When can we expect a cure?

[suevu]

I see so many smart people doing a lot of research, finding many things, but what we all really want and need is a cure, specially the severe patients, when do you think we can expect that to happen and what could it be?

When I say a cure I mean a permanent fix, not a chronic treatment (patch).

Realistic opinions please.

 

[Wishful]

It may not be a disease that is readily permanently cured. What if a cure requires genetic engineering, and the 'No genetic engineering on humans!!!' crowd gets in the way? My guess is that we might get a treatment that triggers full remission, but doesn't prevent retriggering into the ME state at the next cold or flu, thus needing occasional treatments. I'd be satisfied with that. Even a daily or weekly treatment would be better than nothing.

As for a time frame, I think it's possible within years. At the rate the research is going now, and the rapid improvements in tools and knowledge of the various systems in our bodies, I don't think finding the cause will take decades. Exactly how long depends on how subtle and hidden the core problem is, and whether any researchers are looking in that specific area. There are some researchers who I feel are following false trails (viruses, body rather than brain), but that's just my unprofessional guess. If a new drug is required, approval takes 12 years or so once discovered.

 

[kangaSue]

The way things are looking, I'd say about 2 weeks after the 12th of never.

 

[percyval577]

Just want to say that I have found a cure for myself (I was also fine enough for two years in between):


1. Due to two infections a pathway has gotten upregultated, obviously enough. Borrelia-Manganese and Herpes-Arginine have upregultated iNOS (Manganese + Arginine + LPS = Nitric Oxide).
Here I practise a diet which avoids high manganese foods. For the first three months I was often fine, after relapsing to some extent progress was slow but constant for years, difficult too, some symptons have been non-progredient worse.

2. In the brain there are metals. Chelating the metals (by citrate acid from lemons) and taking in the metals (by small amounts of chocolate) now accelerates a lot the improvement. Vitamin B12 is part of it (I guess for the required epigentic changes, and (orscavanging NO). So I drink a bit of cyanocobalamine when I take a bit of lemon juice-solution or (not as often) eating 9g of chocolate.
(I take Selenium extra.)

This second point I guess to be common, but without an initial influence it probably will not help much - or under detrimental circumstances this metal reconfiguration even will be detrimantal as well.
Maybe other impacts can be figured out and then reversed.

In terms of research: This metal thing (reconfiguration of them including places where nerve actions take place) they will not find out within the next ten years, little is known about these metals: Nickel (eg dopamine), Chromium (task? high in the caudatus), Zinc (pronounced in the thalamus), Aluminium (task? high in the spinal cord).
Also the idea a reversing an impact doesn´t look to me a welcome idea. I am happy for myself.

 

[frozenborderline]

At the current rate of research , I would bet money on it taking at least another thirty years. Of course, the rate of research can be speeded up with $$ investment, which can be made to happen with more aggressive protest actions.

 

[Moof]

My best guess is that it will be like other chronic diseases: we will find ways to relieve symptoms relatively soon, but a complete cure will be much more elusive. There are already meds that help certain subgroups (Mestinon, LDN, antivirals, MCAS treatments), and I'm sure there are others that can be repurposed; but until trials are carried out showing benefit to people with X or Y clinical profile, many of us will have no chance of accessing them.

 

[maybe some day]

I don't think there be a cure, but I'm hopeful for a treatment to reduce symptoms to get on with our lives. I'm thinking it's going to be a maintenance type of treatment just like HIV.

Expect something, hope for anything

 

[perrier]

The problem is that except for folks touched by this, there is NO urgency about this condition. There are many people who are severely ill, like young Whitney Dafoe, and T. Camezind, and thousands upon thousands of others who are very very sick and bedridden and tormented around the clock.

How long can these young people suffer more?

What is wrong with the NIH and rich folk? How can folks just walk past such a nightmare and then sleep at night? The teams looking at this aren't large enough, nor diverse enough. More brilliant minds are needed. They were there with AIDS, if you recall. This is actually an urgent situation, and doctors are not sounding the alarm, nor are social workers, nor others....here we are just talking to each other....

 

[Murph]

cure for everybody? never.
cure for some: 20 years.
good treatments for almost everybody: 25 years
treatments for some - we already have this (LDN, diet, florinef, beta blockers) and it will continue to get better over a five year horizon.

