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

[linusbert]

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.

if western pharma crap worked so well, how come there isnt a cure for anything and only expensive medications to treat symptoms?
cure for diabetes? cure for heart disease? cure for asthma and copd? cure for cancer? these are the leading causes for death in the west... no cure for any of them.
and yes, we actually got some few medicines developed in the last 150 years which can save lifes in individuals. but if we look at 90% of population, these do not matter. the herd quality of life is getting worse rapidly.

western countries lead in life expectancy?
western life expectancy is already declining, and disabilities and chronic sickness is rising.
the only reason people in the west lived long the last century was because hygiene and infrastructure to provide clean water and food and get rid of shit.
which isnt a western invention, other civilizations did this already before.
actually even birds know not to shit into the own nest.

western medicine treats the symptoms and sickness of the diseases western culture cultured. diabetes, asthma, heart disease, cancer. if we wouldnt live like this, we would get this much later. kids with type 2 diabetes is a perversion western food and diet created.

the west had its pinnacle somewhere around the 1950's , since then its going downhill. we live off the old wealth. in 200 years if this continues, we will be the new ancient egypt or rome empire.

 

[JES]

if western pharma crap worked so well, how come there isnt a cure for anything and only expensive medications to treat symptoms?

western countries lead in life expectancy?
western life expectancy is already declining, and disabilities and chronic sickness is rising.
the only reason people in the west lived long the last century was because hygiene and infrastructure to provide clean water and food and get rid of shit.
which isnt a western invention, other civilizations did this already before.

western medicine treats the symptoms and sickness of the diseases western culture cultured. diabetes, asthma, heart disease, cancer. if we wouldnt live like this, we would get this much later. kids with type 2 diabetes is a perversion western food and diet created.

There are cures for many things. Vaccinate and you won't get polio (cure) among other things. Many previously deadly bacterial infections can be treated with a few weeks of antibiotics. Many forms of cancers can now be treated so well that patients have an almost normal life expectancy. Same with HIV. When I go to the dentist it's based on western medicine. Etc.

It is true that we have western diseases like diabetes 2, which are mainly from unhealthy diets and lack of exercise, not so much the fault of medicine.

The way HIV was "cured" was to pour millions of money onto it, which in turn was enabled with the help of active advocacy that received a lot of attention back in the day. Unfortunately it is true this success hasn't been replicated for many chronic diseases due to many factors, but the one thing you need is money to get anything cured.

 

[linusbert]

i updated my post before i saw your answer.

and yes, we actually got some few medicines developed in the last 150 years which can save lifes in individuals. but if we look at 90% of population, these do not matter. the herd quality of life is getting worse rapidly.

you come with some edige cases, yes we got some medicines for some sick people which will save their lives and improve those lives dramatically.
this isnt what is killing 90% of people. and this isnt the chronic disease 90% of people get.
it does not matter in the grand scheme of things.

It is true that we have western diseases like diabetes 2, which are mainly from unhealthy diets and lack of exercise, not so much the fault of medicine.

its 100% the fault of medicine and food corporations and lobbies.
people do not have a choice. BLM said its systemic racism because black people are overly obese. and they are actually right, thou its not targeted towards blacks only, its targeted against all not rich people.
no normal person in the west can afford to have the busy business life and have a good healthy kitchen. people eat in the cantina.
i live in nursing home.. do you think i have any choice of food? what do kids get in school? what students in university cantinas?
when shall people get into the sun when they work from early mornings to evenings.

if you make conscious food decisions you need time and money, a luxurary 90% of people do not have.

rich people can have the grass fed cow flown over from argentina and butchered on the flight while cooked and served between the business meetings by their cooks and secretary.
poor people walk over to mcdonals or name your favourite fastfood company of choice.

in germany i was freelance and i had this crappy food all the time. i actually always bought bio which is "organic" in the usa whenever i can. but i didnt know actually what healthy food is. nobody told me.
i followed mainstream believings of "healthy" food. and mcdonalds salad is not healthy food. just saying.
so i wasnt just "poor" i was also stupid. but not by choice. this is how our society raises and treats kids.
if somebody told me just this in my early 20s, do not buy anything from supermarket, get any food directly from grass fed organic farmers. pasture raised eggs. here are a few recipes you can have healthy food in like 20 minutes prepared in the morning.. i probably wouldnt be this sick today.

