Why does Dr Anthony Komaroff recommend exercise when the evidence is against it?

[Tulip]

There is now so much biomedical evidence against the use of aerobic exercise for people with ME because it can either lead to disease progression or sudden death. Yet Dr Anthony Komaroff recommends moderate exercise Why??. Paul Cheney is strongly against it because we can kill our own dna which then leads to the above happening. "In his September 2006 seminar (available on a two-DVD boxed set from videos@dfwcfids.org ), Professor Paul Cheney again warned that aerobic exercise may kill the patient with ME/CFS. As before, Cheney acknowledges his debt to the work of Peckerman. Cheney noted that there is an objective database in key medical literature that includes evidence of diastolic dysfunction and heart failure in ME/CFS."

I know for myself when my health has been in a better state than now, I have done power walking and several months later I have had a major crash leading to being severely ill and housebound, which is what happened to me in 2009 and i'm still in that crash. Now that I have throroughly researched why this is happening I won't do it again, despite my love of aerobic exercise, it's not worth progressing this disease and risking death for.

My local non ME gp recommends GET because she does not understand it's an actual disease despite telling her for the past 12 yrs it is. So I have printed out most of the below info for her and plan on giving it to her and also some of it for the cardiologist that told me "high impact aerobic exercise helps this condition". Again though Dr Anthony Komaroff does know it's a disease, so his recommendation makes no sense. You would think that the experts would be united on this?.

Theres heaps of cardiovascular info here on why we shouldn't do it (38 pages if you print it ): http://hoopermedical.intodit.com/page/documented-cardiovascular-abnormalities-in-me-cfs

 

[Tony Mach]

Now I don't know what exercise regime Komaroff recommends, but I agree that doing excessive exercise is dangerous in ME/CFS (as opposed to e.g. major depression). Especially anaerobic exercise (when you exceed your condition with regards to force needed) is dangerous with ME/CFS. Aerobic exercise turns into anaerobic exercise, if you exceed your endurance (you practice longer than your condition allows).

But I think we as ME/CFS patients need to do something to at least maintain the level one has (or even slightly increase it), because whether we have ME/CFS or not, everybody is prone to deconditioning. Nature says "use it or loose it" (and ME/CFS patients are no exception). So my personal feeling (without anybody to back up my claim) is to have a given activity level of 100% and exercise between 10% to 20% of that. One has to respect the current condition, be extra careful that the force or time does not exceed the given condition, that one makes enough rests while doing exercise and start rather low. But I think the target should be to very very slowly increase the condition or at least maintain it. (I think the Nancy Klimas exercise counseling is sound, see it on Vimeo if you like). I don't want to become bedbound and at least maintain the little activity my condition allows.

 

[Tulip]

That's the problem though, there are now many many people that have been made bedridden because of doing GET and that's not even what Dr K is recommending, he is recommending above that. The other problem is that people with this disease do not have the ability to increase stamina, no matter how much exercise they do it is physically impossible for someone with genuine ME to do, because the disease takes that away from us. That's another way to tell the difference between who does and doesn't have ME.

I think specialists like Cheney recommend stretching such as basic yoga for those that are able, which keeps the body flexible and helps maintain muscle and doesn't put strain on the heart.

 

[Esther12]

There are lots of ways in which exercise can be beneficial. With CFS though, it's harder to get them without causing something else to go wrong.

I'm suspicious of anyone who claims to know what is best.

 

[justy]

I am a patient of Dr Myhills and she recommends absolutely no exercise for her patients until they are feeling considerably better at rest -even then she does not recommend exercise but a gentle increase in activity. When almost fully recovered exercise cn be undertaken, but not aerobic exercise. This is due to the damage that is caused in the body by pushing through mito dysfunction, causing cells to die and spill there contents into the bloodstream, antioxidants would then normally mop this up but we often dont have enough antioxidants to be able to do this.

For me personally just going about my daily life is still enough to keep me ill and i couldnt possible add exercise on top of that, i cant even manage Yoga at the moment as it gives me PEM.
In terms of stamina i agree wholeheartedly that it is a major problem in M.E. I had a long remmission to about 80-90% functioning, but still despite regular and sustained exercise could not improve my stamina -it was very marked.

 

[taniaaust1]

regular (daily) exercise didnt improve my stamina at all either and I ended up highly disappointed after 2mths.. I could only run 3-5 secs longer at a time if that, before all my muscles I was using would go into pain and like freeze me up with complete burn out. I couldnt do any more then what I'd started out doing.

Hence after doing that for 2mths, I can confidently say, graded exercise in my own case wouldnt work... no improvement even after exercising at my max daily.. i did 2 hrs a day exercise with no improvement seen in like my fitness levels. (I did amaze myself thou as the exercise didnt crash me.. my leg muscles with aerobic exercise completely burnt out, way before the exercise could crash me and bring on my whole symptom complex . Each run i could only run for 50seconds before resting).

2mths of working on my fitness daily didnt even bring me up to a level in which I was anyway capable of doing a 10min aerobic class... I can only last 5 mins of a class. (last time I tried that one I ended up on the floor of the gym, extremely dizzy and with breathing issues and they were going to ring ambulance, I wont be trying that one again)

hence Im wary of anyone saying that regular exercise in us improves stamina, if anything, it puts us at risk.

any of us can test this out for ourselves (if well enough to add any exercise into our life). Maybe this is one of the best tests to distinguish ME (which seems to have mitochrondrial issues hence the energy and pain issues) from other things.

 

[eric_s]

Hi Tulip

Where does Dr. Komaroff say this? It's the first time i hear it. I don't like anyone using the term exercise. Of course you should do the activities you are able to do without problems, but at least in my case i do them anyway, it comes naturally if you are well enough. But that's not really exercise. Sure there is some deconditioning if you live life the way we have to, but i prefer this over damage. I'm no physician so this is only my personal opinion and nobody should blindly trust it, but from my experience you feel quite exactly what's good for you and what isn't.

 

[Daffodil]

when i was at 50% or 60%, i did find that very light exercise did help me. maybe it kept stress hormones down, which lessened xmrv virus replication? at that stage, i was still able to recover after exercise but i did need a lot of sleep afterwards.

as soon as i got sicker, exercise was BAAAD

 

[soxfan]

I am a patient of Dr. K and he never mentioned anything about exercise to me. He didn't ask if I do any or suggest I do any. Of course I have only had 2 appointments with him so maybe the subject will come up in future appointments. In fact he really didn't ask many questions at all. You have to fill out a short questionnaire before you go in to the office so maybe he has in mind what the topics will be at that particular visit..

 

[floydguy]

I've been seeing Komaroff for 6 years and he has never suggested moderate exercise. Sometimes I think we need the equivalent of Snopes to track down the urban legends that are tossed around.