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

frozenborderline

Senior Member
Messages
4,405
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
I very much disagree with the notion that if mold avoidance cures someone they didnt primarily have me/cfs. How does that square with such a large percentage of me/cfs patients being helped by it... eventually if you take away everyone who could find a root cause from the ME/CFS community then nobody will be left. Mold intolerance doesnt mean someone doesnt have me/cfs, we dont know enough scientifically about ME/CFS to say that it's a different condition. There were members of the original lake Tahoe outbreak which was the gold standard for me/cfs diagnosis forawhile, who were cured by mold avoidance. I would never say everyone with ME/CFS has a mold issue, but saying the opposite, that it cant be synonymous with ME/CFS, is just as much a sweeping statement without evidence.
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
I very much disagree with the notion that if mold avoidance cures someone they didnt primarily have me/cfs. How does that square with such a large percentage of me/cfs patients being helped by it... eventually if you take away everyone who could find a root cause from the ME/CFS community then nobody will be left. Mold intolerance doesnt mean someone doesnt have me/cfs, we dont know enough scientifically about ME/CFS to say that it's a different condition. There were members of the original lake Tahoe outbreak which was the gold standard for me/cfs diagnosis forawhile, who were cured by mold avoidance. I would never say everyone with ME/CFS has a mold issue, but saying the opposite, that it cant be synonymous with ME/CFS, is just as much a sweeping statement without evidence.
ME/CFS is known to be a complex, multi-organ system disease.

People with mold mycotoxin toxicity have a wide range of unpleasant symptoms including those associated with ME/CFS. It is fantastic that treating it makes their symptoms go away. It is a serious issue and many doctors and patiebts underestimate the danger of this problem and the drastic effects on the health of many patients.

But there are also many of us who have treated mycotoxins and still have ME/CFS symptoms. For most of us, there are multiple problems driving ME/CFS symptoms. The Lake Tahoe outbreak people also seemed to have had a virus.

In any case, it is prudent to investigate multiple possible causes and drivers of this illness as finding only one cause would be extremely lucky.
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Messages
79
ME/CFS is known to be a complex, multi-organ system disease.

Every case is unique. ME/CFS is probably heterogeneous disease, and many symptoms could be explained by dysfunctional critical neural pathways in brain. If ME can be cured with CCI surgery in some people, can we say that ME/CFS is multi-organ system disease, in their case?

I think it is possible, even now, to clearly define some ME/CFS subtypes, and explain all symptoms in those people. But it seems medical community isn't even trying, and all we have is statements like "ME/CFS is unexplained/mysterious multi-organ systemic disease".

I'm ranting because I think it is possible to at least explain ME/CFS, in many cases. But nobody did this yet.
 

geraldt52

Senior Member
Messages
602
I seriously doubt that ME/CFS is a heterogeneous disease, but the people who are diagnosed with ME/CFS are almost certainly a heterogeneous cohort. I also don't believe that people who were cured with CCI surgery had ME/CFS, as they clearly had CCI, which would be among the plethora of things that would be exclusionary for a ME/CFS diagnosis. CCI was clearly mimicking CFS/ME, as many other things clearly do, but CCI is CCI.

The last I read the NIH study was finding a very large number of people with other, often treatable, conditions in spite of a significant effort to closely control the cohort. With no biomarker, it is no wonder that a "CFS/ME" diagnosis is such a mess. I do tend to believe that "long Covid" is probably CFS/ME, but is being easily diagnosed as long Covid because of the clear association with recent Covid infection. If anyone had really cared to investigate the Incline Village outbreak perhaps we'd know what CFS/ME is, and who actually has it, as well...
 

Wishful

Senior Member
Messages
5,751
Location
Alberta
and many symptoms could be explained by dysfunctional critical neural pathways in brain.

I'm getting more suspicious about astrocytes. They work in all parts of the brain and even some other organs, such as heart and gut. They are an important part of cognition, sleep, pain awareness, BBB, memory, etc. I'm not sure whether there are any ME symptoms that can't have an explanation involving astrocytes. Astrocytes respond to cytokines in the body, and also from signals from the gut microbiome.

