Do people recover?

[Tunguska]

There are some things I forgot, in case it helps someone.

Along with those 3 ridiculous high dose substances (nobody takes them in those doses, believe me), I started mouthwashing with xylitol. I found it hard to believe it would do much, but after reading some studies I think it's plausible it affects the microbiome since you always swallow a little, plus the mouth. This was a lot of strong drugs and modulators together and I think probably the combination was more important than any single one (though that is a guess).

For the circadian rhythm, it turns out riboflavin is particularly useful. I used to try to use it for brain, me/cfs and other disease symptoms, but in reality its single best use is in circadian rhythm (FAD). Basically pure high dose B2 powder on waking (and if not tolerated you try a different pure powder brand). It also modulates the microbiome but I think everyone's already been there.

I'm guessing it was not one thing or the other that helped, but the combined improvement of gut and circadian rhythm. I never bought into the single pathway or single drug explanations.

The whole mTor protocol thing was still of some use in all this, and helped relieve various symptoms, but I apply it more toward enforcing circadian and natural rhythms. I found some uses for amino acid restriction - it's all temporal.

Finally, I started using phenibut and it has done wonderful things for my life, despite the tolerance and withdrawal issues. I used to think I was getting benefit from opioids but phenibut has done much more for me. I still have permanent daily issues that would cripple me otherwise but it's helped me to feel more hopeful about all of this. I hope you all find something to give you some hope, it's nice.

 

[Mithriel]

Before CFS, ME was a totally different illness from post viral syndrome which was fatigue and ill health which could last for a few years but usually resolved in about a year. This became conflated with CFS and I think it accounts for a lot of the recovery. Glandular fever can also have a long course but often resolves in months to years even if people have been very affected.

True ME is often less severe to begin with but if you have it you should really consider it as a lifelong illness but one where it is possible to live symptom free. Many disease are like this, diabetes, thyroid disease and so on.

The reason it is important to consider it in remission rather than gone is that so many people on forums have thought they were recovered but then pushed themselves too far and ended up very severely affected. Healthy people can take up marathon running in middle age but that sort of thing should be avoided if you have ever had CFS just in case.

I have known quite a few people who managed to have a career and home life as long as they paced themselves, so it is not without hope.

 

[notmyself]

after 1 year and half i have recovered , i remember at my worst feeling lost suicidal without any hope,my body was so weak,,,but now i am strong again, i compete with people younger than me in sports and mostly i win...i can run swim, play football tennis again without pem and insomnia...i didin t take any treatment , it jsut happen after some viral infections...i am 100% sure that those colds and infections switch back something , because after those i suddenly feel well again...it can happen to everyone...please belive that is possible, i am one example and there are others like me!

 

[Snow Leopard]

The reason it is important to consider it in remission rather than gone is that so many people on forums have thought they were recovered but then pushed themselves too far and ended up very severely affected. Healthy people can take up marathon running in middle age but that sort of thing should be avoided if you have ever had CFS just in case.

I'm not sure this is true. If you are genuinely recovered, you should be able to train for a marathon and run it no problem.

The problem is this "recovered with limitations" mindset - I see it a lot, people claiming to be recovered when the fact is these people are still ill, just much improved from where they were at before.

 

[Mel9]

B

I'm not sure this is true. If you are genuinely recovered, you should be able to train for a marathon and run it no problem.

The problem is this "recovered with limitations" mindset - I see it a lot, people claiming to be recovered when the fact is these people are still ill, just much improved from where they were at before.

But is it worth the risk? Until we know more about what causes MECFS it might be safer to take up safer forms of exercise than marathon running when feeling ‘better’?

 

[WoolPippi]

I'm not sure this is true. If you are genuinely recovered, you should be able to train for a marathon and run it no problem.

The problem is this "recovered with limitations" mindset - I see it a lot, people claiming to be recovered when the fact is these people are still ill, just much improved from where they were at before.

I find “normal people” have a plethora of conditions preventing them from training for a marathon.

I am recovered but I have a string of conditions. But they are other conditions. I can feel the difference between them and CFS clearly. With cfs my body just could not cope: with an intruder or with something in the cells and the imune system, hindring even the basics of functionality.

