Cured their ME/CFS, and went on to live their lives (35 Stories)

[Shen]

The cases you selected include people with a lot of problems besides ME/CFS or they didn't have ME/CFS in the first place. Just a few of the nany "cures" mentioned include:

1. Daosin (histame in the US)
2. Fecal transplant
3. Rest
4. Not doing intense exercise
5. mold/chemical avoidance
6. DNRS with partial avoidance including a 'clean' home that I still live in
7. antidepressants
8. psychedelics.

If these indeed cured these patients, they had different problems to begin with. In fact, these are just a few of the many problems these patients admit to having, aside from ME/CFS:

• Diabetes – one or more kinds
• Adrenal fatigue/insufficiency
• Mitochondrial/ATP disorders
• Kidney failure
• Liver disease/disorders
• Hyper or hypothyroidism
• Candidiasis infections/disorders
• Gluten allergy
• Leaky gut syndrome
• Lack of blood/oxygen to the brain – orthostatic intolerance – exercise induced arterial hypoxemia
• Lack of salt – hyponatremia
• Lack of other minerals – Electrolyte deficiency/imbalance, hypokalemia, hypomagnesia, hypocalcemia, etc.
• Anemia/low iron/low hemoglobin

The research has shown there are subsets if patients with different characteristics and triggered who happen to share a core set of symptoms.

I believe most if us have a variety of other quirks or conditions or genetics or environmental factors that makes us each unique. Unfortunately, this makes it difficult to treat.

However, cancer is not one disease, either, it's a bunch of different diseases, driven by metabolic factors, and somehow, methods have been developed to fight most cancers (with varying success). But, it's important to figure out what the characteristics are if the individual's illness and treat that to have success, instead of cookie cutter copying some treatment protocol and applying it to all. That seems to be a recipe for disaster, in many cases.

Likely so.

I'm not arguing it's not possible to get better now. I believe it is quite possible to get a lot better. The key is to individualize treatment, just as Ron Tompkins said above. it's figuring out the individual genetics, environmental factors, comorbidities, etc., and treating the patient with a comprehensive, phased protocol unique to that patient's circumstances.

It's not just inflammation, but one needs to repair the damage the inflammation has done, and replenish the resources that have been depleted by the damaging process. And then gradually rehabilitating the body toward normal very gently over time. Although, you're right, that figuring out what's causing inflammation in the first place and treating that is one of the critical keys to success.

Yeah. But I do believe the body will heal even in the most severe cases without the switch of ME being turn on. There have been severe cases that went to remission. That's absolutely insane considering the state before of those people.

This has also happened in severe Inmune diseases wich can share sympthoms with ME. Full Remission from extremely sick people.

After all. The body is extremely resilient. It is just trapped on the state of ME. Waiting to be turned off so it can return to normal. We just don't have any idea (yet) of how to do it.

 

[Learner1]

Yeah. But I do believe the body will heal even in the most severe cases without the switch of ME being turn on. There have been severe cases that went to remission. That's absolutely insane considering the state before of those people.

This has also happened in severe Inmune diseases wich can share sympthoms with ME. Full Remission from extremely sick people.

After all. The body is extremely resilient. It is just trapped on the state of ME. Waiting to be turned off so it can return to normal. We just don't have any idea (yet) of how to do it.

I can tell you that it's taken a great deal of individualized medicine and a variety of treatments to improve. There's no switch. Even with a trigger that flips a switch, there's a cascade of effects, one leading to another, that leads to a very messy situation. And untangling it bit by bit is really the only way to get better today. Maybe 40 years from now someone will have figured out a better solution, but until then it's individualized medicine with a lot of little details. I sure wish it were otherwise.

 

[Learner1]

I disagree with that. The temporary remissions show that it doesn't take much time to switch from full ME to full health (and back again, sadly). It's not long term damage, and not depletion of resources; it's something switching state. Maybe it's a missing protein, or some portion of DNA or RNA that is blocked by some molecule, or needs a certain molecule to function properly, and that specific molecule is quick to reach the target after being absorbed (sublingual works, and so does swallowing), and is quickly depleted again. Whatever it is, it is fast-acting, which I think requires the volume of action to be fairly small (not working on every cell in the body, but maybe a small portion of the brain).

Treatments that work slowly and gradually, are probably working on downstream problems.

