Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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diseases with similar disability and suffering level to ME

Discussion in 'General ME/CFS Discussion' started by lauluce, Nov 22, 2016.

  1. lauluce

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

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    argentina
    Hi, as the post states, I'd like to ask you if you know which diseases are comparable to ME/CFS in the amount of disability and suffering that cause to sufferers of said diseases. This I'd like to know in order to better explain to loved ones and general people what is to live with ME and how unfair is that so little atention is paid to ME by the governments, medical community and the public in general. Maybe this can help others too. Thanks!
     
    Mel9 likes this.
  2. Effi

    Effi Senior Member

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  3. worldbackwards

    worldbackwards A unique snowflake

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  4. lauluce

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

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    argentina
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  5. alex3619

    alex3619 Senior Member

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    Hence the old joke which has been circulating for decades: The doctor tells the ME/CFS patient, I have good news and bad news. The good news is you have CFS, but its not fatal. The bad news is you have CFS, but its not fatal.
     
  6. alex3619

    alex3619 Senior Member

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    There are genetic disorders that are probably worse than ME, but these are not typically included in comparisons. People are born with these, they don't acquire them later in life.
     
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  7. lauluce

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

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    argentina
    excelent joke, I'll borrow it
     
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  8. Woolie

    Woolie Senior Member

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    I sometimes like to think of diseases that I'd like to have less than MECFS. As a kind of positive thinking exercise or something I suppose.

    Everyone's choices will be different, depending on the severity of their CFS and their particular symptoms. So some of mine are actually ranked as worse than CFS on the list above.

    Things worse for me than my CFS:
    - quadriplegia
    - Parkinson's disease
    - Alzheimer's disease
    - schizophrenia or biploar disorder
    - major depression
    - severe anxiety or obsessive-compulsive disorder
    - survivor of massive stroke, which significantly impairs thinking, language, memory or some other important mental function
    - major head injury
    - severe autism
    - no sight at all
    - lupus
    - progressive MS
    - progressive motor neuron disease/ALS

    Things I'd rather have than my CFS:
    - most types of cancer (you die or you're okay, much better than this endless misery)
    - rheumatoid arthritis
    - HIV
    - relapsing-remitting MS
    - diabetes
    - epilepsy
    - paraplegia
    - and lots of others I can't think of right now

    What do others think?
     
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  9. justy

    justy Donate Advocate Demonstrate

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    I think Lupus can actually be quite similar to MS, as can MS - although they get specialist Drs, nurses, home visits, medical treatments etc.

    Many people with Lupus lead better lives than me, some worse. I have MCAS and wouldn't want to have systemic Mastocytosis - although even they have treatment options for managing their condition.

    I also wouldn't want to have a severe disabling mental health condition - although I have had severe anxiety as part of this illness and it is the pits.
     
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  10. justy

    justy Donate Advocate Demonstrate

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    to add - I sue a wheelchair now, but have no independence due to not being able to push myself or go out much so I often think of what it would be like to have a physical disability alone - then I could have normal energy levels, normal brain function and could do stuff like play sports etc - a lot of disability stuff is geared up to help paraplegics and is way too much for someone like me.
     
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  11. Woolie

    Woolie Senior Member

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    Yes, imagine being able to go for a swim, keep fit, do a full day's work at your desk. Plus, everyone sees your limits and no-one expects you to be able to just get up and walk like everyone else.

    I hope this doesn't offend anyone with paraplegia. Its an awful thing to have. I would just personally prefer it to what I have.
     
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  12. Marc_NL

    Marc_NL Senior Member

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    I sometimes think about what body part I would like to trade in for my health, since my ME is mild I think I would give one hand for being healthy but I guess others might go a lot further than that?

    Anyone ? :p


    .
     
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  13. justy

    justy Donate Advocate Demonstrate

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    This convo is maybe a little wrong? But i'll answer it anyway. I would trade in more than a hand - perhaps a whole arm, or even the use of my legs - as @Woolie says - to be able to go swimming, work out in a gym, work a full day at a job, cook my own meals etc would be amazing.
     
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  14. Horizon

    Horizon Senior Member

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    While it is impossible to compare illnesses I think for purposes of explaining and for understanding perhaps Multiple Sclerosis is similarly debilitating. Lyme and Fibromyalgia and RSD as well but again you get into the issue of those being invisible and equally as misunderstood as ME.
     
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  15. ash0787

    ash0787 Senior Member

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    Depends how bad the individual case is, in the first 6 monthes of it I could do everything I normally could half the time except for exercise, the worst part was not knowing what was wrong.
     
  16. PennyIA

    PennyIA Senior Member

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    I usually draw comparisons to MS... less physical disability, but more fatigue and near constant pain
     
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  17. Mary

    Mary Senior Member

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    Interesting post! I like the Danish study very much. I wonder sometimes how much more bearable ME/CFS would be if we had support and belief and respect from the medical profession, a willingness to work with and validate us, even if they can't do much; if we had needed emotional and social support - e.g., I'm sort of lucky, I can drive, get to the store, though I have to plan days in advance, and often pay for days afterwards. So most of my energy is devoted to meeting basic needs of food and a halfway sanitary place to live (cannot keep my home clean) and laundry every couple of weeks. Is this living? I rarely have leftover energy for anything else that might be fun or interesting. I read a LOT, don't watch much TV. Oh and I go to the library when I can manage, but again have to plan very carefully.

    So I wonder sometimes if I had in-home care, someone to go grocery shopping and do light cleaning, just a few very basic things, it would help so much. And if when I went to the doctor, they acknowledged what I'm dealing with - I don't know how much these things would help -- but wonder.
     
  18. Shawn

    Shawn Senior Member

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    Yes at least with HIV you get your daily antiviral and eat well and keep a good lifestyle and you can live a "normal" life and now an almost normal lifespan.Better and easier than this auto immune misery for sure.
     
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  19. BruceInOz

    BruceInOz Senior Member

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    I remember seeing something on TV a few years ago about someone who had lost one or two limbs and how they had fought back and done lots of very positive things with their life despite the adversity. It really struck me at the time how PEM makes it nearly impossible to get that sense of fulfillment he was talking about. It's hard to "achieve despite the adversity" when any increase in energy expenditure above that needed to just exist knocks you flat. I would have happily traded my illness for his situation.
     
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  20. Shawn

    Shawn Senior Member

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    Exactly and we get despised ,abused and ignored at the same time despite actually sometimes suffering more ,in many cases at least.
     
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