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Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London
In a talk to patients in London on 3rd September, Dr. W. Ian Lipkin described the extraordinary lengths he and his team are prepared to go to in order to track down the source of an illness, with examples ranging from autism to the strange case of Kawasaki disease.
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Faith Healing Discussion

Discussion in 'Spirituality and ME/CFS' started by Carrigon, Feb 25, 2010.

  1. Lily

    Lily *Believe*

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    Thank you Island Finn, CJB, lisag and Kim. I knew if I waited long enough my sentiments would be expressed much better than I could at the moment. As a part of this forum with some strong feelings about this, it was difficult/impossible for me to employ my often useful and effective "ignore and detach" strategy.

    Thanks again, I feel like I can rest easy and let this go now.

    Lily

    ETA: Sorry that didn't all get copied the way I wanted, but I don't have the energy to fix it.
     
  2. Min

    Min Senior Member

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    Many thanks to Kim.

    The perfectly reasonable question of how someone who does not meet the basic diagnostic criteria for M.E./CFS , i.e. that their symptoms should have been present for a minimum of six months before diagnosis by a physician, can claim a miracle recovery or partial recovery from it has not been answered.


    My husband recovered from post viral fatigue after 3 months off work last year. Although deeply religious, he has never claimed it was a miracle cure personally provided by the deity he believes in. Rest is the known cure for PVF.
     
  3. Esther12

    Esther12 Senior Member

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    I understand this point - it seems to be relatively common for people to go through short period of intense fatigue, and then they recover... but that recovery is still a great thing, and CFS is such a broadly defined condition anyway I don't think it makes much sense to be too precious about it. We don't know what causes CFS/MEe, and the 6 months thing has always seemed pretty arbitary to me. I didn't notice any change in my condition at 6 months as I entered into 'real CFS' - it was just more of the same. Did anyone else feel the six months point was genuinely significant for the nature of their condition?

    I don't think anyone's recovery has been a true, super-natural, intervening God type miracle - but I think lots of people are going to have recovered without really knowing why, and feel incredibly grateful for that.

    I understand the insecurity many people feel about having CFS, and they way they are treated and viewed by others, but I think that's making some a bit too touchy. If a CFS patients did really well from some ellaborate combination of minerals and supplements then I don't think people would react with such concern - regardless of the evidence base that supported such an intervention. I'm just pleased some seem to recover, regardless of why or how.
     
  4. Min

    Min Senior Member

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    The six month time period is to eliminate those with post viral fatigue, who should have recovered by then.
     
  5. Esther12

    Esther12 Senior Member

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    I'm not sure there is really such a clear distinction between post-viral fatigue and CFS. My uncle had the same symptoms as me forty years ago, and at the time they just called it post-viral fatigue. I understand what you're saying, and it's a fair point, I just think that things are always a bit hazey when it comes to CFS.
     
  6. jackie

    jackie Senior Member

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    I've been very disheartened reading the threads regarding "healings", prayers, etc.

    Not because MY particular religion was being attacked (I have no religion) or because my desire for a belief in the "miraculous" was being threatened (I am always hopeful...as this comforts me in the dark times, of which I've had many) - but because of the continuing and growing dissention in what should be (and has been) a strong and supportive community.

    When I was on the verge of leaving (a place I've come to depend on and really love!), I was drawn, one last time, to the thread for "Prayers"...started quite some time ago.

    I noticed two beautiful quotations - one by an expatriated Buddhist Monk and Teacher, Thich Nhat Hanh and one by St. Teresa of Avila.

    St. Teresa's Quotation begins... "Prayer is an ACT OF LOVE...".

    While the beloved Monk's starts with the line "DO NOT utter words that can create discord and cause the COMMUNITY to Break...".

    I can't imagine any group of people or any "community" more in NEED of the feelings of Peace, Harmony and even "Healing" of the Mind, Body and Soul, expressed by both these "philosophers"....than OUR Community!

    If I had not gone to that thread - one that I'd nearly forgotten about!...I would have left here and not returned. But the obvious love of HUMANITY and the desire that ALL suffering should be eased...that I saw when I read the offers of Prayer and Meditation (offers made by those who truly understand suffering!)...may have changed my mind.

    If anyone else has felt as bereft as I have in recent days, I suggest reading the quotes in their entirety.

    They are beautiful..........imo

    j
     
  7. shrewsbury

    shrewsbury member

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    thank you jackie.

    I'm so glad you stayed. You are a valued part of my experience here.

    And my hope is that no one else feels the need to leave, but of course would respect anyone who does feel that way. The community here is so wonderful. I appreciate every voice. My hope is that every voice will appear while remembering to "not utter words that can create discord and cause the COMMUNITY to break"
     
  8. julius

    julius Watchoo lookin' at?

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    I'm a little lost as to why people would feel the need to leave the forum entirely because of a thread or two they are uncomfortable with. Several people have said they felt this way.

    If all else fails, just don't read this thread. If, like me you just can't help following a good scrap, then just enjoy it for it's entertainment value :innocent1:
     
  9. cfs since 1998

    cfs since 1998 *****

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    I agree. Plus the thread is in the community lounge, a place where anything can be talked about. It's not like it was posted in the the treatment section.
     