 

[maybe some day]

cure for everybody? never.
cure for some: 20 years.
good treatments for almost everybody: 25 years
treatments for some - we already have this (LDN, diet, florinef, beta blockers) and it will continue to get better over a five year horizon.

Sums it up well. Pretty much find some sort of contentment in life. We are closer than years past, but still far off on the horizon for real relief for everyone

 

[perrier]

Sums it up well. Pretty much find some sort of contentment in life. We are closer than years past, but still far off on the horizon for real relief for everyone

For those souls chained to their beds it is torture and there is no "contentment" whatsoever. I think this is the issue: many folks have some life, but there are those who have no life, who are really prisoners and actually worse than prisoners, because the latter have 'yard' time. If the doctors and researchers focus on the mild or moderate, things will never advance. But allowing folks to remain strapped to their bed is a cruelty beyond compare. You would think it would mobilise more people; but it doesn't.

 

[frozenborderline]

What is wrong with the NIH and rich folk? How can folks just walk past such a nightmare and then sleep at night?

Very carefully!! Haha, well, to be serious for a moment , no agency like NIH ever does something like fund a disease just because of the goodness of their heart. They need to be forced. People with severe ME are too weak to be able to force them to fund it. As far as rich people I just don’t think isolated instances of philanthropy are something to count on for something important

cure for everybody? never

As the resident pessimist re: funding and pace of research, I still question this as too pessimistic. Not sure of your reasoning though. Do you mean there are different subsets and thus there will never be a cure that works for everybody ? When many of us say cure I’m sure we’d settle for something analogous to cancer—different treatments for different subsets of what is overall a disease grouping w many similarities. I personally don’t think that this disease is so heterogeneous as to be incurable. But even if t was, why would it be impossible to cure the different subsets?

It’s far too pessimistic to say a cure is theoretically impossible. What is worth being pessimistic about is political will and funding toward this disease. This disease is totally curable, if we have 200$milkion a year, we will see results in years. At the current rate, 30 years

 

[frozenborderline]

. More brilliant minds are needed. They were there with AIDS, if you recall.

It wasn’t brilliant scientists that solved aids, but the activists that forced the govt agencies too act. We have nothing similar to ACT UP for pwME. There are some great advocates but there’s nothing as radical and aggressive and organized as ACT UP. People with this disease often seem apolitical about it and seem to think that science just needs to run its course, but this isn’t just a dry scientific puzzle, but a concrete politically situated problem that could be solved with enough labor and money.

 

[frozenborderline]

Sums it up well. Pretty much find some sort of contentment in life. We are closer than years past, but still far off on the horizon for real relief for everyone

I really don’t think severely ill patients can be contented in severe pain and limited life. This isn’t living

 

[frozenborderline]

We have some variation of this thread here every few months, I believe , and I think the most important thing to make people realize is that the current situation is impossibly bad with regard to funding and pace of research, but that it is nevertheless possible theoretically to change this. So the only answer is aggressive activism and this only possible for people who are not that sick (who may be the people who would most support this aggressive activism. ) as much as I like some of the work the big advocacy orgs have done, I would reiterate that there are no organizations doing anything close to the level of aggressive activism that aids orgs did and this is a huge problem.

 

[frozenborderline]

As far as the heterogeneity goes, I would say this. ME/CFS is in my opinion a metabolic response to a “stressor” that we haven’t totally identified yet. It’s possible that it’s a protective response. So would we consider the stressor to be the cause?

Let’s just take one example, that of a toxic exposure. Joey and billy live in the same house and it is a very intense “sick building “. Billy gradually becomes so sick he is bedridden. At the molecular level his body has responded to the massive oxidative stress from trichothecenes with a downregulation in energy production so that he doesn’t die. Joey does not become bedridden. He has some issues. High blood pressure, depression. But he doesn’t think that these issues are connected to the same thing that caused Billy’s issue. Eventually Joey dies of a heart attack or cancer and Billy is still alive, albeit he is not really living. He is still befridden twenty years later. Did they suffer from the same disease? Not exactly. Was Billy merely “hypersensitive” to the mold, like it was an allergy that he had and Joey didn’t? Not exactly, his body was protecting him from worse consequences.

