Utsikt
Senior Member (Voting Rights)
That would be funny if it didn’t cause great harm.
Brain Retraining treatment for ME/CFS and Long COVID - discussion thread
- Thread starter RaviHVJ
- Start date
Yann04
Senior Member (Voting Rights)
I think the vast majority of people in these groups are lurkers who believe in the magic because the only ones they see talking are people who report significant improvements (sowing doubt tends to be removed by moderators). These people also tend to be in denial about the severity/impact/seriousness about their illness, and are naturally drawn to places that minimise it.
They probably haven’t significantly improved themselves, but convinced themselves any tiny positive change they’ve had is due to the treatment, and that they need to try harder (spend more money and time) before they see large results.
These type of people probably don’t comment as much, but make up the bulk of the likes and views
They probably haven’t significantly improved themselves, but convinced themselves any tiny positive change they’ve had is due to the treatment, and that they need to try harder (spend more money and time) before they see large results.
These type of people probably don’t comment as much, but make up the bulk of the likes and views
Friendswithme
Established Member (Voting Rights)
Ok I am back and am going to try to respond to as much as I can.
Do you accept that - that lots of people will recover, whether they jump on circles and shout stop!, or go cold-water swimming or even if they don't do anything in particular and just let time pass?
Yes, absolutely. What you tend to see in recovery circles though is people who haven't recovered with time, hence them eventually turning to brain retraining. Many have been ill for years and they have multiple symptoms that have never budged. But yes, I agree many do recover without any interventions. I didn't, I was ill for years before brain retraining proved to be my answer. I had tried other things but nothing else had helped me.
I'm not sure what your point is about Charles Shepherd
I am curious as to how people here conceptualise an illness involving PEM where some people can go for a daily walk and not deteriorate with time and others can't sit up or talk without triggering PEM. I appreciate someone else said they don't want to talk about an individual's health on here so I will leave that there (but I only specifically mentioned him as he has discussed his situation in the press plus he is the figurehead of an M.E charity)
I think you may be mistakenly thinking that people on this forum are fundamentally opposed to exertion (because we are frightened that we might deteriorate)?
No and I always find it puzzling when people here talk about M.E and having no fear of moving. It is actually incredibly sensible and understandable to fear exertion when it's something that can make you crash horribly. I used to do this thing of 'but I'm not scared of exercise. I WANT to exercise.' Er, actually yes I was scared of exercise because crashing was so awful and unpredictable and there seemed to be no medical help however ill I felt. Fear in that context is a rational reaction. Who wants to do too much and be punished so horribly for days to weeks to months at a time afterwards? That fear is protective. I still wanted to get back to being able to do exercise, even if my symptoms forced me to fear it.
Refusing to read a book about an ideology is a perfectly reasonable view to have.
If you feel that way, at the end of the day you don't have to read the books. I think both books I suggested build a sophisticated argument based on many really interesting studies on the human brain overall (not necessarily just M.E). But you won't understand their arguments in full if you won't read them. People on the opposing sides to you have read them and I think the whole debate is weaker overall if you don't fully get what you are disagreeing with. I feel very strongly about one side of the trans debate, for e.g. I try really hard to keep reading things from the other side as they develop in case my ideas need updating or in case I might have missed something or I actually need to double down with my pov. I think it's crucial to keep up to date about something I feel so strongly about that effects some very vulnerable people. I've never then changed my ideas for doing this but I am always prepared I might do so. Changing my mind about my M.E is the best thing that ever happened to me for so many reasons and I was so sure before that I was right. My opinions were once very in line with what you all believe.
My bolded sentence about 'living and breathing the illness' and can I elaborate
Sure. Just that when you are someone who is at the coal face of this illness, you have so much expertise into this condition. But you can still, in fact, be wrong in your understanding of it if you refuse to read some of the more recent ideas and science. Having so much experiential knowledge of something doesn't mean your own judgement is necessarily always going to be right.
Please do not preach voodoo
I can see you don't want to read these books. It is a shame. I think this whole debate about a horrible illness would be stronger for you fully understanding your opposition's current pov. 'Know thy enemy,' no? Nobody has ever had that idea as far as I know. Except that you were saying as much in a previous post? So now I'm confused. It's why I started posting on this thread in the first place, because I felt you were misrepresenting what 'BPS people' actually think. The BPS people haven't a clue how minds work I mean, if you don't read the books, you don't know if that is the case. Some of what is touched on in the books is based on recent and very cool neuroscientific findings. I found it really fascinating outside of caring about M.E.
Your comment seems to indicate that you have no real understanding of the dynamic of this illness.
The illness I lived with for many years? That so many of my friends had and have? I know a lot of pwme and very few of them could go for a walk each day and be ok. It's not about my understanding, anyway, I was interested in how *you* conceptualise this type of variation. What do you think exists in the literature currently that explains this?
I am just as sane, positive and determined as I was when I could work, I have no particular beliefs about the nature of my illness, yet I am much sicker.
