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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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CFS Recovery Group London - ANS Rewire/Gupta Programme/Optimum Health Clinic

Hip

Senior Member
Messages
17,852
@CFSRecoveryGroupLondon
One ME/CFS patient on this forum did get major improvements from Reverse Therapy — see her thread here and blog here. She writes quite well, and seems to have some insight into how Reverse Therapy works.

These major improvements were obtained after only 8 one hour Skype sessions with the therapist.

From what I can gather, Reverse Therapy is a more tailored psychological therapy, where the therapist tries to uncover any habitual stress responses that an individual has learnt, with the idea that these stress responses will place the person under a lot of pressure that they may not even be aware off. So Reverse Therapy tries to identify and then change these learnt habits of stressing under certain situations, in order to bring peace and calmness to the mind. Reverse Therapy is also focused on rectifying any disconnect that you may have with your emotions (especially where you have learnt to ignore your emotions because of social requirements, etc).

This actually requires quite a bit of intelligence and empathy from the therapist, because every person will be different in terms of where these learnt stress responses lie, and the therapist must first try to uncover and identify them before they can be unlearnt. So it is not a one-size-fits-all therapy, but an individualized treatment.

That is perhaps something you could look at if you are interested in psychological therapies. To me, Reverse Therapy seems quite sane and sober, in contrast to something like the Lightning Process, which proceeds more like a cult religion of positive belief.



The reason that any form of psychological therapy gets a very negative reception on these forums only really relates to the appallingly bad politics that have surrounded ME/CFS in the last few decades (although thankfully things are improving now, in the last few years).

These bad politics essentially revolve around dodgy disability insurance companies in the US and UK trying to make a biological physical disease like myalgic encephalomyelitis look as if it is an "all in the mind" psychologically-caused condition, which it is not. The reason insurance companies did this was simply to avoid having to pay disability benefits to millions of ME patients — insurance rules usually stipulate that they will not provide long term disability payouts for psychologically-caused conditions.

As a result of these unscrupulous disability insurance companies making a physical disease like ME look as if it is "all in the mind," much of the medical profession has ignored ME patients to large degree, and biomedical research on ME had to a large extent fallen by the wayside. So these bad politics originating with the disability insurance companies shenanigans had tragic consequences for ME, consequences that still affect us today.

I am sure you must know something about these bad politics, if you have had ME/CFS for 14 years.



If it had not been for these bad politics, I am sure nobody would mind or get hot under the collar about ME/CFS patients trying out or promoting psychological therapies. Had ME/CFS been clearly categorized as a physical disease, psychological therapies would have be seen as a perhaps quirky and unusual approach, that occasionally pays dividends. But there would have been no negative views expressed about psychological therapies, if the medical profession had continued to view ME/CFS as a physical organic disease (which it was categorized as originally), and if these bad politics had not entered the arena and perverted the course of science.

But because of these bad politics, anyone who engages in psychological therapies inadvertently acts to reinforce the erroneous view that ME/CFS is "all in the mind," and all the tragic consequences that this incorrect view has led to.

And that is the sole reason why you are experiencing this negative response to your idea of a support group for psychological therapies.

Usually you will find people on this forum very helpful towards other patients. But it's just that ME/CFS patients throughout the world have long been involved in a political struggle to get ME/CFS taken seriously as a physical organic disease, and to try to eradicate from medical thinking the bogus idea that ME/CFS is "all in the mind".



However, if in some rare instances, psychological therapies do help certain ME/CFS patients, then that's fine. Those patients though would be advised to be a bit careful in how they present their success stories, so that it does not play into the hands of those insurance companies who want to make ME/CFS look as if it is "all in the mind."
 

trishrhymes

Senior Member
Messages
2,158
From what I can gather, Reverse Therapy is a more tailored psychological therapy, where the therapist tries to uncover any habitual stress responses that an individual has learnt, with the idea that these stress responses will place the person under a lot of pressure that they may not even be aware off. So Reverse Therapy tries to identify and then change these learnt habits of stressing under certain situations, in order to bring peace and calmness to the mind. Reverse Therapy is also focused on rectifying any disconnect that you may have with your emotions (especially where you have learnt to ignore your emotions because of social requirements, etc).

