Poll: When do you brutally honestly think there will be a cure for ME?

[GlassCannonLife]

I was thinking about this the other day and thought I'd post a poll.

I've tried to remain optimistic the entire time I've been unwell but even with some research progress it seems like we're not really going anywhere soon.. So then I considered things like HIV/AIDS and how long it took them to get a reasonable solution, with masses of funding and public support.

Anyway, please choose what you believe will be the timeframe within which we will have proper diagnostic testing and access to a real treatment - that isn't having to self advocate and pursue millions of theories and leads yourself and convince doctors to try things etc lol.

 

[wabi-sabi]

Really, I've no idea. Just hoping it's within my lifetime.

 

[GlassCannonLife]

Really, I've no idea. Just hoping it's within my lifetime.

Yeah me too, ideally in the next few years of course.. Nobody really knows, I just wanted to get people's true gut feeling about it

 

[wabi-sabi]

Brutal honesty- I don't think there will be a cure anytime soon.

But, I think there will be working treatments. Like how there's still no cure for MS or Parkinson's, but there are real treatments that can help.

 

[Gingergrrl]

Anyway, please choose what you believe will be the timeframe within which we will have proper diagnostic testing and access to a real treatment

Are you asking in your poll about when we think there will be diagnostic testing & treatment or an actual "cure" (which you put in the thread title)? To me these are two completely different things.

 

[GlassCannonLife]

Are you asking in your poll about when we think there will be diagnostic testing & treatment or an actual "cure" (which you put in the thread title)? To me these are two completely different things.

An actual cure - sorry, diagnostic testing and treatment implied curative treatment. Similar to say when you have a bacterial infection and get antibiotics etc.

 

[Rvanson]

Really, I've no idea. Just hoping it's within my lifetime.

It won't be in my lifetime, but it okay as the world is in a mess, and dying doesn't scare me.

 

[Treeman]

I think the pandemic has helped as there is more research going on into post viral syndromes. But it's also disappointing to see the initial research doing similar things to me/ CFS research.

Aids/hiv research took about 7 years ( I think) to find treatments, and those treatments have improved over time to a point where people are in control of their life expectancy.

The reason for me/ CFS, long covid needs to be found first, once that's done treatments can be sought, which will be more difficult as I expect that treatments could effect other essential functions.

There's research on going to try to repurpose available drugs, but I don't hold out much hope, as many have been tried by the me/CfS community without wide reaching success.

The "something in the blood" theory is hopeful, mainly because several researchers have highlighted it. Could be a cytokine/auto antibody etc. That's still to be discovered.

I would like to think that within a few years the reason for the illness is established, as to finding successful treatments/a cure may take a little longer. A person I know who is a nurse used to work on a MS ward and they said the recommended approved drugs only help about 50% of patients. May be the same with ME/CFS when they get there.

However, someone could stumble across the problem tomorrow as is often the way. Let's hope that's the case.

 

[halcyon]

I think the pandemic has helped as there is more research going on into post viral syndromes. But it's also disappointing to see the initial research doing similar things to me/ CFS research.

This part has been really frustrating for me because it has shown that effective targeted antivirals (such as for say, enteroviruses, that may be the cause of many cases of ME) aren't science fiction, but are rather just a hostage of capitalistic market forces. With a large enough market, multiple SARS-CoV-2 antivirals are in development, but we are unlikely to ever really see effective or curative enterovirus antivirals because the market will just never be big enough to justify the investment.

I would like to think that within a few years the reason for the illness is established, as to finding successful treatments/a cure may take a little longer. A person I know who is a nurse used to work on a MS ward and they said the recommended approved drugs only help about 50% of patients. May be the same with ME/CFS when they get there.

I use MS to temper my optimism about ME a lot. Even with vastly larger research funding and a research animal model (though of arguable validity), it's still not curable and its treatment can still be pretty barbaric (such as with interferon beta). Last time I looked, it even had the same unsettled major etiological hypotheses as ME (autoimmune/autoinflammatory, viral, and metabolic).

 

[BrightCandle]

80 years of research going the wrong direction and things have only started to turn to acceptance that there is a real disease. The first fight is just getting it recognised as a condition and that is going to probably take a generation turn over of doctors, so 40 years more of being consistent about this being a disease and we aren't there yet. Then we are looking at pitiful funding and a complex disease, I doubt medical priorities change much even once its accepted due to terrible recognition and no diagnostics and no one interested in finishing the development of the bio markers we have. Covid hasn't done anything other than fund Covid so I don't anticipate future medical emergencies changing the situation magically either. Its gone 80 years now I don't see why it can't go another 80 at least before they start to properly fund research into it, with the right focus and maybe some future medical technology maybe its understood.