See, this is where this forum is frustrating. Brain retraining has very little to do with positivity, sanity, determination or false illness beliefs. It's about safety and what the brain assesses in the environment without you being conscious aware that is going on. If brain retraining is not for you that's completely ok but I tend to see these kinds of comments from people who haven't grasped some of the nuances of the tools on offer. I see from your comments on this forum that you are super bright, so that isn't meant to be a dig. It's possible to be highly intelligent and not fully understand some ideas in many areas of life. I'm sorry you are so unwell.
On the subject of FB groups with thousands of members, it would be impossible for one person to truly understand the individual situation of thousands or the reasons for their recovery from whatever illness they had. Numbers mean nothing in this context.
I can see why you think this, but it's not correct. There are certain lightbulb moments in brain retraining that most people seem to have as they recover. You get to learn who 'gets it' and will heal and who is in need of guidance the longer you mix in these circles and watch people get better. I have been in these groups for a while now and what I see consistently is recovered or recovering people reflecting on their recoveries in a way that fits with what I know about why brain retraining works. Yes, some people try to get better and don't but also some of those pop up months down the line to share a realisation that has since led to their recovery. Being part of a large group where person after person documents their improvements and shows photos of them ill and then out being free to have fun is totally exhilarating and I read the posts closely just for the sheer buzz of watching people get their heath back. This whole thing is snowballing because when people recover they want to talk about it (to the point of being annoyingly evangelical sometimes) and it encourages others to have a go and also recover. It's so exciting seeing it. BPS related ideas/brain retraining are/is not going away any time soon because more and more people are getting their lives back through them. This can't be put back in its box.
It seems that the people who sell and promote these brain retraining courses rarely hold a medical degree or have a scientific background.
That is the case with some but their involvement often just stems from enthusiasm, despite what you think about them being out to make money. I can't say I'm the biggest fan of many people on those list. However, there are many others who do have medical degrees or are working in research who are also big fans of brain retraining. It is growing year on year as people come forward with recovery stories (I'd prefer it if there were just more trials but let's be real here, if a huge brain retraining trial was announced for pwme, there would be UPROAR. You really want more BPS related trials? Really? I used to not want them either, I hated the idea of them given I thought they were all pseudoscience and gaslighty. I don't feel like that now.).
If I remember correctly, that's the one where virtually every guest has something to sell.
I believe she has a mix of people who pay to appear to help cover costs as they are coaches and people who don't pay. I'd strongly advise looking beyond the videos themselves. The comments are FULL of people saying 'this is helping me recover' or 'I'm recovered.' Again, it's large numbers of people. Video after video after video with so many comments. I find that heartening - this illness that so many people suffer with for years with so little help or hope and here are all these people now getting better.
Astrology is popular. "The Secret" sold 30 million copies. Popularity and correctness are two very different things.
I agree. Except that what you have with brain retraining is people who are seriously unwell and can't push through at all and then use these techniques and regain the ability to exercise with ease. Astrology doesn't offer that. I couldn't do a certain amount of activity for years and years, however desperate I was to get well. I can now take any exercise I want. I have friends in the recovery community who have been bedbound with severe M.E who are now getting out the house, exercising, one is travelling, one just went up a mountain this last weekend, one started a small business, one just had a baby. All British people. This is not people who are desperately trying to convince themselves they are well, this is people making sustained recoveries. I'm off to see one of them in a few weeks, actually. She sold her wheelchair after using one for 10 years. We're going for lunch in a cafe and going for a walk (at her suggestion) which is the first time I will have ever seen her walking - last visit she was her in her power chair and she could only then sit for a certain length of time. When I first met her she struggled to talk, sit up, wash, even eat on some days and was like that for years. I only knew her through a FB group for about the first 4/5 years of knowing her. She had a long stretch living in a care home with people 20 years older than her at her worst. She isn't a coach, she won't ever appear on Raelan's channel as she is too shy but there you go, she's a real person who had severe M.E. Brain retraining is the first thing that has ever helped her and with that, it's taken months of stopping and starting and setbacks and needing to tweak techniques but it's paying off and the improvements keep coming.
There isn't even much of a concept of being in date, or out of date, because the ideology is built on a bunch of narratives and assertions made out of nothing
I mean, the books describe the many studies they're drawing on to build their arguments. It's not just two books of 'I think this so ha, I'm right.'
In that situation, wouldn't there be some people faking the disease and recovery, just to get "likes" or whatever people try for in those groups?
Possibly but that doesn't resonate with me given the intimate details people share about their journeys. Plus when people really get these ideas and recover, their joy bubbles out of them. It's not an easy thing to fake, you can see it in their eyes (god, that sounds cult like. But it's true). You could, and people might, but I think others would be onto them quite easily. My photos before and I recovered are like two different people. I look so happy now in a way I can't imagine I could feel if this was all a big ruse. I am high on life, at best.
Right, I have to stop there and go to bed. I hope I've covered the key points/questions. Good to talk to you all. Thanks for listening.
Do you accept that - that lots of people will recover, whether they jump on circles and shout stop!, or go cold-water swimming or even if they don't do anything in particular and just let time pass?
