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

[Ysabelle-S]

I'm just making a general comment rather than replying to anything in particular:

ME is a complex biomedical disorder, so it's not possible to get better through mind-body therapies. However, I have no doubt that some people diagnosed as having ME actually have something else, because of the poor diagnostic criteria, and in those cases there's always a possibility they might improve that way, or they might improve anyway, regardless of whether they try one of these therapies or not.

As far as ME is concerned, a small number of people do go into remission. It's impossible to think about it as anything other than remission since we know that many have fallen ill again, even years down the line. Until medical science works out the underlying mechanisms and the biomarkers, as well as tried and tested treatments over time, we can't really think in terms of cure.

I've been ill for 32 years and I know that mind over matter doesn't work. It might seem to work short-term, but the problem is what happens afterwards. There's a temptation to overdo it, and then there's a crash, or the patient gets a virus which knocks them down again, or the positive thinking or therapy or whatever didn't work except as a placebo, and the placebo effect is over. If we have, for example, an immune-regulated energy production problem, then our bodies will malfunction until that's fixed.

There's some really interesting research going on in Norway right now that might lead to treatment. A phase three trial of a drug which will be out of patent (I think it already is out of patent in many places) means if it works, the treatment will be less expensive than before. The other drug is still in phase two, but they both seem to be pretty promising. With other research being done on energy production problems, and metabolomics studies, the field has never looked so promising. I say that having been ill for more than three decades.

 

[CFSRecoveryGroupLondon]

I am having to restrain myself in the words I use, but I cannot let this pass.

I would like to draw your attention to a worldwide and very powerful existing support group for ME patients who offer each other information, support and friendship,without having agendas to push or anything to sell. We entertain each other, we commiserate, those with specific medical or other experience gently offer our experiences. We spend Christmas together, we discuss our medical appointments and problems with benefits, some have kids who have ME and some are retired....Our experiences of life and ME vary enormously, we have different faiths, political views and have different sexual orientation. Some of us believe that meditating and having no medication works for them, and others are taking a lot of medication and supplements- none of that stops us for being here for one another.

That support group is Phoenix Rising! Maybe you didn't know that, as you have only posted once.

Believe me, life before finding PR was grim.

From time to time we get a newbie on to explain how much they are now miraculously 'better' and just want everyone to do what they do in order to do the same. We are ALWAYS joyful to know anyone is better! but it is important to understand that your opinions are not THE opinions, and there are 2) reasons I had to post on this

1) You need to have the compassion to realize that for many of us ME is not a short term illness- it is our past and probably our future. Your words are being read by people who are seriously ill and in horrible pain- it is just insensitive to talk about how much exercise you can do in that way.

2) On the subject of letting people make up their own minds- by it's very nature, people on PR are vulnerable!! Most of us would give everything we own to get well or even slightly better. I love these guys and would do anything I can to protect them from being given false hope that only leads to greater disappointment.

I have been ill for 14 years. It's not short term for me either. I have suffered with Doctors appointments, alternative therapists, therapists, family friends not believing me, me in the end not believing me. This isn't a race to the bottom though, about who has it worse or has had it worse. There is no pride in me for having suffered. Just sadness and regret that I had to suffer for so long.

I take your point. I understand people are vulnerable. But people also need hope. I didn't even look at "getting better' for 6 years. I had resigned myself to being ill, and decided that having CFS was my life till I died, because I didn't want to feel the failure again. That changed when my best friend went off the radar for a while and got better from a mind/body programme. Because I knew how ill she had been I knew she wasn't lying about it and I felt that I could also get better.
Look I can't change anyone's mind here because the views seem pretty entrenched - mine are too. I had the views expressed here for a long time. But it changed for me. False hope was awful - it stopped me trying for 6 years. I didn't go anywhere, do anything, leave the house. I've done my time with that though and feel that now I'm eager and willing to take responsibility for my health in a different way and do lots of little things to add up to a big change. I can honestly say that I expected someone else to make me better before and now I don't want that to happen.

