What will the cure look like someday?

[joejack102]

I'm convinced beyond any doubt that in my lifetime we will see a discovery of the root cause for ME/Chronic Fatigue Syndrome/POTS/Dysautonomia... My question for everyone is: What do you imagine the cure will look like? I'm not talking about a temporary fix or pill that "masks" the problem, but something that treats the underlying cause. Will it be a brainwave treatment? A surgery to repair/replace a major organ (adrenals, thyroid, etc)? A psychological/mental health therapy that changes our chronic thought patterns? An anti-viral treatment? A vaccine? Etc?

 

[ryan31337]

All of the above. These syndromic conditions are the common downstream effect from a number of underlying issues. There won't be one single treatment that works for everyone because the causes can be completely different.

We will need to understand the causes and their treatments individually, as well as become better diagnosticians in order to isolate them in the first place.

 

[Wishful]

I disagree with ryan31337. I think ME is a disease with multiple triggers and modifiers, but not multiple causes. Most ME cases should have some common dysfunction--a cellular abnormality or whatever--which could be treated. If that is treated, the sensitivity to triggers or modifiers would no longer be an issue.

I haven't thought deeply about what the cure would be, but I do imagine filling out a prescription, taking one pill, and feeling fully cured within hours. That's how my temporary remissions worked, so for me the cure is the same thing, except permanent (possibly needing the cure again if a strong viral infection retriggers ME).

 

[Rufous McKinney]

but I do imagine filling out a prescription, taking one pill, and feeling fully cured within hours.

Feels like something needs to arrest or reverse..this loss and degradation of collagen.

From the experiences of others like yourself, sudden or temporary remissions suggest there may be some simple adjustment to our metabolics.

But if this is the result of a multi-decade degradation, "a pill" isn't likely to return the body to an improved state.

But meanwhile: I hope thats wrong.

 

[Matthew_2]

This is a fascinating question, but I am struck by your bold confidence that you will see such a discovery in your lifetime. @joejack102 would you mind sharing what gives you this confidence?

Are there discoveries happening in research that bolster you? Have prominent clinicians or researchers whom you respect made similar pronouncements? Is it something more subjective - a gut feeling, perhaps? I am fairly new to ME/CFS, and, perhaps my experiences are very limited, but I hear medical and scientific communities talk about hundreds of possible correlations and potential lines of research, and not enough funding, etc. etc.

Thanks!

 

[ljimbo423]

I agree with wishful. I think that ME/CFS has one root cause, although there will be a small percentage of people with other disorders that present like ME/CFS.

I do think there will be targeted treatments available for the root cause once it's found.

My view is the gut is the root cause. I don't see a single drug reversing well established gut dysbiosis and leaky gut. At least not in the near future.

My feeling is that Fecal Microbiota Transplantation (FMT), as it becomes better understood how to use it, more and more effectively, will be the best and fastest treatment available, in the near future.

Rate now there's not enough known about FMT to make it highly effective in ME/CFS. If the gut is found to be the core cause though, I think researchers will be very focused on honing and fine tuning FMT for ME/CFS and it will become a very effective treatment.

 

[ryan31337]

I agree with wishful. I think that ME/CFS has one root cause, although there will be a small percentage of people with other disorders that present like ME/CFS.

What evidence is there for a single cause in a vast majority of patients? And why a single cause? Why not 2, 3 or 10 causes?

Wasn't the NIH study struggling to recruit because the majority of the subjects were found to actually have a rare disease, once given a million dollar workup? Is it not more reasonable to assume we patients simply have one of the many poorly understood and frequently missed diseases, rather than an entirely new and mysterious disease that science cannot detect?

It seems far more likely to me, given the decades of researchers chasing their tails and having very little to show for it, that a grand unifying disease not exist. Especially when you consider we are already identifying and eliminating some of the diseases/issues that cause people to meet CFS/ME diagnostic criteria right now, hot topics at the moment like CCI/AAI.

 

[ljimbo423]

What evidence is there for a single cause in a vast majority of patients?

I have actually compiled quite a bit. There are also several leading ME/CFS researchers that have said they think the gut is the starting place for ME/CFS.

The latest researcher is Neil McGregor in his talk at the Emerge Australia symposium earlier this year. He said that he thought the gut dysfunction was causing most of the problems in ME/CFS and the dysfunctional gut was maintaining them.

