Endurance Exercise and ME/CFS -- Individual Experiences

[Gingergrrl]

Moderator Note:
This thread was split from the thread I Don't Get Fever.

@mellster You mentioned above that you signed up for a half marathon (and I don't know your story) but you must have made significant improvement in order to do this! If you don't mind me asking, did you take anti-virals for the EBV or use other treatments?

 

[mellster]

@mellster You mentioned above that you signed up for a half marathon (and I don't know your story) but you must have made significant improvement in order to do this! If you don't mind me asking, did you take anti-virals for the EBV or use other treatments?

@Gingergrrl43 I did take and still take a whole range of anti-microbial and immune-stimulating supplements (such as cordyceps, paw-paw, graviola, ahcc, IP6 only to name a few) and I did MAF314/GCMAF for 1 and a half years. I was never completely disabled, but briefly partially housebound (I was able to work from home on really bad days or take a sick day) and restarted my exercise with walking a mile at a 16 minute pace (walking speed) 3 years ago after having to give up kickboxing temporarily. So I was probably a 5 at my worst. I had started a thread about all the supplements a long time ago, but I can't find it anymore. No matter if I make it through the half in November or not (I have run a 10K and couple of 5Ks), I would love to wear some CFS awareness T-Shirt if anybody can make me one.

 

[rosie26]

A picture of an ME patient very ill in bed with ME/CFS - Please donate to research. Would be good @mellster wouldn't it. Quite a contrast for people to see at a marathon.

 

[Gingergrrl]

@Gingergrrl43 No matter if I make it through the half in November or not (I have run a 10K and couple of 5Ks), I would love to wear some CFS awareness T-Shirt if anybody can make me one.

@mellster Is the half marathon actually related to CFS? If it is a CFS cause, I'm sure you would get a lot of sponsors from here! If not, I still think the t-shirt is a great idea. I don't have the skills to make one but I ordered a t-shirt once (for another cause I support) from Booster.com which might be a good place to start.

 

[MeSci]

@Gingergrrl43 I did take and still take a whole range of anti-microbial and immune-stimulating supplements (such as cordyceps, paw-paw, graviola, ahcc, IP6 only to name a few) and I did MAF314/GCMAF for 1 and a half years. I was never completely disabled, but briefly partially housebound (I was able to work from home on really bad days or take a sick day) and restarted my exercise with walking a mile at a 16 minute pace (walking speed) 3 years ago after having to give up kickboxing temporarily. So I was probably a 5 at my worst. I had started a thread about all the supplements a long time ago, but I can't find it anymore. No matter if I make it through the half in November or not (I have run a 10K and couple of 5Ks), I would love to wear some CFS awareness T-Shirt if anybody can make me one.

I went to your profile and searched for threads started by you - here is the list.

 

[MeSci]

A picture of an ME patient very ill in bed with ME/CFS - Please donate to research. Would be good @mellster wouldn't it. Quite a contrast for people to see at a marathon.

Here is another story of someone carrying out an endurance activity after having ME.

I'm afraid that I am not a fan of endurance activities for anyone, as it was pushing through fatigue that probably put me in this mess in the first place! Whenever I hear about people doing it I fear for their health. Brief pushing through is fine for a healthy person, but prolonged pushing seems like asking for trouble IMO.

 

[rosie26]

Here is another story of someone carrying out an endurance activity after having ME.

I'm afraid that I am not a fan of endurance activities for anyone, as it was pushing through fatigue that probably put me in this mess in the first place! Whenever I hear about people doing it I fear for their health. Brief pushing through is fine for a healthy person, but prolonged pushing seems like asking for trouble IMO.

I feel exactly the same MeSci. You put that so well. Hope Mellster will be okay.

 

[mellster]

Thanks, I am not doing this for speed (unlike the 5Ks or 10Ks) and am willing to quit if it seems too much. One thing to consider though is that there have been articles run in newspapers of miraculous healings of former CFS/ME patients now running regular marathons (I think it was a woman in the case I recall). I don't want this thought of as one of those cases. First of all I wasn't as ill as many others and not as long (though I had all official diagnoses, CFS, FM, PVFS and one MD thought I may have late stage AIDS), and second I want to check this off my list, and it did not come easy at all. I don't anticipate participating in half-marathons regularly and neither do I think it would be too healthy, it's even stressful for "normal" people, but it's hard to let go of certain personality traits. I have also been embarking on a mildly ketogenic diet which seems promising so far (still too early to tell), I don't follow strict rules, but my daily carb intake is anywhere between 30g-150g (at 200 lbs), but mostly below or around 100g. Research is still in its infancy, but it seems that more and more data points come out that support the theory that sugar is mainly responsible for inflammatory processes and also feeding into chronic disease processes and that mild ketosis can help that.

 

[MeSci]

I hope that you'll have appropriate health checks (especially heart function) before embarking on this half-marathon.

I am glad you are prepared to quit if it seems too much. Don't forget you said that!

 

[NK17]

I don't need to repeat what @MeSci and @rosie26 have already said.
You seem to be aware of the damages of running marathons, even for professional athletes ...
Please take extremely good care of you.

 

[Gingergrrl]

@mellster I really want to change what I said earlier after reading the feedback of @NK17 and @rosie26 and @MeSci . I think I got excited for you at how much you have improved and that you want to do a half marathon, get t-shirts made, etc.

