Why i don't think there will be a cure for ME

[Davsey27]

It seems that there are various cause(s) and maintaining factors that differ from individual to individual after observing other patients in support groups

Looking at remission,it seems that individuals revover in different ways which makes sense given one's indivisualbiochemistry I don't think there will be a singular cure the way institutions like Stanford are looking

I don't think there is harm in trying to look into more clues or pathways and of course I cannot see the future

Yet I find it improbable that the remission rate will change much over the next decade.Perhaps closer to 10% but in my opinion I don't see it really going much higher.I hope I'm mistaken

Perhaps the % of individuals who improve[I think a good chunk of these may be those who have more access to $ and functional medicine] may go up but as far as cures/remissions while I believe researchers are looking for a cure its gonna be tough and very likely improbable.

I think there's value in functional medicine.I still think though that it's not as simple as x lab shows x number of abnormalities you fix the problem and the symptoms are gone.It

It seems that ME is much more complex than this
[Though some may get lucky taking more chances while others may get financially drained]

I honestly don't believe there will be much change and I believe that finding the right doctor,or taking a macheveliian approach may improve one's odds.Some may get lucky

Any progress,though incremental I think is a step in the positive direction even if it's a 1-5% increase in remission over the next 10-20 years as it probabilistically may increase the odds of improvement for a certain % of individuals

Yet I believe it shouldn't stop patients from researching and trying to find ways in improving or finding a cure at an individual level.

Part of this seems to be luck and I wouldn't get my hopes up very high

 

[Slushiefan]

I hear what you say here and would have agreed with you, except that in the last few months/years there have been leaps in understanding of systemic illnesses like long covid, ALS, and multiple sclerosis. They have found there are immune stem cells in adults that are genetically altered due to infection, neurons in the intestines that next trigger the brain and cause a domino effect in the immune response, and more things I can’t recall (brain fog).

The lack of treatments hurts my argument, but it takes a while to go from understanding causes to finding treatment.

I sincerely hope you have just drawn the wrong conclusion, but admit I have no real evidence to support that.

 

[linusbert]

i agree with the thread creator. there will be no cure. i will be as harsh as saying there will be no cure ever.
i believe in a few hundred or thousand years, depending how fast we can fix corruption in our governments and science, there will cfs pretty much eliminated.
i think cfs is just a symptom of a damaged energy production through various causes and exhaustion of resources.
they will find the multifactorial causes and eliminate most of them and might find things to replenish internal resources effectively.
but right now they burn 1 billion in research money for long covid and do actually nothing with it except feeding the corrupt bureaucracy.
as long as the rich and powerful are not massively affected by this, nothing will happen. and because they are not exposed to the same lifestyle as normal people are they probably never will. when we must eat the mass industrial produced garbage which is known for long to be bad, they will import their grass fed beef from argentina probably slaughtered on the plane and be fresh like 1 hour.


the dude is talking about uncoupling mitochondria as longevity and health method

 

[marcjf]

Of course there will be not. Diseases have cures, not syndromes. They have to first figure out what diseases lead to ME.

 

[Dude]

Maybe not a cure. But I think with all the attention thanks to long covid, there will be more research which eventually lead to therapies in a near future. Here are a few points that make me feel positive:

• people sometimes can go into remission
• there appears to be no organ damage, increasing the chance that the damage is reversible
• AI/Machine learning can help accelerate the search (Nancy Klimas Moonshot Study)
• More affected = more attention
• If covid doesn't go away, it will probably remain a bigger problem over time, with each reinfection increasing the risk. Which also increases the likelihood of research funding.

But overall I agree with you, a complete healing is probably an illusion. However, if I could get back to a decent life, that would be a blessing.

 

[Wishful]

My multiple temporary remissions convinced me that treatment and/or cure is possible. My ME switched completely off for about a day maybe 6+ times, from at least three different chemicals, so I believe there's a core dysfunction that might be a single chemical pathway. That pathway is affected by multiple feedback loops, so maintaining the healthy state isn't simple, but it is possible.

As Slushiefan said, there are new discoveries and advances all the time, at an increasing rate. AI has the potential to push that rate dramatically higher, so don't base your beliefs about medical progress on historical progress. In a much shorter time frame than I'd expected before, it's not unreasonable to think that someone could solve ME at home, with their home bioanalysis system and AI support (and make-your-own-drugs processor, developed by the illegal drug industry).