I am happy for the person who was helped by Reverse Therapy. However, one example of a happy experience does not prove anything.

I wasted several hundred pounds on it before giving it up as a waste of money.

It seemed to me to be a version of CBT. And as practised by the person I saw, a very poor quality CBT. She was one of the least perceptive people I've come across, only half listened to what I said and gave me 'homework' that made no sense as she focused on things that were minor side issues I'd already dealt with that happened to come up in the conversation.

When I arrived for one session in some distress because my benefit application had been refused, she basically told me to go away and come back when I could focus on what she wanted to do....

At £80 per hour about 13 years ago, it was a massive rip off.

I also wasted £99 on the Gupta DVD's and tried to work my way through them. There were some nice breathing and relaxation exerclses, but no better than ones I already knew, and the rest seemed to be a bizzare and for me completely counterproductive method for training one to stop negative thought patterns and replace them with positive phrases - bleugh! No fool like an old fool.
 
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adreno

PR activist
Messages
4,841
In addition to psychogenic dismissal – where physical ill‑health is left un-investigated and untreated – psychogenic explanations effectively pathologise a patient’s personality and encourage patients to self-blame.

This raises serious ethical problems. Is it right, for example, to tell women that whether they survive breast cancer or die from it relies on arguing less and talking more, or changing their ‘personality’, when such ideas are not substantiated? In the same way, should women and men with cardiovascular disease, deemed to be ‘Type A’ or even ‘Type D’ (worried) personalities, suffer even greater adverse psychosocial stress by being made to believe that those personalities have damaged their health?

Despite the seductiveness of psychogenic explanations for physical ill-health, the oft-expressed idea that ‘our thoughts make us sick’ is not supported by the available evidence. It is riddled with fallacies in reasoning, and causes harm to those to whom it is applied.
Bad thoughts can’t make you sick, that’s just magical thinking
 
Messages
36
Location
London
@CFSRecoveryGroupLondon
One ME/CFS patient on this forum did get major improvements from Reverse Therapy — see her thread here and blog here. She writes quite well, and seems to have some insight into how Reverse Therapy works.

These major improvements were obtained after only 8 one hour Skype sessions with the therapist.

From what I can gather, Reverse Therapy is a more tailored psychological therapy, where the therapist tries to uncover any habitual stress responses that an individual has learnt, with the idea that these stress responses will place the person under a lot of pressure that they may not even be aware off. So Reverse Therapy tries to identify and then change these learnt habits of stressing under certain situations, in order to bring peace and calmness to the mind. Reverse Therapy is also focused on rectifying any disconnect that you may have with your emotions (especially where you have learnt to ignore your emotions because of social requirements, etc).

This actually requires quite a bit of intelligence and empathy from the therapist, because every person will be different in terms of where these learnt stress responses lie, and the therapist must first try to uncover and identify them before they can be unlearnt. So it is not a one-size-fits-all therapy, but an individualized treatment.

That is perhaps something you could look at if you are interested in psychological therapies. To me, Reverse Therapy seems quite sane and sober, in contrast to something like the Lightning Process, which proceeds more like a cult religion of positive belief.



The reason that any form of psychological therapy gets a very negative reception on these forums only really relates to the appallingly bad politics that have surrounded ME/CFS in the last few decades (although thankfully things are improving now, in the last few years).

These bad politics essentially revolve around dodgy disability insurance companies in the US and UK trying to make a biological physical disease like myalgic encephalomyelitis look as if it is an "all in the mind" psychologically-caused condition, which it is not. The reason insurance companies did this was simply to avoid having to pay disability benefits to millions of ME patients — insurance rules usually stipulate that they will not provide long term disability payouts for psychologically-caused conditions.