Its not happening in my lifetime anyway.

 

[GlassCannonLife]

@BrightCandle yeah I unfortunately agree with you.. You forgot to vote though!

 

[lyran]

A cure from big pharma? never. A treatment/drug that will reduce symptoms but you have to keep taking it? maybe in 20-30 years.

Well actually there already are medicines like LDN that will recude symptoms but they won't work for everyone. CFS/ME is a hetetogeneous desease so I'm not sure if it is possible to create a medicine that will benefit everyone.

Alternative treatments may be useful also. I have heard of people who have achieved remission with ozone therapy and with some other therapies.

 

[Cinders66]

A cure? Along time. Treatments to ease the suffering potentially much closer. But it’s impossible to predict because it’s dependent on research funding. If ME were getting the funding of long covid And /or was being studied as part of the new massive interest - Possibly even 5 years for treatments or less. If we are going to have to wait until after LC is researched to explore their findings and drug trials to see if they transfer, longer, if they don’t transfer and ME budgets/interest have remained low with all focus on LC, then even longer, but that is probably least likely. I think its funding rather than sheer complexity that’s held us back On understanding underlying mechanisms (although it is complex). However I guess the snag is even if we uncover the causes how easy will it be to modify , treat or reverse? We might have people who are much more advanced than others who the treatments that are found quickly, don’t work for.

re The reference to MS above, that is also a spectrum illness, different as it’s neurodegenerative with nerve damage, where there Have been 10+ treatments developed in the past few years but most are for the early stages. I don’t think severe ME is Getting anywhere near enough attention and don’t “assume” it will be anywhere as near easy to resolve as the new long covid but I see little advocacy for this sector who are being abandoned in a way those with advanced MS are not. By severe ME here I mean as a prolonged state, not a two months “at some point in our illness“.

i have not been able to vote because I simply don’t know what the next 5 years hold in terms of funding and advocacy to guess what is most likely

 

[SpiralOut]

I voted 11-25. That's not based on medical knowledge, of which I have little, but just on the (questionable?) assumption that medical advances will, like tech, tend to accelerate over the coming decades, with perhaps some game-changing 'level-up' advances along the way. I'm guessing that the doomier predictions are well-reasoned, but I'm betting that the non-linearity of progress will bring things somewhat closer.

 

[wabi-sabi]

Last time I looked, it even had the same unsettled major etiological hypotheses as ME (autoimmune/autoinflammatory, viral, and metabolic).

The cause has been discovered just this year! It's EBV infection. Don't know why it didn't get more press, since to me, it's the most exciting medical breakthrough in some time.

https://med.stanford.edu/news/all-news/2022/01/epstein-barr-virus-multiple-sclerosis.html

 

[Wishful]

It's tough to estimate. I do believe that a cure or very effective treatment is possible, since temporary remission is reasonably common. If the cure is found by funded research and pharmaceutical development, it could take decades. If someone stumbles across something that works reliably for a reasonable percentage of people (which is possible), then it could happen much sooner.

 

[Wishful]

Don't know why it didn't get more press, since to me, it's the most exciting medical breakthrough in some time.

I agree. That is pretty amazing. Even if ME doesn't involve that sort of autoimmunity, it still opens up new ways of thinking about what could cause the disease.

 

[Consul]

[...]

I use MS to temper my optimism about ME a lot. Even with vastly larger research funding and a research animal model (though of arguable validity), it's still not curable and its treatment can still be pretty barbaric (such as with interferon beta). Last time I looked, it even had the same unsettled major etiological hypotheses as ME (autoimmune/autoinflammatory, viral, and metabolic).

But there doesnt appear to be any obvious tissue damage in mecfs, and maybe 1/20 are able to somehow recover from the disease. In MS there is damage done and nobody is able to get out of it on their own, isnt that right? So i think there is room for more optimism in our case.

 

[BrightCandle]

I think if humanity put the effort in its likely very treatable if not curable and probably on a timescale of less than a decade. It might turn out to be an infection in which case it might be something solved for future generations with a vaccine and we remain the last people on the planet to have it and no treatment/cure is developed. But its the application of research to the topic I doubt, there is no sign of it even beginning to happen yet.

 

[Wishful]

So i think there is room for more optimism in our case.

Yes, the lack of actual damage is definitely grounds for optimism. My experience with multiple full-but-temporary remissions is that ME is a state that we can switch into and out of over a space of minutes, which implies that the core dysfunction is one of those rapid reactions (protein synthesis or some such thing).

I think it's quite possible that a PWME could go to a doctor, get a prescription, take a pill, and be back to full ME-free some minutes later.