How Much Longer? ME Advances: Projected Timeline for Tx or Cure

[Cam Newton]

There are some crazy predictions, and I don’t want to get into an argument. However one sign of hope is that knowledge and technology is exponential, and transferable to similar problems. 5 years of technological progress now may be more than 20 years of progress 50 years ago.

Not to mention the actual signs of hope via current ME/CFS research.

 

[nryanh94]

Honestly I think the answer to how long depends entirely on what the underlying cause is. If it is neurological in nature I think it may take longer due to how little we truly know about the brain

 

[Belbyr]

Honestly I think the answer to how long depends entirely on what the underlying cause is. If it is neurological in nature I think it may take longer due to how little we truly know about the brain

Considering how many people have small fiber neuropathies, I bet many are walking around as 'cfs' when actually they have an autoimmune disease.

 

[percyval577]

However one sign of hope is that knowledge and technology is exponential,

This is right. Luckily now.

But never stop thinking on your own, the human wit is not exponential.

I think the leading research teams ... I'm confident this is where they will find the root cause of ME/CFS and obviously they must think so too or they wouldn't be focused on these things.

This disease is somehow special. I am a bit afraid that researchers could not have switched on their wit enough.

 

[ljimbo423]

This disease is somehow special. I am a bit afraid that researchers could not have switched on their wit enough.

I understand your skepticism.

Having recovered a significant amount of my health by treating the very things the leading researchers are focused on, i.e. - my gut, mitochondria, immune system and low grade brain inflammation.

Gives me a lot of hope that they are focused on and researching the right things.

 

[percyval577]

@ljimbo423 , I just wanted to edit my post and write after quoting you:

I don´t want to disagree, but ...

 

[Belbyr]

I just got back from visiting NOVA (Dr Klimas's team and Dr Klimas) for the first time. There is hope, there should be some studies coming out soon of things we can take to reduce neuro-inflammation that cross the blood/brain barrier. Also we need to be looking forward to the NIH presentations in the first week of April.

I see PR is about to shut down for a couple days, I will try to post about my initial visit sometime soon in the treatment section maybe...

 

[perrier]

I just got back from visiting NOVA (Dr Klimas's team and Dr Klimas) for the first time. There is hope, there should be some studies coming out soon of things we can take to reduce neuro-inflammation that cross the blood/brain barrier. Also we need to be looking forward to the NIH presentations in the first week of April.

I see PR is about to shut down for a couple days, I will try to post about my initial visit sometime soon in the treatment section maybe...

thanks Belbyr, every morsel of information and news is eagerly awaited. How will we know where to find it??

 

[prioris]

I've had it for nearly 60 years so lived in the very dark ages. You don't wait for a cure, you take what you know about yourself and the knowledge base around you then experiment with natural and alternative things. You try to cure yourself. As you find new information, you experiment some more.

You ought to also realize there are different levels of science. The true sciences are mostly not accessible to the public sector. They likely know what causes of these diseases are but they decided a long time ago to limit what the public sector knows. Most of the fundamental sciences are built on grand lies. This impedes progress. It doesn't prevent progress because people work around those limitations. That's why engineers exist. If it was important to cure you, they would. It just isn't so you have to accept that reality.

The last thing you want to do is be waiting. Just take what's out there and try to do something with it. Also understand that real cures will be driven by natural medicine and alternative things. Not conventional medicine.

 

[Stretched]

...You ought to also realize there are different levels of science. The true sciences are mostly not accessible to the public sector. They likely know what causes of these diseases are but they decided a long time ago to limit what the public sector knows. Most of the fundamental sciences are built on grand lies...

Doesn’t this overlook the role of a free market and competition - reasearch results pay, there’s no hiding that!

 

[prioris]

Doesn’t this overlook the role of a free market and competition - research results pay, there’s no hiding that!