Indeed. There are a lot of downstream problems from an initial trigger. There's no switch back and forth. Look at Prusty's work, showing that viruses can cause mitochondrial fragmentation, and disruption of mitochondria can lead to a whole host of problems. There's no easy switch to fix it. Yes there are things that give can give temporary relief, but until the underlying problems are addressed, it would be difficult, if not impossible, to be cured. At least for most of us.

 

[Wishful]

And untangling it bit by bit is really the only way to get better today.

Again, I disagree. I see your slow, complex treatment technique as countering individual downstream symptoms, without touching the underlying cause. Okay, I agree that today that's pretty much the only option, since we don't know where the underlying cause is.

An analogy might be a car engine that is misfiring, due to a problem with the ignition timing (which you aren't aware of). You can try all sorts of variation on fuel additives and air cleaners and cooling system changes, which might provide some improvements in engine performance despite the improper timing, but the engine still won't run properly under all conditions. Removing the tiny piece of debris messing up the timing mechanism would fix all the problems (after you got rid of the additives and alterations you made).

I really do believe that if the researchers came up with a pill to treat the core dysfunction of ME, you could take that and feel fully healthy again within hours. You might not have full fitness, and yes, there might be a period while your body readjusts to the new conditions, but it wouldn't need a slow untangling and lots of individualized supplements or whatever.

 

[ljimbo423]

I really do believe that if the researchers came up with a pill to treat the core dysfunction of ME, you could take that and feel fully healthy again within hours. You might not have full fitness, and yes, there might be a period while your body readjusts to the new conditions, but it wouldn't need a slow untangling and lots of individualized supplements or whatever.

I have the same view. I have felt this intuitively for years. But after 13 years of research I'm more convinced than ever. I think there is one primary root cause and everything else is downstream from that cause.

The cause, once effectively treated, will remove all the other downstream effects and restore health. The billion dollar question is what is that root cause? Once researchers find that, solutions I think will come fast.

 

[JES]

I can tell you that it's taken a great deal of individualized medicine and a variety of treatments to improve. There's no switch. Even with a trigger that flips a switch, there's a cascade of effects, one leading to another, that leads to a very messy situation. And untangling it bit by bit is really the only way to get better today. Maybe 40 years from now someone will have figured out a better solution, but until then it's individualized medicine with a lot of little details. I sure wish it were otherwise.

There is a switch... sometimes. Ron Davis described in one of his talks an ex-student of his that had fallen ill with ME/CFS and had to quit her studies. Several years later, Ron saw the girl back at the campus and of course was very interested to hear what had helped her to recover. According to what Davis paraphrased, she had strictly focused on resting and not exceeding her exercise tolerance limit, that's it. After around a year or two, she just started to feel better and gain strength, all with just being strict about resting.

To be clear, I don't think this sort of regime would help me as my problems were never primarily about exercise intolerance. But there are other possibilities, another recent example is Ron Davis' son, who correct me if I'm wrong, can now type on his computer and write Facebook posts. This is all very impressive considering he spent the last seven years or so bedbound in his room unable to do anything and again, I don't have all the details, but it seems his improvement came primarily from low-dose Abilify. So you can stumble upon these cures, the problem is there isn't one standard way to get there and I'd imagine Abilify would probably not work for all or maybe not even for a significant part of us.

 

[sometexan84]

I really do believe that if the researchers came up with a pill to treat the core dysfunction of ME, you could take that and feel fully healthy again within hours. You might not have full fitness, and yes, there might be a period while your body readjusts to the new conditions, but it wouldn't need a slow untangling and lots of individualized supplements or whatever.

This sounds about on par with the possibility of curing cancer w/ a single pill. Very unlikely that we'll see anything like this any time soon.

How would a single pill fix this in just hours?

Solve ME/CFS Initiative

 

[sb4]

@sometexan84 Where did you get the above picture from?

 

[Learner1]

I really do believe that if the researchers came up with a pill to treat the core dysfunction of ME, you could take that and feel fully healthy again within hours. You might not have full fitness, and yes, there might be a period while your body readjusts to the new conditions, but it wouldn't need a slow untangling and lots of individualized supplements or whatever.

Well, have fun waiting 30 years for that. I don't want to be cured when I'm in my 80s....