Now it’s obvious I believe somewhat in the mold or environmental illness model of cfs but you could apply this example to many toxic exposures. Anyway, the heterogeneity disappears when you look at the fact that almost all severe patients have obvious problems in energy production, yet there are other aspects in which there is heterogeneity, that is explained by this model. I wouldn’t expect researchers to eventually find a single biomarker and I think they are looking for too much homogeneity Bc of the need to prove this disease is real. What I would consider more likely, if th ever get enough funding, is they will start to see a web of environmental factors and the different ways the body’s respond to them even within the relatively coherent category of cfs. Of cours downregulated energy production and issues with blood flow will be an issue in everyone, but beyond that there’s will be heterogeneities. Like one person will have high levels of x cytokines and other will have low, etc etc

 

[Wishful]

As far as the heterogeneity goes, I would say this. ME/CFS is in my opinion a metabolic response to a “stressor” that we haven’t totally identified yet. It’s possible that it’s a protective response. So would we consider the stressor to be the cause?

I think it's an immune response rather than a metabolic one, and the problem is a failure to return to normal function after the trigger has passed. It may involve a metabolic pathway within the immune system, and that pathway may be affected by the immune system. I agree that the stressor--or trigger--isn't the cause. The cause is a set of interlocked systems that becomes biased to fall into a different stable (and adaptive) state. Once triggered, we're stuck in that state. Well, in the early stages it's possible to switch back (temporary remission), but over time it seems to get easier to switch into the ME state and harder to switch back out.

Of cours downregulated energy production and issues with blood flow will be an issue in everyone, but beyond that there’s will be heterogeneities.

Even those are heterogenities. I don't have noticeably downregulated energy production, and others have reported the same. I'm not aware of blood flow issues, but I can't easily test my flow in capillaries or wherever. Cuts bleed just fine.

My guess is that downregulated energy production in the body is just another secondary symptom, though a common one. If, just for an example, the core problem is incorrect production rate of some protein in the microglial mitochondria, some people will be more strongly affected by whatever secondary (or further downstream) effects of that incorrect rate. My muscle mitochondria seem unaffected, but my cerebral kynurenine ratios seem strongly affected. Another apparently unique to me effect involves some pathway dependent on T2.

I think the research community should make an effort to figure out which symptoms are common to most of us. Perhaps there's a small set of symptoms or test abnormalities that shows up in 90+% of ME victims. Then they can focus the research on those. Since funding is limited, I'd like it to go towards a treatment for ME, rather than palliative treatments for some secondary of its secondary symptoms.

 

[Soon]

Just want to say that I have found a cure for myself (I was also fine enough for two years in between):
.

What do you mean by this part:
(I was also fine enough for two years in between):

 

[frozenborderline]

the problem is a failure to return to normal function after the trigger has passed.

I am not that sure the trigger has passed in most cases. This is something we’ll have to agree to disagree on because there’s not really hard evidence either way.

I don't have noticeably downregulated energy production, and others have reported the same. I'm not aware of blood flow issues, but I can't easily test my flow in capillaries or wherever. Cuts bleed just fine.

I don’t know how you can be sure you don’t have downregulated metabolism. Metabolism is hard to measure on standard tests. Did you have metabolomics run on your blood and intracellularly?
As far as perfusion and blood flow, I bleed just fine too, but I’m not sure this is a measure of global blood flow to tissues being normal. The blood flow issues that were measured by Systrom had to do with blood return to the heart. There are also issues w/ blood flow to the brain. Unless you had an fmri and an invasive cpet I’m not sure how you’d be fairly sure of this.

 

[Wishful]

I did say that I wasn't aware of problems with blood flow, or of downregulated energy production. I don't have the obvious problems that some PWME do.

I was thinking a bit more about the microglial mitochondrial DNA. I read that cerebral mtDNA is slightly different from DNA elsewhere in the body, which could explain why some people can have cerebral ME symptoms without symptoms in the rest of their body. What I just realized is that mtDNA comes inside the egg, so I'm not sure how cerebral mtDNA can differ. I'm guessing that some chemical in the brain (maybe only in the early stages?) alters expression of mtDNA (epignetic change?).

I came across one paper on mtDNA ( https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2795853/ ) which shows that mtDNA is more vulnerable to defects (mutation rate 10x nuclear DNA rate) particularly in the brain (high energy demand). As a result, there are many neurological diseases due to this problem. It seems quite reasonable for ME to be due to cerebral mtDNA mutation. I think that would fit with it commonly occurring after age 40.