Phoenix Rising tells QMUL: release the PACE trial data
Mark Berry, Acting CEO of Phoenix Rising, presents the Board of Directors’ open letter to Queen Mary University of London (QMUL) urging them to release the PACE trial data, and hopes that other non-UK organisations will join British charities in the same request...
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CFS Recovery Group London - ANS Rewire/Gupta Programme/Optimum Health Clinic

Discussion in 'Alternative Therapies' started by CFSRecoveryGroupLondon, Jan 26, 2017.

  1. CFSRecoveryGroupLondon

    CFSRecoveryGroupLondon

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    UPDATE on 5/3/17 I've left this site now but the contact information below is the best way to contact me about the group.
    I also corrected the name of the Optimum Health Clinic, in the text below, in the 2nd edit to make it easier to search for. I've changed nothing else.

    Edit 1 : email me at cfsrecoverygrouplondon - at- gmail dot com for more info about what we do, where we meet etc.
    Edit 2: We also created a Facebook page www.fb.me/CFSRecoveryGroupLondon which has some general info about the group and what we do.


    Hi everyone

    I know people have strong negative opinions about mind/body programmes but if you could hold fire on commenting on this thread unless you're interested in the coming along that would be massively appreciated by me.

    I'm new to this forum and putting this out there on a few places online where I know people with CFS congregate. If someone could tell me the correct forum or move this that would be great.


    We are a London, UK based Recovery group aimed at giving peer support for people who are working mind/body recovery programmes; namely ANS Rewire, Gupta Programme or the Optimum Health Clinic.
    We are NOT formally affiliated with any of these programmes, but are only there to support one another while we recover. These programmes all include pattern breaks, meditation, mindfulness, diet protocols and hence there is a large crossover in the theory and practice of working them.
    We meet regularly and in-person so if you are able to and are interested in joining please let me know.


    Thanks very much
     
    Last edited by a moderator: Mar 7, 2017
  2. Esther12

    Esther12 Senior Member

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    It's more that I have a general concern about treatments being promoted to patients as effective when they don't have any good evidence of efficacy. It doesn't matter to me if these treatments are pharmacological, 'mind-body' or openly magical.

    There does seem to be a current trend to have very low standards for making money from 'mind-body' interventions, and this being seen as more acceptable than for pharmacological or magical treatments. That could mean that, in relation to current fashions, people here tend to be more critical of 'mind-body' programmes than other things?

    I really think that it's important that people try to think critically about what they're doing, especially if they might be promoting particular approaches to others, and recognise the importance of trying to ensure ones views stand up open debate.
     
  3. trishrhymes

    trishrhymes Senior Member

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    I wish you well, and in general think support groups are a good thing. However, several concerns strike me in this case.

    First, you talk confidently of mutual support 'while we recover'. I worry that those not lucky enough to show signs of recovering will, in that environment be left feeling failures, and blaming themselves for not trying hard enough. This can be devastating to already very ill people.

    Second, these therapies are, so far as I'm aware, unproven, and costly. Your post could be construed as advertising, and making unfounded claims.
     
  4. Sushi

    Sushi Senior Member Albuquerque

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    Since you are a face-to-face support group, why not give some contact information for those in London who wish to attend.
     
  5. CFSRecoveryGroupLondon

    CFSRecoveryGroupLondon

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    People are welcome to Private message me about joining. Send me you email and I'll send you some details.
     
  6. CFSRecoveryGroupLondon

    CFSRecoveryGroupLondon

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    Clearly, my post wasn't advertising, and couldn't even tenuously be construed as advertising.
    I don't work for, never have, never will work for the aforementioned programmes. I'm a participant in one of those programmes.
    I'm not making claims about people recovering. I'm starting a recovery group for people who are working the aforementioned programmes.
    Maybe it's best to stop worrying about people making their own decisions, about what is right, for their own health and whether they might in the future feel like failures. This has nothing to do with anyone but the person choosing, of their own free will, to join this local support group.


    .
     
  7. CFSRecoveryGroupLondon

    CFSRecoveryGroupLondon

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    I asked nicely before and I asked purposefully if people could hold fire on commenting unless they wanted to come along. I expected this response - because I have received it previously from 9 different people across 3 different occasions.

