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

[CFSRecoveryGroupLondon]

Here is the thing, people like to know something about an organization or group before giving out their email address. Do you have a Facebook page or website? I think it is only fair that if you give a "teaser" about a London support group that you give us a link to more information about it.

Given the negative reaction that posting that the group exists created, I really don't want to. This clearly was the wrong website to post on.

 

[CFSRecoveryGroupLondon]

Can you quantify the improvements you have made on mind/body programmes? The level of ME/CFS is often measured on the scale of mild, moderate and severe. May I ask, where were you on this scale before you did these programmes, and where did you end up after?

Also, are there any objective measures of improvement that you observed, as opposed to subjective measures of improvement?

An objective measure of improvement might be for example: previously you were not able to walk the 20 minute return journey to the shops without serious PEM repercussion; but after some treatment, you then found you could do this walk without too much difficulty.

Or there might be a difficult mental task that your were not able to do because of brain fog, but after some treatment, you found you could now do this task. This is another objective measure.


Whereas subjective measures are just how you subjectively feel about yourself terms of you current brain fog level, or energy level. The trouble with mind/body treatments is that all the positive thinking these often involve can make you subjectively think that your symptoms have improved, whereas in fact they may not have improved in any objective sense.

Positive thinking might however have some medical effects, in that for example it may raise dopamine levels in the brain, which then could have some disease modifying action. I wrote about such concepts in this post. So if postive thinking does it for you, then it may be a useful treatment option.

But I would stress that because positive thinking can alter the way you subjective feel about yourself and your symptoms, I would only use objective measures of improvement to gauge whether you have made any progress from mind/body therapies.

I used to walk around 4000 steps a day and I now walk close to 8500 ED.
I couldn't exercise now go and lift weights for an hour a week, with no crash the next day.
I get significantly less anxiety and panic than I used to. It's ramped down from around 8/10 intensity to around 4/5 which is significant for me.
My mood has stabilised.
I began being able to do household chores like cooking a few times a week and cleaning dishes.
My energy levels have improved from around 45/50% to around 65/70% on the functional scale.
This has been in around 4 months or so I guess. Times where I have been more focused on the process I improve quicker. Times when I don't I don't.

 

[Valentijn]

I used to walk around 4000 steps a day and I now walk close to 8500 ED.

I'm glad you're feeling better, but your personal experience is trumped by all of the trials that show similar positive-thinking and illness-denial therapies never result in objective improvement.

I believe the many problems with relying on anecdotal evidence have been covered in an earlier post in this thread.

 

[CFSRecoveryGroupLondon]

I guess everyone is in favour of support groups, but why limit membership to people doing certain types of treatment? Why not allow people to join who are not doing those treatments or are trying medication?

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.

 

[CFSRecoveryGroupLondon]

No, you don't have the right to present one-sided claims and prohibit discussion or disagreement. This is a forum, not your soap box. If you want a soap box, I suggest using a blog post or Facebook page or similar.


I have many family members in AA, and they would be pretty disgusted with someone using it as an excuse to promote quackery.

Mind-body programs don't work for biomedical diseases. There is no evidence that they work, and a lot of evidence that they don't work. What's more, the pseudo-science used to sell them is completely absurd, with no basis in actual biology or chemistry, and completely contradictory of the actual scientific research into ME.

AA is classed as pseudoscience by most medical practitioners but it still works. If your family members want to talk to me about these programmes they are welcome to.

Until there is a medical cure for CFS I'm still going to be trying mind/body programmes. AA isn't a 'cure' for addiction but I'm sure your family members will attest that it hasn't stopped them going and committing to it

 

[CFSRecoveryGroupLondon]

If you are running such a group, perhaps the group could persuade the organisations selling these treatments to employ an impartial scientist to carry out a proper scientific study of their treatment methods over, say, a 3 year period so any initial excitement and positivity that can lead patients to think they are improving has a chance to wear off, and the real effects to be measured.

I suggest such a study, to be credible to the patient community, would need to include:

diagnosis according to internationally recognised criteria by an expert ME doctor,

blood draws say ever 6 months and stored in a reputable biobank, to be tested at the end, by which
time, hopefully, there might be a diagnostic test available,

wearing of activity monitors throughout the 3 years, with weekly activity recorded,

detailed symptom and treatment diaries kept, including details of any diet, supplement, herb or drug used.

questionnaires such as de Paul and SF36 filled in at the same time as the blood draws.

Ideally you might also do 2 day CPET tests at the beginning and end of the 3 years.

And of course such a study would need ethical approval.

I wish you well in getting such data so that your faith in the treatments can be properly verified.

Until that day, you must surely not be surprised at the level of scepticism in this community, especially after the PACE trial fiasco, and, as far as I know, the complete lack of any objective evidence that any mind based therapy works.

I wish you and your group well. I do hope you will bear in mind that, although you may all be adults deciding of your own free will to participate, some of your members are very sick and vulnerable, and may find that if they don't improve as they had been led to believe, they become very distressed and feel let down and unsupported in an environment with so much focus on 'recovery'.

They may do a trial etc at some point. It's not my interest because I care more about focusing on my personal recovery. Studies take a long time to complete and I don't want to wait for the medical community to catch up.

