There will never be a cure for CFS...

[brenda]

I would not be surprised if this was the case, that nutrition will cure it.

I have been on many diets but this one seems to be hitting the jackpot - a plant based nutrient rich whole food one with no oil sugar or salt. The most noticeable benefit so far and which has not occured with any other eating plan, is that I am now sleeping soundly. I cannot remember when my sleep was so deep. I expect that my body is healing due to this and I will see more and more improvements.

So after 8 weeks, I have lost 15 intractible lbs dropped blood pressure, gone from pre diabetic to normal blood sugars despite eating high carbs and as much fruit as I want. Energy up.

I am taking b12, nutritional yeast, alge sourced omega 3, amla powder (Indian gooseberry) and camu camu for Vit C.

 

[Wishful]

I can treat some of my symptoms with supplements, but that is not a cure for ME/CFS, it's just altering some of the chemical imbalances. Also, if a supplement works, it does not necessarily mean that the problem was a deficiency, it could be that an excess of the chemical alters chemical interactions in a way that reduces the symptoms.

As for the topic, I have no doubt that there will someday be an actual cure. Science is pretty powerful if there's determination behind it. Even if this is a genetic disorder, there will almost certainly someday be methods for editing DNA in a body. I think the title is more of 'there will not be a cure for ME/CFS in my lifetime', which is more an issue of politics, economics, corporate greed, etc. I'm still optimistic about an effective treatment in the next few decades, and somewhat optimistic about the possibility in the next few years. The time frame depends on whether it requires a new drug, with all the red tape delays before approval, rather than and existing approved drug (or herbal remedy or whatever).

 

[JBoneske]

CFS seems to be a bunch of different illnesses. Too many symptoms and differences to boil it down to one thing like you can with the flu or HIV.
CFS has many categories and causes I fear. Everyone has virtually different symptoms and reasons for their causes.
Hope I’m wrong.

 

[Artorias]

I'm in my 40s and pretty much resigned to the idea that there won't be a cure in my lifetime.

 

[Hopeful1976]

What a painful thread to see.
I don't want to think there will be no help.
Why write it?
Don't know about others, but what 'help' is achieved by such sorrow?

 

[iwillwin1day]

Even if the cure is found after 50 years...
Atleast it will be of no use for me. Because till then my life will be already wasted...

 

[ljimbo423]

What a painful thread to see.
I don't want to think there will be no help.
Why write it?
Don't know about others, but what 'help' is achieved by such sorrow?

Hi Vicki- I think the person that started this thread was in a crash when they did so. I know all too well what a crash does to my thinking. It can absolutely destroy any hope I had.

I have researched ME/CFS extensively, keep up with the latest research and have learned a lot about it. I feel very confident the researchers will find the cause and successful treatments.

I am convinced the ME/CFS collaboration research centers (I think there are five now, all working together) are focused on the very root causes of ME/CFS. That being the gut, brain, immune system and metabolomics.

I have also, through my research and trying different diets, supplements etc.

Gone from 80-90% bedridden, to 4-6 hours a day of physical activity and have a MUCH, MUCH better quality of life and I continue to improve, albeit slowly. So I know it can be done!


Jim

 

[Hopeful1976]

Hi Vicki- I think the person that started this thread was in a crash when they did so. I know all too well what a crash does to my thinking. It can absolutely destroy any hope I had.

I have researched ME/CFS extensively, keep up with the latest research and have learned a lot about it. I feel very confident the researchers will find the cause and successful treatments.

I am convinced the ME/CFS collaboration research centers (I think there are five now, all working together) are focused on the very root causes of ME/CFS. That being the gut, brain, immune system and metabolomics.

I have also, through my research and trying different diets, supplements etc.

Gone from 80-90% bedridden, to 4-6 hours a day of physical activity and have a MUCH, MUCH better quality of life and I continue to improve, albeit slowly. So I know it can be done!


Jim

I saw the title thread and my heart just sank...

I know what crashes are like - I have too had my fair share. They are cruel and so scary.

But I too feel that something is about to be discovered. I really feel it. And I also feel people can and do improve. Like yourself

Thank you for your positive and truthful reply to me Jim

 

[hmnr asg]

I think there is a lot of validity to the idea that we wont have a cure anytime soon. Here are the reasons why i think that:

1- Medicine has made much progress, but the amount we dont know, compared to what we know, is enormous!