However, I am now remembering some prior posts by @Dr.Patient (and someone else who I cannot remember) who stated that they had mild to moderate CFS, thought they were improved, began running again and completely decompensated with a relapse in CFS to a level worse than where they had started (and then stayed at that level!)

Therefore, if you are doing much better now (which I am thrilled about!) I don't think doing the half-marathon is worth the risk. So, I am hoping you take all this into account before making your decision.

 

[Dr.Patient]

@mellster I really want to change what I said earlier after reading the feedback of @NK17 and @rosie26 and @MeSci . I think I got excited for you at how much you have improved and that you want to do a half marathon, get t-shirts made, etc.

However, I am now remembering some prior posts by @Dr.Patient (and someone else who I cannot remember) who stated that they had mild to moderate CFS, thought they were improved, began running again and completely decompensated with a relapse in CFS to a level worse than where they had started (and then stayed at that level!)

Therefore, if you are doing much better now (which I am thrilled about!) I don't think doing the half-marathon is worth the risk. So, I am hoping you take all this into account before making your decision.

That would be @Mij , we both strongly urge against running or any physical exercise. I would even say Don't you dare!

 

[Dr.Patient]

Thanks, I am not doing this for speed (unlike the 5Ks or 10Ks) and am willing to quit if it seems too much. One thing to consider though is that there have been articles run in newspapers of miraculous healings of former CFS/ME patients now running regular marathons (I think it was a woman in the case I recall). I don't want this thought of as one of those cases. First of all I wasn't as ill as many others and not as long (though I had all official diagnoses, CFS, FM, PVFS and one MD thought I may have late stage AIDS), and second I want to check this off my list, and it did not come easy at all. I don't anticipate participating in half-marathons regularly and neither do I think it would be too healthy, it's even stressful for "normal" people, but it's hard to let go of certain personality traits. I have also been embarking on a mildly ketogenic diet which seems promising so far (still too early to tell), I don't follow strict rules, but my daily carb intake is anywhere between 30g-150g (at 200 lbs), but mostly below or around 100g. Research is still in its infancy, but it seems that more and more data points come out that support the theory that sugar is mainly responsible for inflammatory processes and also feeding into chronic disease processes and that mild ketosis can help that.

You cannot quit when it seems too much. I jogged for 3 weeks without any problem, and it hit me in the 4th week! This illness is extremely TRICKY!! My mission in life is to tell people No Physical Exertion! Be happy with what you have. @mellster DO NOT GO ON THE MARATHON! This is a time when all niceties and politically correctedness go out of the window. DON'T DO IT!

 

[Gingergrrl]

@mellster I wanted to ask you two other questions- First you said that you read an article about people who made miraculous healing from CFS and went on to run marathons. While I have no doubt you read this, do you think it was a credible source or can you link the article?

Second, you said you are doing a ketogenic diet and that it is helping you and I was wondering if you take MCT oil?

 

[Gingergrrl]

@Dr.Patient I am so glad I tagged you in this thread and was very curious what your take would be both as a Dr and as someone who relapsed due to running.
Thanks for responding so quickly! I just don't want to see anyone else relapse if it can be avoided!

 

[Mij]

@Dr.Patient I am able to power walk for the last few years for up to an hour without PEM. I can do this 2-3x/week. I can only do this under these conditions:

1. don't have anything viral or immunological going on
2. don't have too much physical or cognitive tasks to do the next day
3. cool temperatures
4. in the evenings only.
5. don't drink coffee that day

I absolutely don't recommend running/jogging ever again, no matter what.

 

[Gingergrrl]

@Mij How do you know if you have something viral or immunological going on? Do you base it on blood test results like viral titers or on how you are feeling?

Also do you have any cardiac or autonomic stuff that affect your ability to stand or walk?

This topic is very interesting to me and hope you don't mind the questions!

 

[NK17]

I second what @Mij says and like to add that an old friend of mine, who is into scientific research @ a very prestigious institute and used to run marathons for fundraising, says that running is not a healthy sport, on the contrary.

Even healthy people get hit by a storm of pro-inflammatory cytokines post marathons.

I bet that when PWME are in a viral/immunological flare up, will forcibly and naturally, be unable to sustain any physical effort, of any kind.

 

[Dr.Patient]

@Dr.Patient I am able to power walk for the last few years for up to an hour without PEM. I can do this 2-3x/week. I can only do this under these conditions:

1. don't have anything viral or immunological going on
2. don't have too much physical or cognitive tasks to do the next day
3. cool temperatures
4. in the evenings only.
5. don't drink coffee that day

I absolutely don't recommend running/jogging ever again, no matter what.

Was there a period, say, for a month or two , when you didn't do this power walk, and you noticed that you felt a tad bit better?

 

[Mij]

@Mij How do you know if you have something viral or immunological going on? Do you base it on blood test results like viral titers or on how you are feeling?

Also do you have any cardiac or autonomic stuff that affect your ability to stand or walk?

This topic is very interesting to me and hope you don't mind the questions!

Questions are no problem It feels viral. Every time I have a relapse the symptoms are viral. It's not always the same virus either because there are times I can power walk feeling viral and I feel somewhat better after, but other times it brings on severe PEM. I've had this for 23yrs and my onset was a sudden viral/vertigo type. My history tells me it's viral.

I've had various PCR testing years ago but nothing showed up.

I think I have some form of OI but I've never been tested. I am currently looking into it.