As a result of these unscrupulous disability insurance companies making a physical disease like ME look as if it is "all in the mind," much of the medical profession has ignored ME patients to large degree, and biomedical research on ME had to a large extent fallen by the wayside. So these bad politics originating with the disability insurance companies shenanigans had tragic consequences for ME, consequences that still affect us today.

I am sure you must know something about these bad politics, if you have had ME/CFS for 14 years.



If it had not been for these bad politics, I am sure nobody would mind or get hot under the collar about ME/CFS patients trying out or promoting psychological therapies. Had ME/CFS been clearly categorized as a physical disease, psychological therapies would have be seen as a perhaps quirky and unusual approach, that occasionally pays dividends. But there would have been no negative views expressed about psychological therapies, if the medical profession had continued to view ME/CFS as a physical organic disease (which it was categorized as originally), and if these bad politics had not entered the arena and perverted the course of science.

But because of these bad politics, anyone who engages in psychological therapies inadvertently acts to reinforce the erroneous view that ME/CFS is "all in the mind," and all the tragic consequences that this incorrect view has led to.

And that is the sole reason why you are experiencing this negative response to your idea of a support group for psychological therapies.

Usually you will find people on this forum very helpful towards other patients. But it's just that ME/CFS patients throughout the world have long been involved in a political struggle to get ME/CFS taken seriously as a physical organic disease, and to try to eradicate from medical thinking the bogus idea that ME/CFS is "all in the mind".



However, if in some rare instances, psychological therapies do help certain ME/CFS patients, then that's fine. Those patients though would be advised to be a bit careful in how they present their success stories, so that it does not play into the hands of those insurance companies who want to make ME/CFS look as if it is "all in the mind."

Thanks for your reply. I actually did reverse therapy and really liked it for 2 sessions but they said because I had drug problems in my past that I needed to get help for addiction. I did but I never went back. But the premise seemed good.
 
Messages
36
Location
London
Ten years ago I tried Ashok Gupta's "amygdala retraining" program - no stone left unturned. One of the exercises involved consciously ignoring my body's distress signals that I was over doing it, assuming apparently that it was my focus on how I felt that caused my symptoms, rather than the symptoms causing the focus. I promptly crashed after deliberately ignoring what my body was telling me.

Actually Phoenix Rising is a "recovery focused" group -that is our prime goal! We all want our lives back. It's not a negative place at all, and actually is one of the few things that give me hope. I have learned so much here. and many have been badly hurt by the mind-body theories surrounding ME/CFS, as institutionalized by the British medical system and others.

That's certainly not the message I received from the Gupta programme. I do know people it's helped but once the dislike about the programme itself sets in its hard to overcome. That's why I don't actually do Gupta programme. It set in and I couldn't get over it.
 
Messages
36
Location
London
@CFSRecoveryGroupLondon i think you are mistaken in believing that, just because you were in your words 'frightened to get better', people here are not trying to improve. What makes you think that a mind-body approach is the only way to try to improve your health?

I've been a member of this forum for years now and have never come across anyone posting who isn't trying to get better. The difference is only that you think mind-body programmes work, and most of us think they don't! Most of us have tried at least one, and I'm sure we have been advised on nearly all of them by well-meaning friends and family.

Of course, there are people who complete the courses who feel better afterwards than they did before. That's great for them, and nobody here would say differently. But.... that doesn't mean that the approach works for all. We're not talking about one illness here, or one level of illness, or one reaction to illness.

My personal belief from reading a huge amount of research and opinions from a wide range of sources is that ME as defined by criteria such as the Canadian consensus criteria is auto-immune in nature. No amount of mind-body work is going to remove the problematic auto-antibodies from my body. But it's quite possible that medicine will. So I'm very hopeful and I don't anticipate the rest of my life like this. But I'm waiting for my time to come.

