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How many people have been ill with CFS/ME for over 20 years?

Discussion in 'General ME/CFS Discussion' started by Misfit Toy, Apr 22, 2014.

  1. Tito

    Tito Senior Member

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    My 28th year... Never experienced a normal adult life... Sudden onset with slow deterioration. Deterioration only sped up after so-called "treatments".
    I was thinking the other day: what is the point of a life like that? If I were offered to start again my life, knowing what I know today, I would politely decline. It just makes no sense.
    NK17, leela, peggy-sue and 2 others like this.
  2. taniaaust1

    taniaaust1 Senior Member

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    Makes me sad knowing I will hit the 20 year point, there is no way I can see myself go from wheelchair to recovery in the next 3 years when I'll be reaching the 20 year mark but who knows, maybe we will get a miracle and there will be a cure by then.

    We can only hope!

    I think all you long termers are soo brave to keep hanging on in there.
    peggy-sue likes this.
  3. brenda

    brenda Senior Member

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  4. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I have wondered as one ages and the longer they have cfs/me, it becomes harder to work out what is caused by aging and what is caused by cfs/me. Then again cfs/me also seems to speed up the aging process through things like hormone dysfunctions, increased oxidative stress, im sure the list goes on.

    Is there anyone in their later years that have realised that most non cfs people their own age have caught up with them as far as fatigue and cognitive decline etc is concerned. If one is somewhat stable in their severity of cfs/me symptoms, is there an age one can put on it where non cfs people are then functioning at your level or they think its something that just doesnt happen?

    eg is when i was in my early thirties with cfs i recall saying to my doc i feel like im an old man, i feel like im a 70 y/o with aches and pains etc so when im actually in my 70s i should feel about 110??
    helen1 likes this.
  5. brenda

    brenda Senior Member

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    I have found that people in their 60's do not have my problems unless they have misused drugs/alcohol, then their cognitive decline is like mine or worse. A woman near me is 82 and walks into town to go swimming every week, tends her large garden and is often jetting off somewhere. People who have not looked after themselves will show ageing in their 60's but not otherwise. It all depends. The worst ones have been taking medications for years. I heard of a man of 115 who still runs his own business.
    justy, merylg, SickOfSickness and 2 others like this.
  6. Sean

    Sean Senior Member

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    Nah. Just stubborn. :bang-head: :D
  7. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I think those function well in old age are rare say over 70, i guess im thinking more an average.
    I agree with you that those who age badly that dont have cfs/me generally are heavy drinkers and smokers, but thats generalising.
    SickOfSickness, amaru7 and brenda like this.
  8. brenda

    brenda Senior Member

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    It also depends on what country you are in. When I lived in Germany I was in an old persons home visiting , and the average age was way above that in the UK. They were also much better cognitively and many were in the 90's. The average diet in the UK and more so in the US is much worse than in Germany where they are all health conscious and you see many 70 year olds on bicycles and swimming, That neighbour is German.
    Sing, golden, peggy-sue and 1 other person like this.
  9. amaru7

    amaru7 Senior Member

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    I so much feel you, I suffer exactly the same and often I just wish to leave life and want out. I also never had a normal life too and probably never will so I see no point as my life consists only of suffering 24-7. I struggle with every move and even though I have no work I'm not able to do the simplest things in my household like cooking, washing clothes etc.

    Btw, what kind of treatments did you try that made you worse,? Many people have tried orthomolecular treatments without success, I worry that my treatment plan would make me worse too or in the best case just wasted money
    Last edited: Apr 23, 2014
  10. amaru7

    amaru7 Senior Member

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    It all falls down to genetics when talking about aging and also diseases like cfs are mainly due to genetics. In my severe case for example I'm worse off than many 60 years old because my mitochondria produce so little ATP like an aged body, probably because of bad mtDNA. This is probably the case for many cfs sufferers too
    justy, merylg, Iquitos and 1 other person like this.
  11. Tito

    Tito Senior Member

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    I personally never felt "old", I feel ill. When I was 30, my grandmother was a 'standard' 90 year old in a home. She was the only one who believed that I was actually ill, despite everyone else fobbing me off. She had various health problems (typically old age related), but there were different from mine. My mother now is a standard 75 year old who never smoked. I can tell you, her life and mine have nothing in common... What cfs patients have is not premature ageing. It is something completely different.