 

[Wishful]

how did you do that?

My PEM was accidentally cured by taking cumin every 3 days for 2+ years. One time I skipped it and noticed that the expected PEM didn't show up.

The type IV sensitivity disappeared (after 2.5 years of it) after food poisoning (spoiled coconut milk in curry <with cumin!>).

I'm not sure whether my sensitivity to fatty acids disappeared due to my taking carnitine, or if would have disappeared without that treatment. Likewise, my proline intolerance disappeared after 6(?) months, but I don't know what of the changes I'd made was responsible, or if disappeared due to some other factor.

 

[Wishful]

if western pharma crap worked so well, how come there isnt a cure for anything and only expensive medications to treat symptoms?

Maybe because treatments you are stuck on for life are more profitable than one pill/shot cures?

 

[hapl808]

If traditional medicine worked so well, why do western countries always rank on top in average life expectancy?

I don't think traditional medicine works so well, but are there any Western countries ranked at the top in life expectancy? I think among the top are Japan, Hong Kong, Singapore, Macau - all places the use both East and West medicine. I think Italy and Switzerland are among the only two Western countries that would make the top 10.

Vaccinate and you won't get polio (cure) among other things.

That's not a cure. Ideally, vaccination is prevention. If you contracted polio today (breakthrough infection, inadequate immunoreactivity after vaccination, etc), I don't think we could treat it much better than in the 1950's. And we still have no idea what causes Post Polio Syndrome or how to treat it.

The way HIV was "cured" was to pour millions of money onto it, which in turn was enabled with the help of active advocacy that received a lot of attention back in the day.

HIV of course wasn't cured, but it's very well 'managed' these days. Not millions, but billions of dollars every single year for decades. Just during the pandemic alone, we spent 10x the money on HIV as Long Covid.

Medicine is more of a mixed bag than we like to admit. Modern trauma medicine is a miracle, but our treatment of chronic illnesses, with a few exceptions, is sometimes smoke and mirrors.

 

[Forummember9922]

I think at some point science will develop restore points. You know how sometimes your PC gets totally screwed and Windows has these restore points where you can revert back? That but with the human body. Take a snapshot of your body while you're still healthy- will be part of routine care- and then with the use of genetic programming revert it to that state.

 

[heapsreal]

Well since the very early 1990s they have known that patients with cfsme have low natural killer cell function and there have been many studies since, many.

Why is the ball being dropped there. Why is the nk function low? How can they improve the nk function and will this improve or cure cfsme??

I do believe there was a drug that actually improved nk function and improved the outcomes of cfsme pts but for many and unknown reasons, research just doesn't get off the ground. If it did I believe they would have had an answer 20years ago. Instead we keep going around in circles year after year.

 

[linusbert]

Why is the ball being dropped there. Why is the nk function low? How can they improve the nk function and will this improve or cure cfsme??

my ideas on this,
1. there is a chronic infection going on which depletes immune system
2. there is no chronic infection going on, but instead a autoimmune process, meaning the body is burning itself up by fighting harmless body tissues
3. a combination, at first there was a infection, then a autoimmune process began
in all those cases a depletion will occur.
4. like 3, but infection still going on and also autoimmune process

if this is the right thinking, then boosting immune system might not fix the problem if its not 1., the body instead needs to correct the auto immune situation. vitamin D is known to correct immune system somewhat, but high dose vitamin D is not a known cure for cfs. so it might be something completely else.

i have seen some theories about certain virus'es modifying harmless cells by injecting its genome into them, making the immune system target those.
and then another theory that the infected virus genome is similiar like harmless body cells, which then make the body attack those as well.
the thing is , the body could sustain autoimmune process without any virus beeing there... or there is still a virus burried somewhere but body mistakenly attacks healthy cells.
if there is merit to this, then it is incredible complex to fix the problem. turning the immune system on/off will not fix either of those problems.

