Cure

[Boba]

Dear PR, a question.

Does anyone really believe in a cure?

This is so complex. I’m suffering everyday. The trap seems unlikely to be the mechanism . Viral persistence in the brain, gut and nerves, permanent vascular damage or autoimmunity are the most likely IMO. But what can they do about it.

As a long hauler, my trigger was Covid but I had an irritated immune system before. I consumed a lot of data and came to the conclusion, that researchers are far away from a cure. I‘m sick of tricking myself into believing in it, however I‘m open for your thoughts and reasoning.

Love

 

[BrightCandle]

Some long haulers have recovered from the vaccination, presumably because it got the immune system working and building to fight invaders and in the process found a bunch of the cells that c19 was hiding in as a consequence of that. That C19 penile dysfunction paper was a real click moment for me because it was categorical proof that clearly viruses sit around in cells in various places in the body (not just in the special ones like the brain or testicles) and can cause localized and global dysfunctions.

There are so many people long hauling in the world it is a medical crisis and unlike the poor ME/CFS patients you guys are believed and investigations pursued. I think there is every chance they will work out how to cure the persistent ones that they aren't sure of the cause yet and so far the funding to do this is only going up, C19 related stuff is getting whatever money it needs right now.

 

[Martin aka paused||M.E.]

Dear PR, a question.

Does anyone really believe in a cure?

This is so complex. I’m suffering everyday. The trap seems unlikely to be the mechanism . Viral persistence in the brain, gut and nerves, permanent vascular damage or autoimmunity are the most likely IMO. But what can they do about it.

As a long hauler, my trigger was Covid but I had an irritated immune system before. I consumed a lot of data and came to the conclusion, that researchers are far away from a cure. I‘m sick of tricking myself into believing in it, however I‘m open for your thoughts and reasoning.

Love

I believe in it.

I trust in OMF. The metabolic trap has been replicated in snails and human cells. And there is far more research done by OMF collab Centers.
But I understand your frustration. It takes very long, we hear of many setbacks. We all suffer and need fast solutions. But science is a slow process and yes: we are just starting to understand what's going wrong with our bodies.

But I don't think inflammation for example is the answer. I think it's more a downstream effect. Otherwise, we would all get cortisone chock therapies with great success.

The same goes for the autoimmunity theories. Carmen Scheibenbogen didn't come very far with that - after manyyyy years of research. Infections, yes. But I don't think they hold us back from healing because antiviral usually doesn't cure us.
I think we are on the right track. It takes time.

Martin

 

[Judee]

Does anyone really believe in a cure?

Not a cure...but remissions. The body and these pathogens (what I believe causes this) are too complex. Ken Lassessen has had 4 remissions.

I don't know if his approach is the best for everyone with this disease but I do refer to his website a lot. https://cfsremission.com/treatment/...flora-through-experienced-use-of-antibiotics/

He has a LOT of info on his site and I have to just take in tiny nuggets like the surveys on what has seemed to work for different people.

It's very easy to get lost there which can be very overwhelming but I think he has some good ideas too.

I think it will be a matter of just getting to a higher level of functionability and then pacing and a lot of self-care to try to maintain it.

 

[Boba]

Some long haulers have recovered from the vaccination, presumably because it got the immune system working and building to fight invaders and in the process found a bunch of the cells that c19 was hiding in as a consequence of that. That C19 penile dysfunction paper was a real click moment for me because it was categorical proof that clearly viruses sit around in cells in various places in the body (not just in the special ones like the brain or testicles) and can cause localized and global dysfunctions.

There are so many people long hauling in the world it is a medical crisis and unlike the poor ME/CFS patients you guys are believed and investigations pursued. I think there is every chance they will work out how to cure the persistent ones that they aren't sure of the cause yet and so far the funding to do this is only going up, C19 related stuff is getting whatever money it needs right now.

Thanks for your comment!

Your theory implies that the pathogen is the problem, which we don’t know. Could be of course. So that must be theory you believe in?

I was vaccinated and it nothing to me unfortunately. We don’t even know if it’s a placebo or which symptoms vanished. However in my case there was no cleanup of the viral debris as hoped. If the virus is the problem, than it is at a place where my immune system can‘t fight it.