And, there is collateral damage along the way that causes a growing snowball of problems. One example is chronic EBV or HHV6. These can trigger autoimmunity. Just because you beat back the virus, the autoimmune process doesn't go away. And the both the virus and the autoimmune process cause damage to mitochondria and tissues and deplete resources. So, to improve, the destruction needs to stop and resources need to be replenished. Autoimmune POTS doesn't go away with a pill. Immunodeficiciency doesn't go away with a pill. Herpes viruses don't go away they're always there. Autoimmune mast cell reactions don't go away. And then there are the folks with structural issues, like CCI, tethered cord and EDS.

I have the same view. I have felt this intuitively for years. But after 13 years of research I'm more convinced than ever. I think there is one primary root cause and everything else is downstream from that cause.

The cause, once effectively treated, will remove all the other downstream effects and restore health

Carboplatin and paclitaxel chenotherapy drugs triggered my ME/CFS. I realize this is not typical, but I ended up with typical ME/CFS. What pill effectively treats this? I spent 9 months chelating platinum, but my mitos still seem to be damaged, my microbiome still suffers, I still have immunodeficiciency, and got 2 kinds of autoimmunity on top of it. And my endocrine system doesn't work properly and I have a lot of oxidative stress. All of this was made worse by genetic iron overload, which caused Fenton reactions and hydroxyl radicals and caused further damage. And a genetic tendency to low BH4 which causes peroxynitrite damage to mitochondria.

Exactly what root cause needs fixing? And if that's fixed, all of this will go away? From what I've seen, others may not have had my environmental or genetic factors, but they have their own unique constellation of factors. We are not generic widgets. We share clinical symptoms, but each of us is unique. Unfortunately.

This sounds about on par with the possibility of curing cancer w/ a single pill. Very unlikely that we'll see anything like this any time soon.

How would a single pill fix this in just hours?

Agreed.

 

[Wishful]

How would a single pill fix this in just hours?

That's hardly a proven theory for ME. It could be as simple as a latent viral infection in a few cells in the hypothalamus, or some sort of feedback loop involving membranes of micro-vesicles, or some other point failure. That's the sort of problem that can switch state quickly. The fact is that ME can switch state quickly, so any theory that doesn't allow that is most likely wrong.

 

[Wishful]

Exactly what root cause needs fixing? And if that's fixed, all of this will go away?

Okay, returning to 100% health actually means: "100% of whatever level of health you would have without ME". If you've got platinum poisoning and maybe a brain tumour and gunshot wounds, a 'cure ME in minutes' pill isn't going to make you fit for running a marathon anytime soon. It would probably reduce your misery level significantly though, and maybe allow faster recovery from other health problems.

 

[ljimbo423]

Exactly what root cause needs fixing?

After many years of research I have answered that question for myself. I'm convinced that for most of us it's a dysbiotic microbiome and a leaky gut. As you know though, the microbiome is often extremely difficult to re-balance once it's become far enough out of balance.

Others will need to find their own path to the truth. If someone told me 30 years ago, repeatedly what they knew the cause of my ME/CFS was, I would still not have believed them.

I needed to do all the research I did and spend years treating different things, like adrenal fatigue, mitochondrial dysfunction, possible viruses, etc. until I finally learned what the root cause of my ME/CFS was and is.

If auto-immunity was triggered by the root cause of ME/CFS, that could make it much more difficult to reverse the symptoms caused by the auto-immunity.

From what I've seen, others may not have had my environmental or genetic factors, but they have their own unique constellation of factors. We are not generic widgets. We share clinical symptoms, but each of us is unique.

I think each of us are unique in our biochemistry as well as our genetics and epigenetics. This explains in part why each of us don't have the exact same cytokine profiles, symptoms etc.

ME/CFS researcher Mady Hornig has a video out explaining how the different bacterial makeups of those of us with IBS and those of us without it, causes different cytokine profiles from different bacteria in the gut, stimulating different immune cells. This causes different cytokine profiles in patients.

She also makes the connection of this immune system stimulation causing mitochondrial dysfunction, affecting the vagus nerve and affecting the brain, as well other affects it has on the body. Together causing ME/CFS.

I'm not trying to convince anybody of anything. I can't. This is just my opinion, based on my experience.

 

[Wishful]

For the question of "how could ME be cured rapidly", I posted this thread: https://forums.phoenixrising.me/threads/antivitamins.81132/

It's by no means an answer to ME, but it does show that very small changes can have major effects on an organism. One molecule in the complex metabolic pathways in a cell can fail to do its job correctly, and have all sorts of disruptive effects downstream. In the article, it's just one atom of a B1 molecule changed. Other possibilities are misfolding or rotation of bonds, or other molecules temporarily bonding in the wrong spots. One point failure in one type of molecule in a tiny part of the body could potentially cause all the immune system problems and gut dysfunctions and ANS dysfunction observed...and it would be hard to find and hard to find a treatment for, which fits ME. Could something like prednisone or 3-5 diiodothyronine temporarily fix that dysfunction resulting in temporary remission in at least some people? Seems theoretically possible.