 

[heapsreal]

my ideas on this,
1. there is a chronic infection going on which depletes immune system
2. there is no chronic infection going on, but instead a autoimmune process, meaning the body is burning itself up by fighting harmless body tissues
3. a combination, at first there was a infection, then a autoimmune process began
in all those cases a depletion will occur.
4. like 3, but infection still going on and also autoimmune process

if this is the right thinking, then boosting immune system might not fix the problem if its not 1., the body instead needs to correct the auto immune situation. vitamin D is known to correct immune system somewhat, but high dose vitamin D is not a known cure for cfs. so it might be something completely else.

i have seen some theories about certain virus'es modifying harmless cells by injecting its genome into them, making the immune system target those.
and then another theory that the infected virus genome is similiar like harmless body cells, which then make the body attack those as well.
the thing is , the body could sustain autoimmune process without any virus beeing there... or there is still a virus burried somewhere but body mistakenly attacks healthy cells.
if there is merit to this, then it is incredible complex to fix the problem. turning the immune system on/off will not fix either of those problems.

If we go by the research and the nk function is low, either the immune system is faulty, leaving us open to many different infections and possibly cancers or there's a or several chronic infections leading to a type of immune exhaustion of the nk cells.
There is the hit and run theory where the infection happens and the immune system clears the infection but the immune system is left on ie as you refer to like an autoimmune process, which could deplete nk cell function. But I'd think if this was the case, we'd probably see short term remissions on high dose prednisone treatments and reversal of nk function but this is rare and usually the opposite of a remission occurs which makes one thinks there's possibly an infection going on. Plus a hit and run theory could leave someone with neurological symptoms thats very disabling also. But your theories are similar.

Although we don't see cures, we seem to see more positive responses from antivirals and antibiotics or combo's if the right infections are hit, which is really a poke in the dark.

The most successful treatment on a percentage bases, that would cover most infections even possibly, enteroviruses, was ampligen. Just not enough in-depth studies and enough people. Better drugs with easier use then ampligen infusions could have been invented by now if money was put into research when it was first being used???

 

[Wishful]

But I'd think if this was the case, we'd probably see short term remissions on high dose prednisone treatments

I had full remissions from my first two trials of prednisone, normal dosage. It took 5 days for the first trial to abruptly switch me out of the ME state, and only 2 days for the second, which took place some days after the first trial stopped. I tried it again some months later, and it didn't have any effect. I even managed to convince my doctor to prescribe a double dosage trial, and that had no effect either. Tricky ME.

FWIW, when I couldn't get a renewal of the prednisone, I didn't care, because I discovered that cumin was just as effective as prednisone (same effect). Sadly, cumin only provided remission for maybe a week or two (was hard to tell when it gradually stopped having its effect).

 

[hapl808]

But I'd think if this was the case, we'd probably see short term remissions on high dose prednisone treatments and reversal of nk function but this is rare and usually the opposite of a remission occurs which makes one thinks there's possibly an infection going on.

I thought that this does happen sometimes (it's even discussed in the PEM blocker thread here), but it's temporary and often leads to longer term bad outcomes. My understanding is the use of prednisone during an acute infection is where it makes things noticeably worse.

 

[Rufous McKinney]

or Long Covid with minimal funds and moderate ridicule?

THAT huge problem. Egos are involved here. Humans.

And given we've seen what a basic viral pandemic on a world wide scale, looks like, and that most governments blew it entirely....

Including they did not undertake a major effort to TRAIN medical personelle. So we have burnt out nurses and doctors, and technical people.

