Possible CFS success story. Got much better after 4-5 years. Here's what has helped.

[arty0mk]

@Jon_Tradicionali his symptoms can be a number of conditions or deficiencies. Take what you want from it.

You can yourself rule out most of the conditions and deficiencies that can be confused with CFS, having done some blood work and hair mineral analysis. It's not rocket science, it just takes more time, requires one to do a lot of reading and apply scientific method to oneself. That's not advice, but an observation. To rule out some things you do need expensive medical devices though, but that's mainly for determining the root cause and not diagnosis. And the root cause of many CFS varieties might not yet be known. But yea, take what you want from my story of course.

 

[arty0mk]

Gondwanaland, thanks a lot for your post! I'll certainly look into that!

 

[MeSci]

Hi, @arty0mk - sorry if this has already been discussed but I haven't read the whole thread yet.

Where you state that you believe that 30 mins-daily exercise has been one of the things that has helped your improvement, are you sure that it is not the case that your improved function has enabled/encouraged you to do this increased exercise? It seems to be generally the case with ME/CFS that people who exercise when they do not feel physically well enough suffer post-exertional malaise later (usually after a delay) and if they persist in doing this they can suffer permanent worsening.

When I had an improvement brought about by a change in diet plus added supplements (a different combination from yours), I felt a natural urge to undertake more physical activity, and did it. Other people have said the same. This does not have ill-effects, as long as we stop as soon as we start to feel a little tired, and do not push ourselves beyond that.

Also, I see that you say "What I think has triggered CFS was me being raw vegan for 4 years and possibly over-training."

There have been other threads where 'overtraining syndrome'/OTS has been discussed, so at least some people believe that it is a different illness from ME/CFS. Here is one.

Your English is very good, by the way!

 

[worldbackwards]

Where you state that you believe that 30 mins-daily exercise has been one of the things that has helped your improvement, are you sure that it is not the case that your improved function has enabled/encouraged you to do this increased exercise?

I think that there's a case to be made that, once a degree of exercise is tolerated, then that in itself can be helpful and make further gains possible. But you'd have to be well enough to start with.

 

[Apple]

None of us know what CFS is. It's a pisspoor diagnosis. A man sitting on a chair in a little white room putting a lifelong label on your medical notes does not mean 'you have it' and that someone else doesn't. I find it infuriating when people come on here with success stories and people disregard it.

arty0mk clearly had something going on with his body that was causing fatigue and other issues, just like the rest of us. If he can share some information that may help even one person have a better quality of life, then that is a GREAT thing, regardless of the actual diagnosis or lack thereof. jfc.

@arty0mk I'm really happy for you. Thank you for sharing.

 

[MeSci]

ok, i dont know me/cfs. but i could do that musclewise, without feeling worse.
the last thing i can do in "crisis" phase is eating, speaking.

as said, its about one body part at a time.
ater a while one can perhaps increase - also depending on the phase (of the disease) one is in.

Sorry - but do you mean you don't have ME/CFS? If that is the case, perhaps you should make it clear in your posts; otherwise some people may be misled and try something that harms them.

 

[Woolie]

I wonder whether we as a community need a set of strategies on how to contribute to threads like this one? I get both sides. People like @arty0mk are taking the time to share with us what they feel really helped make them better. Its really generous, and of potential use to others. We want to be appreciative and to encourage people to share in this way. Thank you, @arty0mk.

But as chronic patients who've tried everything, some of us get understandably upset when we see statements like "exercise is key", when we would give anything to be able to build up our exercise levels even a bit and can't. Such statements also seem to support the very misconceptions about MECFS that have hurt us so much, both past and present. So then we wonder whether the poster really had ME or CFS. Its a legitimate question to ask, but hard to ask in a way that doesn't insult or undermine the person who offered their experience (harder still is the question of what ME or CFS is or isn't, and whether diagnosis - official or not - is really reliable).

I don't really have any solutions, just thought I'd put this out there. And I'm not criticising the people who've posted here - many have worked hard to balance their appreciation for the post with their concerns about the generalisiability of the advice.

In any case, @arty0mk, I hope this explains why sometimes responses seem a bit, well, cooler, than they might otherwise be. Regardless of that, I think all of us here do really appreciate you taking the time to post.