Yes, absolutely. What you tend to see in recovery circles though is people who haven't recovered with time, hence them eventually turning to brain retraining. Many have been ill for years and they have multiple symptoms that have never budged. But yes, I agree many do recover without any interventions. I didn't, I was ill for years before brain retraining proved to be my answer. I had tried other things but nothing else had helped me.
I'm not sure what your point is about Charles Shepherd
I am curious as to how people here conceptualise an illness involving PEM where some people can go for a daily walk and not deteriorate with time and others can't sit up or talk without triggering PEM. I appreciate someone else said they don't want to talk about an individual's health on here so I will leave that there (but I only specifically mentioned him as he has discussed his situation in the press plus he is the figurehead of an M.E charity)
I think you may be mistakenly thinking that people on this forum are fundamentally opposed to exertion (because we are frightened that we might deteriorate)?
No and I always find it puzzling when people here talk about M.E and having no fear of moving. It is actually incredibly sensible and understandable to fear exertion when it's something that can make you crash horribly. I used to do this thing of 'but I'm not scared of exercise. I WANT to exercise.' Er, actually yes I was scared of exercise because crashing was so awful and unpredictable and there seemed to be no medical help however ill I felt. Fear in that context is a rational reaction. Who wants to do too much and be punished so horribly for days to weeks to months at a time afterwards? That fear is protective. I still wanted to get back to being able to do exercise, even if my symptoms forced me to fear it.
Refusing to read a book about an ideology is a perfectly reasonable view to have.
If you feel that way, at the end of the day you don't have to read the books. I think both books I suggested build a sophisticated argument based on many really interesting studies on the human brain overall (not necessarily just M.E). But you won't understand their arguments in full if you won't read them. People on the opposing sides to you have read them and I think the whole debate is weaker overall if you don't fully get what you are disagreeing with. I feel very strongly about one side of the trans debate, for e.g. I try really hard to keep reading things from the other side as they develop in case my ideas need updating or in case I might have missed something or I actually need to double down with my pov. I think it's crucial to keep up to date about something I feel so strongly about that effects some very vulnerable people. I've never then changed my ideas for doing this but I am always prepared I might do so. Changing my mind about my M.E is the best thing that ever happened to me for so many reasons and I was so sure before that I was right. My opinions were once very in line with what you all believe.
My bolded sentence about 'living and breathing the illness' and can I elaborate
Sure. Just that when you are someone who is at the coal face of this illness, you have so much expertise into this condition. But you can still, in fact, be wrong in your understanding of it if you refuse to read some of the more recent ideas and science. Having so much experiential knowledge of something doesn't mean your own judgement is necessarily always going to be right.
Please do not preach voodoo
I can see you don't want to read these books. It is a shame. I think this whole debate about a horrible illness would be stronger for you fully understanding your opposition's current pov. 'Know thy enemy,' no? Nobody has ever had that idea as far as I know. Except that you were saying as much in a previous post? So now I'm confused. It's why I started posting on this thread in the first place, because I felt you were misrepresenting what 'BPS people' actually think. The BPS people haven't a clue how minds work I mean, if you don't read the books, you don't know if that is the case. Some of what is touched on in the books is based on recent and very cool neuroscientific findings. I found it really fascinating outside of caring about M.E.
Your comment seems to indicate that you have no real understanding of the dynamic of this illness.
The illness I lived with for many years? That so many of my friends had and have? I know a lot of pwme and very few of them could go for a walk each day and be ok. It's not about my understanding, anyway, I was interested in how *you* conceptualise this type of variation. What do you think exists in the literature currently that explains this?
I am just as sane, positive and determined as I was when I could work, I have no particular beliefs about the nature of my illness, yet I am much sicker.
See, this is where this forum is frustrating. Brain retraining has very little to do with positivity, sanity, determination or false illness beliefs. It's about safety and what the brain assesses in the environment without you being conscious aware that is going on. If brain retraining is not for you that's completely ok but I tend to see these kinds of comments from people who haven't grasped some of the nuances of the tools on offer. I see from your comments on this forum that you are super bright, so that isn't meant to be a dig. It's possible to be highly intelligent and not fully understand some ideas in many areas of life. I'm sorry you are so unwell.
On the subject of FB groups with thousands of members, it would be impossible for one person to truly understand the individual situation of thousands or the reasons for their recovery from whatever illness they had. Numbers mean nothing in this context.
I can see why you think this, but it's not correct. There are certain lightbulb moments in brain retraining that most people seem to have as they recover. You get to learn who 'gets it' and will heal and who is in need of guidance the longer you mix in these circles and watch people get better. I have been in these groups for a while now and what I see consistently is recovered or recovering people reflecting on their recoveries in a way that fits with what I know about why brain retraining works. Yes, some people try to get better and don't but also some of those pop up months down the line to share a realisation that has since led to their recovery. Being part of a large group where person after person documents their improvements and shows photos of them ill and then out being free to have fun is totally exhilarating and I read the posts closely just for the sheer buzz of watching people get their heath back. This whole thing is snowballing because when people recover they want to talk about it (to the point of being annoyingly evangelical sometimes) and it encourages others to have a go and also recover. It's so exciting seeing it. BPS related ideas/brain retraining are/is not going away any time soon because more and more people are getting their lives back through them. This can't be put back in its box.
