ME/CFS and Whitney on front page of S.F. Chronicle 10/17/22 - (tweet by Janet DaFoe)

Mary

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I have trouble copying tweets (!) If anyone can post this so that the tweet shows up (front cover of SF Chronicle with picture of Whitney), please feel free to do so!

ETA: Actually the article is from 10/17/22, and it's not available to non-subscribers. However, the Chronicle has a 6-month subscription special for $0.99 right now, so I just subscribed to get access. After 6 months the rate goes to $4.99 a week, but you can cancel of course before then.
 
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lenora

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Wow! That's most impressive and I'm sure it makes for excellent reading. Good going Whitney, Janet and Ron!

I'll have to read about the post-polio ME in the 1930's.....I hadn't even heard of it until now.

Cute little granddaughter and niece you have there. Of course she was in her purple princess dress....at that age it's exactly what little girls like. Janet, you look pretty spiffy in your jeans! (I wear them too....when I'm dressed, that is.) Yours, Lenora
 

Judee

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lenora

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Hi @Judee.....I read the article (thank-you!) and I'm wondering if you know the six amino acids that Whitney is taking?

Seven years without talking....I didn't realize that his condition was that bad. I have to quit around 3-4:00 p.m., but seven years of truly having to be silent is a long time.

His entire family is admirable. Thanks again for letting us read the article. Yours, Lenora
 

Mary

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@lenora - the article mentions a company called Axcella which has come up with a proprietary blend of cheap amino acids to treat Long Covid. From their website, the blend includes: branched chain amino acids (leucine, isoleucine, valine), arginine, n-acetyl-cysteine, carnitine, serine and glutamine. I already take all of those except for serine and arginine. I did try arginine once with mixed results and then tried citrulline - supposed to be a vasodilator but it raised my BP quite high instead! So stopped it.

It bothers me a bit that they're going to come up with a no doubt very expensive "drug" which will cost pennies to make. These are all readily available to all of us. I've written about the benefits of BCAAs many times and they have helped many here, though have not got at the root cause of ME/CFS (if there is a root cause, which I think there must be). I've never tried serine - maybe will add it to my list.
 

Mary

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And also, thank you for posting the first info on that .... meant to mention this in my previous post, but .... brain.
Brain??? What are brains??? 😄. Now my "brain" is wandering hither and yon And actually going quite a bit off track I think so I'm going to rein it in right now before I have to report my own post! 🤯
 
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lenora

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Thanks @Mary....I'll pop back in tomorrow and will special note of the amino acids you found helpful. We're all so different and it gets to be confusing, doesn't it? Yours, Lenora
 

Judee

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It takes a village - thanks @Viala and @Judee for your help in properly posting the article! :nerd:
Oh, @Mary, I hope I didn't make you feel bad. When there's a paywall on things like this (or if a website only has the summary) I will try copying the article title and use it to search. Sometimes I find it that way and sometimes not. I just happened to this time. :)

Plus, you're the one who started this thread otherwise we wouldn't have known. I don't use Twitter except to read things people post here so thank you!!!!

Edit: Plus, you answered @lenora's question for me. I was pounding my brain wondering where I read about something with 6 aminos recently. :)
 
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I find it odd this was even included in the article...reference to Axcellia Health inventing some proprietary product...

Sort of trivializes the entire matter.

Oh- you just need an amino acid. (where is the write up for their supposedly study? I tried to find it)

What does Dr. Davis think about this cocktail? Is this something a patient like Whitney can even try to consume?
 

Judee

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It bothers me a bit that they're going to come up with a no doubt very expensive "drug" which will cost pennies to make. These are all readily available to all of us. I've written about the benefits of BCAAs many times and they have helped many here, though have not got at the root cause of ME/CFS (if there is a root cause, which I think there must be).
Yeah, that bothers me too and what @Rufous McKinney said, like the company found a way somehow to get a mention in Whitney's article. Plus, I am extremely doubtful that amino acids are gonna cure this disease...even if they are somehow reformulated and marketed with a hefty price tag.

but the article does mention Axcella and its product for Long Covid which contains several amino acids.
Ah, lovely brain fog...that's where I read about 6 aminos...I forgot that fast.

No worries! I'm glad you posted the link, makes it easier to access the article rather than subscribing to a publication (for $0.99) when one doesn't really want it! :rolleyes: (I do have to unsubscribe now! :confused: )
Maybe at least keep it for the trial if you can put a reminder somewhere to cancel before then...just in case they come out with another article that we cannot find elsewhere during that time. :)
 
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