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

sometexan84 · Aug 15, 2020

hunter1899 · Aug 16, 2020

Wow thanks Texan. That definitely gave me a good dose of hope!

Learner1 · Aug 16, 2020

Some of these people fully recovered. Some did not. It is clear from their stories that there is no "one size fits all" cure. One recovered via lightning process... I suspect a few of these people didn't have ME/CFS.

I've found it is possible to get a lot better, with adequate testing to find treatable problems and applying treatments. In my case, my mitochondria were damaged by chemotherapy, and I doubt I can be cured. But I have been able to vastly improve my quality of life through extensive treatment.

I find it demoralizing when someone oversimplifies this disease and suggests that something like lightening process is a cure.

While I think it's great you've gotten well in the past 3 months, @sometexan84 for most of us, we have a combination of genetics and environmental factors and a cascade of issues that developed from the original triggers, so an individualized medicine approach with a treatment plan that evolves over time offers the best chance of success, not some whiz bang "do as I do" solution. And, it's one thing to be 36, but harder the older we are...

geraldt52 · Aug 16, 2020

There's an obvious question that needs answering for any recovery report to have any meaning: "recovered from what?" With no marker and vague definitions who knows what these people, or anyone else, was actually suffering from.

I know it won't be popular, but I have no doubt that many people were "cured" by the Lightning Process, or by GET, or by CBT, or by Gupta...it seeming to me that their reports are as valid as anyone else's. But what exactly were they "cured" of? Why should I not believe them, but believe someone else who took some random drug or supplement and claims that that cured them? Especially when I've taken the same drug or supplement and it did absolutely nothing. So many people have laid claim to "ME/CFS" it seems to me to virtually have no meaning anymore, and I have my doubts that even half of the people on PR have the same condition that I have...not that they aren't sick, not that my condition is more important then their condition, but just that we don't have the same condition. I'm expecially suspect of any condition that can't be explained in the context of the Incline Village outbreak, which defined CFS.

In addition, after the results of the blinded Rituxan study, subjective patient reports don't strike me as at all reliable.

Finally, it seems to me that the totally random waxing and waning of symptoms, that seems to be a significant characteristic of ME/CFS, is as likely the cause of any "recovery" as anything else. I had a very significant "recovery" 25 years ago (maybe 80%), that I was tempted to attribute to quite a few things at that time, that I now am certain was just the random waxing and waning of ME/CFS symptoms.

Wishful · Aug 16, 2020

geraldt52 said:
With no marker and vague definitions who knows what these people, or anyone else, was actually suffering from.

Yes, that's why I don't put much weight on such stories. Some might have been true ME, but with an individual factor that was treatable. Others might have been some other disease. I would expect a treatment for the core dysfunction of ME to work for more than just a case or two here and there.

sometexan84 · Aug 16, 2020

We can't unfortunately validate any of their stories since they are no longer in the forum.

However, regardless of the type of treatment or even whether or not they had ME/CFS to begin with, one key takeaway is that they are gone. What I mean to suggest is, it could be important to keep this in mind as we create polls or try and collect treatment-based data from the community. If many have been successfully treated, and they are no longer around to chime in on a relevant poll or in a "Has anyone had success w/ [X-treatment]" thread, etc, it can skew the data/information.

For those looking for specific treatments that have worked in ME/CFS patients, a much better thread would be Hip's List of ME/CFS Recovery and Improvement Stories.

For instance, the reason I made the poll regarding viral/bacterial infection tests is because A) I'm personally curious, and B) the data should end up being 100% accurate. The takeaway from this poll won't be as meaningful as say, what has cured your ME/CFS. But I'm hoping it will be helpful.

sometexan84 · Aug 16, 2020

Learner1 said:
While I think it's great you've gotten well in the past 3 months, @sometexan84 for most of us, we have a combination of genetics and environmental factors and a cascade of issues that developed from the original triggers, so an individualized medicine approach with a treatment plan that evolves over time offers the best chance of success, not some whiz bang "do as I do" solution. And, it's one thing to be 36, but harder the older we are...

To be clear, yes I have been "feeling well", though I do not at this time have enough evidence to definitively say "I am 100% cured". Just so we're on the same page. I don't make that claim.

