Dr Klimas's CDC talk on deconditioning & exercise in ME/CFS on Cort's blog

[SOC]

Good luck with your experiment, Sasha! As you say, this is a good time of year to try a major rest treatment.

You seem to have some of the tricks figured out -- go super slowly, avoid slopes as much as possible. For a while I even had to do that wedding march thing -- step, pause, step pause (even around the house) to stay under my AT.

Another useful one is putting sitting breaks into unavoidable excesses like stairs or hills. It's maddening, but worth doing if the activity takes you over your AT. For a couple of years I couldn't go up a flight of stairs without exceeding my AT, so every night at bedtime I'd have to walk up half the flight and sit for a couple of minutes, then do another half flight, then sit a couple of minutes then walk down the hall. It was a major mental challenge for me, the person who used to run up stairs two at a time and never sat down.

Another thing to try, although it's also maddening for a previously active person, is a daily supine rest -- eyes closed, no TV, computer, or reading. I can listen to music or an audiobook, but some people need complete quiet. This acts as a mid-day recharge. For me it also gives a gauge of my general condition. When I'm doing really well, I'll lay down for an hour, get some rest, and get up again. If I fall asleep and sleep for an hour or so, I know I've been overdoing. If I fall asleep and sleep for 5 hours, I know (if I didn't already) that things are going south.

BTW, I've been told to get at least 10 hours of sleep. That does seem to help and makes sense if our bodies are fighting infections.

Smart idea to do MAF 878 and major rest mode at the same time. Hopefully it will give your body a chance to clear out some baddies and heal.

 

[Sasha]

Another useful one is putting sitting breaks into unavoidable excesses like stairs or hills. It's maddening, but worth doing if the activity takes you over your AT. For a couple of years I couldn't go up a flight of stairs without exceeding my AT, so every night at bedtime I'd have to walk up half the flight and sit for a couple of minutes, then do another half flight, then sit a couple of minutes then walk down the hall. It was a major mental challenge for me, the person who used to run up stairs two at a time and never sat down.

Another thing to try, although it's also maddening for a previously active person, is a daily supine rest -- eyes closed, no TV, computer, or reading. I can listen to music or an audiobook, but some people need complete quiet. This acts as a mid-day recharge. For me it also gives a gauge of my general condition. When I'm doing really well, I'll lay down for an hour, get some rest, and get up again. If I fall asleep and sleep for an hour or so, I know I've been overdoing. If I fall asleep and sleep for 5 hours, I know (if I didn't already) that things are going south.

BTW, I've been told to get at least 10 hours of sleep. That does seem to help and makes sense if our bodies are fighting infections.

Smart idea to do MAF 878 and major rest mode at the same time. Hopefully it will give your body a chance to clear out some baddies and heal.

Actually I had to go out today even though I wasn't feeling well, to take a load of parcels to the post office and decided to try a different method of tackling the stairs. I went down them by stepping down with one foot and then placing the other foot on the same step, fairly slowly, and managed to get down them at about 90 bpm. After that, I got to the shops OK by going only slowly up the slope. Not going too fast down the stairs seemed to give me a bit of reserve to play with.

On the way back, I walked even slower up the steeper return slope and did the stairs the same way in reverse, but counting ten seconds per step.

Phew! I can do it! It took me five minutes to get upstairs but that's better than being housebound. My 82-year-old mother with her pacemaker went up these stairs about ten times faster when she visited.

I'm now trying to arrange things so that I don't need to stand around at the shops doing errands so no more library books, selling stuff on Ebay so I've got to mail things and I'll make double sure I don't run out of things so can order everything online and have it delivered. I want to be just walking (under the threshold) or sitting when I'm out, and to not be out for long.

I already do supine rest for 15 mins every hour but I think I could do to lie flatter and not watch TV quite so much while I'm doing it (the five or so supine hours a day get very boring!). Your talking about audiobooks makes me realise how tightfisted I am with them. I listen to them on my MP3 player to get to sleep but I should double my Audible subscription and get a ton more! I already record a lot of digitial radio but audiobooks are better.

I wish I could sleep for 10 hours! I have insomnia which my sleep meds don't always help with. I've started meditating again in the hope that that might help.

Thanks for your post, SOC - good to know I'm not alone in having to live weirdly!

 

[SOC]

Actually I had to go out today even though I wasn't feeling well, to take a load of parcels to the post office and decided to try a different method of tackling the stairs. I went down them by stepping down with one foot and then placing the other foot on the same step, fairly slowly, and managed to get down them at about 90 bpm. After that, I got to the shops OK by going only slowly up the slope. Not going too fast down the stairs seemed to give me a bit of reserve to play with.

On the way back, I walked even slower up the steeper return slope and did the stairs the same way in reverse, but counting ten seconds per step.

Phew! I can do it! It took me five minutes to get upstairs but that's better than being housebound. My 82-year-old mother with her pacemaker went up these stairs about ten times faster when she visited.

I'm now trying to arrange things so that I don't need to stand around at the shops doing errands so no more library books, selling stuff on Ebay so I've got to mail things and I'll make double sure I don't run out of things so can order everything online and have it delivered. I want to be just walking (under the threshold) or sitting when I'm out, and to not be out for long.

I already do supine rest for 15 mins every hour but I think I could do to lie flatter and not watch TV quite so much while I'm doing it (the five or so supine hours a day get very boring!). Your talking about audiobooks makes me realise how tightfisted I am with them. I listen to them on my MP3 player to get to sleep but I should double my Audible subscription and get a ton more! I already record a lot of digitial radio but audiobooks are better.

I wish I could sleep for 10 hours! I have insomnia which my sleep meds don't always help with. I've started meditating again in the hope that that might help.