It seems that the people who sell and promote these brain retraining courses rarely hold a medical degree or have a scientific background.
That is the case with some but their involvement often just stems from enthusiasm, despite what you think about them being out to make money. I can't say I'm the biggest fan of many people on those list. However, there are many others who do have medical degrees or are working in research who are also big fans of brain retraining. It is growing year on year as people come forward with recovery stories (I'd prefer it if there were just more trials but let's be real here, if a huge brain retraining trial was announced for pwme, there would be UPROAR. You really want more BPS related trials? Really? I used to not want them either, I hated the idea of them given I thought they were all pseudoscience and gaslighty. I don't feel like that now.).
If I remember correctly, that's the one where virtually every guest has something to sell.
I believe she has a mix of people who pay to appear to help cover costs as they are coaches and people who don't pay. I'd strongly advise looking beyond the videos themselves. The comments are FULL of people saying 'this is helping me recover' or 'I'm recovered.' Again, it's large numbers of people. Video after video after video with so many comments. I find that heartening - this illness that so many people suffer with for years with so little help or hope and here are all these people now getting better.
Astrology is popular. "The Secret" sold 30 million copies. Popularity and correctness are two very different things.
I agree. Except that what you have with brain retraining is people who are seriously unwell and can't push through at all and then use these techniques and regain the ability to exercise with ease. Astrology doesn't offer that. I couldn't do a certain amount of activity for years and years, however desperate I was to get well. I can now take any exercise I want. I have friends in the recovery community who have been bedbound with severe M.E who are now getting out the house, exercising, one is travelling, one just went up a mountain this last weekend, one started a small business, one just had a baby. All British people. This is not people who are desperately trying to convince themselves they are well, this is people making sustained recoveries. I'm off to see one of them in a few weeks, actually. She sold her wheelchair after using one for 10 years. We're going for lunch in a cafe and going for a walk (at her suggestion) which is the first time I will have ever seen her walking - last visit she was her in her power chair and she could only then sit for a certain length of time. When I first met her she struggled to talk, sit up, wash, even eat on some days and was like that for years. I only knew her through a FB group for about the first 4/5 years of knowing her. She had a long stretch living in a care home with people 20 years older than her at her worst. She isn't a coach, she won't ever appear on Raelan's channel as she is too shy but there you go, she's a real person who had severe M.E. Brain retraining is the first thing that has ever helped her and with that, it's taken months of stopping and starting and setbacks and needing to tweak techniques but it's paying off and the improvements keep coming.
There isn't even much of a concept of being in date, or out of date, because the ideology is built on a bunch of narratives and assertions made out of nothing
I mean, the books describe the many studies they're drawing on to build their arguments. It's not just two books of 'I think this so ha, I'm right.'
In that situation, wouldn't there be some people faking the disease and recovery, just to get "likes" or whatever people try for in those groups?
Possibly but that doesn't resonate with me given the intimate details people share about their journeys. Plus when people really get these ideas and recover, their joy bubbles out of them. It's not an easy thing to fake, you can see it in their eyes (god, that sounds cult like. But it's true). You could, and people might, but I think others would be onto them quite easily. My photos before and I recovered are like two different people. I look so happy now in a way I can't imagine I could feel if this was all a big ruse. I am high on life, at best.
Right, I have to stop there and go to bed. I hope I've covered the key points/questions. Good to talk to you all. Thanks for listening.
rvallee
Senior Member (Voting Rights)
There were so many posts like this in the LC sub-reddit. Especially in the 'supplements stacks' era.
Then there were more posts about crashes and relapses. Some by people who made posts about recovery.
It's easy to imagine how a biased community would emphasize some, and censor others. The LC sub-reddit is a very good generic/neutral community for this, very little censorship compared to most, and it's very hard to control the conversation, like what happens in closed communities.
I guess the fact that some people do keep active pretty much blows away the idea that it is the way we think about exertion that is holding us back. Some people with ME/CFS can be reasonably fit. That has certainly been an inconvenient fact that BPS people have brushed under the carpet. The thing is, if you do more than a certain level, you get hammered with PEM. Perhaps you can walk the dog and do some work lying down, but you might only be showering twice a week and apart from the dog walk, you aren't often leaving the house.
I think your conception of ME/CFS is wrong. It is not sensible to fear exertion per se, because exertion is doing things and everyone wants to do that. I don't think most people with ME/CFS have that fear. It is sensible to fear a level of exertion that you have found typically results in PEM.
You also seem to be confusing exertion with exercise. To a large extent, exercise is a luxury, and it is an activity that most people with ME/CFS choose to engage in sparingly, in order to save their exertion capacity for essentials. Children and adults with ME/CFS with a lot of support for activities of daily living can sometimes undertake exercise for the joy of it. Many of us have tried to exercise our way out of ME/CFS early on (exhibiting no fear of exercise), and found it did not work.
So, tell us exactly what you did that you believe made you recover.
