Hello
@max_yazhbin......No, I'm not after an argument especially on a public forum but I do believe that there is the word gratitude that should be used more often than it is.
You may be younger and better educated than I was (although I was an RN at a time when you really worked for it), but I chose not to stay in that field b/c of the long hrs. (which I thought caused my sleep problems! Not so, as it turned out). So my point is this: You're of a newer, younger generation and it's not just up to the researchers to get involved, but also you, yourself. Put forth an agenda, use it....try to make some sense of what we're facing. I would like you to understand that all those years ago we were faced with nothing....no help of any sort, including an understanding by us, our families (and my mother, etc., never knew how ill I was), so we had to start from nothing. All things considered, we didn't do too bad, and I'm proud of that.
I've been involved from the beginning with many groups, including the Syringomyelia group (which is an illness I have....it's under the name of ASAP), had surgery for it and then Arnold-Chiari Malformation. Understand that we had to find doctors, there were no lists of any sorts, things came by newsletter (when someone was well enough to do one) and by phone. Surgery for some of it was experimental and I had it, so I understand that side of life. It was a choice I had to make and I did.
Little by little phone calls included other countries & we even tried to help people in them. We did what we could for the time and place. And yes, researchers played a role in that and we were grateful that they took an interest in us b/c no one else would...and that's the gospel. Understand also that there were many kind doctors who tried to help, but just didn't have the knowledge. And yes, I'm also a victim of CFS/ME/FM....just as all of you are. My life as I knew it was taken away, my family's and without changing myself, I couldn't help change anything else. My thoughts only.
We're all different personalities....that's being human. But for heaven's sake, pass on a compliment when one is due and yes, people do deserve that. If nothing else, be grateful for the bed you're able to go to each night, the food you eat, and a roof of some sort over your head. Don't blame researchers for failing to find a cure for a complex problem.
You're quite correct in stating that I don't know the inside world of research work, everything is made up of a hierarchy of rules and superiority....especially government entities. I still say this is more money than we've seen before....can't we just be thankful for that?
As far as Ron Davis goes, may I point out that the man is long past retirement, he's now 80, but his knowledge is superior. He doesn't do this for the money, but out of love. I don't know this family personally, I have nothing to gain by standing up for him, but they're all dealing with an extremely difficult situation. I know how I feel at my age, my husband's not what he was at 77, but his mind is constantly working and he is always involved in volunteer work (and no, we're not religious....it's just something you do).
I also know there are plenty of other researchers at different universities and as far as what you do with your body, it's your business. If you feel that you know what you're doing, fine...run with it, I'm not stopping you. However I am concerned about people who aren't as knowledgeable about this entire business of trying this, that or the other....we're not talking small doses of something and I'm simply asking that they think about what they're doing. I know that for me it has taken all these years to learn about vitamins, supplements and herbs....studying, not just reading what someone says. I happen to like learning, so that's fine, but as you know...and will know even more as you get older, things are constantly changing. Enzymes are being discovered at a fast rate, there are so many unknowns.
I'm from the world of yesterday and readily admit to that. I'm not even familiar with some of the research being done today and no, my brain won't let me learn. But you are, and you should take your rightful place, be proud of what you know and use it for the good of the many people who need it. Sometimes things are simply dropped in our laps, responsibilities that we may not have looked for, but they can also be gifts. So we each had/have a role to play and no, it isn't just the researchers who "have" to find a cure for this illness. People need so much help along the way....especially hope.
I'm not against trying....indeed, that has been our role in life, hasn't it? You sound quite ill and I truly wish that you'll find something else that will help put you on the path of recovery. Believe it or not, Max, I do wish people well....everyone. It's bad enough that we suffer, let alone making life more difficult for each other.
No, I'm not upset with anything you wrote....I'm sure there is plenty of truth in it, also. But it's not now nor ever will be a perfect world, populated by perfect people and perfect answers. We're just grateful for improvements, and increments....whatever they may be. Anyone is welcome to disagree with me....I would expect nothing less. No, I don't now or have never spoken for everyone. Be well. Yours, Lenora.