Poll: When do you brutally honestly think there will be a cure for ME?

[Viala]

It is optimistic.

I remember waking up once around 4am and feeling perfectly fine, no pain, no fatigue, no CFS. Just like it was before. Then, within about two hours I watched as all symptoms came back. Maybe there is some clue in it. On the other side it is a bit sarcastic that a process that can be switched on and off so quickly, can also take years of life.

 

[Consul]

My experience with multiple full-but-temporary remissions is that ME is a state that we can switch into and out of over a space of minutes, which implies that the core dysfunction is one of those rapid reactions (protein synthesis or some such thing).

Ron Davis has actually talked about this, ppl going to bed with mecfs and waking up free of the disease the next day. I didnt have too much faith in that but since rapid remission have happened to you as well i guess i have to reconcider.

 

[ljimbo423]

I remember waking up once around 4am and feeling perfectly fine, no pain, no fatigue, no CFS. Just like it was before. Then, within about two hours I watched as all symptoms came back. Maybe there is some clue in it.

The ability of this illness to go into remission, even if for a few hours, suggests the possibility that once the cause is found, for many of us, if not most, the turn-around could be fast and relatively easy.

There hasn't been any findings of permanent damage done by this illness in the research either, as far as I know. Again, a good sign, for a quick recovery once the core issue is found.

Having said that, suffering even a month with ME/CFS is a nightmare that I don't wish on anybody. I've had it for 45 years, but I still have hope of recovery.

How long will it take to find the core issue and cure? I really can't even begin to guess. My hope is very soon.

 

[Viala]

There hasn't been any findings of permanent damage done by this illness in the research either, as far as I know. Again, a good sign, for a quick recovery once the core issue is found.

So many of us are searching for a solution, that statistically speaking, something should come up real soon. It may even be a clue from a stranger, who thinks totally outside of the box. Which would be funny, considering all the research that we do. Years sometimes, well... That would be ironic, but I'm all for it.

 

[Rufous McKinney]

something that treats key aspects of ME will likely come forward in the nearer future. Reducing a symptom, or making it a bit more tolerable, like via plasmaphersis, instance. They'll find something they can filter out.

Cures: full on cures Im a bit skeptical, but perhaps in future world 2350, they will finally understand the body.

 

[wabi-sabi]

Yes, the lack of actual damage is definitely grounds for optimism.

Do we have this documented somewhere, or is it based on remission stories?

 

[halcyon]

But there doesnt appear to be any obvious tissue damage in mecfs, and maybe 1/20 are able to somehow recover from the disease.

Other than dorsal root ganglionitis, muscle composition changes, and loss of white/grey matter and wiring changes in the brain, no there is no frank ongoing tissue damage in ME that would be comparable to MS that I'm aware of. UBOs in ME MRI scans were noted before in some cases, as well as oligoclonal banding in spinal fluid, but I believe both of these are rare. 1/20 recovery seems way too high from what I recall, I believe it's 1 or 2%, possible lower.

In MS there is damage done and nobody is able to get out of it on their own, isnt that right?

MS is a relapsing/remitting disease in some cases, just like ME is in some cases. Some cases of MS remit on their own without intervention I believe. What is absolutely wild to me is that you can take an MS case with a brain that looks like swiss cheese on an MRI, but they might still be able to function, even work, while a case of severe ME can have a completely clean MRI yet they can barely move or feed themselves. That is some pretty powerful biology we're talking about here, even if there is no obvious tissue damage involved.

 

[Rufous McKinney]

no there is no frank ongoing tissue damage in ME that would be comparable to MS that I'm aware of.

There appears to be vulnerabilities with collagen and connective tissue which I wonder about reversibility.

I don' t think my fingerprints are coming back...

 

[Rufous McKinney]

Do we have this documented somewhere

do the handful of folks who had mechanical treatments, have they reported on any of these other things reversing or improving?

 

[MonkeyMan]

Wow, very interesting to see the poll results. So much pessimism! I'm trying to reconcile this pessimism with Whitney Dafoe's message of hope earlier this year (a portion of which I've pasted below). So is what Whitney wrote just empty words? Or is he closer to the truth than us who are not intimately involved in Ron Davis' cutting-edge research?

I believe that as a community, we can hold each other up in this final chapter of the great suffering of unsolved and prejudiced ME/CFS. We are part of history, a history that is being written right now and is soon to change dramatically.

I’m not going to make any exciting claims this year about a cure or treatments because there are too many unknowns and I feel ME/CFS patients took my attempts at excitement about the real progress we are making too literally last year. I don’t know if this is the year we will find a cure. But I do know that research is progressing at an incredible rate. Ronald Davis is trying to disprove the metabolic trap theory and he cannot yet disprove it. His team has successfully created the metabolic trap in yeast. This is huge. They are now going to test FDA approved drugs to see if they can get yeast that is trapped out of the trap. Literally any day, they could stumble on a drug that brings the yeast out of the trap completely.

Then they test it on human patients next, because these are FDA approved drugs that do not need lengthy trials. If there are drugs out there like Abilify that took us 40 years to find, there are surely drugs out there that could cure us if taken in the right way.

So 2022 is the year of hope for ME/CFS.

Love,
Whitney

 

[GlassCannonLife]

Wow, very interesting to see the poll results. So much pessimism! I'm trying to reconcile this pessimism with Whitney Dafoe's message of hope earlier this year (a portion of which I've pasted below). So is what Whitney wrote just empty words? Or is he closer to the truth than us who are not intimately involved in Ron Davis' cutting-edge research?