    I've been a patient of KDM for 15 years, so basically every treatment he could throw at me...
    NK17, merylg, heapsreal and 1 other person like this.
  12. brenda

    brenda Senior Member

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    I was meaning those that quit, but did abuse in their past. If they were still abusing I would not expect them to still be around.
    merylg and heapsreal like this.
  13. ukxmrv

    ukxmrv Senior Member

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    30 years for me now as well with no time off for "good behavior".

    I was a healthy, happy young person at Uni when I got ME with an acute, severe viral onset.
  14. hopeful2

    hopeful2

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    I was diagnosed in 1988, so 26 years ago this year for me. I had a bad stomach bug in 1982 that left me with reactive hypoglycemia and digestive issues and what I now believe was a mild case of CFS. In 1988, I started having non stop sore throats, swollen lymph glands and fevers. I went back and forth to my doctor for a couple of months as I got weaker and weaker until I finally collapsed and became bedridden. He put me in the hospital for tests and an internist and neurologist diagnosed me with CFS after running tests to rule out other things. I did slowly improve over a period of years to being housebound but no longer bedridden and then being able to get out for short periods but never well enough to be able to work. Then in 2008, I made a slow and steady decline to being mostly housebound again and only being able to get out if my husband takes me and I bring my mobility scooter with me. I've had OI from the start but those symptoms became much worse starting in 2008. I also have IC, GERD and numerous digestive issues among other things.
  15. alex3619

    alex3619 Senior Member

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    I have told this story before, somewhere on PR, but I will tell it a little differently this time. When I was studying for my biochem degree in probably about 2000-2001, I got off the bus to go home. My unit was at the top of a hill. I slowly started walking up the hill, exhausted from a day at uni. Suddenly this mysterious figure with a mysterious contraption caught up to me, passed me and disappeared. I had maybe a hundred meters to walk, and they vanished.

    This is a partial answer to one of @heapsreal questions.

    Who was this mysterious figure? The Flash? No, it was a little old lady with a walking frame, with a wicked grin on her face from being able to outwalk me. Must have been nice at her age. I estimate she was in her eighties. I was in my early forties.
    NK17, leela, merylg and 3 others like this.
  16. Snow Leopard

    Snow Leopard Senior Member

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    15 years. Sad to hear so many with 20+ years.
  17. Iquitos

    Iquitos Senior Member

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    My grandfather smoked a pipe until he died at age 92.

    My greatgrandfather drank to drunkenness until he died at age 91.

    They both ate right, worked hard and had happy personal lives.
    Last edited: Apr 23, 2014
    merylg likes this.
  18. Iquitos

    Iquitos Senior Member

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    I have had ME since the summer of 1982, San Jose CA, -- 34 years. Sudden onset with the "killer flu", recovered about 50%, kept discarding the physical parts of my very happy, successful life at that time, until I could no longer even work in 1989.

    Got the "it's depression" run-around for many years, finally awarded disability (for depression) in 1994. The Marshall Protocol of antibiotics got rid of my back pain but I quit it because it didn't help with no energy and severe PEM.

    Got worse until I tried acyclovir plus doxycycline and that has helped stop the progression of neurological symptoms like ataxia and hyperacusis.

    Now using medical marijuana for pain and sleep and those symptoms are the least I've ever experienced since the beginning. Just sleeping all night is so helpful!
  19. Wayne

    Wayne Senior Member

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    Vaccination injury around 1962; very serious head injury & whiplash in 1967; serious illness after trip to Mexico around 1977; probably acquired my Lyme infection around the 1978; major chemical injury around 1982; mononucleosis around 1983; [worked mostly at temporary part-time jobs during the 1980's] another major chemical injury in 1994, which forced me to go on permanent disability. All these events had a cascading and cumulative effect. I guess it started about 52 years ago, my functionality has declined ever since. Sigh. :ill:
    merylg and brenda like this.
  20. brenda

    brenda Senior Member

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    Well I thought it went without saying that there are always exceptions to the rule, but that generation could get away with much more than us with the toxins around now. They also ate real food when they were young unlike today.
    merylg and SickOfSickness like this.

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