128 companies control over 43 thousand international corporations
the global economic system is tightly controlled. much of the control
ultimately leads back to insiders

there is technology off limits to public, for example, tunnel boring machine, antigravity craft

surface boring machines have to dig and transport material from excavated holes. elon musk primitive space tech and boring machines are for public consumption. plus very uneconomical relative to off limits technology.

secret deep underground tunnels use nuclear powered boring machies that melt the rock. besides instantly creating solidified smooth walls, no material needs to be transported. these can excavate tunnels with average earth material at 5 miles per day while bedrock is 1 mile per day. there use to be a picture of one. it looked about 80-100 feet in diameter. really massive. people will say there is no proof but one has to read between the lines. it's an open secret. there are thousands of miles of excavated tunnels and underground cities all over the world. their primary purpose is to continue civilization after global catastrophe from the cosmos which is a cyclic occurrence. it's why they hide history. it's the same way on other planets with civilization because they face similar cataclysms.

on the other hand, there is already a dirt cheap cure for 70% of arthritis in world - borax/boron - that much of the public doesn't take advantage of. it requires an individual to develop awareness. it's been known for decades.

 

[frozenborderline]

Summary: we don't understand anything and I don't expect a cure.

The onsets are too various and the symptoms too diverse to create useful groups to study. I expect in 80 years we will begin to understand all the subtle long-lasting effects a virus or trauma can have on gene expression and immune activity and metabolism and nerve function. But not soon. We don't have the tools.

But i'm not without hope.

If we zoom in on vascular and rheological issues we may be able improve symptoms related to blood flow, like POTS and maybe brain fog. This part of the body is relatively simple (compared to the brain or immune system at least!) and it has lots of interested and well-funded scientists looking for new puzzles to sink their teeth into.

I'm also hopeful that progress in understanding the microbiome could help reduce severity for some people. Expect major breakthroughs in FMT in the nest 15 years. There's a huge amount of study going on.

this is a bleak outlook, but most likely correct if research proceeds at the current rate.

However the error here is not allowing for the possibility of some kind of drastic intervention that totally changes the political climate for research funding.

This is not something that people should be trying to “predict”, rather it’s something that needs to be demanded -sort of like that Marx quote about philosophers heretofore trying to interpret the world but they should be changing it.

Getting a cure to this illness is not just some dry scientific problem, it can be greatly accelerated by some kind of tipping point w /activism. AIDS research probably looked slow and bleak at a certain point.

So I think it’s pointless for all of us to try and predict how long this takes to happen. At the current rate, it would take forever. However it’s possible to intervene in the process. If we got 200$ million plus a year a cure would happen within the next two years.

 

[Belbyr]

I agree with you @debored13 on principal. I think the CFS and Dysautonomia researchers have all the evidence in the world this is biological. They are even starting to put some of the pieces together. My hopes are that big things happen at this NIH meeting in April. We already have big institutions like Columbia, Stanford, Mayo Clinic 'somewhat' , and others in this... We just need the .gov to acknowledge it and fund it.

If Pharma companies and the .gov could realize how big our numbers are, there would be huge investment. I bet between all the funny names we are called (cfs, fibro, pots, dysautonomia, crps, etc) were combined, we would be around 25 million Americans.

 

[prioris]

Why would you need so much money. It could be done dirt cheap.
All we need is for them to allow access to their first tier science and more advanced medical knowledge.
All that takes is a website and server with their knowledge base on subject

Let's say we went the other route and got 200 million dollars ...
most of it would go to corruption, cover up and dead end research.
Look at Gulf War Illness and AIDS ... they still maintained the lies and cover up
GWI is essentially a form of CFS
Money is spent all the time but it is still a mystery (not really, the vaccines caused it)
Anybody thinking throwing money will bring out the truth is deluding themselves
There is no political will to make it happen.
Their game plan would be to just drag out the research as long as possible for decades but give patients hope that never materializes except very tiny steps

My position on any funding is that it would have to go to a truly independent group
The group can't be brainwashed with their medical school training either
but then i think why not just demand they cut to the chase and demand the release their advanced knowledge

The best plan is you figure out how to cure yourself with whatever scraps of knowledge you can find. i realize it is hard but that is the hand you have been dealt.

