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

[bobbler]

Surely fear is an emotion that is experienced as fear that the person is consciously aware of. If someone has a fear that stops them doing an activity, that is medically called a phobia. You can't be unaware of your own phobia.

If it's buried in a primitive part of the brain and we aren't aware of it, then it is not fear. I think you are describing something else.

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.

 

[jnmaciuch]

I think this is a really fair point.

My answer would be that when you go through brain retraining, you start to spot certain signs in things people say that indicate it might work for them. So when people are adamant they've tried it and it hasn't helped them, the point about nudging them to look at bits they might have misunderstood is only to try to help them. That is all. I've seen it time and time again that people get stuck, get help to approach things from a slightly different direction and then they manage to start recovering. That makes it worth talking it through. People all learn in different ways. My friend gave up six months in to trying this work as she was getting nowhere. She came back to it 6 months later, tried using a different book and everything fell into place and she is now getting fully better. I have never turned around to her and gone 'SEE!' because actually, I think she's so brave to have come back to the work at all.

What this should never be is a process of shaming anyone or continually moving the goalposts as you describe. For some people, the timing is wrong to do this work or it simply isn't the right approach for them. That is completely fine. I always try to communicate that. You are, I'm sure, an intelligent adult who has given something your best shot and you have every right to then leave it there. Respect to you for even trying.

Why do I tell people 'I thought the same thing before it worked for me' when that might feel gaslighty. Because I need to circle back to the whole reason I am posting here. People get so stuck on the stupid PACE trial, on CBT, on how they have tried 'thinking positively' and none of that relates to what got me better. Many do genuinely not get brain retraining. If you do, great and I'm so sorry it didn't work for you. I really hope you find the answers you're looking for. I feel no desire to push you to keep trying something you don't want to. Really.

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.

 

[Utsikt]

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):

We further propose that the symptoms are more likely to persist if they are perceived as threatening, and all activities that are perceived to worsen them are avoided. We also question the idea that the best way to cope with the illness is by prolonged rest, social isolation, and sensory deprivation. Instead, we propose that recovery is often possible if patients are helped to adopt a less threatening understanding of their symptoms and are supported in a gradual return to normal activities.

 

[Trish]

Sorry if I misremembered your comment, and I can't find it now. Stress is not simply about trauma, it's about combined load. Exercise, infections, work, lack of sleep, etc. all add to that load.

Then why aren't all the stressed people in the world, which is probably practically everybody at some stage in their lives, suffering from ME/CFS?

A walking test is objective, but is not an objective measure of ME/CFS. Mild patients aren't likely to have much if any difference in walking after recovering.

What do you base that assumption on?

Do you have examples where patients that are at least 50 % physically impaired with an illness that do not show any clinically significant improvements in e.g. 6MWT or ISWT when their illness improves or resolves?

The participants in the PACE trial who managed to do the end of trial 6 minute walk test were on average only able to walk a little further, many walked shorter distances, and a significant number didn't manage to to the test at all, even though the managed to fill in the questionnaires. The distances walked were still at the level of sick people, nothing like the distances a healthy person can walk or the improvements shown by people with other conditions after 12 months of rehab.

I think that shows very clearly that people with mild to moderate CFS as defined at the time were not objectively helped to improve their physical health after 12 months, added to the fact that there was no improvement in the step test and in employment. I think you are wrong. A mild patient who has recovered should have been able to walk much further, done significantly better on the step test and been able to return to work and stop claiming sickness benefits.

 

[Kitty]

We further propose that the symptoms are more likely to persist if they are perceived as threatening, and all activities that are perceived to worsen them are avoided. We also question the idea that the best way to cope with the illness is by prolonged rest, social isolation, and sensory deprivation.Instead, we propose that recovery is often possible if patients are helped to adopt a less threatening understanding of their symptoms and are supported in a gradual return to normal activities.

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.