Also, I still think accidental discovery of a treatment is possible. I accidentally cured my type IV food sensitivity and my PEM, so I'm a strong believer in accidental treatments.

 

[jaybee00]

FWIW Some people treated with cyclophosphamide have been cured and have returned to work.

 

[hapl808]

Maybe not a cure. But I think with all the attention thanks to long covid, there will be more research which eventually lead to therapies in a near future.

I'm less optimistic, but here's how I see it.

Without Covid, we'd have a 0.00001% chance of having a cure soon and a 0.001% chance of having a widely effective treatment soon.

Because of Long Covid, that's been improved 100x. So now 0.001% chance of a cure, 0.1% chance of widely effective treatment.

Other than that, sadly I agree with OP. I know this kind of negativity hurts some, but this is one of our few places to vent and not have friends say, "Maybe something good will come up! You've got to stay positive! Anyways, I'm off to the gym - talk to you in six months."

I hope all the people who burned through $1b with surveys all get Long Covid themselves. The only thing that would improve the above numbers is if Long Covid and ME/CFS get real funding, not the $1b pittance which was still exponentially more than ME/CFS ever got.

HIV still gets $3b per year, every year. Even though they now have some effective treatments although no cure, they continue to fund it annually. So during the three years of the pandemic where we used $1b on Long Covid, they spent $9b on HIV continuing research.

If you were in med school or getting your PhD, are you going to study HIV with unlimited funds, or Long Covid with minimal funds and moderate ridicule? We're still like HIV was back in the days when they called it the Gay Plague and laughed about it.

I will support and vote for no politician who ignores this while sending money to Ukraine or elsewhere. Funding Long Covid and ME/CFS is a rounding error on Ukraine aid. I will never vote for Biden or Trump because they had their chances. I'm a one-issue voter, and I'd rather see it all burn down than to see 'the lesser of two evils' at the cost of my own life. Maybe some can see it that way, but I'm too selfish for my own health and the health of some people I care about.

 

[linusbert]

Also, I still think accidental discovery of a treatment is possible. I accidentally cured my type IV food sensitivity and my PEM, so I'm a strong believer in accidental treatments.

how did you do that?

Other than that, sadly I agree with OP. I know this kind of negativity hurts some, but this is one of our few places to vent and not have friends say, "Maybe something good will come up! You've got to stay positive! Anyways, I'm off to the gym - talk to you in six months."

i share the pessism for a generalized cure.

but thats only for a "cure". many many more people got remission or a somewhat improvement from things. its just highly individual and playing around a lot.

 

[gm286]

I don't share the pessimism because pessimism is absolutely useless when you have chronic fatigue and pain; ME/CFS or another variety thereof. The pessimism is built into the disease itself. No point in being redundant and announcing one's pessimism other than to communicate and connect with others.

Using your time trialling out medications and supplements (at the risk of further damaging oneself) is more efficient than reflecting on pessimism -- because that's what this is.

I was put on prednisone and hydrocortisone when I idiotically begged a doctor that I required some kind of poison arrow. I required the poison arrow because I wanted to make it through a vocational program and work.

I don't mind that I was idiotic. I don't mind that I developed an insidious, painful, and chronic neuropathy once an American doctor decided I should come off and that I was no longer even tolerating what steroids were doing to my body... Helping yes, but at the cost of bodily discomfort, bloat, weight gain, non-stop sweating, aging and damaged skin.

The same can be said for the effects of the third generation atypical antipsychotics Abilify and Vraylar, although I have not tried Rexulti: IBS flare, flatulence, akathisia, muscle weakness, bloat, and weight gain.

Only one week of miracle work while on both. Abilify gave me my life back and put the ME/CFS in complete remission. Cured, yes. I'll say it. No muscle weakness. No waking up feeling ill. No ill feeling or poor mood. Giddy. Happy. Confident. Satisfied. Tonic. Efficient. Awake.

The eye floaters which overwhelm my vision were still there, black and multiple. I didn't care. Vraylar worked to a lesser extent: waking up early and not at noon or later like has been the case for seventeen years.

Getting warmer is a reward in and of itself.

 

[lenora]

After having this and other neurological "problems" for at least 40 years, I can assure you that AIDS research could at least be used by us. Also the MS research....totally wrong in both cases.

I feel this is many diseases and while there will never be a blanket cure, there will things that help with the individual illness. We are even all alike in our overt symptoms, so how can we expect a cure that covers all of us? I don't, but yes.....I have tried different treatments that have been offered for studies. To date, nothing except gabapentin for nerve pain has proved beneficial for me.