You may think that you've been 'attacked' for your views, but I would respectfully ask that you consider that in fact, you have posted those views in such a way as to make others here feel that in your opinion, they don't want to get better and they are just being negative and frightened. What is supportive about that?

Enough said. I'm glad your health is improving for whatever reason and I hope that it continues to do so.

No I don't think only mind/body programmes work. I've listened to many many recovery stories from people from a variety of sources and mind/body are only a handful of them. Most people I know who got better don't know how they did it, they just did and ever looked back. Mind/body is something I've studied and lots of my friends have done and succeeded in so I emotionally connect to it more so than medical interventions.

I'll acknowledge that my responses could come across in a way that's perceived as that yes. I do not think that, however. There's the subtle difference of intention which cannot be translated online - only in person.
But I hope that you will acknowledge that people in this group have responded to me in a hostile way when I was looking for support. I literally came here looking for support - read my first post. If a component of mind/body programmes is belief and I said I'd made progress why did so many people berate mind/body programmes and tell me that they don't work? Was that supportive of a fellow sufferer? Or was that knocking down something which was working for me? Was that bringing me down to their level so that mind/body doesn't work for me? I don't know for sure as I can't tell intention online.

Thank you. I hope things continue upwards as they have.
 

Artstu

Senior Member
Messages
279
Location
UK
That's certainly not the message I received from the Gupta programme. I do know people it's helped but once the dislike about the programme itself sets in its hard to overcome. That's why I don't actually do Gupta programme. It set in and I couldn't get over it.

If only you could stop it setting in hey.
 

Hip

Senior Member
Messages
17,852
And as practised by the person I saw, a very poor quality CBT. She was one of the least perceptive people I've come across, only half listened to what I said and gave me 'homework' that made no sense as she focused on things that were minor side issues I'd already dealt with that happened to come up in the conversation.

I can see how superficially one might construe CBT and Reverse Therapy to be similar, but they are quite different; in fact, I would call them polar opposites.

CBT has this brainwashing quality to it: the therapist is supposed to identify negative beliefs or negative thinking patterns, and then try to erase those, and replace them with positive beliefs. CBT is a positive thinking therapy. Positive thoughts are good, negative thoughts are bad. It may be useful in some contexts, eg, dealing with panic attack triggers.

Reverse Therapy by contrast is more like de-brainwashing. Reverse Therapy is about identifying how an individual has inadvertently learnt to ignore their own true emotional self, to ignore their desires, needs, and intuitions, often due to culturally sanctioned behavioral norms that society has brainwashed them with.

Think for example of certain very strict and puritanical religions educating you to ignore you own desires and emotions. Reverse Therapy identifies how you have been taught to ignore your inner needs and emotions, tries to undo this blockage, so that you can express these natural emotions. In that sense, Reverse Therapy just works to liberate your inner emotional wants and needs, by de-brainwashing you of the thoughts or behaviors that act to suppress your inner needs.

I should imagine, though, that with Reverse Therapy, the intuitive and empathetic sensitivity of the therapist will be pivotal to the success of the treatment. So if you have a bad therapist, I doubt if you will benefit.



Personally, I don't sense that something like Reverse Therapy would help my ME/CFS, which I why I have not pursued this or any other psychological therapies. My own feeling is that my illness is purely driven by a physical pathophysiology in the body and brain, and will only be addressed by biomedical intervention.

And I used to be someone very interested in things like meditation, psychology, spiritual development, and all sorts of mind improvement approaches. I used to love this area, and used to read tons of literature on these sort of subjects, and go to lots of courses, talks, etc. But now I feel quite sure that none of this will help my ME/CFS, and only the advancement of medical science will fix my ME/CFS, and I think only science will fix the ME/CFS in most patients.

However, if an ME/CFS patient does intuitively feel that a psychological therapy might potentially help them, I would not like to discourage them from pursuing that angle, because I don't think you should ignore your intuitions.