Whoa! I did a quick search for "ME/CFS astrocytes" and found that not only are there several papers, I checked one ( https://osf.io/ef3n4 ) and found that it agreed that astrocytes are a likely candidate for the root dysfunction of ME. I've only skimmed through it (bad brain day), but it seems convincing. I highly recommend checking it out. I think it's worth posting the link in its own thread.
 

frozenborderline

Senior Member
Messages
4,405
But there are also many of us who have treated mycotoxins and still have ME/CFS symptoms. For most of us, there are multiple problems driving ME/CFS symptoms. The Lake Tahoe outbreak people also seemed to have had a virus.

In any case, it is prudent to investigate multiple possible causes and drivers of this illness as
I'm not denying that or claiming it IS the root cause of ME/CFS. I'm saying a) we can't say based on existing evidence that people with that experience didnt have me/cfs. And b) we can't rule out this being the root cause of ME/CFS until there is more research.

I subscribe to @Hip 's dual factor theory anyway, not just "mycotoxins". Not sure what people react to when they have to do mold avoidance "" is mycotoxins or anything fully measurable by any tests. We have so many novel chemicals people become sensitized too, and the outdoor microbiome becomes changed as a result of chemicals and exurbanizatkon and development and loss of diversity at all niches of ecology.

So we dont even know what people are reacting to on a chemical level. We cant measure it with any commercially available tests. We do have anecdotal experience and we also know that environmental toxins and pollution are known to cause the increase in chronic disease in the past 30 years or so. Naviaux says this and I agree with him. Its becoming a silent epidemic
 
Messages
79
I seriously doubt that ME/CFS is a heterogeneous disease, but the people who are diagnosed with ME/CFS are almost certainly a heterogeneous cohort.
Sorry, but I didn't understand. Let's look at an example. In one person, ME manifests with these core symptoms: general fatigue, hypersomnia (non-refreshing), and brain fog. His illness started from some bacterial infection. Other person with ME have abnormal muscle fatiguability (no general fatigue), insomnia/sleep disturbances (sleep is refreshing), autonomic dysfunction/POTS. Triggered by some drugs. Both persons have ME diagnosis. But symptoms are so different and it feels like they have different diseases. So, why we can't assume that ME is heterogeneous?

I also don't believe that people who were cured with CCI surgery had ME/CFS, as they clearly had CCI, which would be among the plethora of things that would be exclusionary for a ME/CFS diagnosis. CCI was clearly mimicking CFS/ME, as many other things clearly do, but CCI is CCI.
What other things can mimick ME? I don't know if there is anything that looks like ME. Fatigue (general and/or muscle), autonomic dysfunction and/or brain fog, sleep disturbances. All symptoms are chronic, typically wax and wane, and there is no symptoms explanation by modern medicine high-tech devices and tests. Diagnosis can be made immediately by experienced doctor.

I think, if you have ME/CFS symptoms, then you have ME/CFS. Cause and disease course are unique. If CCI caused ME, then by fixing CCI you can get rid of ME. If some viral infection sits in the brain or spinal cord, infection must be cured. We must know where symptoms are coming from so we can possibly treat or cure it.
 

geraldt52

Senior Member
Messages
602
Well, for just one example, a thyroid deficiency can mimic ME/CFS...and pretty clearly CCI has been recently shown to mimic ME/CFS. If treatment for either of these conditions eliminates a person's symptoms then clearly that person didn't have ME/CFS...the definition of ME/CFS requiring that the presence of any other condition that could explain the symptoms excludes one from an ME/CFS diagnosis. PEM is often cited as unique, but the definitions used are vague enough that it ends up not being all that unique...and, it is self reported and unobservable. Obviously we're all sick, but I seriously doubt that even half the people on PR have the same illness that I have...and none of us know what we have.