PEM & Fatigue are my biggest problems.
I don’t know if it is possible to differentiate between Long Covid and CFS in my case. Obviously the pathogen is known, but the mechanism is the same. That’s why I think solving Long Covid will solve CFS as well. I have Hashimoto‘s too, like 20% of CFS patients, which again shows the connection to CFS. But this can be random as well, but I don’t believe that.

I think there is no us and them, if the mechanism is viral debris.

 

[Boba]

I believe in it.

I trust in OMF. The metabolic trap has been replicated in snails and human cells. And there is far more research done by OMF collab Centers.
But I understand your frustration. It takes very long, we hear of many setbacks. We all suffer and need fast solutions. But science is a slow process and yes: we are just starting to understand what's going wrong with our bodies.

But I don't think inflammation for example is the answer. I think it's more a downstream effect. Otherwise, we would all get cortisone chock therapies with great success.

The same goes for the autoimmunity theories. Carmen Scheibenbogen didn't come very far with that - after manyyyy years of research. Infections, yes. But I don't think they hold us back from healing because antiviral usually doesn't cure us.
I think we are on the right track. It takes time.

Martin

IMO nobody came really far with anything.

@nerd found some very interesting inconsistencies in the trap theory.

https://forums.phoenixrising.me/thr...l-inconsistency-in-the-ido-trap-theory.84067/

Don’t get me wrong, I love the trap theory! But so far they just showed that the substrate inhibition of IDO 1 works. How did they do it in snails? Are the snails trapped and show symptoms? That would be the logic of the trap working in snails for me.

Inflammation could be a result not a cause, sure, but what about the viruses they find in the brain?

I might be discussing sth which has been discussed a million times @PR. Sorry for that.

 

[Boba]

Not a cure...but remissions. The body and these pathogens (what I believe causes this) are too complex. Ken Lassessen has had 4 remissions.

I don't know if his approach is the best for everyone with this disease but I do refer to his website a lot. https://cfsremission.com/treatment/...flora-through-experienced-use-of-antibiotics/

He has a LOT of info on his site and I have to just take in tiny nuggets like the surveys on what has seemed to work for different people.

It's very easy to get lost there which can be very overwhelming but I think he has some good ideas too.

I think it will be a matter of just getting to a higher level of functionability and then pacing and a lot of self-care to try to maintain it.

Interesting. I visited his page a couple of times. I’m not sure if that’s really a way to remission. Do you know somebody whom it helped? I checked Reddit and couldn’t find anybody who improved with his approach.

 

[Judee]

Interesting. I visited his page a couple of times. I’m not sure if that’s really a way to remission. Do you know somebody whom it helped? I checked Reddit and couldn’t find anybody who improved with his approach.

No, unfortunately.

I use his site to research things when I'm about to try them or if I have noticed something helped though, and many times the things I feel a little better on, he will say others benefited from as well.

Like Thyme. I started using that for my Mom's K. Oxytoca UTIs, took some myself and noticed a bump in energy and reductions of Candida issues. Then I went to his site and found this post: https://cfsremission.com/2019/07/10/user-results-from-new/

And this one where he rates thyme as a "super herb"
https://cfsremission.com/2019/07/10/user-results-from-new/

Like I said, this disease is complicated so I don't think one person is going to solve it for everyone. When I use the info on his site though, some of the suggestions, I get positive results, just not results I have been able to maintain long term so far.

 

[Canned]

Even if there is no cure...I’d also be pleased, when it’s „just“ a treatment that allows us to live a normal life. Like thyroid hormones that you have to take for the rest of your live...

 

[lenora]

Hello Everyone.....As a very long time sufferer of this illness, I've noticed a few things along the way.

- I don't think there is just one cause of this illness;

- We can move in and out of the worst of this illness, but it does take time;

- Being hopeful is a must....we can't focus on the negatives only;

- Keeping the mind occupied in as many other directions as possible is helpful.

