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

[Rufous McKinney]

Yes, quite a few of us have experienced temporary remissions, where we abruptly switch from full ME to full health (and then back again ).

could be true for some, but hard to imagine in others.

My gut has not worked correctly since I was a child. Thats not "going to get better"...

I can better manage it. I can take things which make it more tolerable.

lots of body parts are in fact missing or compromised. They are not going to decide to work again.

I doubt my brain will be back up in the part of my skull its supposed to occupy.

I do't hear much any more from the one's who got their necks fixed?

Whats happened to them?

 

[Long Haul Mono]

I do't hear much any more from the one's who got their necks fixed?
Whats happened to them?

(My assumption) Some people who found a resolution, whether that be a cure or an effective management strategy may be unlikely to stick around (in this forum), however, considering how many times I've heard the "ME-to-fixed-to-ME" cycle I'm likely to still be here after finding an effective management strategy.

I feel I've made some progress with this ME doctor I'm seeing ATM, but I'm not going to be too quick to call my situation resolved (whenever/if it comes to a resolution). Hopefully, I can eventually share a success story.

 

[Hipsman]

In US it's going to be no sooner then 2035 I think, unless you count Dr Igor Markov's CBIS treatment, then affiliate a clinic in US might be avaliable around 2023-2025...

 

[GlassCannonLife]

In US it's going to be no sooner then 2035 I think, unless you count Dr Igor Markov's CBIS treatment, then affiliate a clinic in US might be avaliable around 2023-2025...

Man I really hope that man struck gold with the treatment! Would be amazing.

Nobel prize level maybe? Not sure but seems to me like it'd be close

 

[JES]

I reckon Ian Lipkin predicted 3-5 years in 2015. Ron Davis I think spoke about 10 years in 2016. Just shows how difficult these kind of predictions are to make. One recurring problem I often see is one cure being hyped (or perhaps hyped is a bit unfair term, as there has been genuine interest and optimism around certain "cures" proposed over the years), but then that hype seems to die down. Here are some on top of my head:

2000s: Various antibiotic courses (stemming mainly from Lyme treatment centers, not of much help in ME/CFS)
2005-: Chia / enterovirus (still some interest, but less than it used to be I reckon)
2005-2010: Staph vaccine (not available anymore)
2007: Lerner / herpesvirus (large dose antiherpesvirals, success turned out to be limited)
2007: LDN (some hype in my country back in that time, but obviously recognized now as not a cure)
2010: XMRV (obviously wrong)
2011: Rituximab (perhaps the most prominent, larger phase 3 study gave a negative result)
2011: Methylation (lots discussed, helped only a few)
2015-: Microbiome / FMT (still some interest, but lacking practical treatments)
2017-: DNRS / LP / brain reprogramming (unfortunately still going)
2018-: Metabolic trap (still to be fully demonstrated, no treatments)
2018: Craniocervical instability (CCI, somehow this died down almost completely in two years after Jen Brea stopped posting in public forums/groups)
2020-: Long COVID (treatments in development, too early to tell what use in ME/CFS)
2020: Abilify (looked very promising at first, effect seems to be lost over time)
2021: Autovaccines (TBD)
...

Might have forgot a few, but the trend is that we discover new hypotheses/treatments that look promising, but over time it doesn't pan out for various reasons and the interest dies down.

 

[VisualEffect]

There is some book on dysautonomia, I don’t remember it’s name, but it was written for patients. Author said something like: “expecting cures for dysautonomias is unrealistic”. I don’t remember the explanation why it’s unrealistic. It’s very sad if it’s impossible to recover from ANS injury. Like loosing a limb, it won’t grow back.

 

[crowtor]

I don't think personalized medicine will be here anytime soon, maybe in 50 years +

Having said that we have a powerful new tool in the cabinet. AI. I think the best approach as of now is to have jim keller build a supercomputer from his tenstorrent venture. Put the whole big data of severe patients as input and control as output, define the pathways and how they interact with each other and then just let it run.

I'm sure it would even find gaps in the data about pathways we didn't know even existed. programming the data would probably take a few years but once its done its just a matter of crunching numbers.

Jim is a guy that's really inspired about novelties like this, I'm sure he'd be on board with such a project.

 

[RyeRyeBread]

My temporary remissions seemed like snapping from the ME state to fully healthy again (and then back to full ME again ) over a period of minutes rather than hours. That's not long-term damage somehow reversing; that's more likely some cellular functions changing their rate of action.

I have yet to experience any form of remission like this, just unwaivering illness with (PEM/crashes/recovery) periods of worsening then back to baseline - so perhaps a full cure could be possible for certain types of this illness My hope is higher for those who have experienced some forms of remission, since that proves in a way that the body can return to a "normal" state (?)
I'm still early on in my illness, but if I never were to experience any form of remission, I'd think it less likely to find a "complete" cure for that, being that my body would have been in a constant state of whatever-the-hell-this-is and never was able to self-stabilize (?)
We'll figure it all out eventually, that I am sure of

 

[Wishful]

Put the whole big data of severe patients as input and control as output, define the pathways and how they interact with each other and then just let it run.

Alas, I get the impression that we only understand a tiny percentage of the pathways and interactions. There seem to be new discoveries every day that seem to be really important processes in how the body works. In the past few years there have been entire organs that were previously unknown (okay, the lymph network in the brain had been discovered before, but no one believed it then). We just don't know enough yet for that approach to succeed. Garbage in, garbage out.