Nowadays I deal with low blood pressure, low cortisol, hormonal problems, vitamin and mineral problems, mitochondrial problems, stress and IBS. But not the debilitating thing that was ME. That truly was something else. I’m very scared it will come back. Or that I will contract Lyme or somesuch. Until then my body can cope with all the things and strains. Even though I am not healthy it feels great.

PS I had cfs for 8 years, starting at age 36. The first 4 I spend in bed, not able to remember my own name, very weak.

PS2 although I threw everything and the sink at it, I cannot claim that I caused the recovery. I'd like to think I did but that's just vanity. Just like I cannot claim I made myself ill. Psychologists and dumb people like to think I did, but that's just stupidity.

 

[Vegas]

I'm not sure this is true. If you are genuinely recovered, you should be able to train for a marathon and run it no problem.

The problem is this "recovered with limitations" mindset - I see it a lot, people claiming to be recovered when the fact is these people are still ill, just much improved from where they were at before.

I think you are right. A complete recovery should allow one to return to, or, for the first time, train to participate in something like this. Humans are endowed with this capacity for prolonged bouts of physical endurance and it is one of the biological differences that separates us from other species. It would seem as if very few people recover such an ability, but a true recovery should allow one to do such things with appropriate training.

My purely anecdotal experience is such that "recovery" takes years. It is my belief that it also has to correspond to fundamental changes in gene expression. The epigentic processes of acetylation, biotinylation, methylation, etc. are sometimes subject to profound shifts when faced with certain stressors, but the evidence for prompt restoration of gene function through therapeutic methods, suggests that this process of fixing the systemic breakdown happens slowly.

I think those who claim rapid recoveries from SEVERE cases of ME/CFS, in all likelihood, didn't have ME/CFS, and obviously far too much ambiguity exists about what this term means anyway. This term always requires qualification. Obviously severity, age at onset, and disease duration are predictors of recovery, but I feel that patients with ME/CFS unnecessarily look at these as barriers to recovery versus prognostic factors.

In my opinion, reversing a Dauer state and normalizing the corresponding metabolic derangements is most certainly not going to be done in short order. I no longer experience the many dozens of symptoms that once plagued me, in fact, I don't really have any residual symptoms, except my energy envelope is not as expansive as it once was. This leads to more rapid muscle fatigue and discomfort than non-patients and some periods of tiredness or fatigue. It seems the many symptoms of the condition abated fairly quickly, but restoring bioenergetics is a slower process. For me, there have been no instances of remission but rather some symptom variability that became decreasing frequent, though not always linearly, until those symptoms eventually disappeared. Perhaps surprisingly though, despite the fact that I do moderate intensity exercise and I don't have the reasonable ability to do the rigorous physical activity I once did, overall I feel better than I did before crashing a little over nine years ago.

 

[frozenborderline]

I can't see what good this question/topic does. It's good to be realistic, but given how poor the diagnostic process is with cfs it's very unlikely that we have an accurate statistical picture of how many people recover. hopefully that picture will be changing soon. regardless one can either choose to live with it or not... choose to live with what is the question I guess

I don't think either hyping up the few recovery stories to unrealistic proportions OR doing the opposite and claiming that those people certainly never had cfs does anyone any good. the best thing is to look for similarities between your case and someone else's and look at if you think what helped them may help you. There are stories of people having full recoveries from a nebulously defined fatigue using only eating organic, meditation, stuff like that... in those cases I doubt the person had CFS. but in a lot of cases it's harder to tell. I know someone who recovered from what sounded a lot like cfs using thyroid hormone, which is of course highly unorthodox. he was not arrogant about it and didn't claim to have had CFS definitely, just honestly listed his symptoms etc... the fact that i know a couple stories like this keeps me going... these stories are plausible, they're from people i know, etc.

 

[frozenborderline]

B



But is it worth the risk? Until we know more about what causes MECFS it might be safer to take up safer forms of exercise than marathon running when feeling ‘better’?

im not sure that marathon running is healthy even for "healthy" people. I often fantasize about what I would do if i were recovered. instead of the intense cardio i used to do i might stick to strength training with occasional short cardio/hiking... at least for awhile, until i was less scared of relapse

 

[Eve18]

There are some things I forgot, in case it helps someone.

