List of ME/CFS Recovery and Improvement Stories

[fT3g0]

Very interested in this thread. Would be useful to achieve a sample size that makes it more and more representative. Does anyone know if there are some kinds of databases or anything for recovery cases?

What I've found so far:

This woman attributes her recovery to Ubiquinol/CoQ10 and Ozone Therapy:

Another case, recovery attributed to exercise and yoga, but didn't really do GET: https://www.healthrising.org/blog/2018/09/06/dan-moricoli-recovery-big-me-cfs-fm-map/

Heavy metal detoxing: https://www.healthrising.org/blog/2...kyle-mcneases-me-cfs-recovery-story-detailed/

I disregarded the sites where they want to sell you their recovery plan, looks sus to me.

 

[Hip]

Very interested in this thread. Would be useful to achieve a sample size that makes it more and more representative. Does anyone know if there are some kinds of databases or anything for recovery cases?

Yes, it would be good to have a larger sample size. But unfortunately recovery from ME/CFS is not so common, so for that reason you don't find that many success stories.

Also, often the recovery or improvement is idiosyncratic: it works for one patient, but when others try the same treatment, it does not help. So you then get a one-off success story.

Some ME/CFS treatments though do work for other patients too; treatments which have a track record of helping multiple patients include Valcyte and oxymatrine.

Thanks for the links to improvement stories you posted.

Heavy metal detoxing: https://www.healthrising.org/blog/2...kyle-mcneases-me-cfs-recovery-story-detailed/

This guy did lots of ME/CFS treatments so it's hard to pin down what actually worked for him. And no details given about the chelation agents used, or the heavy metals test which was used.

Another case, recovery attributed to exercise and yoga, but didn't really do GET: https://www.healthrising.org/blog/2018/09/06/dan-moricoli-recovery-big-me-cfs-fm-map/

There was also a 2015 newspaper article about a woman with moderate to severe ME/CFS recovering by yoga.

This woman attributes her recovery to Ubiquinol/CoQ10 and Ozone Therapy

Would you have the timecode where she says ubiquinol + ozone was what cured her?

 

[fT3g0]

Yes, it would be good to have a larger sample size. But unfortunately recovery from ME/CFS is not so common, so for that reason you don't find that many success stories.

Also, often the recovery or improvement is idiosyncratic: it works for one patient, but when others try the same treatment, it does not help. So you then get a one-off success story.

It's idiosyncratic but there are patterns. I'd prefer to first try out what helped 20 people than what helped 2.

Would you have the timecode where she says ubiquinol + ozone was what cured her?

15:16-17:05 and 26:12-26:37 (also attributed it to removing infected wisdom teeth which I forgot to mention)

 

[Hip]

15:16-17:05 and 26:12-26:37 (also attributed it to removing infected wisdom teeth which I forgot to mention)

Thanks for those timecodes.

I think the trouble with Meagan's videos is that she tried many different therapies at more-or-less the same time, and I get the impression she may not know herself which therapies worked for her and which did not.

In another video, Meagan mentions she tried IV hydrogen peroxide, IV ozone, ozone major autohemotherapy, and had the infected wisdom teeth removal.

Sushi on this forum went into remission from ME/CFS for a few years after IV hydrogen peroxide (but thinks it may have caused some mild but permanent blood vessel damage). After that Sushi relapsed.

If I had to place bets, I'd say the IV hydrogen peroxide most likely helped Meagan, rather than Q10, a supplement which lots of ME/CFS patients take without noticing much benefit. And possibly ozone major autohemotherapy might have helped a bit, as one Italian study found it is mildly beneficial for ME/CFS. The infected wisdom teeth removal might have contributed also. But I don't think this is a useful story, because we cannot pin down the treatment which worked.

By the way, I am not sure Meagan's statement that 100 mg of Q10 ubiquinol is equivalent to 600 mg of Q10 ubiquinone is correct. My understanding is that for under 40s, there is little difference between these two forms of Q10.

 

[junkcrap50]

Another case, recovery attributed to exercise and yoga, but didn't really do GET

There was also a 2015 newspaper article about a woman with moderate to severe ME/CFS recovering by yoga.

What's the idea behind yoga curing their ME/CFS? They never had CFS to begin with? Pacing/GET actualy working (other recovery stories mention it)? Increased parasympathetic tone & normalizing dysautonomia?

In the past, yoga made me feel great afterwards despite my CFS. But I never stuck with it. Don't know why. Thinking it may now help with my sympathetic dominance.

 

[Hip]

What's the idea behind yoga curing their ME/CFS?

I don't know, but with the newly-discovered link between ME/CFS and spinal/cranial conditions like craniocervical instability (CCI), it perhaps throws a new light on why yoga might help some patients, given that many yoga asanas stretch and tone the spine and neck.

And as you say, the fact that yoga is thought to up-regulate the parasympathetic nervous system might also have some bearing.

I spent many years doing yoga when healthy, but after developing ME/CFS found that yoga asanas were uniquely exhausting for me. I have no trouble doing a daily brisk 40 minute walk, but find just 5 or 10 minutes of gentle yoga quite tiring.

And rather than getting the increased clarity and calmness of consciousness that I used to experience with yoga, nowadays with ME/CFS I find yoga instantly saps my mental energy and thereby reduces consciousness and increases brain fog. So I've tended to shy away from yoga, and have never properly tried it as a potential ME/CFS treatment.