 

[frozenborderline]

Why would you need so much money. It could be done dirt cheap.
All we need is for them to allow access to their first tier science and more advanced medical knowledge.
All that takes is a website and server with their knowledge base on subject

Let's say we went the other route and got 200 million dollars ...
most of it would go to corruption, cover up and dead end research.
Look at Gulf War Illness and AIDS ... they still maintained the lies and cover up
GWI is essentially a form of CFS
Money is spent all the time but it is still a mystery (not really, the vaccines caused it)
Anybody thinking throwing money will bring out the truth is deluding themselves
There is no political will to make it happen.
Their game plan would be to just drag out the research as long as possible for decades but give patients hope that never materializes except very tiny steps

My position on any funding is that it would have to go to a truly independent group
The group can't be brainwashed with their medical school training either
but then i think why not just demand they cut to the chase and demand the release their advanced knowledge

The best plan is you figure out how to cure yourself with whatever scraps of knowledge you can find. i realize it is hard but that is the hand you have been dealt.

You’re wrong, aids activism achieved huge funding increases and at the time aids was basically a death sentence now it’s basically an annoyance. There’s no way this can be done without more money. We have some really smart researchers working on it but so much of research is mundane labor that requires lab assistant, money to jump through bureaucratic hoops for clinical trials, sophisticated equipment and money to pay participants. You’re so wrong on this one. Wrong wrong wrong. More funding is needed

 

[frozenborderline]

I agree with you @debored13 on principal. I think the CFS and Dysautonomia researchers have all the evidence in the world this is biological. They are even starting to put some of the pieces together. My hopes are that big things happen at this NIH meeting in April. We already have big institutions like Columbia, Stanford, Mayo Clinic 'somewhat' , and others in this... We just need the .gov to acknowledge it and fund it.

If Pharma companies and the .gov could realize how big our numbers are, there would be huge investment. I bet between all the funny names we are called (cfs, fibro, pots, dysautonomia, crps, etc) were combined, we would be around 25 million Americans.

The main problem is that we’re actually sicker than most aids activists were at the time. And we don’t have enough healthy allies. I could never make it to a protest or risk time in jail while this ill. Lobbying might help a little bit aggressice militant activism gets the goods. Look at ACT UP.


There’s no point calculating how likely we are to ge a cure except as a coping mechanism. It’s something that we can directly affect, not just a natural process that happens without political intervention.

 

[prioris]

Behind the cause of AIDS deaths in US during the 80s was the hepatitis B vaccine
they predicted millions of deaths in 1984 ... i said bs and that is what it was
also the so called immune treatments killed many people who would have stayed healthy
AIDS requires a cofactor
behind the AIDS deaths in Africa during those early years was the smallpox vaccine
the areas most effected were the vaccinated areas
we could prove they were murdered with names of vaccinated but
Belgium claims millions of Africa records were lost
Pentagon said millions of records of the vaccinated soldiers (GWI) was lost
the US records at the NYC blood center were deemed private because they were gay
if you believe that, i got a bridge i will sell you
the statistics on AIDS can't even be trusted
Much of the activism was fake.
Many AIDS groups aided and abetted the cover up in face of absurd CDC story on how it spread.
Same with veteran groups in regards to GWI
The powers that be know most people rather stick their heads in the sand than face the truth

CDC really stands for Center For Disease Coverup
as long as that veil of secrecy exists, you will be long dead by the time they announce a cure

 

[frozenborderline]