 

[Mij]

You can yourself rule out most of the conditions and deficiencies that can be confused with CFS, having done some blood work and hair mineral analysis. It's not rocket science, it just takes more time, requires one to do a lot of reading and apply scientific method to oneself. That's not advice, but an observation. To rule out some things you do need expensive medical devices though, but that's mainly for determining the root cause and not diagnosis. And the root cause of many CFS varieties might not yet be known. But yea, take what you want from my story of course.

I'm not confused regarding my diagnosis. It was triggered by a viral infection and possibly vaccines soon after the onset. I've had this illness for 25yrs and the root cause is no longer what is keeping me ill.

 

[Hip]

Thanks for posting your story of significant improvement @arty0mk. I very much like to read these accounts.

Supplements that helped greatly: !!!St. John's Wort!!!, !D-ribose!, Melatonin, Phosphorylated Serine.

As you know, one active component of St John's Wort is hypericin; this has antiviral effects against murine cytomegalovirus, which is similar to human cytomegalovirus. Ref: 1

Cytomegalovirus is a virus that has been associated with triggering ME/CFS. Possibly one reason why you found St John's Wort helpful is its antiviral effects against cytomegalovirus (but that assumes you would have high titers to cytomegalovirus on a blood test, which I am guessing your doctor has not provided). Although I would think the antiviral effects are not that strong, so this antiviral theory is not a very likely explanation.

Interestingly, the antiviral effects of hypericin are increased by 100-fold by light (in the presence of light, hypericin generates singlet oxygen, a reactive oxygen species which has antiviral effects against enveloped viruses like cytomegalovirus). Ref: 1

If you are interested in other anti-cytomegalovirus supplements, see this post.

without a proper diagnosis by a qualified medical professional you cannot say for sure you have CFS.

A great many ME/CFS patients do not have a diagnosis by a medical professional, and are self-diagnosed due to the fact that doctors often do not know enough about ME/CFS to provide an accurate diagnosis. Or in the case of @arty0mk's, his doctor was stupidly telling him that the symptoms are all in his head.

When in doubt that a patient might have ME/CFS, the best thing to do is to direct them to the CDC Fukuda 1994 definition of ME/CFS, or to the CCC definition of ME/CFS, and get them to check their symptoms against the checklists provided in those definitions.

If they satisfy those checklists (and if they have ruled out diseases similar to ME/CFS like hypothyroidism, celiac disease, lupus, anemia, hepatitis B or C and Lyme disease, which @arty0mk made efforts to do), then it is reasonable to assume they have ME/CFS.

From the sound of @arty0mk's symptoms detailed in his first post, they do appear very ME/CFS-like, and the fact he got benefits from D-ribose, which is known to help a subset of ME/CFS patients, perhaps provides further evidence of ME/CFS.

I guess most folks here get worse on exercicing, even if it's only moderate.

Most yes, but in a forum poll, 7% of patients had no adverse effects from physical exercise. And patients like @arty0mk who have mild ME/CFS are likely going to be much less negatively effected by exercise than those with moderate or severe ME/CFS.

ME/CFS is defined by a pathological reaction to exertion.

Under the CDC Fukuda 1994 definition it is not. Post-exertional malaise is just an option in that definition.

But not having ME/CFS is something to be grateful for, because people with ME/CFS don't recover with supplements, or exercise, or diets, or SSRIs, or anything else thus far.

People on this forum have made substantial improvements to their ME/CFS using drugs or supplements. If you systematically test out enough treatments, it is often possible to find drugs or supplements that will improve you so that you move up one level on the ME/CFS scale of: healthy, mild, moderate, severe.

Moving up one level on this scale is not a miracle; it is feasible.

Since @arty0mk started out as having mild ME/CFS, it is not unreasonable for him to find treatments that moved him up one level from his starting point of mild ME/CFS, to the state of being almost healthy again.

Now if someone got from severe to healthy — a three-level jump — taking a herbal supplement, then I would find that harder to believe.

But as chronic patients who've tried everything, some of us get understandably upset when we see statements like "exercise is key", when we would give anything to be able to build up our exercise levels even a bit and can't.

As I indicated in my paragraphs just above, the key to examining accounts of ME/CFS improvement or recovery is bearing in mind the level of the patient's ME/CFS, in terms of mild, moderate or severe.

If a severe bedbound patient told me they recovered using exercise, I'd laugh at that idea, and be utterly incredulous, because we know at that level of ME/CFS, physical exercise is generally very detrimental.