But it would be great if all ME/CFS patients who write about psychological therapies preface their comments with a clear statement that ME/CFS is a physical biological disease, and that their experiments with trying to improve their health from psychological techniques in no way implies that ME/CFS is "all in the mind."
 
Messages
36
Location
London
Your sentence actually says the opposite of what you wanted it to say, because you don't know what "eschew" means. Your belief that you can just use it anyway and it'll mean what you want it to mean is sadly ineffective. You have just ended up saying that billioniares avoid hard work and belief. I would suggest that you consult a dictionary, but I'm scared of being labelled as negative and dark so I won't.

I find your patronising pointing out of a grammatical error bordering on bullying. I had brain fog and used the wrong word because I was worked up.
Way to be supportive and shaming of a CFS sufferer - the very thing you've just accused me of you've just thrown back at me.
2 people liked your post too when you've been shaming of me. Head bully and supporting cast.
 

Hip

Senior Member
Messages
17,852
@CFSRecoveryGroupLondon
I am not wanting to change the thread topic, but have you self experimented much with the sort of standard drug or supplement treatments that have helped some ME/CFS patients?

I mean easy and inexpensive treatments such as: low-dose naltrexone (LDN), vitamin B12 injections or high dose B12 sublingual tablets, the methylation protocol, oxymatrine?

These sort of therapies tend to help only a small percentage (eg 10% to 30%) of patients, but when they do help, they can provide a great improvement in quality of life.

Dr Chia finds LDN helps only a small percentage of ME/CFS patients, but for those it helps, he says it does so very significantly. Ref: 1 You can buy naltrexone at the prescription-free pharmacies listed in this post.

In my own case, none of those worked for me, but then just by chance, I discovered that high dose selenium led to significant improvements in brain fog and fatigue, and I have been following this selenium protocol since 2012.

I complied a roadmap of chronic fatigue syndrome (ME/CFS) blood tests and treatments document detailing the most common ME/CFS treatments that are worth experimenting with.


If you have generalized anxiety disorder, the supplement treatments detailed in this thread, especially N-acetyl-glucosamine, have proved highly effective for reducing or eliminating the anxiety many ME/CFS patients who tried them. N-acetyl-glucosamine is similar to the glucosamine supplement used for joint pain.



This is not to draw you away from your interest in psychological therapies; it's just to show that there are many other treatment options that you can also pursue, and do so largely independently of your doctor (us UK patients know that the NHS is next to useless at the moment for providing helpful ME/CFS treatments).
 
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TiredSam

The wise nematode hibernates
Messages
2,677
Location
Germany
I find your patronising pointing out of a grammatical error bordering on bullying. I had brain fog and used the wrong word because I was worked up.
I was pointing out a vocabulary error. Yes, it was sarcastic, but if your only response to people's substantive points is a post claiming to rub shoulders with billionaires and using fancy words what kind of answer do you expect to get?

Way to be supportive and shaming of a CFS sufferer - the very thing you've just accused me of you've just thrown back at me.
That was kind of the point.

2 people liked your post too when you've been shaming of me. Head bully and supporting cast.
That's one way of looking at it, if you want to create a narrative with me as the bad guy and you as the poor victim. Another is that nearly everyone on this thread had the good taste not to like my descent into sarcasm, and have asked you some reasonable questions very politely.

But I hope that you will acknowledge that people in this group have responded to me in a hostile way when I was looking for support. I literally came here looking for support - read my first post.
That was where the problem started really, insisting that only supporters respond. People are harmed by the programmes you propose, for reasons that have been explained to you. Other forum members have a right to air their concerns.

You give no details about yourself (you've even removed your picture - worried about a google pic search?), but are trying to collect email addresses.

