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

I just wanted to say I am here but I can't necessarily respond every day (plus there is a lot to try to keep up with, I'm just one person and there are a fair few of you).

I will try to come back to things I've missed. I think I saw something about me ignoring the post on potential harms. No, I just can't keep up. I can come back to it.
 
UkPoster said:
This is interesting reading on autism and psychosomatic symptoms:
Click to expand...
That’s a «study» using questionnaires with arbitrary questions. There’s no value to any of it because the content validity is far too poor.
UkPoster said:
And here is a paper on numbers of young autistic adults who have psychosomatic symptoms: https://onlinelibrary.wiley.com/doi/abs/10.1002/aur.2671
Click to expand...
This is just more of the same. They are comparing arbitrary values with other arbitrary values and thinking they’ve understood something real.

You’re not going to convince anyone with questionnaire research.
 
I'm not engaging here because I think brain train people come over to practice and polish their arguments. That will serve them well when lobbying and influencing people in power.

That's my theory anyway. I would've done a research study to prove it but it's hard to get funding and I have higher priorities in life.
 
Responds to a deleted post about reasons why no research has been done.

It’s funny how this is just excuses for these poor people that have some grand insight about how to heal people, but they can’t stop helping to check if they are actually helping. Or maybe they tried to, but someone (who?) stopped them. Was it those almighty patients that stopped them? With backchannel contact and friends in high places? This is ridiculous.

Have you ever considered the possibility that they had no intentions of ever doing any proper trials? And that maybe the reason is that they know they’ll have a hard time selling a treatment that has robust negative results compared to having incredibly weak «promising» results? That they prefer to keep the dream alive because that’s how they’ll make the most money, gain the most fame and influence, and feel the best about themselves «helping» others?
 
Last edited by a moderator:
I think what’s more interesting in these recovery stories are the NLP techniques underpinning them, and the brain train enthusiasts arguments. They are absolutely riddled with it, which is another reason they give me the ick.

Presuppositions - recovery is possible! Neuroplasticity remoulds brains!

Reframing - not only of the “I feel tired/my brain is mistakenly firing” type, but also of the “I was diagnosed with incurable ME/I recovered” sort

The Yes set-
You want to get better - yes
You have a brain - yes
Your brain can control your body - yes
You can rewire your brain patterns using neuroplasticity!

-Establish common ground
-add a reasonable proposition
-whilst they're agreeing with you, make a massive causative leap

Makes sense as Lightning Process is based on NLP
 
Felis Catus said:
I'm not engaging here because I think brain train people come over to practice and polish their arguments. That will serve them well when lobbying and influencing people in power.

That's my theory anyway. I would've done a research study to prove it but it's hard to get funding and I have higher priorities in life.
Click to expand...
They can do a study. They’re all in COFFI, better placed than most of us are to lobby
 
Felis Catus said:
I'm not engaging here because I think brain train people come over to practice and polish their arguments. That will serve them well when lobbying and influencing people in power.

That's my theory anyway. I would've done a research study to prove it but it's hard to get funding and I have higher priorities in life.
Click to expand...
Honestly, this isn't why I'm here.

I don't have any influence over 'people in power' and I'm not lobbying anyone. I'm someone who recovered and I think its important to be talking to people here. You are welcome to not believe me but 'people in power' have a lot on their plates with migrants/the boats/Russia terror attacks/climate change. I'm afraid few of them then care much about something like M.E, because of the comparatively small numbers of patients involved.
 
MrMagoo said:
I think what’s more interesting in these recovery stories are the NLP techniques underpinning them, and the brain train enthusiasts arguments. They are absolutely riddled with it, which is another reason they give me the ick.

Presuppositions - recovery is possible!

Reframing - not only of the “I feel tired/my brain is mistakenly firing” type, but also of the “I was diagnosed with incurable ME/I recovered” sort

The Yes set-
You want to get better - yes
You have a brain - yes
Your brain can control your body - yes
You can rewire your brain patterns using neuroplasticity!

-Establish common ground
-add a reasonable proposition
-whilst they're agreeing with you, make a massive causative leap

Makes sense as Lightning Process is based on NLP
Click to expand...
There is lots to brain retraining outside NLP. I don't know a single thing about NLP, I couldn't tell you any details about it and I recovered using brain retraining.
 