However, for a mild ME/CFS patient, who by definition may be commuting to part-time or full-time work or study, exercise may do no harm, and might conceivably be beneficial.

So given that @arty0mk's ME/CFS is mild, exercise is probably quite feasible for him.

We need to take the severity of ME/CFS into account in all cases.


Descriptions of mild, moderate and severe ME/CFS given here.

 

[Valentijn]

Under the CDC Fukuda 1994 definition it is not. Post-exertional malaise is just an option in that definition.

And the vast majority of ME/CFS patients, their doctors, and their advocates object to definitions which do not require PEM. On the one hand (CDC, Oxford) we have a definition primarily based on fatigue, which can include a huge variety of illnesses. On the other hand we have a distinctive symptom in the form of PEM (ICC, CCC, SEID), which identifies patients with a common meaningful symptom which can be objectively verified via CPET.

What do Oxford and CDC patients really have? Maybe ME/CFS, maybe something else entirely. They are not useful diagnostic criteria, and they mislead patients that have more stringently defined ME/CFS, or who have something entirely different. Suggesting that every Chronic Fatigue patient with a miracle cure for their fatigue should be able to peddle it here without any questions asked or flaws pointed out is absurd.

Just because bad criteria exist does not mean that we need to treat those criteria as if they are valid. It does a disservice to patients with ME/CFS, and it does a disservice to patients who have something else which is treatable. And it creates confusion when those CF patients (who apparently have never even heard of PEM!) then start talking about exercise helping them, given that exercise is extremely harmful to ME/CFS patients, and ME/CFS patients listening to those CF patients could be harmed as a result.

So given that @arty0mk's ME/CFS is mild, exercise is probably quite feasible for him.

No, the disease is still defined by a pathological reaction to exertion. And he wasn't describing it as merely "feasible". He was describing it as contributing to his recovery.

 

[EtherSpin]

So am I clear you were never diagnosed with CFS/ME, you just think you had it based on Dr. Google and research?

based on the criteria in the PACE trial (oxford) this is like a really high bar !

I actually saw Arty post somewhere and asked nicely for them to repost here cause more people would have overlap on the supplements and symptoms than the more general location this was posted in (thanks arty0mk!!)

 

[EtherSpin]

Thanks for posting your story of significant improvement @arty0mk. I very much like to read these accounts.

As you know, one active component of St John's Wort is hypericin; this has antiviral effects against murine cytomegalovirus, which is similar to human cytomegalovirus. Ref: 1

Cytomegalovirus is a virus that has been associated with triggering ME/CFS. Possibly one reason why you found St John's Wort helpful is its antiviral effects against cytomegalovirus (but that assumes you would have high titers to cytomegalovirus on a blood test, which I am guessing your doctor has not provided). Although I would think the antiviral effects are not that strong, so this antiviral theory is not a very likely explanation.

Interestingly, the antiviral effects of hypericin are increased by 100-fold by light (in the presence of light, hypericin generates singlet oxygen, a reactive oxygen species which has antiviral effects against enveloped viruses like cytomegalovirus). Ref: 1

If you are interested in other anti-cytomegalovirus supplements, see this post.

this is absolute gold, my CFS doc keeps detecting reactivation of CMV for me and each time i happens I know it by the sweats, weight gain and it also throws my liver enzymes out of whack and coincides with fatty liver when nothing in my diet should be leading me there. thank you so much for the link and explanation,this is the kind of thing I was hoping for in asking Arty to post here, that people would know the mechanisms by which some of the supps may have helped.

 

[arty0mk]

Hi, @arty0mk Where you state that you believe that 30 mins-daily exercise has been one of the things that has helped your improvement, are you sure that it is not the case that your improved function has enabled/encouraged you to do this increased exercise?

I'm not 100% sure, because the last 5 years are kinda blurry in my mind. I'll try to describe my experience with exercise.

My post-exertional malaise was directly proportional to the amount and intensity of exercise. During it's worst time, anything more than walking or light activity would make me feel worse, proportional to how intensely exercising I was. I didn't quite feel the very big crashes that CFS sufferers are describing after excessive exercise. I certainly felt substantially worse, but not an order of magnitude difference and it would last for a few days tops and then it would return to the regular level of bad. These lows can be described as having to lie down 5-10 times a day for 5-30 minutes (I can't take naps during the day, because I won't fall asleep at night then.). Sitting would be very difficult, but I would force myself to sit at the computer to research CFS for a total of couple of hours a day minimum. It was extremely difficult to concentrate due to exhaustion and brain fog, but I would read in short intervals and rest in between. The worst period lasted for maybe a year.

