@UkPoster, when there is a credible successful trial of a treatment based on your theories, come back with the evidence and we'll talk. In the meantime, your 'help' is just harmful victim blaming. Your ideas are damaging in so many ways.
Brain Retraining treatment for ME/CFS and Long COVID - discussion thread
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Peter T
Senior Member (Voting Rights)
[responding to a new deleted post]
'Pots and kettles’ come to mind.
Present actual evidence and we will debate. However asserting on the basis of personal belief, and, given you are just one more in a long line of such that appear not to understand the scientific method, you can hardly expect us to take you seriously. We may be primed to jump the gun, but given the harm done to so many patients over decades, you have given us no grounds to regard you as any different to your predecessors who have dropped into years of debate to put all these poor deluded patients to right and to magnanimously cure us with whatever form of CBT or brain training or neuroplasticity that is the current flavour of the month.
So far your assertions about how the brain/mind works sound totally arbitrary and one could use similar assertions to argue the complete opposite. Cite actual scientific studies and we will debate, we would love to be cured, but many of us have heard such assertions for ten, twenty, thirty or even forty years, so we have every right to respond with cynicism.
'Pots and kettles’ come to mind.
Present actual evidence and we will debate. However asserting on the basis of personal belief, and, given you are just one more in a long line of such that appear not to understand the scientific method, you can hardly expect us to take you seriously. We may be primed to jump the gun, but given the harm done to so many patients over decades, you have given us no grounds to regard you as any different to your predecessors who have dropped into years of debate to put all these poor deluded patients to right and to magnanimously cure us with whatever form of CBT or brain training or neuroplasticity that is the current flavour of the month.
So far your assertions about how the brain/mind works sound totally arbitrary and one could use similar assertions to argue the complete opposite. Cite actual scientific studies and we will debate, we would love to be cured, but many of us have heard such assertions for ten, twenty, thirty or even forty years, so we have every right to respond with cynicism.
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[referring to a now deleted post]
Having read this thread, I haven't seen anybody sneering. Just people, who presumably have had decades of living with and understanding this illness, disagreeing with you, and your ideas.
I have been unable to work for 26 years. Before that I had the highest degree in my year at Cambridge, and was a brilliant lawyer. To see somebody accuse me of "wasting my life" by refusing to get better, is both insulting and extremely disturbing.
Having read this thread, I haven't seen anybody sneering. Just people, who presumably have had decades of living with and understanding this illness, disagreeing with you, and your ideas.
I have been unable to work for 26 years. Before that I had the highest degree in my year at Cambridge, and was a brilliant lawyer. To see somebody accuse me of "wasting my life" by refusing to get better, is both insulting and extremely disturbing.
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[responding to a now deleted post]
If a literal magical cure like this existed do you think we wouldn't already know about it? It it literally worked as you say it would be trivial to prove - do people that try whatever have a job in a few months compared to the controls?
The norwegian data shows that ~99% of people with ME/CFS diagnosis don't have a job so this would be very easy to prove.
But no such thing exists, obviously. I hate this condescending talk from people in power - do they think we're absolute lemmings? Begging the governments for years just to get half a minimum wage? Does anyone seriously think we chose this life?
If a literal magical cure like this existed do you think we wouldn't already know about it? It it literally worked as you say it would be trivial to prove - do people that try whatever have a job in a few months compared to the controls?
The norwegian data shows that ~99% of people with ME/CFS diagnosis don't have a job so this would be very easy to prove.
But no such thing exists, obviously. I hate this condescending talk from people in power - do they think we're absolute lemmings? Begging the governments for years just to get half a minimum wage? Does anyone seriously think we chose this life?
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Many people who were genuinely ill with diagnosed ME/CFS have recovered naturally, especially younger people and those who have been sick for relatively short periods. Whatever they choose to attribute their recovery to is their business, and I am happy for them that they recovered. People who have recovered are welcome to tell us about it, provided they don't start advising others about treatment without providing clinical trial evidence, or using their own and others anecdotes to claim they have the truth and the rest of us are wrong. Do the hard graft. Do the well run scientifically valid clinical trials as every other treatment has to do.
What I cannot stomach is the preachy, self-important way some who claim brain retraining helped their recovery try to impose that view on others, many of whom, including me, have tried various forms of brain retraining and found no effect or got sicker.
This forum is about discussing scientific evidence and providing mutual support, not preaching and judging.
What I cannot stomach is the preachy, self-important way some who claim brain retraining helped their recovery try to impose that view on others, many of whom, including me, have tried various forms of brain retraining and found no effect or got sicker.
This forum is about discussing scientific evidence and providing mutual support, not preaching and judging.
