August 8th, 2018: Understanding and Remembrance Day for Severe ME
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Do people recover?

Discussion in 'General ME/CFS Discussion' started by JBoneske, May 23, 2018.

  1. JBoneske

    JBoneske

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    I just googled that for something to do and look for some optimism. Having CFS and losing your job and everything else going to Hell it seems isn’t helping the optimism.
    Apparently people do according to google posts. They recover at different levels from totally to very little. Some people recover in a year or over decades. Small percentage even gets worse.
    What have you actually seen, good or bad?
     
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  2. maybe some day

    maybe some day Senior Member

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    Well, I cant speak for everyone, but what Ive seen is, if you dont get over this within a year, it will be chronic. I would say complete recover is quite rare, maybe less than 5%. There are degrees of severity that can cycle over the years. So theres a likely possibility of improvement- however one can crash back to the square one at any time.
    For me, ive had this a VERY long time. The first 5 years were hell... then things got alot better, and better...only to be rip shredded back to hell again.

    Have an open mind, because theres no way to understand this illness. You can do everything right.. diet, rest, nutrition, only to be thanked by a massive relapse for no reason.
     
  3. Hip

    Hip Senior Member

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    There are a few threads on this subject.
     
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  4. geraldt52

    geraldt52 Senior Member

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    Answering your question with a question, I'd have to ask "recover from what?".

    There are recovery stories, but no one really knows what they've recovered from. They may have had CFS, they may not have. You may have CFS, you may not have. There are no biomarkers, only a collection of symptoms, many of which are shared by a number of illnesses.

    Recoveries seem to occur when people haven't been sick for very long...which may just indicate that they don't have the same illness as those who remain sick longer.

    I think that remission and relapse is much more common in long term CFS than recovery. I had one very significant remission in 35 years now, but mostly it has been a long, slow deterioration.
     
  5. Dechi

    Dechi Senior Member

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    At the Montreal ME collaborative conference a few weeks ago, there was a doctor who treated ME patients for 30 years. He has seen thousands of them.

    He followed 600 over the course of 30 years. Of those, 15% recovered within the first 4 years. Some of them got sick again later in life after getting a viral infection. 70% managed to get somewhat better through treatments they found themselves. 15% got severe ME.

    So yes, it is possible to recover but It seems even those who do remain fragile to viral infections and must remain cautious. It is also possible to get better even if not recovered.
     
  6. Runner5

    Runner5 Senior Member

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    Sure this has been posted before but found this article in NATURE interesting.
    https://www.nature.com/articles/d41586-017-08965-0

    Personally been deteriorating at an alarming rate. Little things my family takes for granted are getting very tough for me. Been noticing lately how much effort it takes to lift my butt off the toilet, how much effort to reply to a question, how much effort to watch television. After having the flu so bad on top of this crap, I'm just so bonked.
     
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  7. taniaaust1

    taniaaust1 Senior Member

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    Even severe ME my be recovered from, I say this as I had a 2-3 year "full" remission period after a slow recovery from a fully bed bound state for 8-9mths. It was about 4-6 years into the ME that I reached a full recovery point. (Ive found that the less ill you are with ME, the easier it is to improve faster from that point)

    That being said even if one has made a full recovery from this (to the point where one is no longer having to watch what one does and no longer needs to pace) sadly you can be slammed back into this illness. Your susceptability to it will still be there so you will always be at high risk of getting it back.

    I got it again after the remission due to was seemed to be a minor cold just going about when I didnt slow down while very minorly sick with that cold (so I kept going to work), I didnt think I had no need to slow down due to a very minor cold as I'd been completely well for years. I have not been able to get better again since.

    The crash from that cold was followed by a further crash when Centrelink then forced me to work (they actually refused to accept my sickness certificates and sent me to a disability job centre to try to get me working 6-8hrs per week thou sick so i just got worst and worst) . I didnt get to take the time to just rest my way back to recovery from what was probably a 15-20% crash.

    So Im now homebound and mostly bedbound with my latest medical assessment saying I now need full time care as Im now capable of doing very little

    When i was in remission, I even did a 100km marathon without issues (5 years before I was almost dying due to ME, I was so severe that I once went comatose for days without waking, suffered paralyses, sent into like seizures with noise and couldnt handle movement or light, unable to speak sometimes etc). So whatever is wrong with our bodies CAN come good (so if you are seeking some optimism, hold onto that thought). Its a pity thou we just dont really know what that is. If they work that out, maybe this illness could be not to hard to fix????
     