2- CFS is multiple diseases. So the only thing we all have in common is a group of "symptoms", i dont think you can search for the cure based on symptoms. It's like saying you found a cure for stomach pain! A stomach pain could be due to a bad lunch, or cancer, or ...

3- So far there is zero progress. All the nice papers that are coming out only show some correlation, not causation. The correlations are also pretty weak. On top of it all, the sample sizes are tiny!

4- Also, research is conducted when medicine acknowledges that there is a lack of treatment and understanding with respect to an illness. However, most doctors are fairly certain they understand CFS. Almost all the doctors i have met have been pretty sure my problems are in my head or due to stress. My best friend that i grew up with is a family physician and he still insists that i need to just take SSRIs and exercise (he subscribes to this GET bs).

5- And the worst problem? resources! There are so many cancer research centers around the world and the best minds are working on this disease and still there is only incremental improvements. Compared to cancer there are literally no resources being spent on ME/CFS. I was looking at Dr Davis's lab, there are just a handful of postdocs! one per area of research! they have *one* bioinformatics person crunching the numbers on their tiny dataset of 20 people. Anyone who has worked in statistics will tell you 20 is pretty useless. There are individual cancer research centers (of which there are MANY) that have multiple times the size of resources and funding as Dr Davis' lab. Unfortunately ME/CFS "disappears" people, so its hard to gain some traction in terms of raising funding and awareness when we are all bedridden and as a result at the bottom of the socioeconomic ladder.

Also, there are generally two milestones in terms of developing treatment for any illness. First one is when a theory of the underlying pathology is established (basically how the disease works). The second is when they work on finding treatment. And usually there is a fair bit of time that has to pass from the first milestone to the second. And right now we have NO working theory. I know Ron Davis has done great work but really, we need MUCH more research.


Anyways, i am also going through a crash! I really hope my pessimism is CFS induced rather than grounded in reality.

 

[Hopeful1976]

I think there is a lot of validity to the idea that we wont have a cure anytime soon. Here are the reasons why i think that:

1- Medicine has made much progress, but the amount we dont know, compared to what we know, is enormous!

2- CFS is multiple diseases. So the only thing we all have in common is a group of "symptoms", i dont think you can search for the cure based on symptoms. It's like saying you found a cure for stomach pain! A stomach pain could be due to a bad lunch, or cancer, or ...

3- So far there is zero progress. All the nice papers that are coming out only show some correlation, not causation. The correlations are also pretty weak. On top of it all, the sample sizes are tiny!

4- Also, research is conducted when medicine acknowledges that there is a lack of treatment and understanding with respect to an illness. However, most doctors are fairly certain they understand CFS. Almost all the doctors i have met have been pretty sure my problems are in my head or due to stress. My best friend that i grew up with is a family physician and he still insists that i need to just take SSRIs and exercise (he subscribes to this GET bs).

5- And the worst problem? resources! There are so many cancer research centers around the world and the best minds are working on this disease and still there is only incremental improvements. Compared to cancer there are literally no resources being spent on ME/CFS. I was looking at Dr Davis's lab, there are just a handful of postdocs! one per area of research! they have *one* bioinformatics person crunching the numbers on their tiny dataset of 20 people. Anyone who has worked in statistics will tell you 20 is pretty useless. There are individual cancer research centers (of which there are MANY) that have multiple times the size of resources and funding as Dr Davis' lab. Unfortunately ME/CFS "disappears" people, so its hard to gain some traction in terms of raising funding and awareness when we are all bedridden and as a result at the bottom of the socioeconomic ladder.

Also, there are generally two milestones in terms of developing treatment for any illness. First one is when a theory of the underlying pathology is established (basically how the disease works). The second is when they work on finding treatment. And usually there is a fair bit of time that has to pass from the first milestone to the second. And right now we have NO working theory. I know Ron Davis has done great work but really, we need MUCH more research.


Anyways, i am also going through a crash! I really hope my pessimism is CFS induced rather than grounded in reality.

Thanks for this. A really long explanation as to why to have no hope!

 

[Eneia]

Right now my solution is to keep looking for good palliative care, i.e. anything that diminishes symptoms.
I too believe that we have different diseases causing the same symptoms (esp. PEM) that research has failed to find a drug for. If I had any energy I would focus on any other illness that has PEM and see the research. Sadly a lo tof other symptoms are so common that it is pointless, but imagine if we were able to power through our brain fog and not have to pay for it :-D. It would fit the courageous people that we all are, because even impaired, we could lead some kind of normal life.
I hope that bit by bit each subset will be solved.