An ME/CFS diagnosis is mostly meaningless. People diagnose themselves, and doctors are careless and happy to use the ME/CFS tag when it's easy for them. The NIH enlisted a number of so-called ME/CFS experts to assemble their cohort, and still ended up with a significant percentage of people with other conditions that removed them from the study...obviously even experts are fooled. Without a biomarker, an odd collection of unexplained symptoms does not make an illness, and won't allow for the construction of a cohort that any amount of studying is going to make any progress on...which is where ME/CFS been for 40 years.
 

Husband of

Senior Member
Messages
318
Well, for just one example, a thyroid deficiency can mimic ME/CFS...and pretty clearly CCI has been recently shown to mimic ME/CFS. If treatment for either of these conditions eliminates a person's symptoms then clearly that person didn't have ME/CFS...the definition of ME/CFS requiring that the presence of any other condition that could explain the symptoms excludes one from an ME/CFS diagnosis. PEM is often cited as unique, but the definitions used are vague enough that it ends up not being all that unique...and, it is self reported and unobservable. Obviously we're all sick, but I seriously doubt that even half the people on PR have the same illness that I have...and none of us know what we have.

An ME/CFS diagnosis is mostly meaningless. People diagnose themselves, and doctors are careless and happy to use the ME/CFS tag when it's easy for them. The NIH enlisted a number of so-called ME/CFS experts to assemble their cohort, and still ended up with a significant percentage of people with other conditions that removed them from the study...obviously even experts are fooled. Without a biomarker, an odd collection of unexplained symptoms does not make an illness, and won't allow for the construction of a cohort that any amount of studying is going to make any progress on...which is where ME/CFS been for 40 years.
Hey I agree that when they do studies their population needs to be homogenous. or even better they need to put more effort into identifying the causes of heterogeneity in their patient set (while attempting to ensure they have a sufficient sample size so something can be statistically significant within at least one subset), and make this information available.

Just an aside (not an argument against anything you said, just an observation). Based on what you say ME/CFS by definition excludes known illnesses that could give the same symptom set and therefore MECFS is when someone has the MECFS set of symptoms but is unexplainable bu any known illness. Even in that definition there is no reason to expect there is one illness underlying MECFS. And an attempt to explain your illness is an attempt to determine that you don’t have MECFS, not to determine the mechanism underlying the true MECFS.

Now back to business: if there are several known diseases presenting the same symptoms as MECFS, then there are most likely several unknown ones . So excluding the known ones from your study doesn’t produce a homogenous study set. What we need is studies that look at a range of biological parameters to try and define subsets of people who fit the MECFS symptom set. It would be useful to include people with known diseases that also fit this criteria to see whether they can be differentiated by a set of biological parameters.
 
Messages
79
I agree, and that’s why I think different symptoms are coming from different damaged neural pathways in the brain. Probably hypothalamus and brainstem is at the core of dysfunction, with many downstream effects. But I also believe it is possible to recover, at least partially, in some cases. Nature designed our bodies to heal the wounds. Even if process is very, very slow and requires big fortune and avoiding everything that produces further damage. It sounds wrong to the people that sick for so many years. But people with PVFS recover sometimes, maybe partially. And I think it isn’t right to say that they didn’t have ME/CFS, in my opinion.
 

Wishful

Senior Member
Messages
5,751
Location
Alberta
Nature designed our bodies to heal the wounds.

No, we evolved to survive long enough to reproduce. We didn't evolve to guarantee that every individual would survive to reproduce. Evolution does allow for losses. The human birth rate probably wouldn't even notice if everyone with ME was unable to reproduce (maybe due to death).

I do believe that ME can be cured. I don't believe that we evolved a mechanism that will allow ME to cure itself. Well, I suppose you can consider the evolution of intelligence to be a mechanism that leads to a cure.
 
Messages
79
No, we evolved to survive long enough to reproduce. We didn't evolve to guarantee that every individual would survive to reproduce. Evolution does allow for losses. The human birth rate probably wouldn't even notice if everyone with ME was unable to reproduce (maybe due to death).