I have several years worth of data I've collected but this is just my view. You are just as entitled to your view. I respect your view and many people share it. My view, is just a different one.

 

[ryan31337]

It would be a boring place if we all agreed on everything!

I do agree that the gut is shaping up to be absolutely pivotal for anything autoimmune, for sure.

 

[Rufous McKinney]

I"ve done so much gut work and massive dietary adjustments. And its improved its operational capacities quite remarkably.

But other symptoms get worse.

Was reading IBS is reported to be around 11%. So if ME type illness is say around 2%....what is going on in these two subsets? Its likely our version of IBS is somehow unique, and interfacing with the other problems.

I rather doubt ME is A thing, with A cause. I'd welcome more diagnostics to determine if in fact its just some other rare illness we've chosen to ignore, but my insurance has little interest in any of this.

It takes a huge pile of will- to move forward with pursuit of a remedy.

 

[Matthew_2]

If there really is a root cause and we are on the verge of identifying it, that would be truly wonderful; and I am inspired by the confidence with which @joejack102 kicked off this thread. The articles I have read, and the interviews and presentations I have watched have left me with an empty feeling. In addition, I look at the funding. HIV had a ton of urgency behind it. Where is that same urgency for ME/CFS? HIV, for instance, is a relatively rare disease, but it pulls in upwards of $30 billion. By contrast, ME/CFS, which affects over a million people gets what - a few million? Given these numbers and the many young people who have had their lives stolen from them, there should be so much more passion and money involved in this.

 

[Wishful]

What evidence is there for a single cause in a vast majority of patients? And why a single cause? Why not 2, 3 or 10 causes?

The majority of us do have some things in common: PEM, this fatigue-like effect, the 'some treatments work once, then never again'. To me that points to a common element, such as a specific cellular dysfunction in combination with a feedback loop that predisposes us to positive feedback. There would be many ways to trigger that dysfunction and feedback, and many ways to bias the feedback, all causing the same critical change, such as how well the mitochondria work (just one possibility). Downstream, you would have multiple effects that vary with the victim's other genetic, epigenetic, and other variations.

I consider it unlikely that PEM can be caused by several completely different core dysfunctions. My PEM has at least two different triggers, and two different delay times and maybe recovery times, but the symptoms feel very similar, so I expect somewhere in my body there's something that is altering in the same way, regardless of the trigger.

 

[Likaloha]

I hope that there someday is something that helps most of us....I am afraid in my case my brain damage is so severe that I am hoping just for some energy and less pain!

 

[ljimbo423]

I hope that there someday is something that helps most of us....I am afraid in my case my brain damage is so severe that I am hoping just for some energy and less pain!

I was mostly bedridden for several years and many times I felt so sick and energy depleted, I felt like I was going to die.

I'm now fairly mild. ME/CFS researcher Jarred Younger, who is studying brain inflammation in ME/CFS, says he sees no evidence of permanent brain damage in this disease.

I would have to agree with his view completely, based on my experience and improvement.

 

[percyval577]

I think the structure which account for fatiques in general are the basal ganglia (which also have been characterized as the gate to the thalamus).

This structure then would be affected in a specific manner in CFS different to other fatiques e.g. in CF or PD. The disturbance may occur from different triggers or pathways.

So I think that a cure may involve highly personalized interventions as well as some general influence to help the wrongly working structure up.

 

[ryan31337]

Before I get into it, I want to echo @ljimbo423's sentiment and say I respect other's views here and don't dismiss them as impossible, we're all just guessing...

The problem I have is that everything mentioned is speculation with no proof. I can't help but be reminded of Occam's razor...by considering it a single cause we're valuing an unknown, undetectable and inherently complex explanation over any evidence to the contrary. There is also an understandable bias/wishful thinking involved in the expectation that some switch can be simply flipped and cure everyone.

I consider it unlikely that PEM can be caused by several completely different core dysfunctions.

Its my poorly defined and simplistic proposition but lets consider that core issue is Autonomic Dysfunction. I mentioned the structural cervical issues (CCI, AAI etc.) earlier that present with symptoms meeting ME/CFS criteria, these issues involve an explainable cause of autonomic dysfunction & feature PEM. We also have Primary Biliary Cirrhosis, in which Julia Newton sees similarities with ME/CFS, i.e. demonstratable PEM & ANS issues. Then there's a variety of AI diseases that feature PEM, more commonly when they involve SFN and thus impact the ANS (Sjogren's, APS etc.). The common denominator here seems to be impairing the autonomic nervous system.