 

[sometexan84]

@sometexan84 Where did you get the above picture from?

I do not remember.

 

[sometexan84]

These can trigger autoimmunity. Just because you beat back the virus, the autoimmune process doesn't go away.

This isn't always the case though. If EBV causes Hashimoto and hypothyroidism, and you happen to clear the virus, you can cease the autoimmune attack. Then the thyroid can regenerate if it's not too late. And you can help clear out TPO antibodies w/ Selenium and other things. It's a lot of "IFs"... but autoimmune recoveries like this are possible, there's plenty of documentation on this type of scenario online.

Same w/ psoriasis. It depends on what kind you have, but autoimmune psoriasis can be gone for good as well.

I think there are many factors involved regarding whether this type of autoimmune reversal is possible. Like, how much damage has been done, etc.

However unlikely, it is possible to beat back the virus and reverse autoimmune process, at least in certain types of autoimmune conditions, and in certain individuals.

For instance, if you don't happen to have nutrient deficiencies, food allergies or sensitivities, chronic stress, poor diet, etc etc, you might be a more likely candidate for potential viral-induced autoimmune recovery.

Herpes viruses don't go away they're always there.

According to some studies, 100% eradication of EBV is possible, though it could take years on Valacyclovir at high doses - https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2772668/.

Based on my (admittedly very rough) calculations, I'd need to be on Valtrex another 1 yr to 1.5 yrs to clear EBV at my current dose.

Though in my case, I do not believe that will be necessary. I believe that my enterovirus infections caused my EBV to reactivate. And once I clear out my enterovirus infections completely, my immune system will be better equipped to handle a low-level EBV infection.

To the main point - All of that said, there is not a single pill to take care of all of this at once.

I have the same view. I have felt this intuitively for years. But after 13 years of research I'm more convinced than ever. I think there is one primary root cause and everything else is downstream from that cause.

The cause, once effectively treated, will remove all the other downstream effects and restore health. The billion dollar question is what is that root cause? Once researchers find that, solutions I think will come fast.

As much as @Learner1 and I do not get along or see eye to eye on most things... I have to agree w/ his standpoint on this, especially since my own treatment has been complex, treating multiple issues.

I do believe it's very possible for there to be a single cause, one trigger that happens, which ends up causing ME/CFS. But at that point, it's no longer about just treating that single cause/trigger, if it even still exists.

But who knows. Maybe they'll discover something crazy any day now.

That's hardly a proven theory for ME. It could be as simple as a latent viral infection in a few cells in the hypothalamus, or some sort of feedback loop involving membranes of micro-vesicles, or some other point failure. That's the sort of problem that can switch state quickly. The fact is that ME can switch state quickly, so any theory that doesn't allow that is most likely wrong.

I think another big part of the problem with this theory... and why I can't envision a single cure/treatment like is because of the fact that we have multiple causes of fatigue.

If we over-simplify CFS down to just this disease that makes us tired all the time, too tired to function. And just forget about all the other symptoms and complexities for a moment. .... You'd still be dealing w/ multiple issues in your body that need to be addressed.

There's the fatigue from mitochondrial dysfunction and cellular energy metabolism inefficiencies. There's the fatigue that comes from autonomic dysfunction, and lack of parasympathetic activity needed to refresh your body. There's fatigue from thyroid dysfunction, which controls your metabolism and directs how your body uses energy. There's fatigue from "sickness response" in the brain from inflammatory cytokines.

These direct causes of fatigue have all been linked to CFS, and can all be occurring in a single person. I can't think of a way to fix or change one thing in the body, that would result in ALL of those things getting fixed.

Okay, returning to 100% health actually means: "100% of whatever level of health you would have without ME". If you've got platinum poisoning and maybe a brain tumour and gunshot wounds, a 'cure ME in minutes' pill isn't going to make you fit for running a marathon anytime soon. It would probably reduce your misery level significantly though, and maybe allow faster recovery from other health problems.

I do appreciate this comment though. It's a solid point! . Gunshot wounds, hahaha

I'm convinced that for most of us it's a dysbiotic microbiome and a leaky gut

I fixed my microbiome balance and leaky gut, and I did not notice an immediate fix of CFS symptoms.