I really thought this message board was a bulletin type board where you post things and people who are interested can reach out. Clearly this isn't that.

 

[CFSRecoveryGroupLondon]

And how do you think it makes people feel when you suggest that they could be in recovery if they were as awesome as you and just tried hard enough? It implies blame for those who fail to heal themselves, and we have enough shit in our lives without people adding to it in this manner.


You're denying the reality of ME. You're denying our nearly universal experiences of thought-altering therapies failing us, and even harming us in the process. You're denying the symptoms which grind us up and spit us out if we try to think we're feeling a bit better.

If you read blame into that that that is on you. I don't don't use words like blame about one's health because it's loaded with judgement. I know how difficult is was to get my health to even where it is now. I've been housebound, out of work, unable to go in a car or a plane. I'm not a snake oil salesmen coming along trying to sell anyone anything. I put a post on a message board for additional support - I'm not recovery guru and have not claimed to be. I shared my experience.

 

[IThinkImTurningJapanese]

Hi everyone

I know people have strong negative opinions about mind/body programmes

This forum is a really dark place and I regret posting on here.

I've felt really unwelcome here.

You know the thing is that you are essentially, "preaching to the choir". Many here are experts at any possibilities for recovery, and you're insulting them when they disagree with you.

I'm glad that you have found something that has helped you and I want to offer you a lesson in psychology, here let me Google that for you.

Ohh, and just to let you know I'm not trying to attack you, I'll offer an additional comment
regarding my attitude.

 

[CFSRecoveryGroupLondon]

Thanks for applying the label "negative" to all opinions other than your own within your first sentence, before you had heard anything anyone else had to say.


But the only opinion they are allowed to hear before they join the support group is yours?


I am answering nicely with "no" to that.

You say:


But then:


Which reads like a claim about people recovering to me.


Why are you the only person allowed into that space to give your opinions while they are thinking? Why would you even ask for that privilege?


Possibly, if you only want to speak on the precondition that no exchange of views follows. It's kind of what we do.

Is that another claim about recovery?

There's that negativity label again, ramped up with the adjective "stark" for good measure. Most ME sufferers don't believe they'll get better because of the fact that most ME sufferers don't get better. Why should they at the moment, there's no treatment or cure. Sorry if you find that unduly negative. Happy thinking won't change it.

That's lovely. So you are promoting a belief system that requires everybody to be on the same page and doesn't allow any criticism. Sounds like a cult to me.


You callin' me scared now? Are you familiar with the expression "patient blaming"?

FFS.

This forum is a place of light. You have been invited to discuss your views, but you have refused.
The welcome you extend to people joining your group is conditional on them being on the same page and uncritical. You've had a better welcome here than that.

Negative meaning not positive towards - and clearly the majority of people have non-positive feelings towards mind/body therapies. I have posted a similar hook to try and find other people doing mind/body programmes to meet IRL and not just online and the response has been to berate me and the programmes and tell me 'you can't get better from them'. To head that off this time I included a preamble to ask people who had strongly critical to please not comment. Clearly it didn't work. I would have preferred 0 responses than the many I've had but I've defended myself and my viewpoint because my viewpoint hasn't gone down well.

Yes I was making a claim about MY OWN recovery. When I've worked really hard at it I have made progress. There is nothing wrong in me making progress in my health and sharing that to other people with CFS. I'm not threatened by others getting better, I'm inspired.
Everyone in the recovery group has also made progress. They would confirm that too. It's a group of individuals so some quickly and some slowly but it's happening.

I'm not a Scientologist - I'm someone with CFS trying to get better over a number of many years.

 

[CFSRecoveryGroupLondon]

Hello again, @CFSRecoveryGroupLondon . I am sorry you feel unwelcome and feel you are being trolled when people question your motives and the therapies you support.

If you think carefully about what you have done, perhaps you will understand better where we are coming from.

