One dedicated person in the right place
Sunday March 14th 2021, 10:48 pm
Filed under: Life

If you know anybody with Chronic Fatigue Syndrome, this is huge: a well-respected Stanford bioresearcher (San Jose Mercury News link), one of those who worked on the Human Genome Project, has a previously world-traveling son with a severe CFS case and was appalled at the lack of knowledge, funding, or interest in it, not to mention the fact that many patients are told it’s all in their heads.

His son is fed via tubes, in bed, and unable to speak.

I have no doubt that the dad’s reputation and previous work helped him land the funding he did. The result is a test that so far has identified every one of the severe cases tested (two year old Stanford link–there were 50 more patients affirmed last year by it) and ruled out every healthy control volunteer. It is finally a verifiable, quantifiable thing.

And now he’s applying what he’s learned to studying covid long-hauler syndrome.

4 Comments so far
Leave a comment

I knew a woman 30 some years ago who had what we now know as CFS. What she went through for testing and benefit coverage and so on was simply unbelievable.

It takes the right person in the right place at the right time to break through the walls to make a difference.

Comment by Chris+S+in+Canada 03.15.21 @ 10:09 am

I really hope they figure out soon whether the test “works” on less-severe cases of CFS/ME – if it doesn’t work on cases that aren’t at the extreme of severe, it may accidentally become a new tool for dismissal of disability insurance cases and such.

(I have a friend with a condition semi-related to CFS/ME who has disability insurance, and they are real jerks; including the insurance doctor who told her that “it didn’t count if she didn’t try” while she was taking a cognitive function test to the best of her ability.)

Comment by KC 03.15.21 @ 10:10 am

Try and keep trying! I hope this is the breakthrough they need.

Comment by ccr in MA 03.15.21 @ 11:59 am

He was also in the documentary “Unrest.” It was just recently on PBS. Very good and heartbreaking.
On another completely different note, since you are always charming us with crazy zillow houses, have you looked at the instagram “Zillow gone wild”? It is quite the rabbit hole, but fun!

Comment by michele 03.16.21 @ 7:28 pm

Leave a comment
Line and paragraph breaks automatic, e-mail address never displayed, HTML allowed: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <s> <strike> <strong>