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| An envelope for Phillip from Sam. Phillip does not need to have his address blocked because he has it on his own blog. I think I need to start appropriating ideas from Sam. |
Newer readers won't know about Sam unless you scroll back to 2019 and early 2020. She participated in the exchanges for a little over a year and then sadly passed away. She had ME-CFS (Chronic Fatigue Syndrome) The ME part is a medical term. There has been a lengthy and complicated history to figuring out what is going on with people who become incapacitated with a difficult constellation of symptoms. Sadly, it is frequently considered a mental illness and there have been only a handful of people who even care to do actual scientific research. NIH gives it the least amount of money for research of any of the conditions that ask for funding.
Before she died, Sam had asked me to cover this topic. I fully intended to do so because I have known two people who had the condition/disease. But, I was never sure where to even start. Then, I saw a film on Netflix that explains it better than I can. It's not light entertainment - but the patient has done a remarkable job of portraying her situation and sharing gut wrenching information about how difficult it is to navigate through the various options for patients. Her husband is an amazing person. If you want to be more informed about a disease/condition that is not all that uncommon, it's a very good film.
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There was a comment left this morning that I might have meant to say - that ME/CFS is not common - but, I actually think it is more common that people might think.
I'm including some additional info:
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)
According to an Institute of Medicine (IOM) report, an estimated 836,000 to 2.5 million Americans suffer from ME/CFS. However, most of them have not been diagnosed.
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The film came out in 2017, so I wonder if Sam had seen it. She died in May of 2020. I do not recall her mentioning it - but I feel confident that she would approve of the film. When the film was over, I was curious about what had happened to the woman who made the film which came out in 2017. Oh.My.Gosh. This is where it gets really interesting.
She has a website with a ton of information. It turns out that after suffering for many years with the chronic fatigue, she went through thyroid cancer treatment and then --- two unbelievably complicated surgeries for craniocervical instability and tethered cord syndrome. And those two surgeries appear to have resolved the CFS entirely. There are other patients who have experienced relief - but it does not appear to be just one cause of CFS. At least there is some progress being made.
Link to the film:
Below is a link to Jennifer's website. The link goes to the [My Story] page -- there are a lot of links to other pages with a lot more information.
To see more of Sam's work, you may do a search on this blog for *Sam* - although, you will get a lot of posts that are not her work. The search function just pulls up anything where I mentioned Sam. Someday I should go back and assign labels so that we can just pull up her work. s.o.m.e.d.a.y.
And someday, I will share the emails from Sam telling us exactly how much the blog and envelope exchange contributed to her well-being in her last 18 months.
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That additional info that I stuck in - is from the CDC. The estimate of how many people have it is quite broad. As with many mysterious diseases/conditions - it's hard to know the numbers. IMHO - it has been hard to know people who suffer - and are told that *it is a mental issue.*
I'll stay off the soapbox. This post appeared because I did tell Sam that I would talk about it. Anyone who is interested can delve into it. There is a lot of info out there. The film is a good starting point.
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