 

[Trish]

No. And that is a problem, but I don't personally believe a brain retraining study would be allowed to go ahead on M.E. as things stand. I said that in an earlier post and someone responded saying they would be ok with that, which is great. But I don't think most people would be ok with thousands to millions being spent on it instead of biomedical research. There would be uproar. The MEA would speak out against it. Patients would say they feel it would do them harm because it's just like CBT and GET (it isn't). There would be huge pressure on the research team to stop.

I think you are wrong. Objections to PACE and to a Norwegian study of LP have been objected to before starting on grounds of bad trial design, financial and other conflicts of interest of the trial principal researchers, lack of objective primary outcome measures, and lack of equipoise in control groups.

A properly set up study of brain retraining for ME/CFS would have to inform patients fully in advance that the methods being studied have no validated scientific basis for ME/CFS and may not work, and if they don't it's not a sign of failure on their part.

They would need to provide properly informed consent on that basis, and be selected for the treatment and control groups at random from patients who had no prior experience of or beliefs about the therapy. There would also have to be a debrief afterwards for those for whom the treatment failed, to overcome any sense of personal failure and to provide good management advice and support.

And a control group with equipoise, ie being given the same number of sessions of a supportive and positive sounding therapy, perhaps a combination of mindfulness and help with practical home support to reduce stressors and enable better pacing.

The therapists for both groups would need to be open minded about whether the treatment would work, and have no financial or other conflict of interest in the therapy. I think it would be important that the therapists had not gone through the therapy themselves and been convinced it worked, as they need truly open minds.

For outcome measures, if the participants were provided with wearable activity monitors and a symptom recording app, and did an exercise challenge and a battery of cognitive tests before and after the trial, and a year later, then I think many pwME would accept it as a valid study. I would even consider participating myself, if I were younger.

 

[Trish]

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.

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 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)?

Thank you @jnmaciuch for explaining so well the risks to pwME of therapies of this sort, and the messianic zeal of their converts. And thank you @Utsikt for articulating legitimate concerns.

While I understand that it is natural for someone who has recovered from whatever illness they have been suffering from and wants to share that good news with others, I find something odd about people who have recovered egging other people on and staying around in support groups for years after recovery, when they must know the harm their persuasive techniques can cause.

LP actually builds this into their system, telling people part of their recovery is that they have to tell everyone they are recovered, and encouraging them to become trainers, in a sort or pyramid selling scheme.

I've seen it in a different form in more than one different therapy where some people get sucked in and end up spending their weekends at therapy workshops and dropping their other friends, making this their friendship group where they feel like the relationships are more 'real'. It can rapidly become very toxic for those who are desperate for help but for whom the method fails, and can destroy family relationships where one member becomes a convert.

All psychological therapies carry a real and recorded risk of causing harm by convincing those for whom they don't work that they are failures.

This can do immense psychological damage to individuals. It also damages the whole illness community, as we are seeing with the current publicity in the UK for Suzanne O'Sullivan's book in which she claims ME/CFS, Long Covid and many other chronic disabling conditions are over diagnosed, psychosomatic, and the brain misinterpreting symptoms as signs of illness rather than as normal variations of health. Or something. This perpetuates societal stigma, disbelief, medical gaslighting and increases cuts and barriers at government level with disability financial support.

There is something odd about people who have recovered from a condition hanging around in online groups of sufferers egging them on to try an unproven treatment, and individuals with clout based on unrelated status using their status to publicise the treatments. People who do that may have convinced themselves they are being helpful, but in fact they are gaslighting thousands of sick people, undermining the credibilty of our lived experience in the eyes of all around us, and pushing more to try and often be made worse by quackery like LP.

By all means share your recovery story and what you did that you attribute that recovery to, but the hard sell is not welcome. This is a scientific forum, not a sales forum for unevidenced treatments.