.......................................

You have joined a large diverse group of people, some of whom, including me, have tried the therapies you list unsuccessfully.

I have not yet come across a single person in here who is not interested in trying their hardest to find what works for them, whether it be pacing, aggressive rest therapy, nutritional treatments, herbal and drug treatments. Many of us have also tried psychological treatments.

We also follow closely all the research around the world, good and bad, that may lead eventually to proven treatments.

We share our experiences, good and bad, and learn from these and support each other.

Some people choose to tell their stories of things they have found worked for them. We celebrate their good fortune, but we do not take anecdotal evidence as proof that a therapy is right for everyone.

..................

You have given us no information about yourself that we can verify, yet you invite us to provide you with our private e-mail addresses.

You ask us not to discuss or criticise these therapies even though they are unsupported by any scientific evidence.

You tell us that it is your determination that is making your health better, implying that we, unlike you, are not really trying hard enough and don't want to get better.

You invite us to join a group that only accepts people who believe these therapies will help them to recover.

You denigrate groups where people are allowed to discuss their worsening symptoms and fears that they may not recover and provide support for each other in this context.

Can you be surprised that you get a negative response.

Look I didn't mean to imply anything. I have struggled myself.

The group is for people who are doing these recovery programmes, and yeah part of working a programme is believing it will help you get better. I don't see anything wrong with that.

 

[CFSRecoveryGroupLondon]

You know the thing is that you are essentially, "preaching to the choir". Many here are experts at any possibilities for recovery, and you're insulting them when they disagree with you.

I'm glad that you have found something that has helped you and I want to offer you a lesson in psychology, here let me Google that for you.

Ohh, and just to let you know I'm not trying to attack you, I'll offer an additional comment
regarding my attitude.

If it takes a placebo or a self-fulfilling prophecy to get me better I'm willing to try it.
I don't think that working a mind-body programme says that I or anyone else made up CFS in their head or that it's a mental illness. If something can work, that doesn't negate the fact that it's a real physical illness.
I do believe there is a mental, physical, and spiritual component to this illness. I'm not religious BTW.

 

[Undisclosed]

This forum is a really dark place and I regret posting on here.

I've felt really unwelcome here.

It absolutely isn't a 'dark' place. It's a place to post information, exchange ideas, read the latest research, say what works for you, discuss medication, supplements, protocols. It's a place where friends from all over the world meet up and support each other. Many can't get out to face-to-face meetings and only have the internet to do any socializing, supporting, etc.

Phoenix Rising would become a very dark place if we only allowed certain opinions or told members they were only allowed to talk about certain things.

You are very welcome here, it's some of your statements that members are questioning or disagreeing with. You are welcome to have any opinions and beliefs you want, but you should not denigrate others for holding different opinions and beliefs.

I'm happy to delete this post if the moderator wants. It's not gone anywhere except trolling and flaming.

We don't remove threads unless the contain major rule breaches -- eg. blatant advertising, defamation or libel that would result in a law suit, totally off-topic thread that has absolutely nothing to do with ME and doesn't belong in any forum. We close threads that get really contentious and are better left closed.

You are accusing many of our long-term and well-respected members of trolling and flaming. They are doing nothing of the sort. They are offering opinions and doing it in a very polite manner. Read our rules, and if you see any please use the report button. One of our rules is to refrain from calling other members trolls as that is a personal attack. Basically the golden rule around here to keep the peace is to refrain from directing negative personal comments (aka personal attacks) at members and stick to commenting on the content of a post. Sometimes, lines get crossed and we try to deal with that the best we can.

 

[A.B.]

I do believe there is a mental, physical, and spiritual component to this illness.

That doesn't mean it can be solved at a mental or spiritual level.

 

[Valentijn]

If it takes a placebo or a self-fulfilling prophecy to get me better I'm willing to try it.