Shelling out a large amount of money for a book that gives every appearance of being more of the drivel we have dissected before is not enticing. We read published papers here, partly to see if there really is anything in them, partly to, as you say, know our enemy. I think collectively we have a very good idea of the concepts out there.
Have you read the links about LP that Trish posted up thread so that you gained a better understanding of the harm the sorts of ideas you are promoting can do? People have been harmed when they have tried to cure themselves and have failed. Do you accept that it is not all joy and sunshine?
So, tell us, what nuances have we failed to grasp?
I would be quite happy if it was done extremely well by unbiased investigators. There are ways that good trials of BPS therapies could be done. I'd be equally happy with the announcement of a really rigorous trial of homeopathy conducted by people with no incentive to find that homeopathy works. Unfortunately, BPS researchers have found the trial recipe that gives them the answers they want, and they keep applying it.
I wonder if you would be willing to provide proof to one or two members here in a private chat, to verify who you are and details of your previous illness and recovery? It's easy for people to come onto the forum and make all sorts of claims, and of course that is precisely what someone trying to drum up business for these programmes would do.
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Utsikt
Senior Member (Voting Rights)
There are different severities? Individual differences are common for any illnesses. My uncle with severe MS hasn’t walked for years. My friend with MS is able to run. Would you say one of them do not have MS? What about epilepsy? Peanut allergies?
I’ve never been afraid of movement. That made me a lot worse because I ignored crash after crash after crash.
When I have to do something, I just do it and whatever happens happens.
How does that fit with your understanding of how ME/CFS works?
I suggest digging into the methodology and the degree of scientific rigour that’s being applied in those studies. Do they hold up to scrutiny?
Some of them might already have been discussed here, you can easily search for the title through google by starting your search with «site:s4me.info».
There are over 1,000 threads in the psychosomatic subforum. We read and analyse the science and ideas. Personally, I spend more time in depth reading psychosomatic research than any other type. And most of the psychosomatic work is rather unconvincing.
You’re essentially implying that everyone here either doesn’t want to listen to reason, or are unable to understand things, and that that has to be the explanation for why someone can disagree with you.
You don’t have to read their books if you’ve read their science.
Do you understand how patronising this comment is? Do you think that’s an acceptable way to speak to someone else?
————-
PS. There is a feature called ‘multiquote’ that makes it easier to respond to comments without having to copy and paste. It will also notify the people you quote so they don’t miss your reply.
What was it that changed your mind? Was it was your own personal experience? Because that might be great evidence for you, but that isn't a good reason for others to change their minds.
Was it the evidence that is presented in these books? If so, then can we talk about that evidence directly? And if ME/CFS is caused (at least in part) by the brain being trapped by some perceived fear then would not the logical conclusion be to show overwhelming proof that there is no need to be afraid? Why do we need these brain retraining programs when presenting the evidence to not be afraid would be more effective?
Could you be more specific about what brain retraining is? What exactly is the treatment?
For example, say there's someone two months into a brain retraining program. Or some other length of time. They are about to do their practice for the day. What exactly do they do?
I think you may find that many people on here have interacted with this research. You will even find that some members on this site have published their own research whilst others are researchers. In case some of us don't understand the arguments, would it be possible for you to point to a paper which you consider to be of high quality and provides such arguments?
@Friendswithme thank you for your response. I find it interesting reading your perspective. I note two things you might like to respond to.
First, you tell me I have the wrong idea about what brain retraining involves, but you have told us nothing about what it does involve. Perhaps you will take up my suggestion of telling us what you actually did that led to your light bulb moments, rather than making a big mystery of it and telling us to buy and read a couple of books. As I said, many of our members are both too sick and too financially constrained to be able to do so. If you want to inform us rather than just telling us we're wrong, how about actually providing us with some information, including links to relevant research papers, and a description of the most helpful parts of brain retraining.
Second, in response to you asking us to read some books, I asked you to read some people's experiences of the Lightning process that I linked. I would be interested in your response to them.
First, you tell me I have the wrong idea about what brain retraining involves, but you have told us nothing about what it does involve. Perhaps you will take up my suggestion of telling us what you actually did that led to your light bulb moments, rather than making a big mystery of it and telling us to buy and read a couple of books. As I said, many of our members are both too sick and too financially constrained to be able to do so. If you want to inform us rather than just telling us we're wrong, how about actually providing us with some information, including links to relevant research papers, and a description of the most helpful parts of brain retraining.
Second, in response to you asking us to read some books, I asked you to read some people's experiences of the Lightning process that I linked. I would be interested in your response to them.
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Don't have to eat the whole egg to know it is rotten.
It's too bad that we can't sniff books to know their quality.
I had PEM from exertion long before I realized there was a connection. I think it took years before I accepted that the lousy days were generally preceded by days when I went for extra-long bike rides. So, no thinking about exertion involved. No fear about exertion after that, because the "feeling lousy" was relatively minor and didn't last more than a day. I certainly didn't fear doing some minor activities, such as washing a window, which I didn't realize in advance would trigger strong PEM.