I can't say for sure if exercise helped when the illness was at it's worst. But light activity most of the time made me feel better. Definitely for the last couple of years. I have never completely stopped exercising apart from occasional breaks for a few weeks or a month at some point, when I was feeling very bad and wanted to see if complete rest would help. And no, complete rest was worse to me then light exercise, apart from the worst months where light exercise would not make a difference, but more then that would make me feel worse. I have continued lifting weights during most parts of my illness, but I had almost a decade of experience with it, so my body was very well accustomed to it, plus I knew how to rotate muscle group so they had enough time to rest completely between exercises, and how not to overexert myself of course. I would lift weights 2-3 times a week, rotating muscle groups. But eventually I discovered that walking made me feel the best and I have been gradually increasing time and speed of my walking as well as intensity of other exercises. I think this may be after I discovered D-Ribose. Sorry, I can't recollect all the details at this point.

Hi, @arty0mkThere have been other threads where 'overtraining syndrome'/OTS has been discussed, so at least some people believe that it is a different illness from ME/CFS. Here is one.

Hm, thanks, I'll look into it. This person's story though somewhat similar differs from mine. My symptoms we pretty standard CFS ones, apart from the response to exercise perhaps.

@arty0mk I'm really happy for you. Thank you for sharing.

Thanks a lot Apple! I really appreciate your kind words!

I wonder whether we as a community need a set of strategies on how to contribute to threads like this one? I get both sides. People like @arty0mk are taking the time to share with us what they feel really helped make them better. Its really generous, and of potential use to others. We want to be appreciative and to encourage people to share in this way. Thank you, @arty0mk.

But as chronic patients who've tried everything, some of us get understandably upset when we see statements like "exercise is key", when we would give anything to be able to build up our exercise levels even a bit and can't. Such statements also seem to support the very misconceptions about MECFS that have hurt us so much, both past and present. So then we wonder whether the poster really had ME or CFS. Its a legitimate question to ask, but hard to ask in a way that doesn't insult or undermine the person who offered their experience (harder still is the question of what ME or CFS is or isn't, and whether diagnosis - official or not - is really reliable).

I don't really have any solutions, just thought I'd put this out there. And I'm not criticising the people who've posted here - many have worked hard to balance their appreciation for the post with their concerns about the generalisiability of the advice.

In any case, @arty0mk, I hope this explains why sometimes responses seem a bit, well, cooler, than they might otherwise be. Regardless of that, I think all of us here do really appreciate you taking the time to post.

I tried to cut smaller parts out of your message to comment on, but I can't - it's perfect. I think you really hit the nail on the head with this one. Thank you!

I wish I had a better name then CFS to describe what I'm going through. From what I can tell, my symptoms are 99% similar to a definite CFS case that everyone here would agree on, apart from the response to exercise part.

I'm not confused regarding my diagnosis. It was triggered by a viral infection and possibly vaccines soon after the onset. I've had this illness for 25yrs and the root cause is no longer what is keeping me ill.

I chose my words poorly there. I meant 'you' as in 'any person' and not you personally.

Hip, thank you for an excellent, balanced and informative message. Also a separate thank you for the cytomegalovirus-hypericin connection. I'll look into it.

 

[Sidereal]

My post-exertional malaise was directly proportional to the amount and intensity of exercise. During it's worst time, anything more than walking or light activity would make me feel worse, proportional to how intensely exercising I was. I didn't quite feel the very big crashes that CFS sufferers are describing after excessive exercise. I certainly felt substantially worse, but not an order of magnitude difference and it would last for a few days tops and then it would return to the regular level of bad.

This is exactly what my ME/CFS was like back when it was mild.

 

[MeSci]

This is exactly what my ME/CFS was like back when it was mild.

I wonder if perhaps @arty0mk was/is managing to (inadvertently?) stay below his anaerobic threshold, thus tolerating the exertion/exercise.

As ever, I have to use my own 'energy credits' for more-essential, conventional activity like shopping, cooking, washing-up, gardening and the occasional bit of housework. I have visions of people with ME who can do exercise for the sake of it being waited on by a butler...or a Mum?