Thank you.
I can honestly say that being ill for more years rather than failing at getting better with a recovery programme is more demoralising. I've been ill for 14 years, I don't want to be ill for another 14 because I was too scared to try to get better.

 

[CFSRecoveryGroupLondon]

If some people randomly get better then there is a chance that they will have been doing something at the time that they may attribute their recovery to. Sometimes they may even start to feel a bit better then try something and attribute recovery to the thing they tried. But that would simply still be due to a random event not that attributed thing.

That is why people here want to look at and understand the science that is being developed. To test an intervention it needs to be done using a careful experiment and intervention groups need to be tested against suitable control groups with adequate measurement of improvements. Otherwise it could just be random events with attributions.

I would go further to say that not only do we need to know at an intervention works and is not a random event but we need to have an idea of mechanism and how it works.

If you ask billionaires how to become one they will probably tell you how great they are and how hard they work. But forget to mention the huge inheritance they had.

I'd rather give chance a helping hand and do what I can do from my end to help it move forward. I'm not prepared to wait to my health in the hands of the medical community who have done little to help the vast vast majority of ill people so far.

Well I happen to know a few billionaires and they just eschew the merits of hard work and belief. None of them inherited their wealth. They are generally quite normal but just incredibly focused and driven people. I used it as an example of who to look to guidance for when one wanted an example to follow.

 

[CFSRecoveryGroupLondon]

w

I'm glad you're feeling better, but your personal experience is trumped by all of the trials that show similar positive-thinking and illness-denial therapies never result in objective improvement.

I believe the many problems with relying on anecdotal evidence have been covered in an earlier post in this thread.

I've worked really hard at my health improvements and I feel like you are belittling them.
I am not doing an illness-denial therapy and calling it such as a slur is not fair.

 

[Valentijn]

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.

Accepting reality is not "stark negativity" and labeling people as such is abusive. Do you feel the same way about terminal cancer patients? Research shows long-term remission rates of about 5% for ME patients, by the way. The reality is that we are not going to recover until there is a medical breakthrough.

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.

Sure sounds jolly - until people fail to recover, get sicker in the process of trying, and blame themselves for the failure. That sort of guilt has lead to the reported case of a boy trying to kill himself, and very likely has severely impacted others as well.

AA isn't a 'cure' for addiction but I'm sure your family members will attest that it hasn't stopped them going and committing to it

AA is for addiction, not a biomedical disease. Or do you propose cancer patients and MS patients should also commit to believing that they can recover if they think they right thoughts? Why do you believe that ME can be cured based on similar principles to a program focused on abstinence?

 

[hellytheelephant]

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.

 

[Valentijn]

I've worked really hard at my health improvements and I feel like you are belittling them.

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.

I am not doing an illness-denial therapy and calling it such as a slur is not fair.

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.

 

[CFSRecoveryGroupLondon]

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

I've felt really unwelcome here.

 

[CFSRecoveryGroupLondon]

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

 

[hellytheelephant]

Our lives are dark places with this illness- this forum is not...but it does express the reality of life with ME. If you want to post about anything else, or contribute to other posts then you will be welcome.

 

[adreno]

This forum is a really dark place

 

[Artstu]

Always dark for me in Xenforo 1.2 Dark Brown, with some amazing people here.

 

[A.B.]

Two shipwrecked sailors are holding onto flotsam. The first one says: "I know how I'm going to quench my thirst. A positive attitude will protect me from the negative effects of drinking salt water. It's going to be fine. I can do this." The second sailor says: "Positive thinking won't help you here, it's a question of biology. It will just make it worse." The first sailor replies: "Oh I'm not denying the biological aspects, but you know, there are mental aspects as well. You're being really negative about this."

 

[TiredSam]

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

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.

This has nothing to do with anyone but the person choosing, of their own free will, to join this local support group.

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

I asked nicely before and I asked purposefully if people could hold fire on commenting unless they wanted to come along.

I am answering nicely with "no" to that.

You say:

I'm not making claims about people recovering.

But then:

I've made my only progress on mind/body programmes so I don't care if others don't believe in them, they are working for me and they have worked for others too.

Which reads like a claim about people recovering to me.

So I respectfully ask again to you guys who aren't interested in this group to resist typing that response about what's wrong with mind/body strategies and leave some space for other people to think something different.

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?

This clearly was the wrong website to post on.

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

Times where I have been more focused on the process I improve quicker. Times when I don't I don't.

Is that another claim about recovery?

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.

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.

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.

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.

I don't want to be ill for another 14 because I was too scared to try to get better.

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

Well I happen to know a few billionaires

FFS.

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

I've felt really unwelcome here.

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.

 

[trishrhymes]

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.

 

[ScottTriGuy]

I've been ill for 14 years, I don't want to be ill for another 14 because I was too scared to try to get better.

It would seem your (legitimate) fear of being ill for another 14 years has propelled you toward trying a mind-body approach.

This is not surprising given how few accessible biological treatments are available for ME.

Respectfully, you have recognized your emotion (fear), but not the irrational cognition (that your mind will fix ME).

As you're discovering, the folks on PR also have fear of ongoing sickness - and fear of false treatments.

This is not surprising given the harm psychobabblers have done to all ME patients.