Most ME cases should have some common dysfunction--a cellular abnormality or whatever--which could be treated. If that is treated, the sensitivity to triggers or modifiers would no longer be an issue.

Relating that logic to the above cases: the common dysfunction is the ANS involvement, the triggers are the underlying structural/immune issues. If you somehow treat the ANS and stop it malfunctioning, will your structural spine problem go away? Would your liver stop failing? Would auto-antibodies reduce and IEFND increase?

Its easy to dismiss these examples as misdiagnoses and not representative of 'real' ME/CFS, but when the NIH CFS study dismissed 1/3 of its subjects in the first week because they found their very carefully selected CFS patients actually turned out to have dissimilar rare diseases....surely that makes the possibility for complete heterogeneity a more plausible idea?

 

[Hopefulone]

My question for everyone is: What do you imagine the cure will look like? I'm not talking about a temporary fix or pill that "masks" the problem, but something that treats the underlying cause. Will it be a brainwave treatment? A surgery to repair/replace a major organ (adrenals, thyroid, etc)? A psychological/mental health therapy that changes our chronic thought patterns? An anti-viral treatment? A vaccine? Etc?

An excellent question. I have had ME/CFS for over 25 years and I am very reluctant to contemplate the word "cure".

At the moment, my health continues to improve dramatically. You may have read that my recovery started as a result of being given stroke medication in hospital. For more information about what happened see: https://forums.phoenixrising.me/threads/fatigue-continues-to-diminish.77862/ and https://forums.phoenixrising.me/threads/could-it-work-for-anyone-else.77895/

Although I am almost back to feeling relatively normal again, I like to call this process a durable long term remission. This is because I think that many ME/CFS sufferers have subtle differences in their biochemistry and genetics from ordinary people. For example, I have an abnormal requirement for essential fatty acids, have difficulty recovering from viral infections, and I am convinced that I have inherited the tendency to succumb to ME/CFS from my grandmother.

 

[Hopeful1976]

I was mostly bedridden for several years and many times I felt so sick and energy depleted, I felt like I was going to die.

I'm now fairly mild. ME/CFS researcher Jarred Younger, who is studying brain inflammation in ME/CFS, says he sees no evidence of permanent brain damage in this disease.

I would have to agree with his view completely, based on my experience and improvement.

Hey @ljimbo423 I too know my gut is a major player in my m.e. Can I ask what has helped you recover your gut? Thanks

 

[ljimbo423]

Hey @ljimbo423 I too know my gut is a major player in my m.e. Can I ask what has helped you recover your gut? Thanks

It's been a long slow learning process. I'll give you the "readers digest version".

I started, when I was mostly bedridden, by just slowly cutting back on junk food like cookies, ice cream, etc. Even just that gave me die-off symptoms from gut bacteria dying off, so I had to go very slowly.

Then I did the same thing with carbs. Then I added in supplements that helped to prevent PEM and flares from the bacterial die-off. Supps like BCAA's, coq10, Alpha lipoic acid, vitamin b-1 and worked my way up to fairly high doses of all of these.

Then I added in probiotics, anti-bacterial herbs and prebiotics. These are the things that have moved me from mostly bedridden to fairly mild.

It's not easy and it's not fast BUT I no longer suffer like I use to! I can also walk for half an hour without PEM and do 6-7 hours of physical activity a day. I can't walk for a half hour every day without PEM but the fact that I can do it at all, still amazes me!

 

[Moof]

I find it hard to believe in a simple cure, to be honest, mainly because I can't think of another chronic illness that has that kind of magic bullet. Gaining an understanding of a disease mechanism is a looong way from putting it right; bodies are incredibly complex systems, and diseases affect different people in different ways.

I think it's more likely to be comparable to other long-term illnesses. A combination of drugs and strategies that help will be compiled; they'll work better for some patients than others, for reasons that are annoyingly resistant to explanation. We're already on that path, but with a better grasp of the underlying pathology, we'll be able to fine-tune it. I really feel hopeful that we'll be able to improve people's lives significantly.