Meanwhile, I can assure you from direct recent experience, that I just had to pay ALL THESE people who do not deliver any medical services. We call our insurer, can 't get any help, talk to people for hours on the phone. They are all billing their hours, and exist to not deliver services.

We were directed to, oh TEN non profits who are supposed to help and frankly None of Them Did. My husband's stroke wasn't ENUF of a Chronic illness to warrant help from the Chronic Illness society. But they made sure to send surveys out, asking us to report back on all this help, we didn't receive....

 

[heapsreal]

I thought that this does happen sometimes (it's even discussed in the PEM blocker thread here), but it's temporary and often leads to longer term bad outcomes. My understanding is the use of prednisone during an acute infection is where it makes things noticeably worse.

From what I've seen it's rare. I was on pred with antivirals/antibiotics when I had a shingles flare and it does/can energise you but I didn't feel normal.
I've used low dose hydrocortisone too and it helps but not to the level of remission.
I'm sure there's a few probably feel great on prednisone but I just think it's rare in cfsme, that's all.

 

[Rufous McKinney]

I'm sure there's a few probably feel great on prednisone but I just think it's rare in cfsme, that's all.

with my HR at 180, unable to sleep, how is Prednisone a treatment?

 

[heapsreal]

with my HR at 180, unable to sleep, how is Prednisone a treatment?

I don't think it is for most. It might help a small few by reducing inflammation.
With a HR of 180, that's quite high. Have you seen a doctor about it. A wild guess it sounds like SVT, which is an electrical conduction problem that they can revert in hospital by cardioverting or medication.

 

[Rufous McKinney]

the discussion of remission, generally....

it seems to not confront other factors which come along with this illness. And life.

Like how old are you?

Because I got much worse at 65, not 32. It's hard to believe the structural damage to my body, from the protein breakdown alone, would "recover" at this stage.

I'm happy to feel better, I'll feel better tomorrow, thank you.

But something about all this, isn't going to just disappear for five hours, when so much connective tissue and muscle and structure, is affected by it. And the brainstem has been affected, I see no reason to think otherwise.

 

[Rufous McKinney]

With a HR of 180, that's quite high.

I took prednisone, forty years ago, during a bout of Mononucleosis round FOUR.

the only time I ever took anything for mono.

It was another data point for: so these doctors, offer us nothing? Why would I ever take that again? After two weeks, all the symptoms came back, just the same.

 

[MonkeyMan]

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.

@Dude, I agree with your post 100%.

Your first two bullets, I believe, correctly imply that the right treatment could bring many patients back to "normal", and do so VERY quickly. For many with ME/CFS, something is obviously gumming up the works, but it is not "hurting us", so to speak. An extremely important distinction vs. diseases like MS, Parkinson's, etc.

The problem is, humans have been too stupid, if I may put it bluntly, to find what the heck is gumming things up. Which speaks to your third bullet - AI may be the crutch that we brainless bipeds need to get from here to there.

And as far as your last two bullets, things are indeed speeding up, thanks in no small part to the attention that Long COVID is receiving. Dr. Wes Ely's research, which you kindly posted on PR today, just being one example. It's inevitable that most causal theories and most potential treatments will not stand the test of time. But if dozens and dozens are being looked at, then the chances of hitting the bulls-eye with just one of them increase significantly.

 

[heapsreal]

I took prednisone, forty years ago, during a bout of Mononucleosis round FOUR.

the only time I ever took anything for mono.

It was another data point for: so these doctors, offer us nothing? Why would I ever take that again? After two weeks, all the symptoms came back, just the same.

I don't think you understand my post about prednisone. I'm saying I don't think it is effective for cfsme, maybe a small minority of outliers but for the majority it doesn't help but has made people worse especially if they have an active infection.

My concern with your heart rate constantly at 180 was that you may have an arrhythmia called SVT, that can be dangerous and is treated in the emergency department with cardioversion and or medications to reverse the arrhythmia.