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

Utsikt said:
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
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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.
 
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dundrum said:
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.
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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.
 
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dundrum said:
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.
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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.
 
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dundrum said:
They are based on proven neuroscience, e.g. that fear, stress and expectation upregulate pain.
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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.
 
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jnmaciuch said:
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.
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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.
 
dundrum said:
They are based on proven neuroscience, e.g. that fear, stress and expectation upregulate pain.
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Surely @dundrum, you are not expecting the members here to take that as a serious scientific analysis? We have about 50 people here who for ten years have picked over the science of ME/CFS in great detail every day of the week. As a biomedical scientist I am staggered by the level of intellectual rigour here. It beats most departments of medicine into a cocked hat. This sort of statement is a bit like telling Gary Player to hold the club a bit lower down. There are people here who have devised multi-million dollar research projects, people who have published outstanding critiques of the current state of research, people with deep understanding of biochemistry, neuroscience, imaging, immunology, and whatever.

We need something more tangible in the way of directly relevant evidence to take things seriously.
 
dundrum said:
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.
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I'm sorry but this is not a serious argument, and this turned out to be a pointless discussion.
 
jnmaciuch said:
@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. 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.
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@dundrum

Did I read the neuroscience? Yes. I've been reading it for years. Does it prove that fear, stress, or expectation are driving the symptoms in ME/CFS? Absolutely not.

As you said yourself, all you have are testimonies. I believe that some people believe these methods really helped them. That's pretty much all you can take away from it responsibly.

I certainly don't think anyone can ethically advocate any type of treatment on the basis of that alone, especially when it is so easy to do harm with them.
 
@dundrum

I'll wheel out my family's personal experience once again. Members who have read this already can just scroll on.

Some 12 years ago now, I and my two children had what we assume was a gastric flu. We all assumed that it would pass quickly enough, as previous illnesses had. But we all started developing strange symptoms. One of us would say, 'I keep waking up with numb limbs', or some other odd thing and the rest of us would say 'yes, me too!'. We were really exhausted, had headaches, needed to lie down a lot. My son got so exhausted on the football field that he had to stop, he could hardly walk from the field and he lost vision in one eye for 20 minutes. He got joint pain.

At that time, we had all had nice interesting lives, were doing well and looking forward to the future. My children liked school, had friends. We weren't over-stressed, none of us had any history of mental illness and we were all active.

The children struggled to get to school. I struggled to keep working. My daughter continued on with school, she continued to try to keep on with her sport. She was captain on one team, a participant in several others, she competed nationally in one. But, she would come home and go straight to bed and fall asleep. My son tried too, but he couldn't keep going to school, he couldn't walk up the stairs to class, he couldn't think well sitting up for hours at a time, the noise in the classrooms was exhausting.

Eventually we were diagnosed as having ME/CFS, all in one appointment, and the kind infectious diseases specialist said that he was sorry, he couldn't suggest anything but he hoped we would get better. There were other doctors, the paediatrician who also diagnosed my children as having CFS but clearly thought we were all hypochondriacs, and the rheumatologist where the consultation lasted 5 minutes and I went in sat in the car and cried.

My daughter did recover over about two years. I don't think she is completely well now, but she has a very good life. My son did not recover and still has ME/CFS (he also has a pretty good life now, even so). Never once was he afraid of exercise.

One year, he did school work in his bed, or lying in a sleeping bag on the kitchen floor, but he went to football practice once a week, and played a quarter of a game on Saturdays. After trying to go back to school and getting sicker and sicker, he played a game of indoor football and ended up sleeping 20 hours a day for month, with the rest of the awake time spent mostly lying in bed.

Years later, much to my concern, he took up boxing, convinced he just needed to exercise his way to fitness. It didn't work. He still plays the occasional game of football, it still requires him to rest in bed afterwards.

I also assumed I could exercise my way back to fitness in those early years. I tried yoga, which I had previously done, but it was wiping me out. I tried individual pilates classes, 30 minutes twice a week, with a 15 minute walk either way - pilates was also something I had done regularly in the past. But instead, I got worse and worse. It was talking me three days to recover. The pilates people could not understand it and neither could I.

So, when you suggest that fear of exercise or activity or anything is the cause of ME/CFS, that makes me think you don't understand this illness at all. If people develop a fear of exercise as a consequence of repeatedly getting slammed with PEM, that would be entirely understandable.

However, as others have pointed out, for most people they don't even have that consequential fear. In the same way as you don't fear the hot element on the stove and use it to cook your potatoes on but know not to put your hand on it, I think almost everyone with ME/CFS values activity and engages in it to get things done to the greatest extent possible, but they eventually learn not to do stupid things that will damage them.

