The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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Full recovery- is it possible???

Discussion in 'General ME/CFS Discussion' started by JollyRoger, Jun 14, 2017.

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Full recovery for everyone - is it possible?

  1. Yes

    13 vote(s)
    33.3%
  2. No

    3 vote(s)
    7.7%
  3. Improvement YES - but not a 100%

    23 vote(s)
    59.0%
  1. JollyRoger

    JollyRoger Senior Member

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    Dr.Davis/Dr.Naviaux once said that CFS is like a ON/OFF switch and after the application of the right drug everyone can be live a normal life.

    On the other side you can read on the Nightingale page that it is an incurable disease with a permanent damage of the brain stem and only a few can expect a bit of improvement.

    So which one is right?
    I heard of so many people that improved but the majority never reached full energy.

    Can we expect that Whitney Dafoe will make fotos of the Kilimanjaro one day?

    What's your opinion?
     
    Jennifer J likes this.
  2. Sushi

    Sushi Senior Member Albuquerque

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    Well, nothing said in the past can be relied on any longer. We have so much new research evolving--so we really don't know yet whether full recovery is possible. Time will tell.
     
    echobravo, Dechi, MeSci and 10 others like this.
  3. Esther12

    Esther12 Senior Member

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    Some people do recover, but we don't have any good evidence showing that any treatment/approach helps people recover. It seems that not many adults who've been ill more than two years go on to recover (a systematic review reported a figure of 5%), but there's not a lot of good evidence on that either.
     
  4. JollyRoger

    JollyRoger Senior Member

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    5%....how discouraging!!!
    I'm eager to belong to this 5%.

    The fear of an irreversible damage is tremendous!!
    We don't know what exactly could be permanently damaged but I hope it grows back :)
     
    MeSci, Jennifer J and Esther12 like this.
  5. Gingergrrl

    Gingergrrl Senior Member

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    I think that there are a variety of illnesses and subgroups on this board so it is impossible to know what will ultimately help each person. Some it will be anti virals, some antibiotics, some mold binders/detox, some immune modulators, some POTS/OI treatment, some mast cell treatments, some Rituximab and autoimmunity treatments, etc... I think we represent a very heterogeneous group.
     
    merylg, echobravo, char47 and 6 others like this.
  6. maybe some day

    maybe some day Senior Member

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    We've come a long way in research, that's for sure from when I first became ill couple of decades ago. But honestly until researchers find you have XYZ causing the problem and you take ABC to eradicate XYZ, chances for full recovery are nil. You may improve which is quite realistic. We can only hope researchers finds the smoking gun.
     
    Last edited: Jun 14, 2017
    ballard, Sean, Marky90 and 1 other person like this.
  7. Carl

    Carl

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    Yes, it is possible even for the worst affected IMO. However for that recovery, do not rely on science and medicine because that will never be possible for them to heal the severely affected ie brain white matter damage and lowered GFR

    Destroying the bacteria by modern (lol) medicine will cause up to 100% energy recovery but the other symptoms will take more advanced alternative medicine treatments.

    However I don't think the majority of the alternative medicine field would be able to rectify things because most of them are as clueless as researchers and the medical profession ATM IMO.
     
    JollyRoger likes this.
  8. Alvin2

    Alvin2 Senior Member

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    We cannot answer this question without knowing what is going on. Some do spontaneously recover, is that because they are recovering or is it because they actually have something else? Only way to know is to figure out whats going on.
    However if you want to compare ability i will bet on Dr Davis over Nightingale
     
    MeSci and JollyRoger like this.
  9. JollyRoger

    JollyRoger Senior Member

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    @Alvin2 the Nightingale prognosis is an absolute nightmare and I also prefer Dr. Davis outlook :)

    Permanent damage can only be treated palliative.
    That would be horror^2!!!
     
  10. Alvin2

    Alvin2 Senior Member

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    I don't just prefer their outlook, i see a team containing 3 Nobel winning scientists, some of the world's top experts in several areas, millions of dollars, having unparalleled access to drugs and research equipment available nowhere else as having a lot more ability to find a disease mechanism and treatment.
     
    Last edited: Jun 15, 2017
    Aroa, justy and JollyRoger like this.
  11. justy

    justy Senior Member

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    recovery is possible at the moment for some, but many people I have spoken to have, like me, recovered when younger only to relapse harder years later and become permanently more ill.

    I had a remission to near normal for around 9 years and didn't know I could get sick again. There are a large group of us like this on PR.

    So, even if Navieux can switch something off, im not convinced it wont switch on again.

    Final edit to say I WISH I had palliative care, or any care at this stage.
     
    merylg, Hutan, echobravo and 3 others like this.
  12. Alvin2

    Alvin2 Senior Member

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    Well if he flicks the switch off and it turns back on you can flick it off again
    That said i completely understand, even if i achieve full recovery i will never be able to shake the fear that it could come back
     
    maybe some day, justy and Aroa like this.
  13. JollyRoger

    JollyRoger Senior Member

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    @justy what was your activity level at the first time of the disease?
    How did you recovered?

    The brain can be so adaptive.
    I had read about a Frenchman who had just 10% of a normal brain but still lived a normal live...
    Almost normal... he had a Iq of 75.
    He went to the doctor because he had pains in his left leg.
     

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    Last edited: Jun 15, 2017
  14. Aroa

    Aroa

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    I guess the Research will address what the triggers might be for different subgroups and how to prevent them
     
  15. Jenny TipsforME

    Jenny TipsforME Senior Member

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    I answered yes, but more in an optimistic sense. This definitely isn't currently the case. The only reason it would be untrue forever is if we have permanent irreversible damage.