Likewise with general ME symptoms: I didn't decide to be ill, I was just living life as usual and suddenly felt a flu coming on ... and it never went away. I'm sure some BPS type could invent some babble about childhood trauma and unacknowledged stress about having watched some romance movie and panicking over never having gotten married, which might sound plausible to some people, but be completely baseless yet unable to be proven false. Maybe that's the real art of psychology: inventing stories that sound plausible yet can't be proven false.
The "ME is due to thinking wrongly" theory also doesn't account (without invented untestable babble) for spontaneous improvements. I've had several totally unexpected improvements from various foodstuffs. I certainly never expected curry to be a treatment.
DigitalDrifter
Senior Member (Voting Rights)
I do know my enemy. I browse the medical SubReddits regularly where doctors refer to us [unexplained illness patients] as whiney somatizers with s*** life syndrome, or malignant entitled crazies. They praise quacks like Susan O'sullivan, claim without good evidence that ME is psychosomatic, and blame social media for the spread of contested illnesses.
Wouldn't be so bad if they used objective outcome measures (such as actigraphy) so that we can be sure if they were really improving as opposed to just saying they are better because they've been brain washed to respond positively.
And followed up the subjects for a year, so we could see how many *actually* recovered enough to resume their old lives, and how many ran on fumes for a few months and then crashed.
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DigitalDrifter
Senior Member (Voting Rights)
That kind of comment is often disingenuous when coming from doctors and psychiatists.
May be he stays within his limits. Also he could be getting PEM / PESE but still have a high deterioration threshold.
Friendswithme
Established Member (Voting Rights)
This is my first time using the multiquote function, so I hope I've got it right.
I'm sorry but I don't want to do that. However, I can promise you I don't want to drum up any business for anybody. I believe there is enough brain retraining info online now that you can find nearly everything you need through free resources, even if you have to mix and match a bit. The best resources (in my personal opinion) are Alan Gordon's Insta account, his book 'The Way Out' (which is very readable, if you can read books), the 'TMS Wiki,' Dan Buglio's Pain Free You YT account and also the 6 weeks of free access to Curable that several places offer using a code. There is info spread across all of those that would keep you learning for months if you wanted to. Different resources also suit different people. Never under any circumstances hand over thousands for this info. It's not necessary.
I am lucky. I shared the opinions you all have for years. I came across Alan Gordon and saw he had recovered from M.E along with pain. I was getting particularly desperate to get well and so saw a talk he did and I worked through his TMS wiki. It was a huge shock that it worked. I have then spent a long time watching it work for so many others and am part of recovery groups on FB where I see people posting about their recoveries every week. There is something very convincing about seeing the same techniques working over and over again. And seeing people get stuck at similar places, get advice on how to shift things and then also go away and make improvements.
You talk about being offered overwhelming proof of there being no need to be afraid - that is precisely what brain retraining is aiming to do. It slowly builds knowledge that you are safe. It can take weeks or months, everyone is a bit different. I was not prepared to start exercising until I saw the techniques were actively working for me, I couldn't risk crashing. I've seen others who have felt the same. They do the exercises (like somatic tracking), start getting control of their symptoms (you start to actively be able to turn them off which is a cool experience) and then they start doing more physical activity.
Hmm. It's not the easiest to explain in one post. Not because it is that complex, but because it is a process you need to follow over time and its best to build your understanding up in layers. You are fundamentally teaching your brain it is safe and that it doesn't need to generate symptoms any more. Repetition is key because you're building new neural pathways. The very best way of you understanding the process is to get the 6 weeks free of Curable and go through their lessons. They break it down really well. Or read 'The Way Out' (or look at Alan's Insta for bite sized infographics). You don't need to spend a single penny to learn about this stuff, as I've said above. Howard Schubiner also did a very good podcast with Rangan Chatterjee. Ignore the fact many of these resources are on pain; they apply to so many other symptoms. I'm sorry if that is frustrating but having experienced recovery, it's better to learn it a stage at a time and start to play around with some of the exercises (if you want to).
See above. It's really better for you to access some of the free resources where people have worked to break it down. There is a fair bit to cover. I had a quick recovery and it still took me 4-8 weeks to go through enough resources for it to really sink in. The basic message I got in a few days, it isn't that complex but I don't want to sum it up in a paragraph when you're missing an opportunity to give it some deeper thought. I also just don't think I'm very good at summing it up. But it isn't any great mystery given how much free stuff there is out there.
Research papers - there are no RCT's testing this out. There is a really detailed theoretical understanding being pieced together based on lots of recent neuroscience/psychology/psychiatry and inmmunology (which the books I linked to go into in detail) and thousands upon thousands of positive anecdotes. That isn't enough, we need trials but we're going to be waiting a long time for those. The MINIRICO trial is coming, though, at least. Although I see from a post on S4ME that you might have all decided it looks worthless in advance? Sorry I can't offer more. The validation from trials matters but all I can say is I wasn't able to exercise or work for years. I chose not to have children as I felt unable to care for them. I now exercise as much as I want and work and am free. If I had waited for the evidence you are understandably asking for, I'd have been ill all this time. That motivates me to tell other people to look into this work. I just don't want people to suffer. I wish more than I can say that I had tried this work years earlier. I could be a mum now. I could have done so much that I didn't get to do. I don't have any ulterior motive beyond wanting people to be well, if that is possible for them.