I do believe that ME can be cured. I don't believe that we evolved a mechanism that will allow ME to cure itself. Well, I suppose you can consider the evolution of intelligence to be a mechanism that leads to a cure.
ME is something nature didn’t even planned to happen to any animal. This disease wasn’t engineered. I believe ME is serious, long term damage some some part of the the brain. But some tissue can recover on it’s own. And that was planned by nature. But of course, if some wild animal develop ME, it will probably die, because it’s too debilitating even in mild form. I believe ME can be cured too, but unfortunately medical community doesn’t care at the moment.
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
the definition of ME/CFS requiring that the presence of any other condition that could explain the symptoms excludes one from an ME/CFS diagnosis.
This is incorrect.

The 2015 US Institute of Medicine/National Academy of Sciences report, which looked at 9,000 studies determined that ME/CFS is NOT a diagnosis of exclusion, and that part of a diagnostic workup is to identify and treat co-existing conditions.

Based on what you say ME/CFS by definition excludes known illnesses that could give the same symptom set and therefore MECFS is when someone has the MECFS set of symptoms but is unexplainable bu any known illness. Even in that definition there is no reason to expect there is one illness underlying MECFS. And an attempt to explain your illness is an attempt to determine that you don’t have MECFS, not to determine the mechanism underlying the true MECFS
Now back to business: if there are several known diseases presenting the same symptoms as MECFS, then there are most likely several unknown ones . So excluding the known ones from your study doesn’t produce a homogenous study set. What we need is studies that look at a range of biological parameters to try and define subsets of people who fit the MECFS symptom set. It would be useful to include people with known diseases that also fit this criteria to see whether they can be differentiated by a set of biological parameters.
We do t have a set of biological parameters in common. What we have is maybe 20-25 common causes/drivers, plus some ones unique to specific individuals in various combinations that are unique to each patient. It is identifying and treating these multiple problems with individualized medicine that patients will improve. The reason much of the research has been so unhelpful is that they group patients with the same symptoms but an assortment of different problems, rather than untangling each person's unique issues.
agree, and that’s why I think different symptoms are coming from different damaged neural pathways in the brain. Probably hypothalamus and brainstem is at the core of dysfunction, with many downstream effects.
I do not believe that applies to me - my issues seem to be more immune system and infection related, along with oxidative stress and hormonal and nutrient deficiencies.
 
Messages
79
I do not believe that applies to me - my issues seem to be more immune system and infection related, along with oxidative stress and hormonal and nutrient deficiencies.
What is immune system? Isn’t it controlled by hypothalamus? And hormones too. Every infection is already known and can be treated. Or at least seen be medical tests. Sorry maybe I don’t understand but that is just my thoughts.
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
What is immune system? Isn’t it controlled by hypothalamus? And hormones too. Every infection is already known and can be treated. Or at least seen be medical tests. Sorry maybe I don’t understand but that is just my thoughts.
I'm not sure what you're getting at. I can see no science that says the hypothalamus governs natural killer cell function or the making of antibodies by B cells. Every infection cannot be treated and many that we know a lot about are not being found or thoroughly treated by many doctors.

Furthermore, infections like herpesviruses lurk in the nervous system waiting for a weak moment to reactivate and cause problems, including triggering autoimmune antibodies and cancers. Other infections, like Lyme and Cocksackie viruses are notoriously difficult to get rid of.
 

Wishful

Senior Member
Messages
5,751
Location
Alberta
I believe ME is serious, long term damage some some part of the the brain.

I don't believe that. I had a dozen or more periods of temporary remission in the first 10 or so years of my ME. I simply snapped from ME state back to full health and then back again some hours later. Long term damage doesn't snap states that way.

I see ME as an unexpected interaction between feedback loops. We have all sorts of feedback loops controlling cell function, protein production, nutrient levels in specific areas, etc. Many of those interact, in complex ways. Our ancestors survived when those loops worked together. Mutations where those loops interacted badly were more likely to result in earlier death. I think the predisposition to ME involved some of those parameters being non-average in a way that allows a trigger to push one of the loop parameters past a point into positive feedback. That changes some other parameters which in turn support that feedback loop. If the main feedback loop is deep in the brain, protected by the BBB, it reduces the number of chemicals that might be able to push that parameter back into the non-ME state.