 

[Wishful]

I have yet to experience any form of remission like this, just unwaivering illness with (PEM/crashes/recovery) periods of worsening then back to baseline - so perhaps a full cure could be possible for certain types of this illness

It might not be that your ME mechanism is impossible to switch state. It might just be that you have some comorbid condition that 'keeps holding the switch in the ME position'. Chronic immune system activation might do that. I had several temporary remissions at the start, and then it was longer and longer between them. I expect that it would be harder for me to switch state now, but I don't think it's become impossible.

The other bright note about my temporary remissions is that three completely different things triggered them, plus several other remissions that I didn't identify a trigger for. Prednisone, cumin, and T2 all triggered several temporary remissions for me. That implies multiple possible pathways for fixing ME.

Still optimistic about a treatment/cure.

 

[Rufous McKinney]

2018: Craniocervical instability (CCI, somehow this died down almost completely in two years after Jen Brea stopped posting in public forums/groups)

I"m still confused over the results of the neck procedures and whether that in fact did reverse the ME symptoms.

 

[Rufous McKinney]

but the trend is that we discover new hypotheses/treatments

could also include aphaeresis: Im still hoping someting might pan out for us there, filtering something out of our plasma or blood that might help us....someday.

 

[Wishful]

could be true for some, but hard to imagine in others.

Well, I meant full non-ME health levels, which might be lower than ideal health. Curing someone of ME won't cure unrelated medical problem, and it won't reverse deconditioning. Still, getting rid of the ME symptoms would probably make me feel like sproinging around like Tigger, just from relief.

 

[GlassCannonLife]

I reckon Ian Lipkin predicted 3-5 years in 2015. Ron Davis I think spoke about 10 years in 2016. Just shows how difficult these kind of predictions are to make. One recurring problem I often see is one cure being hyped (or perhaps hyped is a bit unfair term, as there has been genuine interest and optimism around certain "cures" proposed over the years), but then that hype seems to die down. Here are some on top of my head:

2000s: Various antibiotic courses (stemming mainly from Lyme treatment centers, not of much help in ME/CFS)
2005-: Chia / enterovirus (still some interest, but less than it used to be I reckon)
2005-2010: Staph vaccine (not available anymore)
2007: Lerner / herpesvirus (large dose antiherpesvirals, success turned out to be limited)
2007: LDN (some hype in my country back in that time, but obviously recognized now as not a cure)
2010: XMRV (obviously wrong)
2011: Rituximab (perhaps the most prominent, larger phase 3 study gave a negative result)
2011: Methylation (lots discussed, helped only a few)
2015-: Microbiome / FMT (still some interest, but lacking practical treatments)
2017-: DNRS / LP / brain reprogramming (unfortunately still going)
2018-: Metabolic trap (still to be fully demonstrated, no treatments)
2018: Craniocervical instability (CCI, somehow this died down almost completely in two years after Jen Brea stopped posting in public forums/groups)
2020-: Long COVID (treatments in development, too early to tell what use in ME/CFS)
2020: Abilify (looked very promising at first, effect seems to be lost over time)
2021: Autovaccines (TBD)
...

Might have forgot a few, but the trend is that we discover new hypotheses/treatments that look promising, but over time it doesn't pan out for various reasons and the interest dies down.

Nice summary, thank you

 

[Rufous McKinney]

2005-: Chia / enterovirus (still some interest, but less than it used to be I reckon)

in the throes of yet another near death viral reactivation in my stomach last month, I told me husband- ...why doesn't he call this Dr. Chia in San Diego, and ask him if he can kill the virus in your wife's stomach.

so why did my husband don't call this doctor Chia?

 

[vision blue]

When im being optimistic i think in 50 years it will be more controllable when individual metabolomics is common and when viral screens for all viruses is commonplace and maybe the universal vaccine will be preventstive for next generation. And in 100 years, everyone testing their rna (not dna) may prove useful. A return to individualized medicine and easier routine testing of more individualized auto antibodies, and more mast cell mediators will help as well as more common anti aging treatments

Of course in 50 years the world may have more to deal with than keeping a minority from being suffering zombies who die young

And when im not optimistic...

 

[JES]

in the throes of yet another near death viral reactivation in my stomach last month, I told me husband- ...why doesn't he call this Dr. Chia in San Diego, and ask him if he can kill the virus in your wife's stomach.

so why did my husband don't call this doctor Chia?

I reckon Chia has a waiting list of years (I could be wrong).

Anyway, Chia's main treatment is Equilibrant, of which the main ingredient is oxymatrine. To make it short, just plain oxymatrine from a herbal shop will probably work as well.

I reckon Chia also uses antiretrovirals like lamivudine, but would need prescription from him unless you somehow convince a doctor to prescribe against HIV prevention.

There are also some anti-enterovirals in development and some possibly repurposed drugs like fluoxetine, but most don't seem very effective unfortunately.

 

[crowtor]

I just hope this cure/treatment isn't in the same business as fusion reactors. 20 years away every 20 years.

 

[Thebirdman333]

Okay, so here is my take. The treatment/cure already exists for a large majority. Getting it approved and through the channels the "right and legal way" is going to take much, much longer. But if you have persistent infection, IFN lambda is a thing, though extremely hard to access. That being said we are doing a group buy on it and it is CLOSING VERY SOON!

So if you want to join PLEASE DM ME OR @sometexan84 ASAP!


So to answer this question, when will mecfs be cured?

Well, with IFN-L I'm fairly confident this will cure most of us, and we get it in a few weeks. So this year?


But when will this treatment be officially applied to long covid? 3 years.

MECFS? 5-10 years.


See also:

https://forums.phoenixrising.me/threads/we-can-get-peginterferon-lambda-now.85475/

 

[Rufous McKinney]

That being said we are doing a group buy on it and it is CLOSING VERY SOON!

would a follow up opportunity develop later, after we hear of your great success and that of the other members?