Behind the cause of AIDS deaths in US during the 80s was the hepatitis B vaccine
they predicted millions of deaths in 1984 ... i said bs and that is what it was
also the so called immune treatments killed many people who would have stayed healthy
AIDS requires a cofactor
behind the AIDS deaths in Africa dueingthose early years was the smallpox vaccine
the areas most effected were the vaccinated areas
we could prove they were murdered with names of vaccinated but
Belgium claims all the records were lost
Pentagon said the vaccinated soldiers records for GWI was lost
the US records at the NYC blood center were deemed private
if you believe that, i got a bridge i will sell you
the statistics on AIDS can't even be trusted
Much of the activism was fake.
Many AIDS groups aided and abetted the cover up in face of absurd story on how it spread.
Same with veteran groups in regards to GWI
The powers that be know most people rather stick their heads in the sand than face the truth

as long as that veil of secrecy exists, you will be long dead by the time the get a cure

Of course I don’t trust the government motives necessarily but it’s pretty widely known that because of research, aids is now easily treatable w/anti retrovirals. I know people who have benefited from treatment personally.

I think you seem to believe that just because people in power are always corrrupt that what they say is always the diametrical opposite of the truth. I don’t think this kind of conspiratorial contrarianism usually leads one to the correct conclusion.

If you think that Ron davis, who’s son is sick, wouldn’t have the correct motives To solve this if only he had more money, I don’t know what to say to you. You are totally lacking in connection to consensus reality. Yes the CDC is evil and corrupt etc but really it’s more bureaucratic inertia and corruption than any grand conspiracy with coherent goals. HIV denialism always leads to ridiculously over complicated theories.

 

[prioris]

I think you seem to believe that just because people in power are always corrrupt that what they say is always the diametrical opposite of the truth. I don’t think this kind of conspiratorial contrarianism usually leads one to the correct conclusion.


You are totally lacking in connection to consensus reality. Yes the CDC is evil and corrupt etc but really it’s more bureaucratic inertia and corruption than any grand conspiracy with coherent goals. HIV denialism always leads to ridiculously over complicated theories.

To first part ... NOOOOOOOOOOOOOO!!! ... I do my due diligence.
To second part ... WOW!!! ... you live in the reality most people live in
here is a couple phrases that will start to impinge on your reality ... magnetic reversal, grand solar minimum

 

[RogerBlack]

There are some crazy predictions, and I don’t want to get into an argument. However one sign of hope is that knowledge and technology is exponential, and transferable to similar problems. 5 years of technological progress now may be more than 20 years of progress 50 years ago.

Not to mention the actual signs of hope via current ME/CFS research.

It takes typically 15 years to go from 'Oh - that is the biochemical pathway of the disease' to getting the first candidate drugs through drug development, animal studies for toxicity and effectiveness in biochemical pathway informed trials, phase I, II and III clinical trials.
And any drug going into this process may crash out at any point because it's not effective, or causes kidney cancer or something.

Some aspects of drug discovery have become faster.
The rest of the process remains fairly similar.
Unless the biochemical pathway involved can be treated with existing off-the-shelf approved drugs or supplements 'off label', this process is lengthy.
Note that AZT was first developed to have antiretroviral properties (it was originally an anticancer drug) in 1974.

In 1985, following the discovery that AIDS was cause by the retrovirus HIV, AZT (and other candidate compounds) began to be rushed through testing.
This was an already existing compound, with some mouse safety data already available, for a disease actively killing people in obvious ways, so it was a 'perfect storm' to get it approved fast.
The only way it could have been better would be if AZT had gone through human trials as an anticancer agent, or even been approved.

If the biochemical pathway was found tomorrow, and existing drugs do not suit, it's likely to be 15 years or so until a developed new drug is available - if that drug actually works.

Due to PR reasons, barring massive changes, there is going to be no massive campaign to vastly accelerate the process.

The best case is stuff like Rituximab.
If it had worked, it would likely have been available 'on label' last year, from a discovery in 2009 that it might help.

(And of course, if you could convince your physician, many would have likely been willing to prescribe late 2017 if the phase III had concluded sucessfully).
Eight or nine years till 'widespread availability'.

Then there is the problem that it's not unlikely that CFS has at least two or three different subtypes of differing origin, needing different treatment.