Wednesday, January 16, 2013

Dr. Klimas's Exercise Program for CFS

On Monday, the CDC hosted the second in a series of phone conferences with ME/CFS patients, PCOCA: Patient Centered Outreach and Communication Activity. I wasn't able to participate, but I am excited that they are doing this and they reported on a lot of progress in areas of research, doctor education, and better healthcare for patients, all as a result of earlier patient requests. All of this is excellent news, especially the overall fact that the CDC does seem to be listening to patients and trying to take action on our most urgent needs.

The Life As We Know It blog posted the best summary of the teleconference that I have seen.  It is brief and easy to understand and highlights some of the most important points covered. Take a look.

All of that good news has been somewhat lost in a flurry of patient protest over the last portion of the teleconference, where Dr. Nancy Klimas, prominent and well-respected ME/CFS specialist, talked about how she is using exercise to help her CFS patients. She was joined by Connie Sol, an exercise specialist who trains athletes with MS. The deluge of dissent came from the fact that the two did not specifically mention exercise intolerance aka post-exertional malaise during their part of the program (again, this is second-hand). I didn't listen to it myself, but I have heard lots of outraged patients take issue with this.

This didn't sound like the Dr. Klimas I have heard speak before, the doctor who has probably helped more patients than any other CFS doctor in the nation (and perhaps the world). I was puzzled by all this...until I read the summary at Life As We Know It. If you read the summary of Dr. Klimas' talk carefully, you will see that - although she is using the word exercise - she has carefully defined what that means for someone with CFS. She specifically notes that a person with CFS should wear a heart rate monitor and NEVER go beyond his or her anaerobic threshold (AT). If you have ever worn a HRM, then you know, we are not talking about jogging here! In fact, she says that the best way to start is with exercises done while lying on your back and in very brief time periods, perhaps 1 minute of exercise followed by at least 2 minutes of rest, never going above your anaerobic threshold.

From my own experiences, I think this is excellent advice. In case you missed it, I have written here about using a heart rate monitor to avoid post-exertional crashes (this link also explains what AT is and how to calculate yours). Dr. Klimas takes this a step further with the instruction to stay strictly below your AT and go very slowly and gradually. When defined this way, exercise no longer needs to be a dirty word for people with ME/CFS. We may not be out walking miles or hiking the Appalachian Trail anytime soon, but every tiny bit of progress can help to move us forward.

I know I have been going too fast lately. I take beta blockers to keep my heart rate down so that I can manage a lot more activity, and I do try to stay below my AT.  For instance, if I am taking a short (slow) walk in my neighborhood and my HRM beeps that I have hit 103 (my AT), then I stop and crouch down and rest until it comes down again. But I am crashed today, and all I did yesterday was 13 push-ups and some gentle ab exercises while lying on my back. The abs work did keep my HR below my AT, but I went over my AT at about the 6th push-up and kept going. I was just so excited at the proof that I am getting stronger! A few months ago, I could only manage 8 or 9. Obviously, that tiny bit of pushing myself over my AT was too much.

So, I plan to take Dr. Klimas' advice and bring things down a notch to where I can manage a bit of exercise without crashing the next day. I am close and I do manage some days, but I can see I need to be more disciplined about it, and she has provided some excellent guidelines.


Anonymous said...

Nothing has changed in Klimas's advice or opinions. It was always there. The advice Klimas is giving is GET by another name.

Sue Jackson said...

All of the times I have read about GET in various sources, I have never seen any reference to using a heart rate monitor or staying strictly below your AT. All references I have read to GET use generic milestones, like exercise 5 minutes the first week, then 10 minutes the second week, etc.

I think it is important to pay attention to the details here and not react to the word "exercise" as it has traditionally been used.

DolceVita said...

I'm so happy this form of "exercise" made it to the conference level, though it's unfortunate it got such a backlash and was misunderstood. I always use a heart rate monitor too and exercise is very short brief segments while sitting or laying down to keep my heart rate down and it's really been helpful. Minor improvements, but who am I to complain. And I'm reluctant to use the word "exercise" on my blog because I worry people will misunderstand what the heck I mean, because it's really not exercise at all heh, in the traditional sense :)

Knittah said...

I did a comparison of what Klimas said to what Chris Snell and his group (Pacific Fatigue Lab) have said. There is a lot of overlap, but also some differences that I think could be really important. Here's the link if anyone is interested:

Anonymous said...

As a patient of Dr. Klimas I can say she in no way is a GET supporter in the typical sense. Everything she tells her patients about exercising is about staying under your AT and slowly pushing your AT higher with strict monitoring using a heart rate monitor. You have to have an exercise stress test done also to find your AT first. I think the last person patients should be getting mad at is Dr. Klimas, she is on our side.

Sue Jackson said...

Thanks for the first-person perspective! And I agree very much with your last statement.

Anonymous said...

GET has never been understood for what it meant by the ME/ CFS patient community. GET is gradually increasing exercise tolerance - meaning, you move back a step or two if you need to. GET is NOT running, aerobics or even yoga, everyone. I got sick at age 19, a former ballet soloist. I sit on my sofa and "exercise". GET has always meant this. The ME/ CFS patient community wasn't ready to hear it yet.

Unknown said...

I am hoping someone can share their recommendation for a heart rate monitor that is simple, ( I don't need facebook notifications haha), but just accurate heart rate and it would be a bonus if it also tells me about sleep quality and oxygenation.
I am having a hard time searching through all the options avaialble now and they are quite technical with what apps can be used etc and I don't need any of that!

Sue Jackson said...

Sorry for the delay in responding - I was away last week. I wrote another blog post all about using a heart rate monitor, including tips and advice on choosing one, with links to some that work for us:

Hope you find one that works for you!