    I'll sum up my issue with the CFS world trying to negate the positive effect that mind body strategies can have.
    I am in AA/NA and sober 14 years and I have never met a Dr who told me that AA was the place to go to treat addiction. Still, millions of people who are a long time sober, go and continue to go - heck I still do. I care about what works and not what the medical profession can offer me anymore. I understand other people are waiting for recognition or a cure - but I am not.
    When I see the millions of people still ill from CFS and the handful of people well my response is to ask what the people who are well, did to get there and learn from them. It isn't to pick apart what they did but to learn from them about what they did. I wouldn't ask a pauper how to be a billionaire if I wanted to be one.

    I have paid my dues (ill 14 years) and suffered like the rest of you, and have also not believed I can get better and waited for the medical profession to catch up. They are unlikely to in my timeframe. I'm not waiting any longer. 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.

    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.
     
  8. Esther12

    Esther12 Senior Member

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    Thank you for 'respectfully' asking that I shut-up and not explain my concerns with what you have written.
     
  9. Kina

    Kina

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    Phoenix Rising is a forum that allows all opinions and if members have concerns about particular treatments, then they are free to discuss their concerns to help others make decisions and to provide information. Of course, we don't allow personal attacks in these discussions. You can politely ask members to shut up, and we can politely say 'no thank you' and add to the thread.

    My opinion is that these mind\body programs are expensive, based on pseudoscience, promote BPS crap, do not take seriously that ME is a serious medical illness that can't be ameliorated/cured by using your mind/thought processes. Perhaps, they are of some benefit in helping people to cope but when it comes down to it -- they all are fancy forms of CBT with a dash of pseudoscience thrown in to make them look feasible. I am surprised you didn't include Lightening Process in your list of recovery programs. Sorry but I just can't sit back and not give an opinion on some things.

    Cheers. :)
     
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  10. Sushi

    Sushi Senior Member Albuquerque

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    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.
     
  11. Hip

    Hip Senior Member

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    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.
     
  12. Snowdrop

    Snowdrop Rebel without a biscuit

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    Given past history of UK ME politics transparency is very important to many of us.
    And there is some excellent progress being made in the field of ME research regarding diagnostic testing and treatment.
     
  13. Hip

    Hip Senior Member

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    The bad ME/CFS politics comes from the US, with the CDC's creation of "CFS," a disease which can be conveniently considered as an "all in the mind" condition, thereby allowing disability insurance companies to avoid payouts to ME/CFS patients.

    The bad ME/CFS research comes from the UK (as well as the Netherlands and Australia), with the Wessely school researchers in those countries providing a bogus intellectual and academic framework for duplicitously casting ME/CFS as an "all in the mind" condition.
     
  14. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    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?
     
  15. A.B.

    A.B. Senior Member

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    I find it cruel to create treatment programs that revolve around trying to cure illness via mental acrobatics, setting the expectation of recovery, encouraging blind hope and optimism bordering on delusion, indoctrination, and denial of problems. When reality catches up with the patient, they will blame themselves and they're going to feel more pessimistic and disappointed than ever.

    Motivational techniques can't cure illness. Whenever an illness is poorly understood, there will be people offering these motivational techniques as solution. Asthma, peptic ulcer, many cases of multiple sclerosis, some cancers, rheumatoid arthritis, crohn's disease and many others were once in this situation: poorly understood, but claimed by some to be treatable with some form of psychotherapy.
     
    Last edited: Jan 27, 2017
  16. Valentijn

    Valentijn Senior Member

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    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.
     
  17. A.B.

    A.B. Senior Member

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    One of the techniques mentioned in the original post, I can't remember which exactly, is being promoted as solution to "negative thoughts causing a squirt of the stress hormone adrenaline, making patients sick". Or something to that extent. I have some doubts on negative thoughts having any such effect, and ME/CFS certainly is not associated with raised adrenaline levels. This is a pseudoscientific explanation that someone with no knowledge of the topic pulled out of their arse. They're not even good at this sort of thing. The PACE authors are smarter: they just make vague statements on the causes of ME/CFS that are difficult to prove or disprove.
     
    Last edited: Jan 27, 2017
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  18. trishrhymes

    trishrhymes Senior Member

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    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'.
     
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  19. user9876

    user9876 Senior Member

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    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.
     
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  20. CFSRecoveryGroupLondon

    CFSRecoveryGroupLondon

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    None of the members of the group have experience with it so we didn't include it.
     

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