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

[Thebirdman333]

I know two people did the interferon alpha and both had memory loss issues..one very serious.

Yeah that's why it isn't used anymore really, they have better combo therapies and according to a few sites it seems the cure rate is 90-95% and with virtually no side effects now.

But years ago that was a much different story.

 

[Thebirdman333]

There isn’t a cure for HIV and millions and decades have been pumped into that.

I would actually say there's a good chance at ifn lambda combined with a newer gen anti retroviral to cure HIV. We will probably see something this decade on that.

 

[Boba]

Getting back to the topic of this thread. I‘m 12 months in this misery and following all the research showed me that this is a lifelong curse. There are so many theories and not enough researchers or funding. Even if there would be sufficient funding, how can mankind solve a problem like this? Are we even able to cure diseases or is it just about managing symptoms? Lost hope for any solution to my problem.

 

[Thebirdman333]

Getting back to the topic of this thread. I‘m 12 months in this misery and following all the research showed me that this is a lifelong curse. There are so many theories and not enough researchers or funding. Even if there would be sufficient funding, how can mankind solve a problem like this? Are we even able to cure diseases or is it just about managing symptoms? Lost hope for any solution to my problem.

The problem is that they wouldn't likely even focus on the important theories, it would all be wasted on CoQ10 junk studies. I guarantee you if we took Chia, and some of the infection guys like prusty and had them work with other top researchers especially neuro and metabolic specifically, we would get answers if money weren't an obstacle. But until then people who have no idea about the disease just spend millions of supplement research that is useless. All of the money wasted on these studies add up.

 

[VisualEffect]

The problem is that they wouldn't likely even focus on the important theories, it would all be wasted on CoQ10 junk studies. I guarantee you if we took Chia, and some of the infection guys like prusty and had them work with other top researchers especially neuro and metabolic specifically, we would get answers if money weren't an obstacle. But until then people who have no idea about the disease just spend millions of supplement research that is useless. All of the money wasted on these studies add up.

I don't know if I have PEM or not, but I have orthostatic intolerance with other classic ME symptoms. I don't think viruses are involved in my case at all.

 

[Thebirdman333]

I don't know if I have PEM or not, but I have orthostatic intolerance with other classic ME symptoms. I don't think viruses are involved in my case at all.

No way to know unless you get the VP1 stain or ARUP Neutralization labs. I know a good amount with just OI, and no PEM. Most have viral problems. Not to say all, but a majority. If you don't think it's viral I would be looking at possible structural issues.

 

[SWAlexander]

As long as scientists do not break out of the standard research it can take at least another 10+ years.
What do I mean by standard research?
So far, I could not find any publication where biology has looked at the possibility of bacteria or microscopic pathogens related to ME/CFS and the extended symptoms.
It is not always a virus that causes devastating symptoms.

 

[VisualEffect]

No way to know unless you get the VP1 stain or ARUP Neutralization labs. I know a good amount with just OI, and no PEM. Most have viral problems. Not to say all, but a majority. If you don't think it's viral I would be looking at possible structural issues.

My intuition tells me that I have ANS injury. Something is broken in the brain (or worse, some critical neurons are are irreversibly dead). But I am hopeful and believe that researchers will find a cause and effective treatment or a cure soon.
I also think there are cases where viruses are responsible for ME. But if ANS is already broken, I don’t think eliminating viruses will correct dysautonomia.

 

[sometexan84]

My intuition tells me that I have ANS injury. Something is broken in the brain (or worse, some critical neurons are are irreversibly dead). But I am hopeful and believe that researchers will find a cause and effective treatment or a cure soon.
I also think there are cases where viruses are responsible for ME. But if ANS is already broken, I don’t think eliminating viruses will correct dysautonomia.

Hey, wanted chime in real quick.

I think it's important to remember the Enteric Nervous System in the gut. So like, for example, the myenteric plexus, it's part of the Enteric nervous system (ENS) in the gut, right? Well enterovirus has actually been found here.

For example, here's a study where Coxsackie B was found in neurons and glial cells of myenteric plexus
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3696939/

It's in this area where infected neurons and cells can have a crazy huge impact on parasympathetic activity... not just in your gut, but systemically. See https://en.wikipedia.org/wiki/Myenteric_plexus

(and anyone who's been here for a while is well aware of our parasympathetic dysfunction, especially while sleeping, with the HRV and all)

With this being the location of many important neurotransmitters, the location for many autonomic functions, and the direct and indirect impacts of this on the brain through gut-brain-axis (and microbiota-gut-brain-axis), there's a very solid chance one can have ANS (autonomic nervous system) damage... or at least dysfunction, as well as neuroinflammation as a secondary issue due to viral presence in the gut lining (where brain inflammation can also eff with CNS).

