August 8th, 2016: Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis
Jody Smith joins with other ME voices in honor of Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis.
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''HEAL'' - Trailer and how it relates to our illness

Discussion in 'General ME/CFS Discussion' started by ChrisD, Dec 17, 2017.

  1. ChrisD

    ChrisD Senior Member

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    East Sussex
    This is not necessarily a recommendation but a friend just sent me this trailer for a new documentary film that approaches the issue of over prescription of Pharmaceutical drugs and perhaps a wrong psychology toward healing i.e. ''the power of belief''.

    It references many illnesses and diseases such as Lupus, Cancer, MS and Chronic Pain and features people such as Bruce Lipton (Biology of belief) and Deepak Chopra (Spiritual guru) discussing how the diagnosis of these illnesses comes with a sorry prognosis too.



    Watching this made me reflect again on the strange paradox that I often find myself in; so desperately wanting a cure and craving the developments in biomedical research to finding a medication for ME, yet being wary of the toxicity and side effects of drugs and also desiring a natural approach to overcoming this. But this is what I am doing day in, day out - Meditating, breathwork, yoga-ing, releasing emotions, cold immersion, radical diet changes, using herbs and supplements and so on. In fact I believe that as ME patients, we are some of the most experienced in natural health - is there any more that we can do?

    So considering this, despite the fact that the notion of the film is a positive one and I would love to get on board with it, I question the validity of such claims and also suspect that for several of those diseases patients would still recieve medication along side their protocol of positive healing.

    I hope that not too much of an association is made between this and ME in the mainstream or within society as this could be particularly annoying for us, however on the flipside, I guess something so positive to watch and ''inspire us to heal'' cannot do any harm in our own worlds. What do people think?
     
  2. MartinDH

    MartinDH Senior Member

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    Does this make you feel better? Or even improves your condition?
     
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  3. ChrisD

    ChrisD Senior Member

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    Yes, for sure. I've religiously done these things now for atleast a year and they are all essential to at the very least stopping the worsening of my ills, and maintaining a steady plane of health. I do feel that I am on a VERY slow uptrend in health with minor setbacks when I am over exerted. However I do regularly become frustrated by a ceiling limit on improvement (Which is hopefully moving up as well - atleast it is by step count) and this is my point really, that we can do all of these things with the natural health approach but from what I have learned so far about my body - it could take years to restore full health! And this is because I believe atleast in my case that something is holding me back, like a pathogen/virus/toxicity etc.
     
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  4. MartinDH

    MartinDH Senior Member

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    @ChrisD Okay that's interesting. For me, despite of the fact that I always feel very bad in comparison to my condition one year ago, I have noticed that the Wim Hof breathing method and the cold showers give me a big energy boost. Unfortunately only for about half an hour or so... But I don't get any benefits from supplements at all... so I think this is the right method to try!
     
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  5. friendlycat

    friendlycat

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    I only know of deepak chopra and regard his word salad utterances, whereby he attempts leverage the seemingly mysterious world of quantum mechanics to add some kind of scientific heft to his screed, with the deepest scepticism.

    I'm sure there's plenty of people who think he's great and I imagine he's nice to his mum etc. but, as far as I can see, like a lot of woo peddlers, he's selling to the desperate and uninformed, s'money for jam innit.
    Obviously, as a member of the spoonie community, I do understand the frustration with where science based medicine is at in relation to our own conditions but I tend to find this stuff muddies the waters even further.

    I've tried the wim hof breathing method and it really just made me dizzy for a bit. Supposedly it promotes vasodilation which you'd imagine would help and I do wonder if I was perhaps doing it wrong but really it's just taking on board extra oxygen as far as I can tell.
    Mr hof also makes some, I believe, unsubstantiated claims that he can control his immune system through this technique but the jury is out at the moment I think.

    I've tried a fair number of, I guess, 'natural' approaches such as a high protein diet which seemed to work for a while, and then didn't as well as a number of over the counter supplements/medicines.
    To date, the only thing that seems any use is medicinal cannabis oil.
    I couldn't say whether it's actually had an effect or whether its use has simply coincided with a period where I've been better (as in better than I was but in no way recovered).
     
  6. IThinkImTurningJapanese

    IThinkImTurningJapanese Moderator

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    I see a Traditional Chinese Medicine physician here in Japan, who is very aware of the power of hope.

    He is providing support to my body first though. ;)
     
  7. Wonko

    Wonko Senior Member

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    The other side.
    I spent years, and years, thinking I was getting better. Almost every year I thought I had improved upon the last, despite what people were telling me. It took my limits/baseline falling to below the minimum needed to achieve anything, for me to realise that I wasn't, in fact, getting better, I was unconsciously trimming the fat, targeting my diminishing resources better and getting used to life that wasn't.

    Until the amount of resources at my command was insufficient to do anything.

    Then I noticed.

    That I wasn't, as it happened, getting any better.

    Don't trust your brain, it'll lie to you, tell you you're succeeding, simply to justify it's continued existence.
     
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  8. ukxmrv

    ukxmrv Senior Member

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    I had too much of that approach (natural therapies and false hope) in the early years of this disease and no desire for some of that again.

    What the natural therapists forget is that those of us with long term incurable diseases have seen it all done before. We know if fails. I still remember the early HIV/AIDS patients who were told that they could control their immune systems and how they died.

    My personal experience was that the emotional work and body movement therapies were a waste of my precious time and energy. They didn't help me at all with ME symptoms and were draining.

    When they became available to me a course of anti-viral drugs did more than anything else "natural" combined.

    The natural health pushers need a constant stream of the worried well, the healthy but frightened and the newly sick and desperate to prey on.
     
    Last edited: Dec 19, 2017

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