I remind everyone on this thread that we have a rule covering this:

Rule 5: No medical advice
a) Members may offer or request opinions and personal experience regarding seeking a diagnosis and treatment, but they may not diagnose or recommend treatments to each other, nor request such diagnoses or recommendations.

b) Treatment recommendations are also inappropriate if contained in a protocol which purports to be broadly applicable based upon a diagnosis or other characteristic, or includes a process for determining which people should try specific aspects of the protocol.

 

[Jonathan Edwards]

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.

 

[Utsikt]

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.

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

 

[Andy]

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

 

[JemPD]

I think you are wrong. Objections to PACE and to a Norwegian study of LP have been objected to before starting on grounds of bad trial design, financial and other conflicts of interest of the trial principal researchers, lack of objective primary outcome measures, and lack of equipoise in control groups.

A properly set up study of brain retraining for ME/CFS would have to inform patients fully in advance that the methods being studied have no validated scientific basis for ME/CFS and may not work, and if they don't it's not a sign of failure on their part.

They would need to provide properly informed consent on that basis, and be selected for the treatment and control groups at random from patients who had no prior experience of or beliefs about the therapy. There would also have to be a debrief afterwards for those for whom the treatment failed, to overcome any sense of personal failure and to provide good management advice and support.

And a control group with equipoise, ie being given the same number of sessions of a supportive and positive sounding therapy, perhaps a combination of mindfulness and help with practical home support to reduce stressors and enable better pacing.

The therapists for both groups would need to be open minded about whether the treatment would work, and have no financial or other conflict of interest in the therapy. I think it would be important that the therapists had not gone through the therapy themselves and been convinced it worked, as they need truly open minds.

For outcome measures, if the participants were provided with wearable activity monitors and a symptom recording app, and did an exercise challenge and a battery of cognitive tests before and after the trial, and a year later, then I think many pwME would accept it as a valid study. I would even consider participating myself, if I were younger.

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)

 

[rvallee]

PACE had an objective measure: a walking test.

And employment: no change.

 

[Utsikt]

Incidentally, @Friendswithme ... Hi, I wonder if you would mind/are able to please breaking up your paragraphs into smaller ones when you comment - with just 3-5 lines per para (approx.) 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’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.

 

[rvallee]

The fact is that they formulated a hypothesis that was disproven by their own study.

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.

 

[rvallee]

I am repeating myself but not currently. No. And that is a problem, but I don't personally believe a brain retraining study would be allowed to go ahead on M.E. as things stand. I said that in an earlier post and someone responded saying they would be ok with that, which is great. But I don't think most people would be ok with thousands to millions being spent on it instead of biomedical research. There would be uproar. The MEA would speak out against it. Patients would say they feel it would do them harm because it's just like CBT and GET (it isn't). There would be huge pressure on the research team to stop.

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.

 

[rvallee]

indeed. Claim it is thousands recovered but at best a few actual 'testimonials' (in commas as many - of the ones posted, because there aren't many anyway - don't follow the normal etiquette regarding these)

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.

 

[Utsikt]

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.

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.

 

[dundrum]

Then why aren't all the stressed people in the world, which is probably practically everybody at some stage in their lives, suffering from ME/CFS?

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/

The participants in the PACE trial who managed to do the end of trial 6 minute walk test were on average only able to walk a little further, many walked shorter distances, and a significant number didn't manage to to the test at all, even though the managed to fill in the questionnaires. The distances walked were still at the level of sick people, nothing like the distances a healthy person can walk or the improvements shown by people with other conditions after 12 months of rehab.

I think that shows very clearly that people with mild to moderate CFS as defined at the time were not objectively helped to improve their physical health after 12 months, added to the fact that there was no improvement in the step test and in employment. I think you are wrong. A mild patient who has recovered should have been able to walk much further, done significantly better on the step test and been able to return to work and stop claiming sickness benefits.

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.

 

[Jonathan Edwards]

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.

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).

 

[jnmaciuch]

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.

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.