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

[BrightCandle]

We actually had a discussion about the amino acids and a trial a while back, I took an analogue you could get on Amazon called Mutant, about 48g daily. My notes on its impact are there, it helped a little with fatigue but it wasn't a high impact. I don't anticipate the amino acid mix helping much, but that thread contains the details of the 6 amino acids used anyway and my experiment with Mutant which I still use occasionally.

I continue to hope that this continued media pressure on Long Covid and ME/CFS will get us somewhere and finally bring funding and researchers. So far Long Covid has with doctors received a very similar treatment to ME/CFS, that is most are getting anxiety diagnoses. But today there was finally 1 paper that was a health organisation that actually asked past covid positive patients if they had lasting symptoms (50% did), this I think is the first Long Covid study published by a health organisation and not a statistics body like the ONS. It was badly done its not a good paper or method and the parties involved were mostly biology informatics but its still a step that hasn't been taken in 2.5 years of Covid.

We have a very long way to go and so far media recognition has not changed government funding from the NIH or UK government nor the sad situation that 80-90% of all ME/CFS papers continue to be Psychology. The split between Long Covid and ME/CFS research remains very large and stark.

 

[Rufous McKinney]

Ah, lovely brain fog...that's where I read about 6 aminos...I forgot that fast.

I swore that wasn't even in the article I'd already read! I went back and re-read parts of the article three times..oh there is that part! Check. Missed it, Check

(I was remarkably motivated!)

(It seems when I read, I am doing a type of skimming/ my Evelyn Wood method- that served me well for decades..) (but not so well, these days)

 

[Rufous McKinney]

Maybe at least keep it for the trial if you can put a reminder somewhere to cancel before then..

we could do a Go Fund Me! (meanwhile, keep an eye open for any interesting Letters to the Editor should anyone respond)...

 

[Mary]

we could do a Go Fund Me!

Sure!

 

[lenora]

Good day everyone.....I'm not so sure that a cure will be found anytime soon. Thus, we'll have to settle for things that make it better. Very few illnesses have cures, they're just kept under control one way or the other.

Mary, it's interesting to read about your experience with some of the amino acids. I still take some, but certainly not all....and they're always coming up with new ones. This is true....things that have yet to be discovered and used by the body.

Many things are very complicated when you reach the research stage. There are so many subsets to be studied and unless your brain is functioning at 100%, it's now beyond my grasp. Things are complicated and balance within the body is so important. Having the scare I had with autoimmune encephalitis really brought that home in a very scary way.

COVID is apparently easier to diagnose, thus the reason it's profiled the way it is. We can only hope to hop on the coat tails of what they discover and trust that we can use the research material. It helps that the 200 symptoms of COVID and ME are the same. Good luck to us all. Yours, Lenora

 

[MonkeyMan]

Good day everyone.....I'm not so sure that a cure will be found anytime soon. Thus, we'll have to settle for things that make it better. Very few illnesses have cures, they're just kept under control one way or the other.

Who said anything about a cure?? Like probably most people on here, I just want something that effectively treats my symptoms.

 

[Marylib]

Here, found it online. You just have to keep paging sideways.

https://www.pressreader.com/usa/san-francisco-chronicle-late-edition/20221020/281517935042255

Thanks @Judee - I was wanting to read it but didn't know how!

 

[lenora]

OK @MonkeyMan.....I keep going back to what was considered "the beginning" in my day, at least. It just so happened to coincide with the AIDS outbreak, which definitely deserved attention, but no one, the NIH least of all, wanted another immune dysfunction problem added.

There are meds today, but a lot of people won't try them. I agree that some of the side-effects are not great, but many will generally wear off after a few weeks or even a month or two. I, myself, don't like many of them, but others have helped immensely.

I would like you to consider that in the very beginning we had nothing....no doctors that had even heard of this problem, no meds for the severe pain many of us suffered, no contacts, no organizations. We had to do it ourselves if it was to be done.

It was more than a full time job, especially when one considers trying to find doctors, neurosurgeons (I have other problems, also....and they weren't known). No computers, just a medical library. I also had children to raise....one day I'm a hustling mother and the next an invalid. My husband has been concerned and stood by me during this time. I did have a life, but it changed....and we realize that is a constant of life itself. My doctors were as helpful as they could be....and even helped with trying to figure this "new" illness out.

So researchers and doctors have tried to find meds for us. I spent years trying vitamins and herbs, etc., still believe in any help they may provide people, but in MY case it was necessary to move one step beyond and actually use the meds. In the beginning I was blown up and a caricature of myself...but you know, the pain, the everlasting pain finally stopped.

More work was done and newer drugs were found to help....but nothing is going to help everyone. I've since developed other major neurological and old age problems. I seem to be an eternal guinea pig. I've lost weight, gone down to below average. Things will continue to move forward....more and more is being found each day, but takes so much time to actually prove anything.

Newer machines used for diagnosis are coming along, doctors who will eventually learn from research and drugs that may/may not help.
More countries are doing research and it's being shared. Yes, it's slow, but to me it has gone at lightening speed since our early years. No, I doubt that a cure will ever be found for a very long time....but there is help and it's changing rapidly. Yours, Lenora