I have been ill for 30 years (nearly all of my life) and I still think the symptoms are reversible. Good health seems so close (I’ve been moderate to mild in symptoms), like (pardon my TMI) the headache you get from dehydration and constipation, that gets cured as soon as you realise you need more water and a good bathroom session :-D (I did get an appendicectomy from those symptoms before realising I just needed water, just saying...)

Now, in our lifetime maybe a cure won’t happen, and that’s why looking for symptom alleviations while having good nutrition are to me something that needs addressing as a priority. If only as a way to prevent people in a crash to post this kind of thing :-D

And with less symptoms, maybe we can contribute to research?

I have been trying a few things lately that are getting me out of a one year crash
(Before anyone asks: Mg malate + niacin for sleep, very recently citrulline malate for a clearer brain, dribose and b12 injections before and after crash-causing activities...) among many other things that havent worked (high dose b1, coq10). The citrulline seems to make me able to plan things and actually get them done, which to me was one big cause of depression. Gone. Just like that, because a few months ago I had enough of searching for a cause and focussed on symptoms instead. Every month I focus on a different symptom to try and improve my quality of life from all sides. Once one of those stops working I’ll search again. Oh I forgot about l-tyrosine (started last week) that seems to lift my ahedonism. I am now feeling the best I have ever felt in all my life with ME within 6 months of changing my focus. Prob helps being positive in this post...


Anyway, we’re not the kind of people to give up. We have highs and lows, and I am sure some of us will find a cure in their lifetime. I know someone personally who had exactly all my symptoms, and knows why. He was treated by antibiotics several times over a short period. Because he quickly guessed what caused his issues he was able to focus on ways to repair the dammage while knowing the cause. He is now back to normal after clinic FMTs. I think this is an example of how people with an acute phase can achieve, and as he had a hint of what had happened to him, he was never led to discover ME/CFS and stop there, in spite of having the same symptoms. Whereas we kept looking because we didnt know what gave us the condition and ended up here.

So, all this to say we don’t have to give up but in low phases maybe stop stressing out about looking for a cause, and try new supps. Or set up an exchange ring if money is an issue? I have little income but I keep £30/$40 per month for new stuff to try. The stuff that works the best has ended up being some of the least costly supps I have tried, which helps too!

 

[Tally]

1- Medicine has made much progress, but the amount we dont know, compared to what we know, is enormous!

2- CFS is multiple diseases. So the only thing we all have in common is a group of "symptoms", i dont think you can search for the cure based on symptoms. It's like saying you found a cure for stomach pain! A stomach pain could be due to a bad lunch, or cancer, or ...

3- So far there is zero progress. All the nice papers that are coming out only show some correlation, not causation. The correlations are also pretty weak. On top of it all, the sample sizes are tiny!

4- Also, research is conducted when medicine acknowledges that there is a lack of treatment and understanding with respect to an illness. However, most doctors are fairly certain they understand CFS. Almost all the doctors i have met have been pretty sure my problems are in my head or due to stress. My best friend that i grew up with is a family physician and he still insists that i need to just take SSRIs and exercise (he subscribes to this GET bs).

5- And the worst problem? resources! There are so many cancer research centers around the world and the best minds are working on this disease and still there is only incremental improvements. Compared to cancer there are literally no resources being spent on ME/CFS. I was looking at Dr Davis's lab, there are just a handful of postdocs! one per area of research! they have *one* bioinformatics person crunching the numbers on their tiny dataset of 20 people. Anyone who has worked in statistics will tell you 20 is pretty useless. There are individual cancer research centers (of which there are MANY) that have multiple times the size of resources and funding as Dr Davis' lab. Unfortunately ME/CFS "disappears" people, so its hard to gain some traction in terms of raising funding and awareness when we are all bedridden and as a result at the bottom of the socioeconomic ladder.

1. True, and I wish doctors would acknowledge this instead of running a few basic tests and saying "There's nothing wrong with you." but we don't need to understand whole medicine to get cure for ME/CFS. There's already so many cures and treatments for different illnesses that we have no idea why or how they work. But they work..

2. We don't know that it's different illnesses. There's some research pointing to subsets, there's other research (like metabolic studies) showing it all has the exact same underlying mechanism. Shouldn't claim anything until more proof becomes available. Researchers working on finding a cure are not fighting symptoms, that's what our clinicians are doing. Cortene, CDR, metabolic trap etc. are all aiming to fix the potential cause.

