Autism and ME/CFS

Discussion in 'General ME/CFS discussion' started by darrellpf, Dec 1, 2024.

  1. darrellpf

    darrellpf Established Member (Voting Rights)

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    This is a rather comprehensive Wikipedia style article describing the overlap between autism and ME/CFS

    https://neurodivergentinsights.com/blog/autism-and-health-issues?format=amp

    Generally I spend most of my days horizontal, lots of naps and a brain on idle. I'm on a trip from west coast Canada to Europe. I didn't sleep "overnight" on the plane so was awake for 24 hours. Today my brain is active, alive and racing with ideas and connections like the good old days.

    A severe lack of sleep often works well for me to temporarily banish my ME/CFS symptoms for quite a while. I wonder about the connection to the initial short term immune system response.
     
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  2. Hoopoe

    Hoopoe Senior Member (Voting Rights)

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    I have both diagnoses and have wondered whether my ME/CFS might have been misdiagnosed autism. I ended up rejecting this idea.

    Autism is associated with autistic burnout which has not been studied much. Autistic burnout is attributed to "chronic life stress and a mismatch of expectations and abilities without adequate supports." I experienced something that fits this definition of autistic burnout but it was the result of years of trying to maintain normal life and continuing to relapse and having what is best described as PEM, and being misunderstood as not disabled. This led to years of nearly complete withdrawal from life where I had no interest in even trying and had no faith in interacting with anyone any more (because outside pressure from other people had caused the problem).

    I suspect autism might be associated with a lot of problems that tend to be underestimated because people think in terms of a simple stereotype of autism of poor social skills that doesn't include debilitating fatigue, cognitive impairment, and other symptoms that are common in chronic illnesses.

    I have higher physical function than most ME/CFS patients but also suffer what is best described as PEM. I need the ME/CFS diagnosis to make sense of what I'm experiencing and knowing how to manage it.

    There was this study that reported a "higher risk of chronic disabling fatigue for children with neurodivergent traits, likely linked to higher levels of inflammation"
    https://orca.cardiff.ac.uk/id/eprint/170644/

    I remember that the FOXP4 gene has been linked to both long covid and autism.

    Perhaps autism increases the risk of ME/CFS. @Chris Ponting can DecodeME tell us anything about this?
     
    Last edited: Dec 1, 2024
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  3. Kitty

    Kitty Senior Member (Voting Rights)

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    I imagine you could find statistics linking autism to all sorts of illnesses and attributes, because it's common enough to co-occur with all sorts of illnesses and attributes. It could just as well be chance.
     
  4. DigitalDrifter

    DigitalDrifter Senior Member (Voting Rights)

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    My Autistic Burnout was misdiagnosed as CFS. There's a lot of overlap with the sensory issues, I had both deteriorative auditory intolerance and deteriorative olfactory intolerance which got worse with sleep deprivation.
     
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  5. Hoopoe

    Hoopoe Senior Member (Voting Rights)

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    Can you describe it?
     
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  6. darrellpf

    darrellpf Established Member (Voting Rights)

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    I was late realized at 63. I agree that one of the defining differences between the two is PEM, which I've never seen mentioned with autism.

    In my case, the realization about autism came when I asked myself why I was so insistent/consistent about exhausting myself with exercise routines when it was very clear they resulted in PEM.

    On the other hand, those same usually aerobic routines are the only times I feel good, which I attribute to increased blood flow to the brain.
     
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  7. darrellpf

    darrellpf Established Member (Voting Rights)

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    I knew a had a vague recollection....

    Naviaux did a very small study treating autistic children with suramin. He later moved on to the cell danger response and ME/CFS.

    That was around 2017.
     
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  8. DigitalDrifter

    DigitalDrifter Senior Member (Voting Rights)

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    I had unrefreshing sleep, brain fog, my eyes would sting from lack of sleep. I became a very light sleeper, with smaller noises being enough to wake me up. I developed synaesthesia and started to feel physically hit by certain sounds. The more I was exposed to an offending sound or smell, the more painful it became, I haven't fully returned to baseline over a decade later. At school I had a high IQ and good memory but over the years my cognitive faculties diminished, I had to drop out of college despite having great potential. I struggled with my special skills (I was originally talented at music but burnout diminished my skills). I remember becoming impulsive.

    At the time I didn't have a word for burnout, I just called it tiredness because poor sleep made it worse and I thought everybody experienced sleep deprivation as Autistic Burnout.
     

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