    There can also be ME-related damage, I'm not sure how to properly categorise that. For example, my years of dizziness when I eventually got tests was caused by an inner ear lesion. I would say I probably got the infection that caused the damage and fought it off badly due to ME. My doctor said that in most people the brain is able to adapt to the faulty message from one ear, and you stop getting the vertigo. He speculated that in my case, when my brain isn't coping well ME wise it can't adapt in this way (I suggest we have a problem with the cognitive load of selective attention, which also causes us difficulties with noise etc, I don't think this has been researched?). I took his interpretation onboard and now interpret vertigo as a sign of cognitive fatigue and need to rest. It works quite well except for in moving vehicles. I have a lot less nausea/dizziness.

    Anyway, when my ME gets treated/cured I will presumably be left with this inner ear damage but probably not experience problems from it. Will I be fully recovered? Was this separate from ME in the first place?

    For the time being I think people do go into remission and it is fairly mysterious why most of the time. My sister used to struggle to climb the stairs and go out in a wheelchair. She's recently walked up 4 mountains on holiday, as far as I'm aware without payback. I've previously got to about 95% so in theory I should be able to do that again, even without proper treatment.
     
    maybe some day, Aroa and justy like this.
  16. geraldxx

    geraldxx

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    It's really hard to tell even if you exactly know what is wrong with you. I think most don't exactly know what the problem is, this is also a fact for me. It's a trial and error thing. When you supplement A in high doses, feel better but after some time B gets low because of high A supplementation. It's sometimes a trap, a vicious cycle. I never give up, i search, research, read stuff, try and stop, maybe i will reach one day my goal. We have only this one life. And if i fail i tried hard at least. I know it's hard to stay optimistic but i can reach 2 good days per week when i'm disciplinated. 2 good days is better then nothing.
     
  17. Jenny TipsforME

    Jenny TipsforME Senior Member

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    @geraldxx i I think at the trial and error supplement level it's more about adding up 5% improvement. Which is worthwhile in itself. I doubt this will lead to full recovery. People do go into spontaneous remission though and at this point in time that isn't understood. I interpreted the question more about future research potential. I think it helps to believe they will find answers. I'd be very happy with ongoing effective treatment, if there isn't a one off cure.
     
    taniaaust1 and justy like this.
  18. justy

    justy Senior Member

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    My activity level was nowhere near as low as it is now. Now im moderate severe and use a wheelchair, back then I was probably mild moderate for a few years, although I had a spell where I couldn't walk at all and just slept for 16 hours a day. I didn't have any muscle strength back then either and couldn't open a can of beans. Its all very hard to judge as we had no internet then, no connection with others and I had no diagnosis.

    I didn't do anything to recover - I just gradually got better until I realised I was no longer ill. But then over the years of remission there were niggling symptoms, inability to get fit or improve stamina were very marked and stress tolerance was low.
     
    Jenny TipsforME, JollyRoger and Aroa like this.
  19. taniaaust1

    taniaaust1

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    Yes quite possibly, I was basically as nearly bad as whitney is for about 9 months. I was so bad that Im surprised I survived I was actually going comatose for days at a time without being able to eat or drink (I should of been being tube fed), had trouble even holding a spoon due to shaking so much every time I tried to do anything so had to eat with hands.

    Due to exhaustion if I woke up I'd eat once a day small amount only and struggled to stay awake and keep my eyes open just to eat that one small meal, couldnt speak for periods due to lost ability to put my language words together (so would speak with a single word or with like made up basic sign language), couldnt handle noise/light, had trouble holding my head up if I raised myself etc. At times I was paralysed to the point I remember one time where I couldnt even move my fingers. I was also in a lot of pain, everything hurt.. inside my bones really hurt, behind my eyes hurt, my skin hurt with the sheets touching..

    My child daughter was being my carer and had to do everything for me... including emptying a potty by the bed that I'd actually let myself fall out of bed to use and doing that once a day and trying to eat with hands once a day while laying still in bed was the maximum I could do. I couldnt brush my teeth or do anything.

    anyway years later 5? 6? years, I'd FULLY recovered from that (it was a very long slow recovery over years. I personally think that unless one has some kind of miracle cure, the sicker u are, the longer it will take over time to improve and if you get very lucky recover. I recovered quite quickly when I got to the 80% okay mark). I did one of worlds longest marathons (entered a 100K marathon) while i was in remission from this disease and didnt crash from that. I was fully recovered.

    The problem is once you have had ME/CFS once, you will always be susceptable at getting this illness again even if fully recovered. It just takes getting a virus going around, being triggered by a vaccination or any of the things which can trigger this illness and you can unfortunately end up back into it (I caught a minor virus thing that seemed just like a small cold going around and it crashed me back into ME/CFS after 2-3 years of FULL remission).

    Please call it remission and not "recovery" as its important with the ME/CFS politics. That word 'recovery' and that some of us "recover" is preventing our illness being accepted by some government depts for care support being made available to us hence we need people to use the term "remission" when refering to ME/CFS recoveries
     
    Last edited: Jun 15, 2017
  20. taniaaust1

    taniaaust1

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    Think of it this way. If you havent got actual organ damage showing in scans which wouldnt be repairable by the body, you are probably alright for a future possible full remission. We just all need a wonder drug
     
    Last edited: Jun 15, 2017
    Jessie 107 likes this.

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