There will never be a cure.

[Pearshaped]

Dear @Hopeful1976
I really understand.Its so frustrating. :-(
But please,think about it if you want to leave here.People like us need community.
Its not right that the patients need to fund their researchers.Its their job to get the right people(pharma)into the boat.

Please dont leave.<3

 

[Abrin]

As a side topic on this I just wanted to say how surprised I am at how much has even been discovered about ME/CFS in the last twenty years of my lifetime.

I am in my mid-forties with ME/CFS. My father also has ME/CFS and is in his 70s now so I've pretty much been following ME/CFS research since my teen years. First in desperate hope of helping him and then a desperate hope of helping myself as well.

I can remember when my father was in his 40s and there was seriously nothing much going on when it came to ME/CFS research or community support. The information and support I have access now through forums and blogs is truly mind-blowing when compared to back then.

So while I have my fingers crossed for a cure as much of the next person, I can also remember the complete lack of research and information my father had at my age and how lucky I am to have access to that now. It isn't much but it is still something.

 

[nyanko_the_sane]

Being in the dark most of the time it is easy to get depressed and feel hopeless. I try to get outside a few times a week. If the light is too bright, dark sunglasses really help. Ear plugs help if it is too loud outside. Be sure to take plenty of vitamin B-12 and D.

 

[YippeeKi YOW !!]

@Hopeful1976
Oh, hopeful, I really hope you dont leave this forum. There's info and support, and often more hope than you'd think, from members who have every reason to have given up on that entirely.

I agree with you .... it's tiresome to see so much money going into organizations, some of them very large, with nothing coming out of it but requests for more money, with no visible returns on moneys already donated. I'm not referencing PR with this ..... PR needs money to keep the lights on for us all, not to find a 'cure', as promised by so many others while their agile little hands are groping for your pocket.

In truth, I don't think this is a one-size-fits-all illness, so a universal cure is unlikely, much like cancer, another non-universal cure disease. Even the treatments for cancer have to be custom-blended, usually after running a genomic map.

Come back !!! Don't give up. You're exhausted, fatigued, battle weary, and depressed. It's not a good recipe for dealing with all this with no place to bitch, vent, and seek information and support.

Don't give up, don't give in, don't let this miserable little cutthroat pickpocket of an illness win by walling you off from one of the few places that offers both solace and comradeship, and information.

 

[YippeeKi YOW !!]

Certainly some have made it back from the brink, so there is hope for improvement. We just need to each find our own path and celebrate every success in our community.

I absolutely agree.

I was at that brink and almost went over the jagged cliff, but managed to drag my way back thru small, incremental, tiny little eeny steps that have gradually improved my life considerably.

There really is hope. Not in some great, blinding light kind of cure, but in the small steps that, taken as a whole, make an enormous difference in their combined strength of action.

 

[Davsey27]

My thoughts on this

 

[Rufous McKinney]

I am a bit concerned that the OMF and other organizations might be falling prey to a common problem: the focus is on raising money to raise more money, rather than actually trying to find an answer.

Recent announcements have made me feel much better about OMF's ongoing efforts, which remain impressive.

Things were a bit too quiet there for a while this winter, but now we have a clearer picture of a number of significant Proposals they have submitted, and YES FUNDING is needed to do THE RESEARCH.

It takes alot of time to prepare research proposals. And its a big gamble.

I remember bidding on a research study- we spent two solid months unpaid writing a proposal and figuring out every detail and then they award it to somebody else.

I wish we could do something more to- advocate for getting some of these projects funded.

 

[gbells]

I don't blame you for being tired chasing cures for ME. I've had a lot of counseling related to hopeless situations (and have ME myself). (psychology today has a referral page). I've learned that you can't count on a perfect life. The best we can do is to learn to be happy in the moment by learning appreciation, forgiveness, combatting depression, managing stress and maintaining social connections. Meditation like the Headspace app can help you learn to cope with stress better. It takes a lot of work and growth to do this but it does help improve the quality of one's life.

 

[Davsey27]

Maybe there won't be a cure anytime soon.It would still be nice to go from moderate to mild,Severe or Very Severe to Moderate.But even then there would have to be an acceptance of the outcome.Yes there is a part of me that would like to return to athletic self, if not possible mild and if this is not possible maintaining relatively the same.And if there is a possibility of decline open to that has well.It easier said than done the challenge for me is to accept all possible outcomes while desiring the best.This is not to say it easy to accept if one stays Severe.How much meaning do i attach to my physical and mental abilities?Something i often contend with.In a society where you are money,ts hard not succomb to social conditioning and easy at the same time

 

[Judee]

No it's not. I would change my name but I cannot!!

I've noticed that a couple people here have changed their user name so I think there is a way to do it if that would make you feel better.

 

[Likaloha]

Hate to be a bummer, and would LOVE to think that there might someday be a cure, but for me, my brain damage was so long ago and so encompassing I can't see that being fixed. Also I have stage 3 chronic kidney disease from the West Nile and many other things that I don't think can be reversed. I do HOPE for something to give me some energy! I know if I can find another pain doctor or if mine practices again that I can get some relief from pain but this energylessness, despite using Ritalin to help, is so unrelenting!!
like I said, sorry to be a bummer!!! Am having what mayo clinic calls a difficult day!

 

[Wishful]

One thing to keep in mind is that ME can be cured, and has been cured. The problems is, the full remissions are usually just temporary. However, for those hours of remission, I certainly felt cured. It can be done. We just need to figure out how to do it reliably, and make it last longer.

 

[jaybee00]

@Hopeful1976

There’s a good chance cyclophosphamide works as a treatment, especially if you have the HLA risk alleles.

https://forums.phoenixrising.me/thr...rekeland-fluge-mella-2020.80066/#post-2274525

 

[gbells]

I don't blame you for being tired chasing cures for ME. I've had a lot of counseling related to hopeless situations (and have ME myself). (psychology today has a referral page). I've learned that you can't count on a perfect life. The best we can do is to learn to be happy in the moment by learning appreciation, forgiveness, combatting depression, managing stress and maintaining social connections. Meditation like the Headspace app can help you learn to cope with stress better. It takes a lot of work and growth to do this but it does help improve the quality of one's life.

My preferred psychologists in this area are those who specialize in ACT, depression and chronically ill patients. The directory allows you to search by type of insurance. Medicare usually has the lowest copay if you can find someone who will take it.

 

[YippeeKi YOW !!]

I think we're all pretty much preaching to the choir here. @Hopeful1976 hasn't been seen since about 3 hours after she posted this thread.

Makes me sad, but if she finds that hse misses the threads here, she'll be back, and if she doesnt miss 'em, then she's made the right decision for herself.

 

[lenora]

I agree with yor stefanosstef, and hopeful 1976 must have gained some inisght into the problems he's having. He isn't alone, we're all despondent at times, it's just that sometimes depending upon the subject just listening to a complain isn't enough.

Who was on the antivirals for a year....and what was the outcome? I get the feeling they didn't help, which is a great sadness. All we can do is keep trying and excluding one thing after the other. Sooner or later we'll find something that helps more than one would expect. Research isn't a guaranteed thing but we all understand that, or I hope so. Yours, Lenora.