Felis Catus said:
I'm not engaging here because I think brain train people come over to practice and polish their arguments. That will serve them well when lobbying and influencing people in power.

That's my theory anyway. I would've done a research study to prove it but it's hard to get funding and I have higher priorities in life.
Click to expand...
I flipping hope they are, their arguments are boring and they need better PR than they have.
 
Peter T said:
I think this illustrates that no one should be dictating to people with ME/CFS what they should be doing or not doing, rather professionals should be encouraging people to listen to their own body and be given permission not to do anything that makes them feel worse.
Click to expand...

@Peter T - The most useful thing I came across in the early years (God knows where from - I was mostly barely conscious with no communication out ) - .... was .....

"Listen to your body"
.
 
Mij said:
Curing disease with positive vibes lacks the biological mechanism required to repair or reverse severe medical conditions.



What did you recover from? Why do you feel it's so important on a ME/CFS science forum?
Click to expand...
Also, it's really not about positive vibes. If it was, I'm sure you'd all be better instantly.
 
Lou B Lou said:
@Peter T - The most useful thing I came across in the early years (God knows where from - I was mostly barely conscious with no communication out ) - .... was .....

"Listen to your body"
.
Click to expand...
Except the core teaching from brain retraining is that the brain can be over-sensitive to threat, generate symptoms which are disabling as a protective response and that listening to the symptoms alone can lead you into years of chronic symptoms that could otherwise be lessened.

So while listening to your body may seem safest, actually it might be keeping you sick. I'm not offering this as medical advice, I'm trying to explain how brain retraining looks at things.
 
UkPoster said:
This is interesting reading on autism and psychosomatic symptoms:
https://journals.sagepub.com/doi/full/10.1177/13623613221109717
And here is a paper on numbers of young autistic adults who have psychosomatic symptoms: https://onlinelibrary.wiley.com/doi/abs/10.1002/aur.2671
Click to expand...

The first one is entirely done as an internet survey with questionnaires. That is not a valid way to do epidemiological studies, and as we have found, questionnaires designed to assess psychological symptoms are not appropriate to be applied to people with physical illnesses.

The second one is paywalled.

I note also that you have made an unjustified leap here. Both papers are about people's experience of somatic symptoms. They do not say they are psychosomatic ie they do not use a name for their symptoms that attributes causation being psychological. Maybe it's the experience of unpleasant chronic symptoms with a physical cause that hasn't been found and that their doctors don't believe that leads people to experience psychological difficulties. There is no cause and effect established here. The first paper attributes the association with somatic symptoms to things like female gender and some psychological features, not to autism.
 
Last edited:
UkPoster said:
Honestly, this isn't why I'm here.

I don't have any influence over 'people in power' and I'm not lobbying anyone. I'm someone who recovered and I think its important to be talking to people here. You are welcome to not believe me but 'people in power' have a lot on their plates with migrants/the boats/Russia terror attacks/climate change. I'm afraid few of them then care much about something like M.E, because of the comparatively small numbers of patients involved.
Click to expand...
Did you just conflate “people in power” the establishment like Sir Simon Wessley, the people who run ME services, the Health Secretary, did you really just conflate that with “migrants/the boats” “Russia” and “climate change”
Pleeeeaaasssse, this is a serious place

Also, can I explain the UK government to you…there’s a department for Health, something called The Home Office, Foreign Commonwealth and Development Office…
en.wikipedia.org

Government of the United Kingdom - Wikipedia

en.wikipedia.org en.wikipedia.org
 
Hutan said:
If anyone had the tools and knowledge to know that fatiguing illness after infections is extremely common and that the vast majority of people who experience it recover within three years, it would be Garner. We've said it before, very little about Garner's reported experience makes sense.
Click to expand...

People behave strangely at times. I don't think Garner's responsibility alters the fact that he seems to have been badly advised. I don't think it helps to pretend that bad advice is not there in the background. I have seen enough evidence of it to know that it does.
 
UkPoster said:
Also, it's really not about positive vibes. If it was, I'm sure you'd all be better instantly.
Click to expand...
Any patient group would be justifiably upset if you told them that their illness is rooted in fear and that they needed to say STOP STOP STOP to their symptoms. (or meditate, or do somatic tracking aka mindfulness, or affirmations, --all of which may help relieve stress but do not cure disease)
 
You must log in or register to reply here.
Back
Top Bottom