ABSOLUTELY. I didn't post here to convince you all that brain retraining is your answer and it will cure everyone. What is ever that simple in life? You are totally free to not try it or to try it and tell me it didn't work for you. No worries. I have friends in that position and we've managed to stay friends, I'm pleased to say. I respect their experience and they respect mine.
I posted here because this forum sums up the opposing argument as 'they're all grifters/they think we have false illness beliefs/they think it's all in our heads/they think we are exaggerating or are fixated on minor symptoms'. Nowadays, at least, that is incorrect and very frustrating. If I was having an argument with someone about vaccines and someone said to me 'all vaccines have chips in them as the government wants to know my thoughts,' I might try to get through to them but I wouldn't waste much energy on it as that is just wrong. It is a total waste of time and energy. I'd smile and nod and wish them well. I know people are going to be offended by this analogy, but that's what this conversation genuinely feels like to me so I have a right to say it.
Do some on the BPS side of things thought M.E is made up? Yes, sure. I saw some really bullying, ignorant doctors when I was ill. It was awful.
I am now (weirdly!!) on the BPS side of the debate as I have tried to look at where I need to update my knowledge, since I recovered. So I know your ideas about 'it's all in your head' are NOT what the current BPS argument is. Hence why I was asking (actually Jonathan Edwards) to read the books I recommended. I have gone from being so against any ideas involving M.E being anything other than biomedical to finding the brain so fascinating. To me, M.E is a brain/nervous system related issue and neuroplasticity means many people can get their lives back.
Same here, actually, though for me it was months. I was trying to exercise myself well for the first few months and felt more and more unwell for doing that. But that's why the thinking now is this is a more primitive/automatic part of the brain that is generating the symptoms (that is my layman's way of explaining it. I'm not a neuroscientist. Sorry). You can be completely oblivious to the fact your brain is dealing with any fear and trying to push through with exercise and still get PEM based on your brain thinking there is a threat you need to be alerted to. Brains are weird.
I'm sorry but I don't want to do that. However, I can promise you I don't want to drum up any business for anybody. I believe there is enough brain retraining info online now that you can find nearly everything you need through free resources, even if you have to mix and match a bit. The best resources (in my personal opinion) are Alan Gordon's Insta account, his book 'The Way Out' (which is very readable, if you can read books), the 'TMS Wiki,' Dan Buglio's Pain Free You YT account and also the 6 weeks of free access to Curable that several places offer using a code. There is info spread across all of those that would keep you learning for months if you wanted to. Different resources also suit different people. Never under any circumstances hand over thousands for this info. It's not necessary.
I am lucky. I shared the opinions you all have for years. I came across Alan Gordon and saw he had recovered from M.E along with pain. I was getting particularly desperate to get well and so saw a talk he did and I worked through his TMS wiki. It was a huge shock that it worked. I have then spent a long time watching it work for so many others and am part of recovery groups on FB where I see people posting about their recoveries every week. There is something very convincing about seeing the same techniques working over and over again. And seeing people get stuck at similar places, get advice on how to shift things and then also go away and make improvements.
You talk about being offered overwhelming proof of there being no need to be afraid - that is precisely what brain retraining is aiming to do. It slowly builds knowledge that you are safe. It can take weeks or months, everyone is a bit different. I was not prepared to start exercising until I saw the techniques were actively working for me, I couldn't risk crashing. I've seen others who have felt the same. They do the exercises (like somatic tracking), start getting control of their symptoms (you start to actively be able to turn them off which is a cool experience) and then they start doing more physical activity.
Hmm. It's not the easiest to explain in one post. Not because it is that complex, but because it is a process you need to follow over time and its best to build your understanding up in layers. You are fundamentally teaching your brain it is safe and that it doesn't need to generate symptoms any more. Repetition is key because you're building new neural pathways. The very best way of you understanding the process is to get the 6 weeks free of Curable and go through their lessons. They break it down really well. Or read 'The Way Out' (or look at Alan's Insta for bite sized infographics). You don't need to spend a single penny to learn about this stuff, as I've said above. Howard Schubiner also did a very good podcast with Rangan Chatterjee. Ignore the fact many of these resources are on pain; they apply to so many other symptoms. I'm sorry if that is frustrating but having experienced recovery, it's better to learn it a stage at a time and start to play around with some of the exercises (if you want to).
See above. It's really better for you to access some of the free resources where people have worked to break it down. There is a fair bit to cover. I had a quick recovery and it still took me 4-8 weeks to go through enough resources for it to really sink in. The basic message I got in a few days, it isn't that complex but I don't want to sum it up in a paragraph when you're missing an opportunity to give it some deeper thought. I also just don't think I'm very good at summing it up. But it isn't any great mystery given how much free stuff there is out there.
