and Gordon's ideas'.

I looked up PubMed for Shubiner and Gordon and found 3 entries. One is the back pain trial we have analysed. Another is about patient experiences from the same trial and the third seems to be a response to a letter pointing out problems with the trial.

So it seems that the trial might be taken as an indicator of these authors' ideas?

The ideas seem to centre around theories of psychological contributions to pain. But the trial shows clearly that its designers have no understanding of the way psychological factors are likely to contribute to the reporting of pain in trials. As a result the data from the trial isn't any use as a test of a theory of psychological contributions to pain itself.

As someone who saw patients with back pain every week for thirty odd years I find it very difficult to believe that psychology has much to do with it. Non-progressive back pain (the common sort studied in the trial) is nearly always located between L4 and S1 levels. Nearly everyone develops structural deterioration of intervertebral discs and their attachments at precisely this level - which is why sciatica nearly always affects roots L4, L5 or S1. I have no doubt that psychological factors will affect the way people with back pain describe it and respond to it in social situations but for the reasons given above the trial tells us nothing about whether psychological factors actually affect the pain. They might do, but that needs to be tested in a competent fashion.

 

Could it be that they authors hold the philosophical view that pain only exists if you report that it exists?

 

The PACE trial has been referenced here a number of times, so I thought it might be worth pointing out that we have a PACE briefing document designed for those who are not fully aware of the issues with it, Science for ME PACE Briefing document

 

Wow i'd be really thrilled if a study like this could be done. Then we'd know once and for all!
For those it helped we might be able to elucidate why it helped them and not others and if no benefit was shown we could all stop wasting our energy debating it.

Incidentally, @Friendswithme ... Hi, I wonder if you would mind/are able to please break up your paragraphs into smaller ones when you comment. I want to read what you're saying but I just cant read long paragraphs because the lines all merge together & it becomes impossible, so I cant read it.

I know many other people with ME/CFS also struggle with it so guessing they'd find it useful too

Edited: to remove a suggestion for number of lines (since people are using different device screen widths)

 

And employment: no change.

 

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.

 

And because it's emblematic of the ideology and its industry, unrelated to ME/CFS, a pragmatic trial involving some of the same researchers did the same thing with seizures that don't show up on the standard epilepsy tests. Their trial led to no reduction in the primary outcome they specified in advance, and they still said it was effective. Because they asserted from the start that it would be, and the medical profession tolerates it.

Because all this ideology does is assert that some things are effective, and even when research shows otherwise they continue anyway. This isn't about ME/CFS specifically, the entire industry is a house of cards built on beliefs. It has nothing to do with ME/CFS specifically, all the same flaws exist in all things psychosomatic, whether the modern "brain retraining" kind, of the old Freudian stuff, all of which overlap by at least 90%.

The same thing has been repeated exactly with Long Covid. All the same mistakes. All the same initial assertions not validated by research, but are still being asserted. They take advantage of natural recoveries, and don't bother with the millions of people who are still ill. So many that it's breaking disability systems in many countries.

Nothing out of this discipline can be taken at face value. They have never shown any evidence for their claims, and it's only because the medical profession is incapable of accepting the limits of their knowledge that the ideology is perpetuated.

 

There have been many such studies already. And the problem is precisely as @jnmaciuch said: they just move the goalposts, including simply deciding after the fact that, if they failed, then they weren't properly done. Which is a primary feature of pseudoscience.

PACE was sold as the definitive trial. The big one that would settle the issue of whether exercise works. It didn't settle it. They had a null result, and they cheated to present a fake positive one. And nothing has changed either way since. In the end, participants still had on average the physical function of a 78 year-old. And they called it "back to normal". This is not serious. In fact it's plainly fraudulent.

There is no way we could actually stop such a study. We have no power over any of this. They keep happening all over the place for this reason. There have been multiple studies like you want to have happened, studies like FINE, SMILE and many others elsewhere. Most of them focused on some imaginary fear avoidance and all the brain retraining stuff.

There have in fact been dozens of such studies, but you don't know that, because they're simply ignored since they didn't pan out. So will all the future ones. They will be funded. They will have terrible methodology. Their results will be uninterpretable, and more will keep happening anyway. Just like with peptic ulcers, it will only end once the problem has been solved.

Sorry but this is simply pseudoscience, not a legitimate field of study. Real professionals don't behave like this. People with a product to sell do. There are decades of history you are not aware of, all that you suggest to happen already has. It's why things are so broke, why medicine was caught completely by surprise by Long Covid, and still doesn't know how to treat it.

 

RecoveryNorway also loves to boast about this. We know that many thousands, probably tens of thousands, have been through those courses. They made millions out of this. In some countries, people have to at least try it.

Their website has fewer than 100 testimonies. Many of the testimonies are current employees, owners or promoters of the Lightning Process. The testimonies are also about as convincing as what an average acupuncture or homeopathic clinic would boast. Because it's fundamentally the same thing.

This is a lot like the claims many of the ideologues have made about us, how we are dangerous activists harassing and threatening researchers, when in reality those claims have been debunked, and the best they could do a few years ago when a few of them held a private conference was that someone once through a cup on the floor in anger at being thrown out from speaking in, I think, a conference.

The claims started with death threats, being more dangerous than an actual war zone (the Iraq war). Then it was harassment. Then trolling. Then just 'vibes'. Just like thousands turn into a few hundred turn into basically a few dozens.

All the marks of a giant con built on pseudoscience.

 

Let’s not forget the NIH study where they just didn’t say anything about effort preference before publication. They held meeting discussing the findings and withheld the thing they tried to make out to be the most important finding afterwards.

So even if ‘we’ had the power to stop terribly founded studies, we might not even know about them until it’s too late.

 

Why aren't they all suffering from PTSD, sleep, disturbance, migraines, chronic fatigue, depression, anxiety, chronic pain, tension headaches, or IBS, all of which can be caused by stress? Oh wait, they are! Around 75% of Americans reported to the American Psychological Association that they experienced a physical or mental symptom of stress in the last month. https://www.singlecare.com/blog/news/stress-statistics/

And yet their 6mwt was significantly improved over baseline (for the GET group), even though it was a fairly small increase. I'm not saying that GET is the answer. Clearly it's problematic. But it doesn't help to ignore the facts.

 

This seems to be lowering the debate to a very trivial level. The question was about ME/CFS. I had a mental symptom of stress this month - a night of insomnia related to a large unpaid bill. The two are not comparable. And of course the citation does not take into account the psychology of psychologists asking how many people have their favourite symptoms (and the psychology of the responses).

 

Which could easily be explained by participants in the treatment arm simply being willing to push themselves a little harder and ignore real negative consequences for the sake of "proving" that they aren't fearful of activity or whatever they were primed to believe.

Added: The improvement was well within the range of what pwME report when having to push themselves beyond what they know they can do without triggering PEM due to necessity.

I have a feeling that I'd also do significantly better on the 6MWT if I was being chased by a lion. I don't think that means that lions are an effective intervention for ME/CFS.