  10. Knackered

    Knackered Guest

    The original thread was posted in to the treatment section.
     
  11. noel

    noel *****

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    Cameron cannot be asked about the above because as you say the username was deleted. Flex cannot reply because he has been banned for a week for "using two loggin names", which was absolutely not the case.


    AGAIN FLEX AND CAMERON ARE NOT THE SAME PERSON BUT THEY DO KNOW EACH OTHER.

    FINALLY THESE TWO MEMBERS WERE NOT ASKED ABOUT THEIR STATUS THE ACTION WAS JUST TAKEN WITHOUT THEIR KNOWLEDGE.
     
  12. cfs since 1998

    cfs since 1998 *****

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    Then I take that back.
     
  13. CBS

    CBS Senior Member

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    Esther, as Min stated, "he six month time period is to eliminate those with post viral fatigue, who should have recovered by then."

    For a review, take a look at Dr. Vernon's the presentation of Dr. Gordon Broderick's work on adolescents who did and did not recover from EBV (slides 9 - 12; discussion begins at about 25:05 into the video presentation: http://www.cfids.org/webinar/series2010.asp).

    My earlier comments about my own 'remission' were intended to be cautionary. I was 90% better but there were clearly signs that I was not entirely healthy (but I really wanted to be, so much so that I ignored earlier advice by a doctor to be careful). I wasn't and I have paid dearly for it.

    Kim, thanks for so eloquently and passionately expressing your concerns about reliance and excessive faith in unproven 'treatments.' I am all for anything that can lessen the overall metabolic load on an ailing body. I include massage, meditation, and prayer (for some, not at all different or distinct from prayer), scratching the dog, snuggling with my wife, regular naps, and good food, etc. as all being in the category 'adjunct support.' They are all good things that everyone (sick or well) would do well to at least consider. I think the hostility and ignorance of some in the traditional medical community has left many with CFS feeling as though there are few alternatives to elevating their adjunct practices to the level of treatment.

    I have a good friend who was diagnosed with stage 2 prostate cancer. He refused traditional treatment because of a similar distrust and the last 12 months of his life were spent chasing all over the US and Mexico looking for healers and "natural" cures. There are no guarantees that traditional treatment could have saved his life (aggressive prostate cancer is notoriously difficult to cure) but the feeling that they weren't 'believing in health with a pure enough heart' was such a heavy guilt filled burden. Now his 45 year old widow is both furious and crushed. Three months before his death the cancer had metastasized to his spine and several vertebrae collapsed while they were in Mexico. Just getting him home to die was harrowing. Regardless of whether or not traditional treatment could have saved his life, he did not enjoy a good death. Nor was his wife left with a sense of peace. Some days I think that when my times comes, that's all that will really matters.

    No one is ever really cured, all bodies deteriorate and eventually quit functioning. We are all (the 'sick' and the well) just putting off the inevitable and hoping to make the most of the time we have in the interim.
     
  14. flybro

    flybro Senior Member

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    pluto
    This is heavy handed to say the least.

    Was there any discussion amongst the moderators before this action was taken?

    Flex has put a lot of work into the community and a lot of fun into the chatroom, I hope the ban will be reversed and an apolagy issued asap.

    Fingers crossed that Flex dosent choose to walk as ColdTOT did.

    1 Remember Aftermaths concerns about moderation.

    2 What would Koan say?

    Chucking love and magic fairy dust around in bucket loads
     
  15. Jody

    Jody Senior Member

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    I am not in favour of one member of Admin. criticizing and critiquing other members of the team with forum members. But I guess since this has happened here, it is necessary to address it on the public threads.

    Nobody on the team has suggested that Kim is in danger of losing her position on the team. I'd like to correct that misapprehension here and now.

    The whole Admin team is not all of the same opinion. In actuality, we each of us have a differing view. The one thing we are all agreed on is that Rachel should be allowed to voice her views, and so should all of our members, so long as it is done in a respectful way. We're none of us in favour of anyone being criticized on this issue or any other.

    This whole matter has consumed many hours for every member of the mod/admin team. We are trying to find the best way of dealing with things, in the hopes of being able to satisfy everyone. With an issue like this where there is so much diversity of opinion amongst our members this is no small task.

    It's important that the team talk to each other first, and not risk giving incorrect information about what the team individually and as a whole are doing.

    I would like for the team members to be given the benefit of the doubt concerning our motives and actions. We are doing our best.
     
    Gloria H likes this.
  16. Martlet

    Martlet Senior Member

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    They also seem to share an IP address, and posted two very similar messages directed to the same person within a minute of each other. Pretty had to do, when two people are writing.
     
  17. cfs since 1998

    cfs since 1998 *****

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    I am really disgusted with the gestapo moderation tactics going on. The "guilty until proven innocent" philosophy is bad enough but you are publicly humiliating members of the forum by saying things like this.
     
  18. _Kim_

    _Kim_ Guest

    I am no longer on the team.
     
  19. gracenote

    gracenote All shall be well . . .

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    Kim, I am so sorry. This is heartbreaking.
     
  20. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Kim,

    Please, oh please come back--if that is an option for you. Your incredible input on the team just can't be replaced!

    Sushi
     

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