3. This is true and I am looking forward to seeing new research published soon. Research that should be coming out in the next few months to a year should be bigger replication studies which is unheard of in ME/CFS, so that's exciting.

4. This is very easy to change. Most doctors respond well to information from CDC, NIH, IOM and other legitimate sources if you bring it to them. If they don't change their mind, change your doctor ASAP.

5. Cancer is so different than ME/CFS that it's pointless to compare. Cancer is more than a 100 different diseases that are deadly, that involve constant changes and constant mutations (btw, huge strides have been made recently in cancer research with liquid biopsy for screening, and immunotherapy for treatment.)

Dr. Davis has so many collaborators all over the world, you shouldn't focus just on his lab. Dr. Xiao has always been analyzing Severely Ill data from Harvard, and now Harvard has a whole ME/CFS Collaborative Center thanks to OMF. Dr. Jonas Bergquist is in Sweden. Dr. Naviaux has his own lab.... etc.

No one who has worked in statistics will tell you dataset of 20 is useless. It depends on so many other things. And since they are severely ill the signals we see will be stronger. Also, they are getting compared to mildly ill patients as a cross-reference.


______________

I find this kind of doom-and-gloom posts pointless and inaccurate. Yeah, it's going to be difficult, so let's use our precious energy on advocacy, fundraising, spreading awarness etc. rather than writing walls of text about our darkest fears about the future which so far no one has been able to predict.

 

[Wishful]

I don't think that the majority of ME/CFS consists of multiple diseases with similar symptoms. I think there's a core cause that can be triggered by multiple factors, and which can produce some of a range of symptoms, depending on individual variations. For example, perhaps there's a feedback loop involving microglial cells and mitochondria, and some individuals have various genetic and environmental factors that bias it towards positive feedback. Have too little Bwhichever, too much calcium, not enough of a particular family of phytochemicals, not enough sleep for some reason, and a viral infection pushes you over a threshold and locks you into an abnormal state. For one individual, this would produce symptoms 1, 2, 5, 7, and 9; for a different one, it would produce 1,3, 4, 5, 6, and 10. Different diseases, or just different variations?

If this hypothesis is correct, the researchers could find a root cause common to 90+% of ME/CFS victims, and possibly a treatment based on that. Treatments aimed at specific symptoms might work on a smaller percentage of victims, since we don't all have the same group of symptoms, or even the same pathways to symptoms. Then there would also be a subgroup that might have similar clusters of symptoms, but not caused by the root cause of ME/CFS, though they might share some chemical imbalances caused by different problems.

What makes me most optimistic about a treatment (or cure) is the fact that many of us have temporary remissions. Some are triggered by drugs (prednisone, for example); some seem to be spontaneous. These remissions show that it is possible to trigger a return to normal function. We just need to find out ways to do it reliably.

Actually, the fact that we have triggered remissions, even if it's only lasted for hours, refutes the thread title. I have been cured of ME/CFS, multiple times, lasting for hours. The title isn't 'permanent cure', so I hereby state that ME/CFS has been cured. <add legal disclaimer in teeny, tiny print and obscure legalese about the cure lasting only a few hours>

 

[CFS_for_19_years]

What makes me most optimistic about a treatment (or cure) is the fact that many of us have temporary remissions. Some are triggered by drugs (prednisone, for example); some seem to be spontaneous. These remissions show that it is possible to trigger a return to normal function. We just need to find out ways to do it reliably.

Actually, the fact that we have triggered remissions, even if it's only lasted for hours, refutes the thread title. I have been cured of ME/CFS, multiple times, lasting for hours.

Speaking of spontaneous remissions, I had one that lasted 2 or 3 days right after receiving an acupuncture treatment. It was as if someone had flipped a switch. I felt 100% changed, not simply "better." I love swimming so much that I went and swam a regular workout length (as opposed to my little workout I usually did when sick).

Had I been expected at that time to return to a 40-hour workweek performed while mostly being on my feet it wouldn't have been a problem. I was so sad when my illness returned full force.

 

[Stretched]

I have come to view CFS as an intangible, like a feeling which is biochemical, i.e. in the brain. I think we all have this dynamic which is so far undiscovered in its piecemeal constituency. It’s like the reaction of a chameleon changing colors. It’s cause, though unknown as yet is likely a psychoactive state of mind, triggered by stress of some sort, likely inputted through the eyes, even when manifestations are physical.