    Last edited: May 23, 2018
  8. maybe some day

    maybe some day Senior Member

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    This is exaclty what happend to me as well
     
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  9. ebethc

    ebethc Senior Member

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  10. mariovitali

    mariovitali Senior Member

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    I have also recovered and remain symptom-free as long as i continue a specific regimen.

    There is also a person that i know (and i also forwarded his DNA Data to Prof. Davis and Robert Phair) that followed a regimen for 6 months (if my memory serves me well), got Symptom-free and stays to this day without any regimen. I do not believe that this will continue however and ultimately he will have to use the same regimen that got him Symptom-free
     
  11. matthew894

    matthew894

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    do you know what the regimen was?
     
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  12. lauluce

    lauluce as long as you manage to stay alive, there's hope

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    exactly, recover from WHAT? the thing that makes all this so confusing is that none of us is sure that we share the same disease!
     
  13. Wonkmonk

    Wonkmonk Senior Member

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    There definitely are reports of recovery even after long and severe illness. But I have to say, of those who recover rather quickly I think many are misdiagnosed and they in fact have burnout or a psychological thing.

    I think for those who have "real" CFS, the recovery rate is rather low.
     
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  14. Wonkmonk

    Wonkmonk Senior Member

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    I am convinced there have to be different types of disease with different triggers and sustaining factors. There is so much variation in how people got into this (infection, vaccination, no apparent trigger etc.) and in symptoms and markers (immunological, autoantibodies, allergies/MCAS etc.), and also a lot of variation in response to treatment (Rituximab, antivirals, antibiotics).

    It simply can't be all the same thing.
     
  15. Stretched

    Stretched Senior Member

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    I’m on the same train as @Wonkmonk. I ‘m sure threre are variable illnesses in this forum. So what’s to recover from depends on what the symptom manifestation is. You can make symptoms go away. Some return and new ones emerge. So you get skewed answers.

    If we really knew what ‘it’ was we could address the question of cure (or remissions). My own gut feeling is that longer term PWCs don’t recover and won’t recover until researchers get away from the insanity (continuing to study the same old rabbit holes and expecting different results)! Go study the biodynamics of how (and why) a chameleon changes color...or something along those lines... and open new fields of correlations.
     
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  16. maybe some day

    maybe some day Senior Member

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    This sums up the original question nicely.
     
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  17. Tunguska

    Tunguska Senior Member

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    I have significant health problems remaining, but no more ME/CFS symptoms at the moment. I was 98% sedentary (not bed-bound) for over 2.5 years, and for at least several months of time went through drug withdrawals. During those I took absurdly high doses of agmatine (3-6g+/day), theanine (2-4g/day, actually an immune modulator), adamantane (strong gut modulator) each for weeks at a time, and ate more white rice (who knows). Those 3 supps feel like absolute hell on the CNS in normal conditions (no free lunch) but help offset drug withdrawals so that's what kept the dosage going. They cut my gut problems at least in half. Simultaneously a separate effort fixed my circadian rhythm such that my system started waking on cue every day at 7am with enough energy to get my up to the point it became annoying and now I have to shift my lifestyle for new hours. Some months afterward I noticed definitely I could go without a week's sleep or 2-hour long brisk walks without developing any immune-like symptoms or payback (significantly hurt my joints in the process but hey) or breaking my circadian rhythm, and my alcohol hangovers went back down to about 1 day long. It's hard to figure out when that switch happened and didn't want to jynx it, but now I only have symptoms left from other conditions (albeit some are quite bad). Good luck to the rest of you.
     
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  18. Snow Leopard

    Snow Leopard Hibernating

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    I agree with the estimate of around 5-8% genuine recovery (not 'living within limits', but recovery!). Most of those people recover in the first 2-5 years according to the CDC surveillance study. (Holmes Criteria)
     
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  19. lauluce

    lauluce as long as you manage to stay alive, there's hope

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    20 years and counting here
     
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  20. Wonkmonk

    Wonkmonk Senior Member

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    Disease started 10 years ago and got constantly worse.
     
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