For the circadian rhythm, it turns out riboflavin is particularly useful. I used to try to use it for brain, me/cfs and other disease symptoms, but in reality its single best use is in circadian rhythm (FAD). Basically pure high dose B2 powder on waking (and if not tolerated you try a different pure powder brand). It also modulates the microbiome but I think everyone's already been there.

Finally, I started using phenibut and it has done wonderful things for my life, despite the tolerance and withdrawal issues. I used to think I was getting benefit from opioids but phenibut has done much more for me. I still have permanent daily issues that would cripple me otherwise but it's helped me to feel more hopeful about all of this. I hope you all find something to give you some hope, it's nice.

@Tunguska What dose do you mean by high dose B2?

How much Phenibut do you take and how often? What do you do about the tolerance and withdrawal issues?
Thanks.

 

[EtherSpin]

when you do a general web search you get people conflating 400 types of random lethargy with ME/CFS and calling that "Chronic Fatigue" and then you get heaps of tales of the simple thing you need to do to fix "Chronic Fatigue" and the remarkable thing is that the exact opposite things are recommended, go no carb,go starchy,load up on vitamins, drop all drugs and supps and get X hours of sunlight and oxygen, drink coconut oil, avoid all oils and so on !

when you find folks around places more specialised like this forum it seems the only stories of recovery amongst people informed of symptoms are folks in teens and early 20s TBH

 

[WoolPippi]

it seems the only stories of recovery amongst people informed of symptoms are folks in teens and early 20s TBH

I am 47 yo and recovered. Fell ill at age 35. Diagnosed at 37. Recovered at 45.

Forum member sueami is a mature woman also and she recovered completely.

There is not one solution to fit all, there are so many bodily systems involved once you start to show symptoms that it's hard to find the one culprit.

Two things are for sure:
1. this illness does not have a psychological cause
2. do not attempt sweaty sports or exercises. There's something wrong with the energy supply in your cells and aerobic exercise will deplete your cells.

 

[EtherSpin]

im not sure that marathon running is healthy even for "healthy" people. I often fantasize about what I would do if i were recovered. instead of the intense cardio i used to do i might stick to strength training with occasional short cardio/hiking... at least for awhile, until i was less scared of relapse

for me it would be tasks that are rewarding but where as an ME/CFS patient I have felt the whole body exhaustion incurred e.g. before symptoms beginning I knew that roses and daffodils were flowers and I knew what basic vegetables where and was deadly bored when anyone spoke gardening or asked if I wanted a tour of their garden but I took up vegie gardening as I got sick, moving wheelbarrows and pacing back and forth getting compost,seaweed liquid, watering cans, packets of seed and then squatting and hand digging with little spades for transplanting seedlings into the garden beds, that stuff burns my leg muscles like hell and gets my breath/heart going. provided its not repetitive shovel stuff that would put my backout thats my fantasy, Id suddenly get 25% of my old strength back and become a toned gardener!

 

[lauluce]

im not sure that marathon running is healthy even for "healthy" people. I often fantasize about what I would do if i were recovered. instead of the intense cardio i used to do i might stick to strength training with occasional short cardio/hiking... at least for awhile, until i was less scared of relapse

EXACTLY what I think. I think that it is possible that intense physical activity might not be goo for ANYBODY, that people around the world should try, if possible of course, to avoid such activities and even avoid having a lifestyle that involves doing activities that leave you exhausted at the end of the day, that they should rest to recover every time they do an energy consuming activity. That is what I'll teach my son...

 

[lauluce]

im not sure that marathon running is healthy even for "healthy" people. I often fantasize about what I would do if i were recovered. instead of the intense cardio i used to do i might stick to strength training with occasional short cardio/hiking... at least for awhile, until i was less scared of relapse

if I where to recover, even then I would stick to less physically intense activities as hobbies, like say, chess

 

[frozenborderline]

I personally know some people that had severe symptoms, housebound , etc, of mysterious etiology, very akin to CFS but neither i or them could say for sure if they had CFS, that did recover with the use of thyroid/other things along those lines. None of these people were the types to hype this up a lot so you don't see them going into CFS forums etc., they didn't make any dramatic claims, but I trust that they recovered from what they had, which was certainly not just depression or moderate lethargy. I don't know if I know anyone bedridden that recovered though