This is a neurological rabbit hole difficult to explore because the science is so esoteric and complicated and neuroscientists have more pressing agendas. I wonder how many of them even take time to consider the nature of CFS relative to their specialized fields. Or, are they even aware of the problem, much of which has neurological correlations?

Many psychoactive drugs already yield dramatic palliative results for the various stages of CFS, e,g. dealing with cognitive issues, crashes and PEM. They, the various rxs can already change the course of CFS, maybe not cure it, but make it tolerable, doable?

In conclusion, I would raise research banners around the various neurological camps. This calls for a classic paradigm shift in focus to research and funding in neuroscience. It seems reasonable that the time is right. Infectious disease stalwarts have for decades beat the same old drums looking for viruses, immune dysfunctions and mitochondrial disorders, and dietary experiments with little to no effective results.

 

[Kenshin]

It’s cause, though unknown as yet is likely a psychoactive state of mind, triggered by stress of some sort, likely inputted through the eyes, even when manifestations are physical.
.

Could you elaborate on this? Sounds interesting.

 

[Wishful]

Sorry @Stretched, but that psychoactive hypothesis doesn't match my experience. I didn't undergo any particular stress or change in life before my ME started. I believe a tetanus booster a few months previous set my body in a state for ME to be triggered. Then I developed a type IV food sensitivity (from immune system dysfunction after the booster), which gave me the same symptoms as ME, and those symptoms remained after I cured the food sensitivity. I expect that ME/CFS is a dysfunction of several interlocked systems, including immune and mitochondrial. It's a complex interaction, so I'm not surprised that decades of minimal research effort hasn't identified the abnormalities. It's not one system failing catastrophically, it is minor abnormalities interacting to an overall failure. Think chaos theory, where a minor change can have a major effect.

 

[JES]

In conclusion, I would raise research banners around the various neurological camps. This calls for a classic paradigm shift in focus to research and funding in neuroscience. It seems reasonable that the time is right. Infectious disease stalwarts have for decades beat the same old drums looking for viruses, immune dysfunctions and mitochondrial disorders, and dietary experiments with little to no effective results.

Infectious disease and brain/neurology are closely related though, so I don't see how one rules out the other. There is a concept of "sickness behaviour", which is a set of behavioural changes that occur when you catch an infection. This behaviour is thought to be evolutionarily beneficial, as it assures that a sick organism doesn't walk around transmitting the disease to others and meanwhile makes the individual more likely to survive the infection. It has been theorized that this sickness behaviour has been extended and turned perpetually on in people with depression and I don't see why it couldn't possibly apply for ME/CFS as well.

And to be clear, by behaviour is not meant that the individual can train out of it with CBT, but that there is a set of adaptive changes in the body as a response to this infection. But is the infection still around in the later stages of the disease or is the body just stuck in wrong mode? Nobody seems to know for sure.

 

[Daffodil]

i dont know how anyone can say there will "never" be a cure. even HIV will have a cure one day, probably with gene editing. of course there will be a cure, just maybe not in our lifetime. there are also new treatments coming soon

 

[Stretched]

...And to be clear, by behaviour is not meant that the individual can train out of it with CBT, but that there is a set of adaptive changes in the body as a response to this infection. But is the infection still around in the later stages of the disease or is the body just stuck in wrong mode? Nobody seems to know for sure.

And @Kenshin. My hypothesis is directed specifically at neuroscience, i.e. the physical brain and its tributaries, not psychiatry, nor occasional overlaps of infectious diseases. I have copies of the trials, research and texts, even the only textbook on CFS by Byron Hyde, MD, 1995, who is still active!

My own CFS onset emerged after a Lake Tahoe vacation in 1985, 33 years ago. You would think I would be a proponent of the old line thinking which I followed each study as it occurred, but, again, it has not yielded cure results from all the varied trials around the same periphery.

In readings, studies, and personal experience I’ve tried to synthesize outside the box: what directly alleviates CFS symptoms? In the short it’s psychoactive medications. I can take Adderall for false energy and cognitive clarity, benzos for anxiety, a ‘z’ pill for sleep, methyl prednolone for PEM. Eureka! Now work backwards to the neurological systems which are involved... . These phenomena open another rabbit hole for study - maybe solutions.