I don't think a partial/quantity dependent fear really works. e.g. to suggest that someone doesn't have a fear of gardening for an hour but does have a fear of gardening for two hours gets to be a bit nonsensical, don't you agree?

So, I find it both wrong and a bit offensive to be told that people with ME/CFS have a fear of exercise. Clearly some do not. Probably almost all do not. You may say, 'ah, but you don't actually know that you have a fear of exercise, but deep down you do'. But, that really is not consistent with the evidence.

And, there is no evidence that attempts to increase activity fixes anyone with ME/CFS. Check out the Magenta study. That one is also evidence of the harm you can do to someone, by suggesting that they could fix themselves if only they tried a bit harder.

So, please, when you are communicating with people with ME/CFS, bear in mind that we almost certainly do not have a fear of activity. And suggesting that we can fix ourselves by increasing activity can cause many harms, not least, psychological damage. If your version of brain retraining is based on correcting an activity phobia, then perhaps it is useful for someone, but it is not a cure for ME/CFS.
 
Hutan said:
So, please, when you are communicating with people with ME/CFS, bear in mind that we almost certainly do not have a fear of activity. And suggesting that we can fix ourselves by increasing activity can cause many harms, not least, psychological damage. If your version of brain retraining is based on correcting an activity phobia, then perhaps it is useful for someone, but it is not a cure for ME/CFS.
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Let me be crystal clear: I am definitely not saying that all patients have a fear of activity. Of course they don't, and that would be a ridiculous thing to say. It's clearly not true, and your experience (and many others) are great examples of that. However it's also undeniable that many patients do develop a fear of activity, and that fear can prevent natural recovery. It's a mistake to lump all patients together as all having fear avoidance, which is what the PACE trial did. But still, it is a major issue for some patients. Clearly it's not central to ME/CFS, but it is a factor that can inhibit natural recovery.
 
dundrum said:
https://www.sciencedirect.com/science/article/abs/pii/S002239999800021X
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Illness beliefs and treatment outcome in chronic fatigue syndrome
1998, Deale, Chalder and Wessely
I'll make a thread for it if we don't have one. That's quite a blast from the past.


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Illness beliefs and treatment outcome in chronic fatigue syndrome, 1998, Deale, Chalder and Wessely
Physical illness attributions were widespread, did not change with treatment, and were not associated with poor outcome in either the cognitive-behavior therapy group or the control group.
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Apologies, my assumption was wrong. This study actually found that lots of participants assumed they had a physical disease, and it wasn't associated with a poorer outcome.
 
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Jonathan Edwards said:
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.
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Well, as pointed out in my comment above, there is evidence that these things can perpetuate the illness. Sure, we can discuss the quality of the evidence, and it would be great to have more, but this is what we have right now. And you can indeed read the experiences of patients (both recovered and not), and it's very clear that this is indeed an issue for some patients.

As you say, fear of exercise is indeed a valid fear, and is completely understandable. But you must admit that if that fear is taken too far, e.g. never trying to exercise, or never trying to get out of bed), then how does the patient know if it's still a problem? As we know, symptoms fluctuate, and patients tend to very gradually recover naturally (see long term follow up from PACE and the Dutch study which I've forgotten the name of, but you probably know which one I'm talking about).
 
dundrum said:
it's also undeniable that many patients do develop a fear of activity, and that fear can prevent natural recovery
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I think undeniable is an absurdly strong claim.

We have very little evidence of any sort of quality that “fear can prevent natural recovery”.

There are plenty of people making the opposite claim that the more you rest and avoid exercise the higher your chances of recovery (and there is no high quality evidence to suggest that either).

We pretty much have linked nothing with lesser / higher chances of recovery reliably except age, illness duration, and illness severity, as far as I’m aware.
 
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jnmaciuch said:
@dundrum

Did I read the neuroscience? Yes. I've been reading it for years. Does it prove that fear, stress, or expectation are driving the symptoms in ME/CFS? Absolutely not.
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No, and I didn't say that. The research is primarily for pain, and in that case yes there is good evidence that fear, stress, and expectation upregulate pain. In terms of ME/CFS, here is a study showing that expectation affects treatment outcome:

https://www.sciencedirect.com/science/article/abs/pii/S0022399916300319

and that stress management skills reduce fatigue:

https://www.sciencedirect.com/science/article/abs/pii/S088915911200061X

and that fear avoidance is associated with treatment response in ME/CFS:

https://www.sciencedirect.com/science/article/abs/pii/S002239999800021X
 
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