If a component of mind/body programmes is belief and I said I'd made progress why did so many people berate mind/body programmes and tell me that they don't work? Was that supportive of a fellow sufferer? Or was that knocking down something which was working for me? Was that bringing me down to their level so that mind/body doesn't work for me?

Everyone is being supportive of fellow sufferers by pointing out the dangers of these programmes and trying to engage you in a substantive discussion of it.

"Bringing me down to their level" - can you explain why you consider your "level" (moral? spiritual? intellectual? what?) to be superior to those who have concerns about these programmes? Sounds a bit holier than thou and moral highgroundy to me.

Taking offence, playing the victim, adopting the moral high ground, these are all very weak arguments or ways to evade the questions that are being asked of you or the points that are being made. You've made it clear you aren't interested in hearing from anyone who doesn't support you / isn't on the same page - how do you expect people to react?
 

Snow Leopard

Hibernating
Messages
5,902
Location
South Australia
This forum is a really dark place and I regret posting on here.

I've felt really unwelcome here.

Given that the word "negative" was the eighth word in your first post, what did you really expect?

Many of us have been ill for years and have tried the therapies you cite, to no benefit. We don't like being told we've been doing it all wrong when we've already been down the same path as you. That's why many of us are skeptical.
 
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Messages
36
Location
London
I was pointing out a vocabulary error. Yes, it was sarcastic, but if your only response to people's substantive points is a post claiming to rub shoulders with billionaires and using fancy words what kind of answer do you expect to get?


That was kind of the point.


That's one way of looking at it, if you want to create a narrative with me as the bad guy and you as the poor victim. Another is that nearly everyone on this thread had the good taste not to like my descent into sarcasm, and have asked you some reasonable questions very politely.


That was where the problem started really, insisting that only supporters respond. People are harmed by the programmes you propose, for reasons that have been explained to you. Other forum members have a right to air their concerns.

You give no details about yourself (you've even removed your picture - worried about a google pic search?), but are trying to collect email addresses.



Everyone is being supportive of fellow sufferers by pointing out the dangers of these programmes and trying to engage you in a substantive discussion of it.

"Bringing me down to their level" - can you explain why you consider your "level" (moral? spiritual? intellectual? what?) to be superior to those who have concerns about these programmes? Sounds a bit holier than thou and moral highgroundy to me.

Taking offence, playing the victim, adopting the moral high ground, these are all very weak arguments or ways to evade the questions that are being asked of you or the points that are being made. You've made it clear you aren't interested in hearing from anyone who doesn't support you / isn't on the same page - how do you expect people to react?

What did I expect? Maybe not to be bullied and shamed and people to like that post.

So you wanted to be shaming? While deriding being so. Logical and kind and supportive.

So I have a choice which way to take ganging up on me? I can CHOOSE to be offended or not? Not that you can CHOOSE to bully me or not and decide to not do it.-

Everything you have accused me of you, you have done yourself. The 'what do you expect?' is what rape apologists use - I think someone earlier referred to it as victim blaming.

I took my picture off of here because I didn't want it to be on here. I haven't tried to "collect" anything. I asked people to message me if they wanted to join the group.
 
Messages
36
Location
London
Given that the word "negative" was the eighth word in your first post, what did you really expect?

Many of us have been ill for years and have tried the therapies you cite, to no benefit. We don't like being told we've been doing it all wrong when we've already been down the same path as you. That's why many of us are skeptical.

Fair enough.

Did you do any of the therapies detailed? did they work for you? did you make any improvements?
 

Mary

Moderator Resource
Messages
17,366
Location
Southern California
That's certainly not the message I received from the Gupta programme. I do know people it's helped but once the dislike about the programme itself sets in its hard to overcome. That's why I don't actually do Gupta programme. It set in and I couldn't get over it.

I didn't stop the Gupta program because I disliked it - I stopped it because it caused me to crash and hurt me.

FWIW, I meditate almost every day, have for many years, it helps keep me sane with this awful illness; but it has not improved my physical health.