That world comprised people who were just beginning this journey and needed help as they went along. There are as many personalities as there are human beings. I dealt with a lot of these people by telephone, some extending into late nighttime hours. Many I never heard from again, b/c at that point I was working with people waiting to go for surgery and well, some people are just plain rude. They expect an organization to have the answers when we were just people struggling ourselves. Others overwhelmed me with kindness and were so thankful to even talk to someone who had the same illness. Attitude means that you'll do so much for people, you'll spend extra time trying to find answers to their dilemmas, etc. I'm sure you all know what I'm talking about. So that became my second life....I've gone on to have other and while I've given much, I've also received the same. So remove yourself from your problems....get lost in music, movies, books, art and other people even.

In my case, the illness has waxed and waned. I've had to spend mos. to over a year bedridden, then slowly build myself back up again. Yes, I'm getting tired of it....but I'm now in my mid-70's. I don't expect to go on forever, but I would like to see younger people helped and indeed, I think (OK, I'm going to say that I know) you'll receive so much more than was available to us in our day.

Chronic pain has been a major problem with me....and we're even seeing progress in that direction. Perhaps I'm a born optimist, but I also have days when things seem overwhelming...and they are. But next week comes, and my view may be entirely different. I can be better, but I can also be a whole lot worse. I always bear that in mind.

I commend those like @Martin aka paused||M.E. who keep a positive attitude as much as possible. It's so much easier to be the other way, but why? What does it gain us?

Yes, @Boba, it's possible that many long haulers may have had the beginning of this from before your illness....at this point, who knows? Some people will recover, but others will linger not knowing what is happening and why. Ask questions, stay informed and take good care of yourself. Only you can eat the right nourishing food, have the proper balance in your life. Enjoy what you can whenever you can. Fatigue and PEM can both be overwhelming....I agree. Go outside as much as possible....it's a world that we should all partake of, even if it means just going for the mail and saying hello to a neighbor. Don't watch the news constantly...find some humor whenever and wherever you can. I wish you well. Yours, Lenora.

 

[Boba]

Even if there is no cure...I’d also be pleased, when it’s „just“ a treatment that allows us to live a normal life. Like thyroid hormones that you have to take for the rest of your live...

I’ll take that as well

 

[Judee]

I’d also be pleased, when it’s „just“ a treatment that allows us to live a normal life.

I'd even settle for a 50% improvement. I'd be above my original baseline at that point.

Not being able to work even part-time is the worst.

 

[Martin aka paused||M.E.]

I'd even settle for a 50% improvement. I'd be above my original baseline at that point.

Not being able to work even part-time is the worst.

Yes! Agreed

 

[lenora]

Hello All (Again!)......@Martinakapaused]]M.E. I would like nothing better than to see you with an improvement of 50% or more and to return to part-time work, you too@ Judee. At the very least, new drugs that help us reach that goal are coming along....and while some will fail, others will help.

Truthfully, I don't believe in just one cure....just look at the problems individuals face, but there will be at least a few. Our best hope lies in inter-action between researchers in other states and countries. Also, their willingness to share information.

Our job is to keep our bodies in as good a condition as possible. That means proper nutrition, vitamin supplementation (but not too much), herbs, your choice. Try acupuncture if your insurance covers it, even massage and I found that didn't work on my body for many years.

Recently, I found a masseuse who is also a PT and knows a lot about our illness. She actually had me walking for the first time in probably two years (outdoors that is). Her approach was really common sense and understanding that our bodies are deconditioned and have to be built up slowly and carefully....not rushed. I'll return to her because she also knows a lot about natural healing, which I'm a fan of....it possible.

I've also found acupressure to be of use, although please don't overdo it or you could end up in even worse condition. Ice helps with pain and I use it frequently. I do take meds for anxiety and plenty of other conditions that I never thought I'd be faced with. My neurologist, cardiologist and internist are the most important of my doctors....I never change appointments with them. I make certain that all know what the other is doing, even if I'm the one supplying the reports, tests, etc. It pays off.

Always stay hopeful and as engaged with the world as possible. I know this is often easier said than done, but the pay-off is huge. Send basic information to those you're close to....you may be surprised at the understanding they'll try to give you. Better health to all of you, I hope. Yours, Lenora.