 

[Seven7]

@arty0mk I agree with you, for me exercise is key. I had cfs for 8 years I see one of the tops CFS doctors in US and the trick with exercise is to KNOW what works for you. I cannot progress unless I exercise (I call it rehab). Since I have to start from nothing and build up while staying under my AT, and push slowly.

If I pace I do not get worse but I do not get better either. I am under treatment (Famvir, Equillibrant, florinef, betablocker, midodrine, LDN, Imunovir.....) and no pill gets as much FUNCTIONAL improvement as the rehab does for me.

I feel better flu like symptoms and fatigue with meds but my ability to do more only goes up when I train my body to do so. I start horizontal and build up 5 min every 2 weeks. I have never being able to do more than 3 miles or real weights (I can handle 5 pounders and like a few push ups).

I am very unstable I go from bed ridden 3% of 10 to working and about normal quit a lot (8% of 10). I have had 3 remissions. I crash everytime due to overdoing the exercise (when I go to weights or heavy cardio). I know better now and this time was harder to get out of bed. But I am about 70%-80% most days.

 

[Seven7]

I wonder if perhaps @arty0mk was/is managing to (inadvertently?) stay below his anaerobic threshold, thus tolerating the exertion/exercise.

As ever, I have to use my own 'energy credits' for more-essential, conventional activity like shopping, cooking, washing-up, gardening and the occasional bit of housework. I have visions of people with ME who can do exercise for the sake of it being waited on by a butler...or a Mum?

If I start lower than AT. Then add SLOWLY like every 2 weeks and do horizontal work first (or legs depending where you struggle with the pooling), you will have more energy to do other things. But you are correct I have to sacrifice other areas to make time (and energy) for the exercise, also add a rest period after I do it.

So example: The day I exercise, I will not do dinner will reheat food instead. Then exercise and stay laying down in couch Supposedly double of the time of the activity but to be honest I get like a head buzz, hard to explain but I lay until the head buzz is gone. usually more time than what it took me to do the activity, then wen head feels normal I resume normal live. If I feel worse next day, I cut down ALL activity until I feel better. And when I exercise go back to the previous level that did not give me PEM.

To be honest since I still work and have family live. Exercise suffers because sometimes I do regular live activities that will send me already over the edge. So I try to exercise on the days I have control (I know there is no activity for kid and I can work from home that day). I have to restart A LOT. so I go back to laying down exercise and walk my way up again. This cycles gets repeated over and over and o.......

 

[PatJ]

Routines that helped...

Thank you for taking the time to post your story, and for structuring the information so well. I like that you provided a summary, then gave comprehensive details with bold sections that allow for easy visual scanning and re-reading.

 

[roller]

I wonder if perhaps @arty0mk was/is managing to (inadvertently?) stay below his anaerobic threshold, thus tolerating the exertion/exercise.

As ever, I have to use my own 'energy credits' for more-essential, conventional activity like shopping, cooking, washing-up, gardening and the occasional bit of housework. I have visions of people with ME who can do exercise for the sake of it being waited on by a butler...or a Mum?

oh man... sorry for the bad misunderstandings before.

i consider(ed) shopping a mega-aerobic activity, which i could only barely do.
and when, i had do have a plan. how to walk there, where to rest, how much to buy in order to get back home.
then i was done for the rest of the day. totally.
congrats to your good health.

 

[PatJ]

If a severe bedbound patient told me they recovered using exercise, I'd laugh at that idea, and be utterly incredulous, because we know at that level of ME/CFS, physical exercise is generally very detrimental.

However, for a mild ME/CFS patient, who by definition may be commuting to part-time or full-time work or study, exercise may do no harm, and might conceivably be beneficial.

My CFS started with two episodes of flu-like illness that left me with a permanent 50% loss of energy each time. Then I went into a gradual decline. Near the beginning of the illness exercise was necessary for me to feel better. But as my condition changed exercise lead to PEM, and the PEM threshold got progressively closer.

Now that I'm mostly bedbound my PEM threshold is very near and activities require care to prevent going over that threshold. I'm limited to basic tasks and a very short walk (a hundred feet) a few times per day during the period(s) when I can be upright.

As others have mentioned, maybe this is another sign of phases in CFS that lead to changes in symptoms and response to exercise. I think in my case blood pressure regulation has become worse over time and directly contributes to many of my problems.