That said, please remember the topic of this post is not about me, or about comprehensive vs quick-hit treatment solutions. This thread is merely a resource to check out some recovery stories from the PhoenixRising community, as well as a simple demonstration suggesting possible limitations in certain types of internal data collection.

Learner1 · Aug 16, 2020

sometexan84 said:
This thread is merely a resource to check out some recovery stories from the PhoenixRising community,

There are lots of stories around here in plenty of other threads. Interesting that you selected these particular cases, as I'm not sure those would be the ones that are representative....

Wishful said:
I would expect a treatment for the core dysfunction of ME to work for more than just a case or two here and there.

Does anyone know exactly what the cote dysfunction in ME/CFS is, and is there a treatment for it? Gee whiz, an awful lot of us would be keen to try it.... Seems like, up til now, the focus has been on finding a diagnostic marker, but never on treatments...

geraldt52 said:
I'm expecially suspect of any condition that can't be explained in the context of the Incline Village outbreak, which defined CFS.

Er, why pick that? Why not pick the 1934 Los Angeles Hospital outbreak? Or the 1948 Akureyri, Iceland outbreak? Or the 1949 outbreak in Adelaide, Australia? Or the Royal Free Hospital outbreak in July and August 1955?

Or the many of us who had other triggers for our cases of ME/CFS? If we weren't at Lake Tahoe in 1984, are our cases invalid?

I don't think so. Experts have said we fall into subsets... The 2015 IOM Report said that patients may be categorized by:

Exercise response
Immunologic
Infectious
Endocrine
Neurological
Metabolic
Genomic

And that integrative approaches using systems biology may be useful in unraveling illness triggers.

geraldt52 said:
Especially when I've taken the same drug or supplement and it did absolutely nothing

First of all, everyone had unique genes. Secondly, we have unique environmental factors. Thirdly, even with the same triggers and symptoms, how our bodies uniquely responds to these triggers, and which secondary and tertiary effects come about can vastly change how we respond to treatments.

In June, researched Bhupesh Prusty stated:

"ME/CFS is a state of infection-mediated immune dysfunction that begins as a very simple malfunction of the innate immune system which starts safeguarding the body way too much than what it should be doing. If this initial phase is not handled carefully and wisely, the body starts accumulating other molecular and biochemical dysfunctions leading to varying amounts of secondary physical defects including neurological damages. Innate immune sensing of mitochondria and subsequent metabolic changes play a key role during the accumulation of secondary molecular dysfunctions.

And, according to Ron Tomkins, proposed research areas for ME/CFS include:

1. Studies of inflammation in muscle, brain, and blood

2. Improving diagnostic technologies

3. Personalized medicine for ME/CFS

4. Clinical research to develop novel, new drugs

Of these, #3 offers the most promise. As women have been overlooked in drug studies for decades, and get overdosed or have increased dude effects in doses meant for men, it's nit garx tk see why other genetic differences could make people prone to varied effects from the same drug or supplement. (I was almost killed by a rare side effect of a common prescription drug taken as prescribed that most other people are fine with, and my chemotherapy, which many do fine with, triggered my ME/CFS...)

sometexan84 said:
as well as a simple demonstration suggesting possible limitations in certain types of internal data collection.

Absolutely agree...

sometexan84 said:
it could be important to keep this in mind as we create polls or try and collect treatment-based data from the community. If many have been successfully treated, and they are no longer around to chime in on a relevant poll or in a "Has anyone had success w/ [X-treatment]" thread, etc, it can skew the data/information.

That's true. And, additionally, there are some great treatments that many have not thought to try it had access to, so they don't get large numbers of positive "votes" while other not so excellent treatments have been more widely tried and are just so-so...

Kathevans · Aug 16, 2020

Is @stridor on the list above? Or @Johnmac ? They are two people I conversed with a lot, and have actually continued to see @stridor's comments on the ACC site. They have both recovered and pretty much disappeared from this site. Both of them combined a number of therapies, though I know specifically dealing with B12 issues and mercury issues. I, too, have felt that these two, particularly given my snps, have been what has impacted my health primarily.