Thanks for your post, SOC - good to know I'm not alone in having to live weirdly!

Congrats on your success today! It takes a lot of emotional strength to do the kinds of things you are doing to improve your health.

Try the fully supine, or even better, supine with raised feet in place of some semi-supine rest. It does make a big difference. In the beginning I rested with my head flat and pillows under my lower legs -- oddly restful. My doc insisted on closed eyes, no TV etc. I was surprised how much difference that made, too, when I tried it.

If you're free to live weirdly, try two 5 hour sleep periods in a day if 5 hours is all you can sleep at one time. That was working for me until I got my sleep sorted out.

Good luck!

 

[Sasha]

Congrats on your success today! It takes a lot of emotional strength to do the kinds of things you are doing to improve your health.

Try the fully supine, or even better, supine with raised feet in place of some semi-supine rest. It does make a big difference. In the beginning I rested with my head flat and pillows under my lower legs -- oddly restful. My doc insisted on closed eyes, no TV etc. I was surprised how much difference that made, too, when I tried it.

If you're free to live weirdly, try two 5 hour sleep periods in a day if 5 hours is all you can sleep at one time. That was working for me until I got my sleep sorted out.

Good luck!

Thanks - I guess I'm used to drastic measures in the pursuit of health! Sounds like you are too.

I'll try the feet-raised supine - never thought to try that! I'll also try the eyes closed thing. It's all worth experimenting with. I think I tend to make the mistake of thinking that if I can't bear the thought of doing something the whole time (lying flat with my eyes closed) then it's not worth doing, whereas if I have a few rest sessions like that out of my daily 15, it may help.

I can indeed live moderately weirdly! But my sleep is weird. I fall asleep at about 11:30 pm and then wake up half an hour later and so on repeatedly for a while and then wake up too early, maybe having already woken up at 3am or so.

 

[SOC]

Thanks - I guess I'm used to drastic measures in the pursuit of health! Sounds like you are too.

I'll try the feet-raised supine - never thought to try that! I'll also try the eyes closed thing. It's all worth experimenting with. I think I tend to make the mistake of thinking that if I can't bear the thought of doing something the whole time (lying flat with my eyes closed) then it's not worth doing, whereas if I have a few rest sessions like that out of my daily 15, it may help.

I can indeed live moderately weirdly! But my sleep is weird. I fall asleep at about 11:30 pm and then wake up half an hour later and so on repeatedly for a while and then wake up too early, maybe having already woken up at 3am or so.

Have you had a sleep test? All that waking can't be good for you.

 

[Sasha]

Have you had a sleep test? All that waking can't be good for you.

Had one in a hospital a few years ago and they didn't find anything. I agree, it's not great! I'm hoping that meditation might help.

I slept better last night (I had a dream about the FDA and Ampligen! I've been thinking about that too much!).

 

[Andrew]

It is very interesting--she puts the ANS right at the heart of ME, and she may be right; one key is to get the threshold between aerobic and anaerobic right: the simple formula offered (in the absence of real testing) is 220 minus your age x .6, and alas at 80 that puts mine at 84--kind of low!!

One of the other people from the Klimas clinic said to use a multiplier of .65. That would put you at 91. Using the higher multiplier puts me at 100.75. Problem is, I just took a shower, dried off, checked my pulse, and it was a 111. That's 10 over my limit.

 

[Sasha]

Simon posted links to the whole Jan 26th conference but here is the video of Connie Sol talking about exercise:

http://www.nova.edu/promo.html?id=c...nding Your Limits, a Key to Restoring Fitness

 

[Andrew]

Simon posted links to the whole Jan 26th conference but here is the video of Connie Sol talking about exercise:

Notice the name of the presentation, it is: "Understanding Your Limits, a Key to Restoring Fitness." It is not "Exercise More, a Key to Restoring Fitness"

What they are teaching is an envelop method, which is what patients have been saying for years is the way to go. They are not teaching graded exercise.

 

[Ruthie24]

Sasha, @SOC- just as an FYI, I was at a cardiac rehab continuing ed course last fall and the instructor was discussing the fact that when you use your arms for an activity it stimulates the sympathetic nervous system much more than when you use your legs. Thought that was interesting, especially in light of the role the SNS plays with all the OI issues so many of us deal with. Also explains, in part, why doing activities with your arms above your head causes so many more symptoms for us. Those "simple" tasks like emptying the dishwasher, shaking out laundry to fold it, or hanging it up, etc are really not "simple" for our bodies at all.

When I did the 2 day CPET testing with Staci Stevens recently she was emphasizing to me that exercise really needs to be more about "the recovery" than it is about the exercise. It has to be something you recover from and that doesn't cause PEM/PENE. She was including daily activities in that as well as any type of "formal" exercise program. She also strongly emphasized using energy conservation techniques throughout activities of daily living, similar to those recommended for patients with RA, CHF or COPD.

Listening to Nancy Klimas speaking at her conference and at the CDC, I never heard her say or imply that deconditioning caused ME. What I heard her say was that after being ill for a prolonged period of time, it could become a factor in some patients, just like it does for anybody who has a prolonged illness or is bed-bound. And, that for some patients, an appropriate exercise program done within the limits of a specifically determined AT, being respectful of the patient's limits could be a useful adjunct to the other treatments they prescribe. I never heard her say it was a cure for ME. In fact, what she seemed to be saying was that her studies are showing that a "bad" exercise program or too much activity (i.e. exceeding AT regularly) triggers all the wrong things for us....ANS dysfunction, immune dysfunction etc etc. Seems to me that her gene expression studies are lending great credibility to that which we've been saying all along.