Though I agree that many have these gut issues.

I needed to do all the research I did and spend years treating different things, like adrenal fatigue, mitochondrial dysfunction, possible viruses, etc. until I finally learned what the root cause of my ME/CFS was and is.

So how do you feel now? Are you still treating? What's your treatment been? Are there any specific biomarkers you're measuring for success?

 

[kurt]

Sounds like CFS should be renamed chronic fatigue spectrum.

I'm reminded of the metabolomics study. Navioux has commented recently on his website that there probably are 50 different ways we can end up with a cell danger response. And that he believes could cause CFS. 50 causes sounds like a spectrum to me.

I suspect this will in fact turn out like cancer treatment, not all cancers have good treatment outcomes. But many do. The common element is the features of a cancer cell. The many triggers to get there though are diverse. And success rests on whether you have good cancer-fighting genetics, and so on.

I found an interesting on-off switch for myself. It is fungus in the small intestine. When it's active, I have more severe symptoms, including total insomnia that requires benzodiazepine. When I can inactivate the candida in my small intestine, I can sleep naturally most of the time. Incidentally, the small intestine is supposed to be mostly sterile. So why is candida getting there continually? I've blogged on this a bit here, including my theory of how a specific mycotoxin produced by Candida could explain why this works for myself and some other PWC. I think it's a fascinating example of how one of the 50 CDR triggers could work. Unfortunately it does not relieve my whole syndrome, but it gives me some of my brain back and restorative sleep is nice to have again.

Thanks for putting this list together @sometexan84, I would love to see a collection like this for improvements also, not just recoveries. Because many of us old timers who are less probable full recovery candidates, desperately want to find some improvements. For some of us recovery may depend on solving multiple problems, generating multiple small improvements. And if Navioux is right, we need at least 50 solutions for the various problems that could lead to ME/CFS. Maybe more.

 

[sometexan84]

I suspect this will in fact turn out like cancer treatment, not all cancers have good treatment outcomes. But many do. The common element is the features of a cancer cell. The many triggers to get there though are diverse. And success rests on whether you have good cancer-fighting genetics, and so on.

Another similarity for cancer and CFS treatment .... the earlier you catch it, the better

@kurt You will want to check out Hip's List of ME/CFS Recovery and Improvement Stories

 

[ljimbo423]

So how do you feel now?

I have improved my ME/CFS from severe and mostly bedridden for 6-8 years to fairly mild most of the time. Almost never take naps unless I don't get 7-7.5 hours of sleep. I sleep 8 hours a night and do 6-7 hours a day of physical activity. And haven't spent a day in bed in a looooong time from ME/CFS.

So a direct answer to your question is, a lot better than I use too!

Are you still treating?

Yes.

What's your treatment been?

Treating severe bacterial dysbiosis found through testing and leaky gut.

Are there any specific biomarkers you're measuring for success?

Just how I feel.

EDIT- Just to give a little context. I'm 60 years old and have had ME/CFS for 42 years, since I was 18 and have been disabled with it for 31 years. Since 1989.

 

[Wishful]

These direct causes of fatigue have all been linked to CFS, and can all be occurring in a single person. I can't think of a way to fix or change one thing in the body, that would result in ALL of those things getting fixed.

I can. The hypothalamus regulates a lot of body functions, directly or indirectly. A simple dysfunction there, just one chemical pathway, could possibly cause all the symptoms directly associated with ME, and many indirect ones. Fix that one dysfunction, and the body can go back to normal functions.

 

[sometexan84]

Treating severe bacterial dysbiosis found through testing and leaky gut.

Questions questions!
What types of testing did you do for bacterial analysis?
What were the main findings, like abnormal levels of which bacteria?
Have you tested for enterovirus?
Have you tested for streptococcus (ASO test)?
Have you tested for acidosis, specifically D-Lactic Acidosis?
What tests did you do to confirm leaky gut (urine Lactulose & Mannitol)?

I'm just very curious is all

I can. The hypothalamus regulates a lot of body functions, directly or indirectly. A simple dysfunction there, just one chemical pathway, could possibly cause all the symptoms directly associated with ME, and many indirect ones. Fix that one dysfunction, and the body can go back to normal functions.

Ok. So, say I have an HHV-6 infection and it's causing mitochondria fragmentation. How would this fit in?