Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
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Dr Raymond Perrin(perrin technique) is hoping to have published reports this year

Discussion in 'Alternative Therapies' started by keenly, Apr 4, 2017.

  1. arewenearlythereyet

    arewenearlythereyet Senior Member

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    I don't get this stance at all. It makes me a little sad. The forums are for debate not posting one way opinion pieces

    You post
    People discuss

    That's it. It's not a popularity contest but a forum for discussion?

    It's not being negative if people don't agree with you. If there is a difference of opinion, this should make you think about it, not get upset because you haven't converted people to your way of thinking. People are allowed to be skeptical, state their own opinion and challenge points raised asking for evidence etc that is how it works?

    What I do not find acceptable is name calling and losing ones temper and flinging around insults, or using the multiquote to deliberately misrepresent what has been said. I have noticed this going on in other threads and have been the recipient of it on occasion as debates heat up. Fortunately the moderators pick this up when this steps into the realms of bad manners as I think happened here.

    If we all agreed with each other it would soon be a pretty dead place around here. Try not to take things so personally is my advice.
     
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  2. Invisible Woman

    Invisible Woman Senior Member

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    I absolutely agree @arewenearlythereyet.

    Over the years I have found things (totally unproven scientifically) that helped me but made others worse and vice versa. I want to hear both sides of the discussion before I spend my meagre energy resources and limited cash. That is one of the many reasons I like PR - I get both sides.

    From my time on PR, I have also seen that if a person starts to feel some improvement, everyone seems genuinely pleased for that person. Even if they may be a little sceptical about the reason for it.

    I also think that if we are to criticize the science that has lead to so many being subjected to PACE-type treatment then we have to be prepared to subject other treatments to the same level of scrutiny and discussion.
     
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  3. PhoenixDown

    PhoenixDown Senior Member

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    Rubber Duck.jpg
    Quack Quack
     
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  4. tudiemoore

    tudiemoore Senior Member

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    Vodder Technique, different but same? I had an intense series of Manual Lymphatic Drainage, as they were called, sessions some years ago, late '90s or early 2000s.
    I was much more severe then and obviously it didn't cure me since here I am now!

    My sessions were done at a clinic that provided medical massage. I had heard of this clinic and went there initially for their other offerings.

    I had a list of everything I was doing to help myself and medical massage was on the list.
    Covered two columns of a yellow legal pad-- those were the days!

    I had enough time and money to take better care of myself then.

    When this treatment became available I was eager to try it. I admit I had very understanding of the body's lymph system.

    After all this rambling--my point--after each session I had a reaction--heavy fatigue, a "cold" with lots of discharge. I often had facial breakouts.
    To me this would seem to be a result of the treatment.

    I don't know if Vodder Technique still is in use or where one could find this. I know the clinic offering this no longer exists.

    I kept working on that list and within about two years I had a remission of a year plus some months.
    At that time I hadn't had the benefit of all the knowledge and information available (yes, I mean you, PR!)

    I didn't put all this together. I saw this as a natural result of being cured of a hideous illness I had acquired and had suffered. Little did I know!

    After the relapse I was much worse, housebound, and then able to drag myself around to complete a few of my plans for my future.

    My health has waxed and waned since then. I see myself as never really healthily. My. life is run by limits of fatigue and brain fog. Accomplishing one thing a day is about it for me.

    I find it interesting that I even had the energy then to make lists, seek treatments. I don't have that now.

    Heard this somewhere, "My story isn't over yet".
    It sparked a tiny reaction to take a deep breath and look around to see what I can try next.
    From my front porch, of course...

    :cool:
    I love emoticons...
    tudiemoore
     
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  5. OfcourseYouCanRevover

    OfcourseYouCanRevover

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    Could you share the list of things you did that helped you go into remission.

    Just because you relapsed doesnt mean you cant get your full energy back (dont respond with limiting beliefs lol)
     
  6. IThinkImTurningJapanese

    IThinkImTurningJapanese Moderator

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    Most people here are refusing to "believe you have to live with ME". That's why they are here and trying so hard to find solutions.

    The beautiful thing about us all working together to solve this horrible illness, is that the whole is greater than the sum of it's parts.

    Of course we haven't tried everything, who can. But working together, we have a much better chance of finding the solutions to this awful problem.

    I invite you to look at these forums, and do everything you can possibly think of to find a solution that others may have missed.

    We need the contributions of everyone.

    Together, we can beat this. :thumbsup:
     
  7. Snowdrop

    Snowdrop Rebel without a biscuit

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    Lol. That is inaccurate. The forum was populated by a great many people who have been sick a very long time. I've been sick for decades and the list of alternative treatments I tried before coming here was long indeed. Between all of us we have tried ever so many things. This is why we are skeptical.