When I first began my problems.....the MRI had just been invented. It was the first time anyone could see inside the spinal cord and parts of the brain. To me that time span is yesterday....for you younger ones it must seem forever ago. It's not. Science will change and with it, benefits for our illness will follow. I just hope it's soon for all of you.

I agree that pessimism isn't the answer and comments that feed into it pull everyone down. We know what we're up against.....so look up instead of down. You may at least see a cloud. Yours, Lenora

 

[linusbert]

I don't share the pessimism because pessimism is absolutely useless when you have chronic fatigue and pain; ME/CFS or another variety thereof. The pessimism is built into the disease itself. No point in being redundant and announcing one's pessimism other than to communicate and connect with others.

Using your time trialling out medications and supplements (at the risk of further damaging oneself) is more efficient than reflecting on pessimism -- because that's what this is.

pessimism was the wrong word, i meant realism.

No point in being redundant and announcing one's pessimism other than to communicate and connect with others.

i disagree, pessimism is a powerful tool, much more productive then blind optimism.
it tells that people are unhappy with a situation, and out of unhappiness people can develop solutions to fix this unhappiness.
no revolution ever was born from optimism.
bad things need to be addressed and fixed.

 

[hapl808]

Using your time trialling out medications and supplements (at the risk of further damaging oneself) is more efficient than reflecting on pessimism -- because that's what this is.

I don't spend a time reflecting on pessimism. I'm cynical, not pessimistic - there's a difference. Pessimists don't try because they think it's hopeless so why bother. Cynics think all their efforts may be in vain, but they try anyways.

Cynics and optimists often take the same actions, they just anticipate different outcomes.

I have spent 25 years trialing medications and supplements (mostly avoided damaging myself) and an endless supply of doctors (permanently damaged from that).

I continue to do that, but I'm not going to pretend that I think everything has a happy ending.

 

[maybe some day]

I agree/sorta disagree.... I no longer get my hopes up. All the new research to me is just lip service. Nothing concrete. A cure? no, but I do believe at some point there will be treatment to lower the symptoms and inflammation. The answers are there, but its like peeling back an onion.

 

[lyran]

Well western medicine can't cure almost anything so you are probably right but there might be some treatments available in the future. Some already exist but much better treatments are needed.

 

[ruben]

Is there much evidence though that "Eastern medicine" is any better than "western medicine"?

 

[lyran]

Is there much evidence though that "Eastern medicine" is any better than "western medicine"?

No, because only western medicine gets study funding. So if, for example chinese medicine does work for some, it is only people's own experiences that won't be verified.

 

[linusbert]

No, because only western medicine gets study funding. So if, for example chinese medicine does work for some, it is only people's own experiences that won't be verified.

if i have to choose between rich pharma corporation own funded studies with crooked study design and thousand of years experience with traditional "medicine" i do not even have to think about it.

not only chinese medicine has merits to it, european traditional things work equally as well. so ask granny isnt a bad advice.
its just last century that pharma corporations discredited traditional "medicine" ... yet uses those traditional things like herbs and extracts compounds from it like metformin or penicilline based on annecdotal evidence from thousands of years.

 

[ruben]

In my decades of ME/CFS, I can't recall now how many different herbalists I've seen. Not silly many but probably between 5 and 10. Can't say I've ever noticed anything by way of improvements. I live in Suffolk UK. Have also seen 1 or 2 in London. If anyone knows a good one I'd be pleased to know. The thing is no herbalist I've ever seen has ever touched on any success stories or even partial success stories they have had.!

 

[JES]

If traditional medicine worked so well, why do western countries always rank on top in average life expectancy? Traditional medicine doesn't work equally well, at least not to find targeted treatments or cures for diseases like ME/CFS, otherwise we would have way more people cured over here with things like TCM, but it's not the case. My experience is that herbs mainly work by for example stimulating the immune system and preventing colds, but they are not specific and targeted enough to tweak what is wrong with us in a significant way.

Yep, some medicine compounds are extracted from herbs and there is nothing wrong with herbs as such. One problem is that the concentration of any single active compound is usually way too low in a herb to achieve for example much antiviral effect. With a specific compound extracted from a herb you can reach much higher levels in the body. If you tried the same with a herb, you'd end up having to take tens of grams of it at once, which would not work because of side effects.

I do believe there will be treatments for ME/CFS, symptomatic at first. Cure in my lifetime? I wouldn't bet on it.