 

[Wishful]

And rather than getting the increased clarity and calmness of consciousness that I used to experience with yoga, nowadays with ME/CFS I find yoga instantly saps my mental energy and thereby reduces consciousness and increases brain fog.

That shows the complexity of ME. For some people, working those neural pathways that way might clear some fatigue toxins, or improve blood flow to that part of the brain. In you, perhaps those same changes have negative effects on the cells involved. Maybe it's related to cerebrally-induced PEM. It's hard to think of yoga as a stressful activity, but it does involve greater cell activity in parts of the brain, so more localized mito activity, more waste products, etc.

 

[Tiffyshea]

This is soooo helpful! Thank you so much @Hip!

 

[EddieB]

What type of doctor in the United States will prescribe this?

Because my doctor won't. He tells me I have to go to Stanford and I"m not going to Stanford.

I would think any doctor could prescribe it, but most probably won’t. You would have to find someone else who will. I’m having this discussion now with my immunologist, who is considering prescribing me it or valcyclovir.

 

[junkcrap50]

What type of doctor in the United States will prescribe this?

Because my doctor won't. He tells me I have to go to Stanford and I"m not going to Stanford.

It is a supposedly a risky drug to take. Thoughts differ, but Dr. Peterson of Incline Village said he wouldn't take or prescribe it, and he thinks Vistide is far safer, which most doctors regard as dangerous. Can talk more about it in a different thread.

 

[Treeman]

Another item with Meagan's story is she was speaking in her video 8 years after she first became ill. I believe time can help to reduce symptoms with many sufferers, I believe that's an important point with my illness. We all know one of the most important items we all need is plenty of rest, don't over stress the body and we feel better, 8 years of rest must be helpful with many people who get ill.

 

[Abrin]

I spent many years doing yoga when healthy, but after developing ME/CFS found that yoga asanas were uniquely exhausting for me. I have no trouble doing a daily brisk 40 minute walk, but find just 5 or 10 minutes of gentle yoga quite tiring.

I have the exact same problems as you with yoga. Even when it came to something as simple as doing bed yoga.

My husband bought a 'yoga trapeze' for me a couple days ago because over the last six months I have been wondering if it would help by taking away a little of the extra mental and physical energy drain that I am finding with yoga. I haven't really been able to use it yet because I am still waiting for him to finish building the support brace for it.

Can't say that I am really hopeful over this experiment but I'll let you know how it goes.

 

[hunter1899]

I didn’t see Valtrex on this list. Am I missing something?

 

[Hip]

I didn’t see Valtrex on this list. Am I missing something?

I've got some Valtrex stories which I will add soon.

 

[hunter1899]

I've got some Valtrex stories which I will add soon.

appreciate it Hip. Very helpful post. Speaking of helpful posts, you had another one that broke down all of the treatment options for PEM, CFS, etc. I just saw if this morning and now I can’t find it. It listed creatine as one PEM fixer. Where is that post located??

EDIT: found it!

 

[Hopefulone]

This is a thread for ME/CFS recovery or improvement stories, detailing patient accounts of treatments which have led to full recovery or substantial improvements in their overall ME/CFS symptoms...

Thanks for this posting this very interesting topic, and for mentioning atorvastatin. As you have shown, there are a great variety of treatments that have helped a wide variety of people.

Also, often the recovery or improvement is idiosyncratic: it works for one patient, but when others try the same treatment, it does not help.

It's idiosyncratic but there are patterns. I'd prefer to first try out what helped 20 people than what helped 2.

Like many people, I was wondering why has no single treatment has been found that is effective in helping more than a small proportion of ME/CFS patients? Looking at the bigger picture, is it possible that a treatment will only help a small subset that have exactly the same type of ME/CFS?

Could it be then, that ME/CFS is not a single illness. Rather, could ME/CFS encompass a number of very similar but different illnesses that match the current diagnostic criteria?

 

[godlovesatrier]

https://www.elizabethrider.com/epstein-barr-virus-reactivation/

Not sure if anyone has posted this. Liz seems to attribute recovery to Lauracidin, echinecia and lemon balm tincture (lemon balm is supposed to be great for ebv infection), alot of Autohemotherapy and diet change.

There are several blogs like this, it doesn't say specifically they were diagnosed with CFS or ME, but I would imagine they were to begin with. Even so I guess we can't include these as it's too vague a recovery story. Even so Lauracidin appears a lot of these ebv recovery stories, as does it seems ozone therapy. But selenium is also mentioned, as are other things.

 

[Bowser]

This is incredible work. Thank you.

 

[Wishful]

Could it be then, that ME/CFS is not a single illness. Rather, could ME/CFS encompass a number of very similar but different illnesses that match the current diagnostic criteria?

It's certainly possible, but I prefer the theory that there's a core dysfunction that we all share, but there are a lot of different triggers for it, and a lot of different downstream dysfunctions that depend on our individual bodies. The treatments that work for some people are treating downstream problems or one of several upstream triggers.

This fits with the temporary remissions. Some things can treat the core dysfunction directly or indirectly, which results in a full remission from ME. Unfortunately, whatever is responsible for the core dysfunction seems good at adapting to treatments and returning us to the ME state. ME might be just one protein production rate, with its own feedback loop and target level, and something has changed that target level.

 

[godlovesatrier]

Totally agree with you @Wishful I do hope we will get biomarker tests for each core dysfunction, but that seems like a way off. Then we can look at ways to cure the disease, or at least make huge inroads. It's definitely what I'm most excited about, assuming it arrives within the next 5 years.