Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
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Spontanious healing

Discussion in 'General ME/CFS Discussion' started by James_B, Nov 14, 2016.

  1. James_B

    James_B

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    Hi!

    Concerning ME/CFS.
    What we can learn is that some heals spontaneously. This is probably the best hope we have. You often hear about a sudden onset. As for me, one day i woke up and, "shit what is this". We just have to hope for the reverse mechanism.

    Do you know someone who spontaneously healed to tell about it?

    It sounds like a long phase-disease. Ordinary flu is for 7 days. ME is 7 years. But when one hear about healing it is just as mysterious as the onset.

    At least one can read about it on Wiki:

    "Prognosis
    A systematic review of 14 studies that described improvement and occupational outcomes of people with CFS found that "the median full recovery rate was 5% (range 0–31%) and the median proportion of patients who improved during follow-up was 39.5% (range 8–63%). Return to work at follow-up ranged from 8 to 30% in the three studies that considered this outcome." .... "In five studies, a worsening of symptoms during the period of follow-up was reported in between 5 and 20% of patients." A good outcome was associated with less fatigue severity at baseline. Other factors were occasionally, but not consistently, related to outcome, including age at onset (5 of 16 studies), and attributing illness to a psychological cause and/or having a sense of control over symptoms (4 of 16 studies).[68] Another review found that children have a better prognosis than adults, with 54–94% having recovered by follow-up compared to less than 10% of adults returning to pre-illness levels of functioning."​

    What does it mean? Hard to understand.
     
    Last edited: Nov 14, 2016
  2. Neunistiva

    Neunistiva Senior Member

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    Not to derail from your question, but I think it is very important to say this:

    Our best hope is advocating and donating for biomedical research.


    I totally understand the need for hope in spontaneous recovery, especially for newly diagnosed who are still dealing with the shock.

    But false hope can be dangerous. It makes us passively wait and take abuse from medical community which has led to decades of neglect.

    As for me, even if I did recover on my own, I would feel morally obligated not to leave 20 million people behind, now that I have experienced ME/CFS on my own body.

    That being said, it's very difficult to know what recovery rates are because those prognosis predictions are made based on Fukuda criteria which encompasses a lot more disorders than just ME/CFS, and out of patients with ME/CFS as much as 90% are undiagnosed. In short, no one can tell.
     
  3. Cheesus

    Cheesus Senior Member

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    The problem with ME research is that a lot of is it junk, so I wouldn't hold a broad summary of evidence of prognosis in much regard as we do not know the quality of the studies being cited. This is particularly true given that one of the apparent indicators of prognosis cited in that summary is whether or not the patient attributes their condition to a psychological cause, because we know such studies are of consistently poor quality.
     
  4. Hutan

    Hutan Kina solidarity

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    Some people diagnosed with ME/CFS recover, particularly in the first few years of the illness, although it is difficult to know if they are 100% recovered and how many later relapse. Studies on ME/CFS recovery are confounded by the lack of a biomarker, resulting in a heterogeneous collection of sick people, and the biases of those who do the studies. So, we don't really know much about ME/CFS recovery.
     
  5. James_B

    James_B

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    I formulated it wrong. It's not the best hope. What I mean was that it is an interesting phenomenon that for some lucky occurred if you believe the Wiki.

    Great mystery is it.
     
  6. TigerLilea

    TigerLilea Senior Member

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    I've had ME/CFS for 26 years so I'm not expecting a spontaneous recovery at this point. To be honest, I haven't heard of anyone spontaneously recovering from this. :depressed:
     
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  7. Sushi

    Sushi Senior Member Albuquerque

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    I've heard of spontaneous remissions, but everyone I know who had a remission, later had a relapse. Still the fact the remissions sometimes happen may be a clue for researchers.
     
  8. taniaaust1

    taniaaust1

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    ,
    I think we need to be realistic here about this. Okay so 5% recovery rate according to one study, so what percent of the ones who do make a full recovery have a "spontanous" recovery out of that 5%?

    I'd think not many at all, all those I know who have made recoveries, I think I only know about 5 who made full recoveries and those recoveries where either slow recoveries over time or recoveries using a treatment eg there was one who had like rotten bones in his gums but then maybe we could say he didnt have ME/CFS after all, someon recovered on methylation treatment, another two recovered from psych treatment and I dont think they had ME in first place. Lightening Process cures ME ;)

    We have heard of some having like a sudden recovery for a day or few but then the ME claims (maybe they were just in a good patch as this illness can go up and down with symptoms or maybe something in their environment was different or food different.. maybe they missed something which is flaring their symptoms.

    Placebos in studies work short term too but dont end up curing, the person soon realises it isnt really working (maybe their mind at thinking they were a bit better that day went into some kind of Placebo thinking)

    As we cant even be sure that we all have the same illness even if we are using strict definitions, how do we know at all that spontanously is possible in ME. I must admit that one day I did suddenly feel better then normal, actually this has happened a couple of times and it was like a switch had been turned me off from something bad.

    Anyway, I think of spontanous ME remission as almost a myth. but we can say IF 10% of full recoveries are spontanous ones, that would only be oh I cant do maths :( .. 10% of the 5% who recover and being that low, maybe they did have something different.
     
  9. James_B

    James_B

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    Yes the problem is that there is no bio marker (yet) and there is no one for sure know what those who recover had.
     
  10. Joh

    Joh Inactivist

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    Hi James,

    Where did you read something about 7 years? That would be good news;), I´ve had ME for 14 years now.
     
  11. taniaaust1

    taniaaust1

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    im feeling cheated as I've had mine for over 7 years too :alien:
     
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  12. James_B

    James_B

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    That was just a long time example. Anyway in a facebook group i am in sometimes people speak about periods of no light no sounds and also that they have gone past those periods and can do more things now. But it is more of a reflection over 10 to 12 yrs.
     
  13. hellytheelephant

    hellytheelephant Senior Member

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    If there's one thing I have learnt from my friends on PR, it is that realistically the way our lives will improve is by accepting, learning about, and LIVING better. Waiting to spontaneously recover would be like planning your finances around the concept that you will one day win the lottery!:jaw-drop:

    I am way over the 7 years point too...and when I hear about someone recovering back to normal after a year, it kind of makes me sure there are variants of this illness.....I feel that the longer you are sick the more the body has to content with....
    I hope not to bring anybody down in saying this, but I honestly believe we are stronger and brighter in life by facing the facts about ME not the fantasies.:hug:

    P.S I would also like to pledge that if I do spontaneously recover then I promise I will not go on PR to tell everyone to 'do what I have done, and you will be well,' as some do!:rolleyes:

    If there was a way to get people well, then somebody would already be making a fortune out of it.....
     
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  14. caledonia

    caledonia

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    Carol Head from SMCI claims to have had ME/CFS and recovered spontaneously. Or to be more exact, she recovered over time and doesn't know why. Saw it in an interview on Llewellyn King's ME/CFS Alert I think.
     
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  15. alex3619

    alex3619 Senior Member

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    I heard, but have not confirmed, that Dr David Bell has stated that most of his child patients recovered, but that 95% later relapsed, mostly in their 30s?
     
  16. Daffodil

    Daffodil Senior Member

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    i have heard about a few who normalized in about 2 years...but it is very rare and i have no idea if they stay well
     

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