Currently, I am focused on both doing rounds of ALA chelation a la ACC, and continuing with the transdermal B12 oils, and a focus on B2/thyroid, which are specialities of Dr. Gregory Russell-Jones who runs the b12oils.com site and is the inventor of the transdermal oils (which I've now used for years).

I have been completely focused on Greg's approach, which can be found at the site 'Understanding B12 Deficiency'. If you have fibromyalgia/ME/chronic fatigue (which I was diagnosed with 25 years ago) it's worth a look. I believe in it...

sometexan84 · Aug 16, 2020

Learner1 said:
Interesting that you selected these particular cases, as I'm not sure those would be the ones that are representative....

I'm not sure I understand the question.

Wishful · Aug 17, 2020

Learner1 said:
Does anyone know exactly what the cote dysfunction in ME/CFS is, and is there a treatment for it? Gee whiz, an awful lot of us would be keen to try it....

My comment was that if someone stumbled across an effective treatment for the core dysfunction of ME, it should have a dramatic effect on more than just one or two people. A treatment that works for only a few people is probably treating something other than the core dysfunction, something that only a few individuals have.

There's no point in researching treatments for ME when there aren't any that work for more than a few individuals. Finding a marker is important for eliminating non-ME patients from studies, which makes the data 'noisy'. A marker also gives us a starting point for looking for why the marker exists. If I was allocating research resources at this point, I'd probably put the majority into finding a marker...and most of that into projects searching the brain, since that's where I believe the core dysfunction is hiding.

geraldt52 · Aug 17, 2020

Learner1 said:
Er, why pick that? Why not pick the 1934 Los Angeles Hospital outbreak? Or the 1948 Akureyri, Iceland outbreak? Or the 1949 outbreak in Adelaide, Australia? Or the Royal Free Hospital outbreak in July and August 1955?

I have no problem with any of the other "outbreaks", but I chose Incline Village because the CDC actually coined the term Chronic Fatigue Syndrome, and defined the syndrome, based on the Incline Village outbreak, not any of the others. I do have a problem with conditions that can't be seen to fit within the context of any of the outbreaks, because I don't see those conditions as logically being the same condition.

I also don't agree that there is as much variability within CFS as it may appear, when perhaps dozens of different conditions, wrongly, are camping out under the CFS tent. From what I have read, the NIH, even after their very careful cohort selection, is finding that a large percentage of participants in their study have an entirely different condition that explains their symptoms. It isn't the fault of patients that they are wrongly diagnosed, but rather the fault of disinterested doctors or inadequate testing...but it makes little sense from my standpoint thinking that a treatment that "worked" for someone else's unrelated condition, if it even did actually "work", is going to work for my condition.

ruben · Aug 17, 2020

I am an ME/CFS sufferer in UK. The NHS presumably must know with some degree of accuracy just how many of us there is this country. Plus anyone who shows as having had it at some point on their medical records. Would it not be worth everyone who is or has been sufferer in the past being sent out a questionnaire about their current health. All data could be analyzed and outcomes of different approaches. This would surely cover more exsufferers. Also could apply globally. Just a thought.

Wishful · Aug 17, 2020

ruben said:
All data could be analyzed and outcomes of different approaches.

It's a nice idea, but I think the data is too 'noisy' for it to work. Since we don't have a marker for ME, there would be lots of data from people who didn't actually have ME. Many 'successful treatments' would probably be from the placebo effect, or from treating comorbid disorders that may or may not relate to ME.

Another problem: this project would be run by government bureaucrats, and we all know how that turns out.

Johnmac · Aug 20, 2020

Kathevans said:
Is @stridor on the list above? Or @Johnmac ?

Yes Kath, just dropped in today after a long absence.

Seven7 · Aug 20, 2020

geraldt52 said:
In addition, after the results of the blinded Rituxan study, subjective patient reports don't strike me as at all reliable.

I beg to defer, the issue in CFS is one of the best treatment is IVs for those with OI, by far the best!!! so using IV as placebo should not happen. I really did not understand that one!!!