The placebo effect is very literally an illusion. Patients report feeling a bit better as the result of a placebo, but objective measurements involving their condition show no improvement. Placebo doesn't make anyone better, it just makes them think they are.

 

[sarah darwins]

The group is for people who are doing these recovery programmes, and yeah part of working a programme is believing it will help you get better. I don't see anything wrong with that.

There’s a lot wrong with it:

- telling people they have to believe in a treatment in order for it to work is highly unethical. Personally I’m appalled that organisations like Optimum Health (you called them ‘Optimal’ - that’s wrong) and Gupta are allowed to make claims for which they have no evidence then insist that the treatments only work if people believe. They use that excuse for failure over and over. We have members on this site who have committed to such treatments, handed over significant amounts of money and then been told it was their own fault when the treatment didn’t work — they didn’t believe enough or work at it enough. It’s a detestable practice which is repeatedly employed by the for-profit organisations selling these ‘treatments’. They rely on the inevitability that some people who sign up with them won't have ME at all (they're usually signing up online and don't need an authoritative diagnosis) and on some being misdiagnosed to build a small cohort of true believers who will claim they were 'cured' of ME by this treatment. It's a clever marketing ploy, one that can't really fail. And it's unethical as hell. In fact it's an age-old con.

- because these programmes generate a lot of easy money for the purveyors of them, they advertise extremely widely, especially online. Their repeated claims of miraculous success, of having the answers which have so far eluded world class medical researchers, are one of the main reasons why people with ME find themselves stigmatised by the wider public, caricatured in the media and largely abandoned by healthcare systems across the world. The lack of serious scientific enquiry into this disease is nothing short of a scandal, but the aggressive advertising of systems like Gupta and Optimum makes it very hard to get medical scientists to take this disease seriously. They contribute heavily to the ongoing existence of a conception of this diseases as something flakey and trivial. The promotion of these unevidenced therapies has consequences for all of us.

I’m unclear about why you need to publicise your group on here. These ‘treatments’ have abundant websites and would, I’m quite certain, be delighted to feature your support group and publicise it for you.

 

[Undisclosed]

That doesn't mean it can be solved at a mental or spiritual level.

Indeed, during my nursing days, I worked with some very ill people who resorted all sorts of ways to help cope with their illnesses which is what most programs that involve psychological theory (mind) rather than medical treatment are meant to do. It is difficult to cope with serious illness and coping strategies can help but they are not a means of recovery. It's unfortunate some are using these so-called programs as means to promote recovery and making tons and tons of money from desperate people. It's fine to consider all sorts of treatments, protocols, programs but promoting them as a means of recovery is problematic which is what members are trying to point out.

 

[erin]

If you think this is a dark place, either you've not been seriously searched this forum extensively or maybe you don't have a critical mind and least to point out no sense of humor.

PR is not about one's experience ONLY, it's an online community, not only bound by one illness, I came across many who came here to find out about or share experiences of other illness, all kinds of stuff about hobbies, relationships, emotional support, jokes, etc.

You were here today, not joined into any kind of discussion that's going on, open one thread of yours, talked about your own experience only, stated that you are not interested in others experiences and thoughts, didn't like the answers you get and now this is a dark place. With this kind of approach in fact the world is a dark place.

 

[CFSRecoveryGroupLondon]

There’s a lot wrong with it:

- telling people they have to believe in a treatment in order for it to work is highly unethical. Personally I’m appalled that organisations like Optimum Health (you called them ‘Optimal’ - that’s wrong) and Gupta are allowed to make claims for which they have no evidence then insist that the treatments only work if people believe. They use that excuse for failure over and over. We have members on this site who have committed to such treatments, handed over significant amounts of money and then been told it was their own fault when the treatment didn’t work — they didn’t believe enough or work at it enough. It’s a detestable practice which is repeatedly employed by the for-profit organisations selling these ‘treatments’. They rely on the inevitability that some people who sign up with them won't have ME at all (they're usually signing up online and don't need an authoritative diagnosis) and on some being misdiagnosed to build a small cohort of true believers who will claim they were 'cured' of ME by this treatment. It's a clever marketing ploy, one that can't really fail. And it's unethical as hell. In fact it's an age-old con.