Hm I don't know. He's been consistently optimistic. I just based my vote on what has happened in the past 30 years and what has happened with other difficult to treat illnesses (MS, HIV/AIDS, cancers, etc).

 

[wabi-sabi]

So is what Whitney wrote just empty words?

Not at all! His hope keeps me going.

I don't always manage to feel hopeful myself, so it helps a lot that he can. Whenever I feel down, I read his words and feel better.

 

[Gijs]

I think that this disease never ever will be cured and the cause will be unknown for more then 100 years.

 

[Cinders66]

Other than dorsal root ganglionitis, muscle composition changes, and loss of white/grey matter and wiring changes in the brain, no there is no frank ongoing tissue damage in ME that would be comparable to MS that I'm aware of. UBOs in ME MRI scans were noted before in some cases, as well as oligoclonal banding in spinal fluid, but I believe both of these are rare. 1/20 recovery seems way too high from what I recall, I believe it's 1 or 2%, possible lower.


MS is a relapsing/remitting disease in some cases, just like ME is in some cases. Some cases of MS remit on their own without intervention I believe. What is absolutely wild to me is that you can take an MS case with a brain that looks like swiss cheese on an MRI, but they might still be able to function, even work, while a case of severe ME can have a completely clean MRI yet they can barely move or feed themselves. That is some pretty powerful biology we're talking about here, even if there is no obvious tissue damage involved.

which we haven’t fully identified yet have we (noting the metabolic trap reference above) I don’t know what I can give to a dr to explain or show why I’m so severe. When we do identify it, it might be frightening, but there is the fact that some people who exhibit severe ME in The first two years with very similar symptoms to the rest of us, have gone on to make massive improvements Which is intriguing. Unfortunately the tales of reversibility have probably added to the reluctance to take ME seriously And do the research, it was used as an argument that if some can recover we all can. .

 

[hapl808]

I think it is unlikely to be cured before a definitive diagnostic test is developed. I can think of very few modern illnesses where the cure (or effective treatment) preceded a clear diagnostic of the illness. I'm not very optimistic on a cure, but because of Long Covid I think there's at least some potential for better diagnostics. Hopefully not just a diagnostic that distinguishes Long Covid from ME/CFS just so we can be eliminated from research or treatment.

 

[Long Haul Mono]

According to Wikipedia...

"Several descriptions of illness resembling those of chronic fatigue syndrome have been reported for at least 200 years."

...and...

"They published the first working case definition for CFS in 1988."

I want to be optimistic, and I watched several YouTube videos from Doctors/Specialists giving presentations or talking about their research in general, saying an effective treatment is "...not far away", but here we are, decades later and still... nothing.

I live in hope.

 

[godlovesatrier]

I think Prusty said 10 to 15 so I just went with his wiser opinion.

 

[katabasis]

I answered the poll with '6-10 years'. This is probably slightly too optimistic, but I think there are a number of reasons for optimism.

As numerous people have pointed out in this thread, there's every indication that ME/CFS is a reversible, temporary state, not the result of permanent damage to the human organism. Between a lack of evidence of irreversible damage and the cases of 'overnight remission' (few and far between though they may be), I think that when ME/CFS is fully understood, there will truly be a cure, not merely a treatment. Whether the medical community reaches this understanding all at once or by degrees over decades remains to be seen.

However, we're already seeing some promising research, such as that regarding the metabolic trap theory, as well as HPA-axis dysfunction. For the latter, in fact, there's already a highly auspicious study for for the corticotropin drug CT38, which is a CRFR2 agonist that is believed to modulate the balance of the HPA axis. Here's a good write up of the study's results. Again, it's unknown at this point whether CRFR2 is a key target in fully reversing the effects of ME/CFS, or if its limited to improving symptoms to a degree. But the 'sustained symptom improvement' seen in the study makes me very hopeful that if this compound gets through clinical trials it will end up being a big step for ME/CFS treatment.

In my mind, the biggest factor extending the time it will take to cure ME/CFS is simply lack of funding, or even more broadly, the failure to function of the medical research industry. As we all know, this disease is massively underfunded (that any progress at all has been made by this point is kind of a miracle). But also, there's no guarantee that any medical research will continue, such as in the event of a third world war, or some global natural disaster perhaps relating to climate change. Regardless of your political leanings, I'm sure we can all agree that recent years have shown us that the robustness of our political institutions has been somewhat overstated.

 

[Wishful]

On the other side it is a bit sarcastic that a process that can be switched on and off so quickly, can also take years of life.

I imagine it as a switch somewhere in our brain; just a simple old wall switch that snaps up or down. Switching the ME state is as easy as flipping that switch. We just don't know where that switch is or how to reach in there to flip it. Unfortunately, the little spring in that switch has failed, so it tends to switch itself to the ME position. Thus we need to move the switch and somehow stick it in the non-ME state. The good news is that we've proven that there are multiple ways to flip the switch, so that means that there are multiple possibilities for treatment. I triggered remission on prednisone, cumin, and T2, plus some other temporary remissions that I didn't identify the trigger for. Hmm, that's a good idea for a new thread: What triggered your temporary remissions?

Do we have this documented somewhere, or is it based on remission stories?

It's more a lack of evidence of physiological damage, despite all the searching that's been done.

 

[VisualEffect]

Cortene hypothesis explains ME/CFS very accurately. Maybe they are right and it is possible to reverse receptor upregulation in the brain.

State switching and feeling normal for short periods of time can be explained by normal neurochemical/micronutrient/mitochondrial balance in the brain.