Article: The 'E' Work by Jennifer Spotila

You can view the page at http://www.forums.aboutmecfs.org/content.php?246-The-E-Work-by-Jennifer-Spotila

 

Should say E-Word, not E-Work. Thanks for the post.

 

Thanks L'engle. (I caught that a bit too late ). I think Jenny has tackled a very difficult subject very well and finally we get a complete picture of how to use the heart monitor to monitor exercise the Pacific Fatigue Lab way. It's amazing how far from 'exercise' as we know it all of this is.

 

I'm glad to see this article (thanks, Jenny!). I looked into this in some detail a few months ago and really couldn't fathom how any of us could establish an appropriate heart rate baseline without the Pacific Labs testing. It was clear on the thread where we were discussing it that the usual formulae (age-based) for calculating your anaerobic (or was it aerobic, I forget!) threshold don't seem to apply.

 

I'm glad to see this article (thanks, Jenny!). I looked into this in some detail a few months ago and really couldn't fathom how any of us could establish an appropriate heart rate baseline without the Pacific Labs testing. It was clear on the thread where we were discussing it that the usual formulae (age-based) for calculating your anaerobic (or was it aerobic, I forget!) threshold don't seem to apply.

Yes, this article is great, thanks for putting it up Cort. It clarified things further for me and I found the analogy of the human body as a hybrid car incredibly helpful in my understanding of the different energy systems inthe body and what is going wrong with those with m.E.

Finally, I am right in understanding that if one keeps carefully below one's individual AT limit, with time this can actually increase the AT limit, translating into being able to do more? I have been housebound for 8 months now and can only walk a few steps and I suppose am looking for the encouragement that following these guidelines will increase my functioning and I can havea bit more of a life. I appreciate people are more ill than I am.

Oops, sorry didn't mean to quote you Sasha, getting a bit brainfoggy!!!

 

Oops, sorry didn't mean to quote you Sasha, getting a bit brainfoggy!!!

That's OK, anniekim, I don't mind a bit of accidental fame!

Incidentally, if you make a mistake in your post you can always edit it afterwards (there's an edit button below it when you're logged in). The forum etiquette is not to make substantial edits that change the meaning of your post so that the flow of the thread still makes sense and so that you haven't changed anything that people responded to in your post. But if it's something like a typo or you accidentally quote something irrelevant, it's fine to change it.:Retro smile:

 

Finally, I am right in understanding that if one keeps carefully below one's individual AT limit, with time this can actually increase the AT limit, translating into being able to do more?

My understanding is that it is possible, but not guaranteed. Some people are able to raise the AT limit, allowing them to do more before hitting it. Some people are able to improve their capacity to repay that oxygen debt, in other words recover from activity more quickly.

But Stevens, et al are very clear that this improvement does not occur for everyone. Improvement may be slight, and slow in coming. The protocol is designed to help patients maximize what they can do within their current limits, as well as try and push the line of those limits if possible.

Sasha commented on calculating the AT without extensive testing. It takes experimentation. 50% of age predicted max heart rate is one place to start, but Staci Stevens emphasized using the Borg scale of perceived exertion as well. If an activity feels very hard, then it is past your AT and you should stop. Using more than one measure seems like it would increase an individual's chances of finding the right level.

 

Great Article Jspot! Well written not just for the patient but a good one for the doctors.

 

Thank you so much, George! I tried to include info for both audiences, and make it practical, and not overwhelming, and cover the range of disability/ability in patients. It was a lot to cram into one article!

 

Thank you so much, George! I tried to include info for both audiences, and make it practical, and not overwhelming, and cover the range of disability/ability in patients. It was a lot to cram into one article!

You did an amazing job!

 

I overheard at the CFSAC meeting that the heart rate moniter doesn't work. I agree. I have to set mine much lower than 10% less than my actutal aneorobic threshold.

Untreated POTS has a significant impact on what a person can do and would render this article useless to that patient cohort. I was told by a respected CFS physician to sit in a recliner or lay supine all day/night. Fortunately, I've found treatment for POTS.

Stacy told me that when you rate an activity, 7-20, from very, very light to very, very hard, you should add a zero to that number. That is your heart rate. If you perceive an activity as being high? Stop the activity immediately, and do it later. In fact, "give yourself a day off."

BTW, Stacy and I were talking about activities of daily living which completely fulfills the "E" word for many.

Personally, I feel "E" in regards to CFS should be changed to "M" for movement. Unless you are lightly affected by CFS, movement is all you can hope for, and is, indeed, an accomplishment.

 

I think this article's pretty useful, like the rest of the series! Thanks Jenny for writing it and Cort for posting it here!
Though I agree with Brown-Eyed Girl as well, that for maybe 50% of people exercise in any form is not an option. Any kind of movement is an accomplishment, I think, for all of us here.