- because these programmes generate a lot of easy money for the purveyors of them, they advertise extremely widely, especially online. Their repeated claims of miraculous success, of having the answers which have so far eluded world class medical researchers, are one of the main reasons why people with ME find themselves stigmatised by the wider public, caricatured in the media and largely abandoned by healthcare systems across the world. The lack of serious scientific enquiry into this disease is nothing short of a scandal, but the aggressive advertising of systems like Gupta and Optimum makes it very hard to get medical scientists to take this disease seriously. They contribute heavily to the ongoing existence of a conception of this diseases as something flakey and trivial. The promotion of these unevidenced therapies has consequences for all of us.

I’m unclear about why you need to publicise your group on here. These ‘treatments’ have abundant websites and would, I’m quite certain, be delighted to feature your support group and publicise it for you.

This an ME forum so I posted it here. Why wouldn't I post it here? I also posted it to a few other ME forums.

I don't see the illness as flaky or trivial and neither does anyone who has suffered from it. As far as I'm aware all the founders of the aforementioned programmes had and recovered from CFS and I've not heard any of them say anything which in any way trivialises the illness.

 

[Undisclosed]

This an ME forum so I posted it here. Why wouldn't I post it here? I also posted it to a few other ME forums.

I don't see the illness as flaky or trivial and neither does anyone who has suffered from it. As far as I'm aware all the founders of the aforementioned programmes had and recovered from CFS and I've not heard any of them say anything which in any way trivialises the illness.

You wouldn't be able to sell a program if you engaged in trivialization of the population you were directing your program at. You would say all sorts of positive things to suck them in. Many claim they had CFS -- did they?

 

[CFSRecoveryGroupLondon]

maybe you don't have a critical mind and least to point out no sense of humor.

Apparently

You wouldn't be able to sell a program if you engaged in trivialization of the population you were directing your program at. You would say all sorts of positive things to suck them in. Many claim they had CFS -- did they?

Fair enough. I have 2 good friends & 1 guy I personally (i.e not online and not through any CFS group) know, who got better from these programmes. These people haven't sold anything to me and have never tried either. One of these people is my best friend and I watched her be housebound - she's started her PhD recently. That to me is powerful and inspirational. I asked her and she told me how she did it and I have followed her example.

 

[sarah darwins]

I don't see the illness as flaky or trivial and neither does anyone who has suffered from it. As far as I'm aware all the founders of the aforementioned programmes had and recovered from CFS and I've not heard any of them say anything which in any way trivialises the illness.

You completely missed the point of what I said. I did NOT say that's how these programmes represent the illness — it's in their interests to go the other way. I said the heavy promotion of what are 100% evidence-free 'therapies' that bear all the hallmarks of money-making snake-oil schemes creates the impression in the minds of the public, of doctors, of scientists, that this is a flakey and trivial complaint.

Of course the originators of these programmes have all "recovered from CFS". That's part of the package they sell. If you know anything about 'cfs' and the lousy diagnostic criteria usually applied to it, you'd know how meaningless such a claim is.

 

[TiredSam]

Well I happen to know a few billionaires and they just eschew the merits of hard work and belief.

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.

 

[daisybell]

@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.

 

[Mary]

When we are talking during our peer support group it's much easier if we are on the same page so that most of the group we don't spend arguing about advocacy, medication etc. We are on the same page and looking to the same programme for understanding and guidance.
There are plenty of CFS support groups that don't have a specific Recovery focus and I have found most people in the group don't believe that they will get better which adds a really stark negativity to the group. The founder members of our group met in one of these groups in fact because there is no Recovery focused group out there.
Everybody in our group does believe that they can get better - which for me, makes our group a really pleasant place to be and a great support mechanism to have.

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.