Kathevans · Aug 20, 2020

@Johnmac
Nice to see you here! I often repeat a remark that I attribute to you, that B-12 deficiency and mercury toxicity are two sides of the same coin. In any case, there is much that you contributed that I took to heart. I had my amalgams removed, I've now done 53 rounds of chelation. And most recently I've worked on the deranged mineral transport so common to those with mercury issues. And Greg Russell-Jones has done enough research to establish which forms of the prime B2 drivers (Molybdate and Selenite) work best and are most easily absorbed by the body. For me, as I intimated above, the last seven months of titrating Selenite up has been a game changer, slowly, but steadily. I now 'feel' the strength returning to my legs when I walk, can take a hill without my son pushing on my back to get me to the top; and I can reach the top without having to pause to catch my breath. This after 25 years of CFS/ME.

I still have a way to go, but I am so grateful to this site and all that I have learned here.

Shen · Aug 21, 2020

This just confirms the reality that cfs is not an unique disease. It is a bunch of idiopathic sympthoms. Wich means that a lot problems can cause the same effect. Seems that personal therapy is by far the best approach to treat cfs.

Just because someone was cured from cfs. Doesn't mean that he didn't had the exact same disease others have. We don't have the exact mechanics behind what causes this sympthoms.

We have clues. IMO inflammation its the key. Most treatments target inflammation. We are just finding how inflammation can affect us in different ways. Overactive Inmune system. Active infections. Environmental triggering factors, Genetics defects. And even now some mechanical basis. Like CCI for example (wich I suspect that is a big one for severe cases)
In any case finding the root of YOUR problem. Solves the inflammation. Wich heals you. That's why treatments are so different. Inflammation can get triggered by a lot of things.

We need to find exactly what part of our body has the on and off switch that triggers this sympthoms. So then we can treat the problem directly. In the meantime. Looking for the origin of inflammation seems to give your body the change to heal itself.

Learner1 · Aug 22, 2020

sometexan84 said:
I'm not sure I understand the question.

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:

Daosin (histame in the US)
Fecal transplant
Rest
Not doing intense exercise
mold/chemical avoidance
DNRS with partial avoidance including a 'clean' home that I still live in
antidepressants
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

Wishful said:
My comment was that if someone stumbled across an effective treatment for the core dysfunction of ME, it should have a dramatic effect on more than just one or two people. A treatment that works for only a few people is probably treating something other than the core dysfunction, something that only a few individuals have.

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

geraldt52 said:
I also don't agree that there is as much variability within CFS as it may appear, when perhaps dozens of different conditions, wrongly, are camping out under the CFS tent. From what I have read, the NIH, even after their very careful cohort selection, is finding that a large percentage of participants in their study have an entirely different condition that explains their symptoms. It isn't the fault of patients that they are wrongly diagnosed, but rather the fault of disinterested doctors or inadequate testing...but it makes little sense from my standpoint thinking that a treatment that "worked" for someone else's unrelated condition, if it even did actually "work", is going to work for my condition.

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.

Wishful said:
Since we don't have a marker for ME, there would be lots of data from people who didn't actually have ME. Many 'successful treatments' would probably be from the placebo effect, or from treating comorbid disorders that may or may not relate to ME.

Likely so.

Shen said:
This just confirms the reality that cfs is not an unique disease. It is a bunch of idiopathic sympthoms. Wich means that a lot problems can cause the same effect. Seems that personal therapy is by far the best approach to treat cfs.

Just because someone was cured from cfs. Doesn't mean that he didn't had the exact same disease others have. We don't have the exact mechanics behind what causes this sympthoms.

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.

Shen said:
In any case finding the root of YOUR problem. Solves the inflammation. Wich heals you. That's why treatments are so different. Inflammation can get triggered by a lot of things.

We need to find exactly what part of our body has the on and off switch that triggers this sympthoms. So then we can treat the problem directly. In the meantime. Looking for the origin of inflammation seems to give your body the change to heal itself.

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.

Wishful · Aug 22, 2020

Learner1 said:
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.

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.

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

sometexan84

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hunter1899

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Learner1

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geraldt52

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Wishful

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sometexan84

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sometexan84

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Learner1

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Kathevans

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sometexan84

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Wishful

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geraldt52

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ruben

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Wishful

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Johnmac

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Seven7

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Kathevans

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Shen

Learner1

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Wishful

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