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@UkPoster can you explain how I got this disease?
I am a practicing medical specialist, working at a children's hospital. Despite the inevitably constant exposure to viruses, I was "immune". I had had two days sick leave in over 20 years, after I broke my arm being hit by a car running a stop sign on my bicycle.
As a paediatric specialist you can be assured I am very pro vaccination, for myself as well as my patients.
I did not have a symptomatic acute Covid infection. We now know that around 40% of Covid infections are asymptomatic. What are the brain's priors and predictive processing errors here?
I asked Alan Levinovitz the same question in June. He did not attempt to respond.
I am a practicing medical specialist, working at a children's hospital. Despite the inevitably constant exposure to viruses, I was "immune". I had had two days sick leave in over 20 years, after I broke my arm being hit by a car running a stop sign on my bicycle.
As a paediatric specialist you can be assured I am very pro vaccination, for myself as well as my patients.
I did not have a symptomatic acute Covid infection. We now know that around 40% of Covid infections are asymptomatic. What are the brain's priors and predictive processing errors here?
I asked Alan Levinovitz the same question in June. He did not attempt to respond.
BrokenBeaktheBrave
Senior Member (Voting Rights)
And not just heard their assertions but we tried their methods to retrain our brains and have come out sicker.
MrMagoo
Senior Member (Voting Rights)
Hey, people are entitled to their opinion and that’s my opinion. Just like you are allowed to have an opinion about something going on in you life that triggered your brain into being stuck in a loop or subconsciously miscalculating certain select processes.
Good luck to anyone who recovers anyhow. We may never know their underlying aetiology anyway. Symptoms are after all non specific.
But isn't a lot of your stuff a very modern mix of me-ism and Marxism? My story is my truth and if you contradict it, I'll try to persuade you that your truth is not the truth and mine is, not because my truth is the truth but because it works for me, and it works even more if I conceive of it as the objective truth about ME and therefore about all other pwME, though I do not care to look into their stories in any depth, at least where such depth might contradict my truth. Then I will throw in insults - you don't want to get better. digging heels in etc. That's what you've done isn't it? The concern, the kindness, push back then the accusations fly, then the shutdown perhaps??
Why Marx , because "the purpose of philosophy is not to observe the world but to change it" (No wonder one of the big BPS men was called Engels!) Truth can be relegated in the struggle for change under wise vanguard masters who "care" and then attack as is their "right". The relegation must never be admitted as that will limit the power of the "truth" and this is not about the actual truth (truths imo) as it applies to a whole cohort but about the "truth" effective for some., (NLP etc. responsive,) whose wellbeing is dependent on silencing or denigrating the others (with the best of intentions). Not the truth as applies to all pwME but a version of truth applied on behalf of some. as it it applies to all, for the sake of the "some"
Anyway, you change your world as you are able, good luck while doing no harm. You may indeed care abut helping others and it may be dangerous to you to even think about what I write. But you may well not care about me or what I write, as I am "counter project" a danger to my own and others' health, you might think But if you really cared about the truth/s of ME you would take on board that you with all the NLP/etc failures and the alternative ways of improving/recovering, the wee Teitelbaum anecdotes, the way Alex Howard found that doing brain stuff was not good enough. (Neither Teitelbaum nor AH are friends of this parish, I would say). You do not have a one size fits all understanding, analysis, remedy, therapy, means of resetting. But you must pretend.
You may find that hard to admit to the above , you may dig your heels in, because it might make it harder to change your world and those of your type of sufferer and that is your world, which you want to keep changed and the truth is secondary to that aim and the rest of us can.....?????!!!??????!!!!!
You care enough to talk to pwME, but I doubt very much that you are willing to listen.
Now a specific question. Your version of fear is a closed brain based loop. What if a source of the fear is another physiological problem which drives the fear? Such would not contradict the existence of fear but it would substantially change clinical approach towards ridding the biophysical foundation, and you do not know that substantial numbers are not affected this way. You may have your cohort, but all of us????????
Stay well/asymptomatic.
Many NLP/etc people are fundamentalists and reductionists and not interested in debate. They do assertion, esp to themselves, alongside hope belief etc and that is all part of their avowed and admitted programme, with somelatterday concession to self-kindness or redefining recovery for the bad times - but not to competing aetiologies - yet. No debate for them as that might prevent rewiring.
