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How many people actually get better?

Discussion in 'General ME/CFS Discussion' started by Omri, Oct 5, 2015.

  1. Omri


    There's tons of statistics around, but what is reliable? This method cured X amount of patients, and this one cures Y amount, etc.
    Most people that get sick at a young age get better..

    What are these based on?

    It seems from these forums that nobody actually gets better. How am I supposed to know if a cure story is real or someone trying to sell me something? Does anybody get better spontaneously or just through the gazillion types of treatments (how am I supposed to even choose one).
  2. Denise

    Denise Senior Member

    @Omri - It might be helpful to clarify if you mean cure (as in 100% symptom free and no need for further treatment) or improvement (and by how much).

    It is also helpful when reading any information about "cure", "treatment" etc to note things such as which definition was used in making the diagnosis, whether diagnosis was made by a specialist or self-report or other...
    SOC likes this.
  3. worldbackwards

    worldbackwards Senior Member

    Wouldn't this be subject to bias? If there are lots of people who get better, they are unlikely to be sat around all day posting about their (now non-existent) illness in internet fora.

    Here's what the Canadian Guidelines have to say on the subject:
    Intriguingly, note 7 refers to this study:
    I wonder how often Sir Simon quotes that figure?

    I suspect the number of people who make a functioning recovery (coping pretty well but with symptoms) is a good deal higher.
  4. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

    My impression based on investigating exactly this, is that almost no one get back to their former level of functioning without treatment. A lot of people has a fluctuating illlness dictated by PEM, some get really sick and never improve, some get sick and its initially mild and then spiral downwards etc etc. There does not seem to be any consistent pattern if I`m honest, and it makes sense as we all have different immune systems, genes, environment (granted that its autoimmune for a subset).
  5. Snowdrop

    Snowdrop Rebel without a biscuit

    Then, just to complicate things ;) there is the issue of self reported remissions of symptoms that would fit the data but because the person is not cured they relapse later on--sometimes years later but the anecdote of recovery is still out there. I do however believe that it's possible for some few to have a spontaneous recovery or relief from symptoms through treatment.

    I do wonder for cases of real ME what happens to the young people years later who recover. It would be good to have follow up data to help better assess this. There will for the time being always be a level of uncertainty.

    I continue to want to believe that supplement x or protocol y will help me. The hard truth for me is that I understand pacing and what I need to do to achieve that but I am crap at it. I've been at it so long.

    My new response is to do whatever small things I can to be heard by the people who can effect a change in the research and search for treatment that works. These days thats not much.

    If you are casting about for what protocol to consider--if you want to treat your symptoms at least to get some relief even if it's not 'the cure'
    you might try watching Nancy Klimas' video on treatment. There's a link to it in my public bookmarks>video collection>open the PDF and scroll down to Management of ME. That might give you a place to start.
    wintersky, Woolie, SOC and 1 other person like this.
  6. Juzey


    Obviously this is only anecdotal evidence and therefore probably not very helpful, but I have been steadily improving from being able to do little more than watch TV all day (when I was 11) to being in school full time (from when I was 16). My mum also had CFS when she was in her 20s (I think) and has now completely recovered. I don't know about the statistics, but there is hope.
    Marky90 likes this.
  7. wintersky


    Good Day All,

    I have gotten totally healed with zero symptoms, for about close to 15 years. No relapse. It was serious enough back then that i had to stop school for close to a year. Though i wouldn't dare call it 100% CFS since i was never diagnosed all the way to the end but my symptoms were very similar, for which you can read up yourself. I cant recall how i accidentally came by this site but i was so struck by the similar symptoms for which i had back then, so ive felt obliged to stay around to share my story to give everyone hope.

    The only thing i want to say here is that there is hope. Dont give up. Keep fighting :):):)
  8. MeSci

    MeSci ME/CFS since 1995; activity level 6?

    Cornwall, UK
    I started a thread asking this question here.

    Here is a thread comparing outcomes for people who developed ME after glandular fever (mononucleosis) with those for people who did not have such an obvious trigger. The former tend to be younger.

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