Wonderful series of articles!

 

Thank you, L'engle.

BEG, I agree with you. I included a caution about OI in the article for just that reason. I also quoted Staci saying that "exercise" doesn't mean what most people think it does. You are correct that any movement counts as exercise for us. And yes yes yes, if something feels very hard then stop and eliminate that activity! I hope these cautions came through in the article. Like I said, I crammed a lot of stuff in one short piece. Any one of the paragraphs could be expanded significantly.

 

I just talked to someone who is doing very well following this protocol and he knows another person who did very, very well

The problem is that it takes discipline (my problem!) and of course some people exceed, as brown-eyed girl noted, their capacities just doing the daily activities of life.

I look forward to when they finally figure out how activity and particularly exercise can be so destructive at times to the homeostasis of the body; in particular, what happens when you cross the line and how and why some people can move the line - as they apparently can using these methods.

 

I've known of a few patients online who have been greatly helped by this approach. BUT, none of them had Orthostatic Intolerance. I agree with BEG; if you haven't got an effective treatment for OI/POTS then extra activity is near impossible without crashing later.
A friend of mine was bedbound for years and only by getting some effective treatment for OI finally worked out has she been able to get out of bed and actually add in some very, very, very gentle extra movement.

 

My understanding is that it is possible, but not guaranteed. Some people are able to raise the AT limit, allowing them to do more before hitting it. Some people are able to improve their capacity to repay that oxygen debt, in other words recover from activity more quickly.

But Stevens, et al are very clear that this improvement does not occur for everyone. Improvement may be slight, and slow in coming. The protocol is designed to help patients maximize what they can do within their current limits, as well as try and push the line of those limits if possible.

Sasha commented on calculating the AT without extensive testing. It takes experimentation. 50% of age predicted max heart rate is one place to start, but Staci Stevens emphasized using the Borg scale of perceived exertion as well. If an activity feels very hard, then it is past your AT and you should stop. Using more than one measure seems like it would increase an individual's chances of finding the right level.

Thanks jspotila, your reply was very helpful.

 

BEG, I agree with you. I included a caution about OI in the article for just that reason. I also quoted Staci saying that "exercise" doesn't mean what most people think it does. You are correct that any movement counts as exercise for us. And yes yes yes, if something feels very hard then stop and eliminate that activity! I hope these cautions came through in the article. Like I said, I crammed a lot of stuff in one short piece. Any one of the paragraphs could be expanded significantly.

Thanks for your reply, Jenny. I see the "E" word and something comes over me. I see red which is probably why I didn't absorb parts of your article. I've been told to excercise too many times from a very excellent doctor who also diagnosed me with POTS.

 

Thanks for your reply, Jenny. I see the "E" word and something comes over me. I see red which is probably why I didn't absorb parts of your article. I've been told to excercise too many times from a very excellent doctor who also diagnosed me with POTS.

That's one of the reasons I wrote the article! I think most of us hear the E word and think "here we go again" because we have ALL had people (doctors, family) tell us that exercise will help. They say that because it helps everyone else - but not us. I went through four physical therapists before I found one that would actually LISTEN to me - what a concept! I can't speak for Staci, but I think she would say POTS/OI must be treated first and then their protocol followed very cautiously and carefully.

 

I agree with all here... even well meaning people have said "keep exercising and you will get better with time... if you don't, then, blah, blah, blah". Treating you as if you are someone who just needs to be motivated to activity, not someone who has to make the painful daily decision not to do physical activity. Also people don't understand that PEM is not some light weight thing that is worth going through... exercise, pay for a while, then right as rain... , no, PEM is damaging and and can worsen the overall condition! And people talk about 'striking a balance' when there is really no balance, just something you could do before being taken away. Exercising and getting sicker is no balance, it is the opposite of balance.

Just a rant here but, like everyone else, it really bothers me when healthy people steam roll over the issue with their own uninformed views. They've never dealt with it, they haven't researched it, they don't know what it's like, so why do they pretend to know how it is. Blah!

 

Exercise as the cure for all ills is a near-holy article of faith with many people; it's really hard to get exercise enthusiasts to understand that this disease fundamentally interferes with the delivery of energy to the body, and how damaging over-exertion can be for us.

I think this is part of the deeper cultural reason why ME/CFS became such a stigmatized and despised disease - because our society valorizes effort, toughness, "pushing past" things, overcoming obstacles by trying harder, etc. etc. It's fundamentally threatening to really contemplate a condition that you can't "toughen" your way out of, that can actually be made worse if you push against it in that way. Much easier to assume that the condition is actually psychological and therefore does not pose a threat to the "tough" people who don't collapse under stress that way.

Yeah, I used to think I was one of the tough people too. Go figure.