Whitney’snye post from fb.

[bensmith]

Happy New Year from bed!
I’m super wasted on saline right now so I can’t really write much. But I do wish I could yell this in a slurred drunk voice at the top of my lungs:
"Happy Cure Year!"
"Out With The Old In With The Cure!"
That’s all I got. Maybe some of you can add your own drunken "New Years Slogans For The Cure" in the comments.
I am really hoping this will be the year we are all released from this nightmare. Things are all coming together for that to be a legitimate possibility. 2021 could be the year that gets recorded in the history books when an obscure, misunderstood illness not only became legitimized but millions of people came out of the woodwork all around the world proving to have whatever ME/CFS is called then and get cured all at once. And the history of our suffering finally saw the light of day as we all moved into the light ourselves and rejoined the world of human beings once again.”

Dont understand how we could even theoretically have a treatment or cure ths year. But smarter people than me say its possible. Guess im still in grinch mode.

Glad whit is being positive and looking good in the post. Heres to a good year davis family. And to all of us.

ps whit dm me with the deets

 

[Strawberry]

I’ll chime in with my Nuun cocktail. I really like this quote "Out With The Old In With The Cure!"

Gonna try to remember that one.

 

[nyanko_the_sane]

Wouldn't it be great to have a cure for the lot of us this year.

https://nypost.com/2021/01/02/how-a-scientist-finally-proved-chronic-fatigue-syndrome-is-real/

“I want to push the ME/CFS community forward,” Dafoe wrote to White recently. “I want to inspire people to keep fighting and not give up because I know a cure is coming soon.”

I'll drink to that...

 

[bensmith]

Me if we ever get a cure

https://tenor.com/view/trailer-park-boys-jim-lahey-drunk-big-time-getting-drunk-gif-16927245

 

[Reading_Steiner]

Unless its a top researcher saying that then take it with a pinch of salt, but yes its possible that once the fog of mystery thats pervaded for so long has been breached in some way ( which they seem to be verging upon )... the solution could be simple. It looks like we are seeing effectual treatments being deployed in some cases which is very encouraging but we should also not assume too much based on that. We should send positive energy and encouragement to all the researchers at this time.

 

[JES]

Ian Lipkin said it would take three to five years to cure ME/CFS... in December 2015. The time just literally ran out, so I'd like to hear from him again why his estimate didn't work out, what the biggest obstacles are and whether he still feels confident in making a new prediction.

I think Ron Davis didn't specify a time frame, I could be wrong about that, but I got the impression when his project really got going in 2016 that it wouldn't be a ten years wait and soon we are five years in now. Don't get me wrong, as bad as 2020 was, I'm hopeful 2021 could be the opposite, but the progress from 2015 to 2020 in the projects I've been following hasn't shown any signs we are close to a cure. A therapeutic that would at least help a subgroup like Abilify could hopefully be on the horizon, but then again, you can already get that off-label today.

 

[bensmith]

@JES i dont know nearly as much as most here but this is my strong impression as well. All things considered prgoress last 5 years extremely fast. But overall we are still lightyears away from cure or even general therapy. Just my impression.

and yeah if its abilify-like drug, we already have thst with, i think anyway, mixed results.

i guess to me it seems another 5 to 10 years at least. The first message didnt throw me. I get that postitity. But a second message in as many weeks has a bit honestly. I read ron saying we are close to a cure as well(in a ny post article i think). I guess i just dont understand the languages here. Like we are making great progress all things considered we have no funding or suction publicLly. But the verbage here is like, big splash positive.

Sorry if im being a downer maybe i shoild delete this post, i just dont want this to be hype obv, as we all do.

guess we just wait and see.

 

[Canned]

i guess to me it seems another 5 to 10 years at least.

I’d be ok with that.

But it would be nice to have some kind of drug/treatment a little earlier, so at least we don’t have to spend those 5-10y waiting in bed .

 

[bensmith]

@Canned amen to that. If something can get me of severe i dont need a cure ill be happy. They are almost the same thing for me.

 

[bensmith]

Asked whit yesterday about a timeline, said the breakthrough was major. Thought some of y’all would want to hear about it.

http://imgur.com/a/f9BQyOG

i wonder if it is that big that it might mean a longer time before we know, if it even pans out.

Feels too hopeful to get relief this year but i dunno whit continues to seem very excited. Confusing to me. Anyway just wanted to mention.

 

[Jessie 107]

@bensmith
Was this on Facebook yesterday?

 

[bensmith]

Yessum. @Jessie 107

 

[Jessie 107]

Yessum. @Jessie 107

Thankyou for posting on 😃

 

[gbells]

Judging from the inflammation and other improvements (mood, pain levels) I'm hoping to finish the Craysing immunotherapy treatment within three months so nine months total. I think we can get it cured. Hopefully VTose will catch up too.

 

[Strawberry]

It would definitely be lovely if science could hurry this up. So many MANY desperate people.

 

[bensmith]

@Strawberry it was heart breaking, on that same post two mothers had lost their daughters in the last month to suicide. One 32 other in 30s. It was so, so sad.

 

[bensmith]

http://imgur.com/U6VgcJZ

another reply. So looks like he is saying they made some breakthroughs, trying to turn it to medicine. Seems his most specific response. Again thiught yall would want to know.

seems the same place where we were : (.

hope they can get some r&d for meds soon.