Cell Danger Response, Autism, CFS and "Her Name Is Sabine"

Merry

Well-Known Member
When I read that Robert Naviaux believes that ME/CFS, along with Gulf War Illness and autism (and a few other illnesses that I can't now recall), are cell danger response disorders, one question that came to mind was whether people with autism suffer from fatigue. I'd never heard the issue discussed. But as my own energy reserves are limited, I didn't get around to looking online for an answer.

For a long time I've wondered whether ME/CFS and autism have something in common. I began to think about this after discovering from reading on ME/CFS patient forums that ME/CFS people either have been diagnosed with autism themselves or have close family members who are autistic. I have seen both in my own family.

By chance recently, when checking out for the first time a streaming service that my public library contracts with, OverDrive, I saw listed on the home page the documentary "Her Name is Sabine." I had watched this film in the year or two after its release in 2005. I've often thought about it. Was I correct in thinking that the subject of the film, Sabine Bonnaire, had been diagnosed as autistic? I wasn't sure and decided to take the opportunity to see the film again.

The film, directed by Sabine's elder (by one year) sister, Sadrine Bonnaire, shows the contrast between how well Sabine functioned in early life compared to her marked decline after she had spent five years in a psychiatric hospital. As the film opens Sabine is 38 years old. Yes, Sabine had been, eventually, diagnosed as autistic.

What I hadn't remembered about the film was how much, after the years in an institution, when Sabine was living in a group home, she resisted physical exertion. One of the activities the group home staff tried to engage the residents in was gardening. Out in the garden, Sabine would sink to the ground and lie flat, and no amount of cajoling by the staff could get her up again -- she had to be pulled.

One of sister-and-director Sadrine's concerns about the decline of Sabine was that the young autistic woman had been, while in the institution, prescribed a number of drugs. Sadrine doesn't give details on this treatment but mentions that in the group home Sabine's medicines had been reduced to half of what she'd been on in the institution, implying, I think, that Sadrine believed that the treatment with drugs contributed to her younger sister's appalling deterioration.

That left me wondering what drugs could initiate or make worse cell danger response.

Something else caught my attention as I watched the film the second time. In scenes shot at the group home, Sabine's posture is poor, and she waddles. Long-time ME/CFS specialists have mentioned the poor posture and waddling in their patients.

If you'd like to see "Her Name Is Sabine" and don't have access to it through a streaming service, it is available on youtube, in six parts, with English subtitles:






https://youtu.be/l1ckqUl8m5A
 

Not dead yet!

Well-Known Member
I wish I knew more about Autism. Some of the things that happen are very symbolic. Like she receives a gift of dolls and asks the carer: would you help me put it away in the chest, because I'm afraid of putting them in the piss pot. I instantly followed her thinking:

Something nice,
Nice things end up in the piss pot.

I know it's not any proof that she really thought that. It's just... after a lifetime of having her life dictated and limited, she might make such a construction to express her frustration.

At first I thought, she is alienated from her thoughts and intentions by the medicine. But I'm not sure that's true. It makes more sense to me that she would associate something beautiful with her earlier happier life and symbolize the loss of it by putting it in the piss pot. It also shows she still has hope, because she can still protect that which is beautiful.

What finally convinced me of the interpretation, was the loss of her beautiful hair. It was probably a practical decision, but when carers make such a drastic change in appearance, they sentence the patient to a lifetime of looking in the mirror and failing to recognize themselves.

The event I'm referring to is in the 5/6 section, near the end.

It's hard not to empathize with her and wonder how her life might be different if she had the right help at the right time.
 
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Merry

Well-Known Member
Now that I've returned to this thread after several weeks, I'm embarrassed to see that although I said that the film is in six parts, I only provided links for five. I apologize. Here's the link for the sixth:

I hope that I didn't mix up the order of parts.
 

Not dead yet!

Well-Known Member
Now that I've returned to this thread after several weeks, I'm embarrassed to see that although I said that the film is in six parts, I only provided links for five. I apologize. Here's the link for the sixth:

I hope that I didn't mix up the order of parts.


I figured it out, but thank you. :)
 

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