That said, could it be that your infection has reset your brain in some way which might have little to do with the fear-musings of NLP etc,. but might respond to a number of approaches (some as yet undiscovered) of various modalities? One of them might be fro some a reductionist, fundamentalist, no debate assertion riddled, half truth based form of NLP or such like It might work for some just as CBT works for some depressives but may never work for you as totally inappropriate and/or as you would see thru it immediately as lacking objective foundations (hence they will not answer you). But it might be modualted to make a better fit for more people alongside biophysical modalities of various sorts. Work coming from sarcoid (which I now have) shows brain effects (OK claims them for this for those who question he quaity of the work) with no local granulomas, no distant neurosarc, just sarc elsewhere in the bodywith the sarc-free anterior gyrus in particular affected - and also after all signs of sarc tissue are gone, but maybe with persisteng IL-6. Might never respond to any NLP etc. but abiding brain changes/problems.
For some ME could be brain but not described uniquely or at all by one NLP theory, anymore than depression can be described as "prozac responsive syndrome" or "CBT responsive syndrome" or "nothing that Dr Adler can't fix syndrome" and everyone else an awkward self sabotager.
We have split off a discussion of Predictive Processing - thread here
Hi, sorry for disappearing.
I don't know why you got this disease simply because you aren't giving me enough information to make any assessment. With brain retraining we would be looking for what might have triggered fear. These can be surprisingly small things. The Covid infection being asymptomatic is a red herring, (are you someone who would describe themselves as having Long Covid? or M.E), we'd be looking at priors relating to your own trauma history, if there is any, and your emotions around the time the pandemic started. And emotions can need digging into and some deep reflection. I know many had to keep themselves going through Covid and feel they didn't have much time for fear but underneath that, there was a lot of threat for your brain to analyse and respond to.
Many of the more recent recoverees are people who were severely ill and ill for a long time. I am not trying to preach at you, I am trying to ask you to listen and be open minded.
I wish them well.
I am open minded. I am not inclined to believe or disbelieve individual anedotes online. I await research evidence.
Jonathan Edwards
Senior Member (Voting Rights)
It does sound awfully like preaching but let's ignore that.
Members here are completely open minded. We just stipulate that we want to know the reliability of a claim. If I am going in to town and someone says there is a bus I want to know the reliability of that claim. The same applies to treatments. There is a physical fact of the matter about the relibility of any predictive claim - if you check the prediction you can tell.
History tells us that the reliability of claims about treatments by enthusiasts is very low indeed. The reliability of claims based on well designed adequately controlled studies has been found to be high. Unless you can provide us with some evidence that comes in a format we can judge is reliable I think you are wasting your time.
So far the prospects, as judged from your posts and what we already know from the literature, do not look good.
I strongly disagree members here are open minded and it is why I got frustrated. There is a very strong bias on this forum.
I understand research is important but put it this way, before we had any evidence on aspirin or antiseptic, it still worked, would you agree? The fact people came along and did research on them isn't the thing that made them work, it's just established scientifically that they do. I would argue that although this topic is different as it's not a medication, we have a situation where just because enough research hasn't been done doesn't change the fundamental truth that exists in relation to it.
I understand research is important but put it this way, before we had any evidence on aspirin or antiseptic, it still worked, would you agree? The fact people came along and did research on them isn't the thing that made them work, it's just established scientifically that they do. I would argue that although this topic is different as it's not a medication, we have a situation where just because enough research hasn't been done doesn't change the fundamental truth that exists in relation to it.
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I understand waiting for evidence. It's a fair position. However, as a thought experiment if they have the evidence in 10 years time to say that brain retraining can cure a large proportion of people with M.E, will you regret the time you lost waiting for that evidence? I know this might seem a stupid question as on that basis, people could drink bleach for cancer and all sorts, but I'm asking you to think specifically about brain retraining and the fact it doesn't involve medication, it's a gentle psychosocial intervention the patient has control over and which thousands of people (including previously severely ill patients) are saying has helped them
Jonathan Edwards
Senior Member (Voting Rights)
This argument indicates directly that you are not understanding what is being discussed. Of course aspirin worked before there were trials and tincture of blood letting didn't but when it comes to brain retraining who is to know which it is? At the time there was equal conviction that aspirin and blood letting worked. We only knew once they had been properly tested.
That is tantamount to saying I don't really want to get better. You could equally suggest I would regret not trying all the multitudes of drugs, nutriceuticals, supplements, surgery, behavioural changes, religious experiences, FMT etc that many others attribute their recovery to.
I have tried all sorts of treatments, some whackier than others during the first 20 years of my illness, all of which were a waste of money, and some made me sicker. I have also read many accounts and explanations of brain retraining, none of which made any sense in the context of my experience of ME/CFS. I have also read accounts of many people who have been harmed by many of these treatments including brain retraining.
I'm so curious about this idea of harm and brain retraining.
My general understanding is that if harm is done, it's because its underlying premise is correct. It couldn't harm otherwise as it's just thoughts.
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