And that was planned by nature.

A whole different non-ME topic, but nature isn't sentient and doesn't plan anything. Penicillin wasn't planned to be available to protect humans from bacterial infections; it was just a mutation that produced a chemical that increased the survival rate and thus reproduction rate of that organism. It wasn't even planned to protect the mold; it was just a mutation that survived.
 
Messages
79
I don't believe that. I had a dozen or more periods of temporary remission in the first 10 or so years of my ME. I simply snapped from ME state back to full health and then back again some hours later. Long term damage doesn't snap states that way.

I see ME as an unexpected interaction between feedback loops. We have all sorts of feedback loops controlling cell function, protein production, nutrient levels in specific areas, etc. Many of those interact, in complex ways. Our ancestors survived when those loops worked together. Mutations where those loops interacted badly were more likely to result in earlier death. I think the predisposition to ME involved some of those parameters being non-average in a way that allows a trigger to push one of the loop parameters past a point into positive feedback. That changes some other parameters which in turn support that feedback loop. If the main feedback loop is deep in the brain, protected by the BBB, it reduces the number of chemicals that might be able to push that parameter back into the non-ME state.


A whole different non-ME topic, but nature isn't sentient and doesn't plan anything. Penicillin wasn't planned to be available to protect humans from bacterial infections; it was just a mutation that produced a chemical that increased the survival rate and thus reproduction rate of that organism. It wasn't even planned to protect the mold; it was just a mutation that survived.
Sorry I used the wrong term. By damage I meant some neurological pathway(s) in ME is broken or dysfunctional. The dysfunction sits at the very fundamental level of maintaining body homeostasis. That’s why symptoms are so debilitating.

Body can adapt or reverse some part of that dysfunction with some healing mechanism. If there is no disease process in ME (all symptoms come from inability of our bodies to adapt to some dysfunction) then ME can be cured only if we can fix that dysfunction.

For example, I think only dysfunctional baroreflex alone (which is sitting in brainstem) can lead to ME. It can be any other broken fundamental neurological pathway that can to lead to ME.
 

JES

Senior Member
Messages
1,323
I suppose it could be cured if that dysfunction itself is at the core of the disease. There are unfortunately some other possibilities as well. For example, the hypotheses from Naviaux and Prusty propose that ME/CFS is caused by a switch of state of mitochondria. In short, they believe that in the presence of a virus or some other factor that could be the ME/CFS plasma, the mitochondria go into a protective, antiviral mode, which then come at the cost of cellular energy.

Now these mitochondria could presumably rather quickly go back into their normal state and you would gain the energy back. There is also not necessarily much "disease process" going on in the sense that there would be any detectable permanent damage from all this, other than the energy dysregulation.

Assuming this hypothesis, it could be possible to temporarily reverse the signal that is causing the mitochondrial dysregulation, let's say through some brain hacking, and regain the energy. The problem is that if the underlying pathology remains and is not dealt with, you would most likely end up back in the old state sooner or later, a bit like if you apply a force to a pendulum you get it moving, only for it to return back to the same position later.

I guess what I'm saying is that if there is an underlying cause and dysfunctioning pathways are an adaptation to this, you would never really escape from ME/CFS state permanently. I have had success in temporarily reducing my ANS symptoms for example with lots of different methods including some drugs, supplements, alcohol, relaxation methods, vagus nerve stimulation etc., but the old state always returns.
 

Wishful

Senior Member
Messages
5,751
Location
Alberta
By damage I meant some neurological pathway(s) in ME is broken or dysfunctional.

I still prefer the hypothesis of interacting feedback loops that can switch into a positive feedback state. I've studied control theory, and know that this kind of lock-up can happen with interacting loops It seems like a reasonable failure mode for bodies.