Research papers - there are no RCT's testing this out. There is a really detailed theoretical understanding being pieced together based on lots of recent neuroscience/psychology/psychiatry and inmmunology (which the books I linked to go into in detail) and thousands upon thousands of positive anecdotes. That isn't enough, we need trials but we're going to be waiting a long time for those. The MINIRICO trial is coming, though, at least. Although I see from a post on S4ME that you might have all decided it looks worthless in advance? Sorry I can't offer more. The validation from trials matters but all I can say is I wasn't able to exercise or work for years. I chose not to have children as I felt unable to care for them. I now exercise as much as I want and work and am free. If I had waited for the evidence you are understandably asking for, I'd have been ill all this time. That motivates me to tell other people to look into this work. I just don't want people to suffer. I wish more than I can say that I had tried this work years earlier. I could be a mum now. I could have done so much that I didn't get to do. I don't have any ulterior motive beyond wanting people to be well, if that is possible for them.
ABSOLUTELY. I didn't post here to convince you all that brain retraining is your answer and it will cure everyone. What is ever that simple in life? You are totally free to not try it or to try it and tell me it didn't work for you. No worries. I have friends in that position and we've managed to stay friends, I'm pleased to say. I respect their experience and they respect mine.
I posted here because this forum sums up the opposing argument as 'they're all grifters/they think we have false illness beliefs/they think it's all in our heads/they think we are exaggerating or are fixated on minor symptoms'. Nowadays, at least, that is incorrect and very frustrating. If I was having an argument with someone about vaccines and someone said to me 'all vaccines have chips in them as the government wants to know my thoughts,' I might try to get through to them but I wouldn't waste much energy on it as that is just wrong. It is a total waste of time and energy. I'd smile and nod and wish them well. I know people are going to be offended by this analogy, but that's what this conversation genuinely feels like to me so I have a right to say it.
Do some on the BPS side of things thought M.E is made up? Yes, sure. I saw some really bullying, ignorant doctors when I was ill. It was awful.
I am now (weirdly!!) on the BPS side of the debate as I have tried to look at where I need to update my knowledge, since I recovered. So I know your ideas about 'it's all in your head' are NOT what the current BPS argument is. Hence why I was asking (actually Jonathan Edwards) to read the books I recommended. I have gone from being so against any ideas involving M.E being anything other than biomedical to finding the brain so fascinating. To me, M.E is a brain/nervous system related issue and neuroplasticity means many people can get their lives back.
Same here, actually, though for me it was months. I was trying to exercise myself well for the first few months and felt more and more unwell for doing that. But that's why the thinking now is this is a more primitive/automatic part of the brain that is generating the symptoms (that is my layman's way of explaining it. I'm not a neuroscientist. Sorry). You can be completely oblivious to the fact your brain is dealing with any fear and trying to push through with exercise and still get PEM based on your brain thinking there is a threat you need to be alerted to. Brains are weird.
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Friendswithme
Established Member (Voting Rights)
Sorry, I realised I missed this. I acknowledge that many come out of doing the LP feeling worse. I am not a fan of it. These things aren't black and white, not all brain retraining programmes are created equal. I don't suggest it if people ask what to try. With that said, I think I now see why it might work for them and have seen other recovered people try to make sense of it. There was a girl in my town when I was first ill who was tube fed and a severe sufferer who recovered fully using the LP. I was so confused as it looked like quackery to me all the time I was ill. Now I'd say it is a type of brain retraining and works along the same lines other programmes do, it's just many people need far more in-depth theory to get their head around how recovery works.
In the brain retraining world, people getting worse symptoms following something like the LP doesn't mean any long term physical harm is done to the body. It's unpleasant at best and seriously distressing at worst, but it's not damaging the physical body and they still have the potential to improve or recover if they find the right programme for them (in many cases, obviously not all). I appreciate that is a big thing to get your head around. It does matter if someone comes away having deteriorated, I'm not saying it doesn't and I hate seeing stories where people have got worse, it's just there is no actual irreversible harm to physical health being done (the same as how someone can have a really hideous painful migraine lasting days and then it goes and they don't have any actual brain damage. Migraines being something brain retraining is excellent at reducing or getting rid of altogether, too). And that ties in with how you can get blood tests when you are feeling terrible with M.E and they don't show anything. And why I could have M.E one month and be totally unable to exercise and feel horribly ill and then go through the exercises I used and suddenly feel totally well again, albeit I needed to rebuild my fitness.
I just had a look at his book "Living with ME", and sections 2.2 (Self help) and 2.3 (Mind and Body) and 2.4 (Alternative and complementary approaches) give a lot of info about things that patients find helpful. Some of it seems useful, some is based on unproven or pseudoscientific theories. So I would guess that he used some of this advice himself, and that helped him improve.
Theresa
Established Member (Voting Rights)
It's important to understand that no one really knows whether someone getting worse sympyoms after the LP is due to physical harm or not but the absolutely crucial point is that irrespective of this if someone's baseline is seriously lowered as a result of the LP and they no longer have enough energy to do the necessary activities for day to day living, doctor appointments etc without crashing then the chances of any future improvement are very low and the LP has done serious harm.