    There is a long list of diseases that at one time had no medical treatment. No doubt many people in desperation tried many things too. In the end there were no wide spread cures until science stepped in. It sucks that we are all so ill and conflicted with each other. Optimism vs skepticism.

    There are variables to consider with recovery-- was it Post Viral Fatigue, is the ME remitting and relapsing over decades like MS. These are legitimate questions. It is very daunting to consider that you might try everything and not get well when you've dedicated so much effort. Some people chose optimism because the alternative is too difficult to bear. That's understandable. But belief, and that's what it is a belief that your own efforts must bear results is not factual.

    I'm not stating people shouldn't try things but it should be tempered with a reality check rather than the rah rah of a cheerleader.
     
    Last edited: Oct 26, 2017
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  8. OfcourseYouCanRevover

    OfcourseYouCanRevover

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    Hmm my fatigue didnt start with the onset of an illness! But 97% of diseases arent real... its just the body adapting to its environment. Get rid of the physical chemical and emotional stress and you heal. That will be the conventional approach to healing in 20-100 years.. of course its possible, anyone who believes peoples cant get their FULL energy back have no evidence to back it up. NOBODY has been monitored every minute of their day, had various testing done and had all rest, meditation, food etc monitored for 6-24 months so nobody really knows what is possible. Very very simple. There isnt even a valid scientific argument in response to this comment!
     
    Last edited by a moderator: Oct 29, 2017
  9. AliMac64

    AliMac64

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    Can I ask 2 questions, I am new to the forum and reading things to try and support myself. Why dry saunas or dry heat, and do you do this yourself or does someone massage you. And also what’s a naturopath? Thanks
     
  10. Learner1

    Learner1 Professional Patient

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    Sure!

    Dry saunas are a place you go, generally a little wood lined room with a heating source. There are also far infrared saunas that aren't as hot, but are good

    A naturopathic doctor has gone to naturopathic medical school, an alternative curriculum to MDs, just as osteopathic doctors and chiropractors go to their respective schools.

    The naturopathic doctors I've seen practice functional medicine. They look at the body as a system of systems working together. They order lab tests, imaging, and prescribe nutrients, botanicals, hormones, pharmaceutical drugs, as well as behavioral and lifestyle interventions to promote wellness.

    Due to politics, their scope of practice is limited in many areas, but in Washington state where I live, they can do almost anything MDs can except for surgery and hospital care.

    They have helped my family with integrative cancer treatment, curing a serious mental illness, Lyme disease, food allergies, digestive issues, prolozone/prolotherapy and ME/CFS trearment and have had a more comprehensive approach than any MD we've seen.
     
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  11. maryb

    maryb iherb code TAK122

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    As a person who has had LD from Raymond Perrin I can say that it does help for sure, is it a cure - no - but as someone said it's up to people to make their own decisions. I have to declare a personal interest here, I have a high regard for RP - he is a genuinely kind and caring person, and I think he's very special, not the grab your money and run type of person that some posters are likening him to. He goes out of his way to help patients in many ways. Writing letters / referrals etc - no charge.
    I found some of the comments on this thread somewhat hostile and unhelpful. People just want information and a précis of others experience or informed opinions.
     
  12. AliMac64

    AliMac64

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    Thank you very much for this response, it’s hard to take in all of the information
     
  13. tudiemoore

    tudiemoore Senior Member

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    Sorry I haven't chimed in since my post in May--just simply didn't come back to this particular post--lots and lots of interesting things on PR :love:

    Re: my remission after initial treatments--I am sorry but I honestly don't have notes and don't remember. But I did have the list and worked on it!

    A few of my observations and experiences on what are seen and referred to as alternative treatments-

    "Alternative" doesn't mean "instead of", rather "in addition to"

    PTs do publish--go up the line to the doctoral level and long-time practioners--no, can't site results

    Many of us, and I am one, say we have so little faith in the traditional
    medical community and yet so many are reluctant to consider
    and/ so try new ideas

    *This is long enough for now. You know I am very long-winded!
    And here I do see new ideas met with far more than just discussion.

    Twenty five years ago when I first became interested in adding other "things" to being healthier (before ME/CFS) I saw very little interest in these things.

    Today I have been literally astounded by the general pubic even considering taking a daily vitamin pill and walking around the block!

    At age 75 I have seen changes over time ;)
    My observations and experiences, y'all, nothing more!
    tudie moore

    *These paragraphs are all messed up in sequence--please note and give me some slack, ok?
     

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