These cells are capable of being repaired. But they certainly can't be infected in order to function properly.

I'm not really sure how most talk about nervous system keeps getting tied to infection in the brain... but, it's all very misleading.

But in summary, 1) many of us have ANS issues (direct injury or dysfunction), 2) it's presumptuous to think it's in the brain, and 3) many studies have been published showing viruses can cause dysautonomia. (can share links if you need)

 

[sometexan84]

Also, I am shocked that 93.5% of you answered this Poll incorrectly!! (4-100+ years??)

--joking--

I'm astonished that so many of you actually believe this to be true. And I'm not super sad about it. Only because I know y'all are in for a pleasant surprise soon.

 

[Treeman]

I think the problem is a lack of funding. Billions are spent on frivolous things in society, when if compassion and empathy where cherished most illnesses would benefit.

They'll likely be no widespread cures until the billions needed are allocated. But, I do hope everyone with a chronic illness has the good fortune to have someone stumble across a significant treatment / cure today.

 

[Sophiedw]

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.

They just reversed MS in a small human trial using implanted EBV targeting immune cells. So cool.

 

[hapl808]

I think the problem is a lack of funding. Billions are spent on frivolous things in society, when if compassion and empathy where cherished most illnesses would benefit.

They made a big deal out of approving $1b to study Long Covid - a disease that has affected millions of Americans and tens of millions around the world. They still have done practically nothing with the money. If I recall, they've given $500m to an NYU led program that still can't figure out how to recruit anyone, but I bet they're all still receiving their fat salaries and bragging about their research and eventually they'll discover GET and CBT and declare the war over.

We didn't blink at sending $40b to Ukraine, who judging from USA foreign policy we'll likely be at war with in 10-20 years and marveling that we used to send them money.

 

[PatientlyWaiting]

Wow, highest category is 6-10 years. I admire the optimism, but didn't the poll say we should be "brutally honest" ? CFS traces its roots to the Epstein Barr virus outbreak in Incline Village Nevada in the 80's. That's 40+ years in the making here... and we aren't even close. If it's taken 40 years to get here, without even consensus on what causes it or how to treat it, what makes us think that we're just 10 more years away, e.g. 40/50 of the way there, e.g. 80% of the way ?

Also this is further complicated by the fact that not everyone presents in the same way or has the same outcome. It's probably a spectrum disease, as it ranges from impaired but functional to bed ridden, and also we might be fitting in more things under one umbrella than fit there. There might be different modalities or categories. The more recent focus on PEM has at least put in a non-vague diagnostic criteria that we didn't have before that distinguishes us. There's still so much we don't know about the immune system and the environmental factors that could be contributing here.

Ron Davis gives me hope but I also recognize that he's in his later years. I hope that his work carries on and that long covid brings awareness to our types of issues.

 

[Sophiedw]

Long covid will force funding into post viral illness on a scale never seen before. This is the time 🤞

 

[Booble]

I think there is too many variants for there to be one single CFS/ME cure per se.
At best I hope they will be able to separate the various factors causing each individual's case and be able to provide treatment to lessen the symptoms.

Long COVID treatment may be able to help those with other "long virus" type conditions.

For most of us though there is so much overlap with other conditions. For me I'm thinking POTS and ALLERGIES blended together with some very old viral mess.

 

[Rufous McKinney]

For most of us though there is so much overlap with other conditions. For me I'm thinking POTS and ALLERGIES blended together with some very old viral mess.

I agree, because I"m not convinced there is a "single point" thats the EUREKA moment, the source of all our Infirmity- thats both chicken and egg.

But fixes for components of the condition are most likely.

 

[Booble]

"Fixes for components of the condition" is what makes the most sense to me too.

 

[Zahr82]

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/

 

[PatientlyWaiting]

I agree, because I"m not convinced there is a "single point" thats the EUREKA moment, the source of all our Infirmity- thats both chicken and egg.

But fixes for components of the condition are most likely.

I agree.

Interesting about POTS though, isn't the "P" for pediatric? You think POTS could be another facet of ME/CFS?

Defining the problem and how many categories or types there are is an important step that maybe one day we'll answer. Like how sure are we that Whitney has the same thing the rest of us have, only way worse? What causes some to be completely bedridden like that , while others can lead lives of various degrees of function? So much individual variation in this, it's a nightmare to keep track of it as it is highly individual. Whether it's facets of the same illness or different illnesses is a question we'd all like answered.