Monday, January 14, 2013

KLIMAS: Redefining Exercise in CFS through Reconstruction of Aerobic Capacity

KLIMAS: Redefining Exercise in CFS through Reconstruction of Aerobic Capacity

The CFSPCOCA conference call was today.  To submit questions, propose agenda items, or get on the mailing list for the next call, send an e-mail to The next call is scheduled for August.
CDC's Elizabeth Unger:
This is the second call in the series.  The audience for the first was so much larger than anticipated last time that they've doubled the number of phone lines.  By popular demand, a summary of the talk and the Q&A will be posted online.
CDC is now working on the most pressing needs as identified by advocacy groups. #1 request was for better healthcare, recognition and treatment.  The Multi Site Clinical Assessment is obtaining standardized information from 7 clinicians: Klimas, Natelson, Kogelnik, Lapp, Peterson, Bateman and Powell.  Data on illness, history of the illness, family medical history and prescriptions/treatment.
At this point 96% of patients enrolled are in the system and 62% of the info has been collected.  The results should be out this fall.  Some of the sites including children/adolescents.
Phase 2 includes blood samples, cognitive testing, exercise tolerance; final protocols are being prepped.  It should start in March/April.  More info on the CDC website.
#2 was for more education. They have plans to develop new content.  They've met with patient advocacy groups and a professional educator, and the next step is pediatric CFS experts.
In March 2012, Medscape put up "CFS: Challenges in Primary Care", which has been viewed 31,000 times and 5000 medical professionals have already received Continuing Education Units for it.  This is the largest audience reached to date with one of these educational videos.  Doctors say the most significant barrier to proper treatment is limited time for visits.
November 2012, Medscape put up "Back to School and CFS" to help school nurses deal with students with limitations.
In March 2013, they'll do "Case Based Approach to CFS" with Komaroff moderating about management/treatment.  There will be test questions to see how much the doctors have learned.
The Med Ed portal on the Association of Medical Colleges website is free.  They have 2 vignettes filmed.  The first shows poor attitude, the doctor doesn't take the patient's complaints seriously.  The second shows him learning from another doctor and promising to do better in the future.  That should be available in June 2013.
Nancy Klimas, MD and Connie Sol, PhD
"Exercise is a dirty word in our field."  It doesn't have to be.
They were investigating blood volume and discovered that "deconditioning alone explained dysautonomia" (the severity of abnormalities in blood pressure, pulse, respiratory rate, etc. correlated with the level of deconditioning).  If your pulse is racing, that's an adrenaline rush.  If you have tachycardia while lying down, the adrenaline will keep you from falling asleep.
Taking exercise as a challenge, when you exceed the aerobic threshold you go into an anaerobic state, and that's what produces relapse.  On average it takes patients 8 minutes to reach threshold, after that 8 minutes you're already releasing inflammatory cytokines. 
Klimas treats the autonomic dysfunction/deconditioning first.  You need to understand your PERSONAL limit for aerobic retraining.
Sol's background is training athletes with MS.  "Exercise is wonderful for MS."  But in CFS they are not "making athletes", they're working in "very very tight zones", just a few minutes is enough.
Even activities of daily living can be "exercise" if it raises your heart rate.  The approach is more important than the type of exercise: use pacing!  Get a pulse monitor, continuous is best, because if it's the kind you have to press your finger, by the time you get the reading, you're over the limit and the damage is done.
There are two types of metabolism.  Aerobic burns fat; 1 unit of fat = 36 units of energy.  Anaerobic is when you move from fat burning to carbs, the emergency system.  You need to stay below your anaerobic heart rate to burn fat.  220 minus your age x 60% – for those of us in our early 50s, heart rate around 100 beats per minute.
Debilitating illness causes dysfunction at the threshold.
Exercise done lying on your back is best.  You can do yoga, water exercise where you're floating, slow swimming, slow Pilates, resistance exercise, eventually working with light weights, exercise 1 minute and rest 2 minutes..  Your heart rate should NOT go up.  As soon as the pulse meter shows the heart rate at the cut off (i.e., 100 for early 50s, below 100 for late 50s), STOP!!!!!
Q: What symptoms are improved?  More endurance through reconditioning and pacing.  Some patients who were previously athletes, the body remembers and they can do more to start, but you MUST keep under the anaerobic threshold, using pacing and naps to rebuild.
Q: Does CFS destroy mitochondria?  Cytokines are produced with exercise, and the mitochondria shut down.  With deconditioning, you need to start slowly and build back up.
Q: What about diet? Work with a nutritionist to see what nutrients/enzymes you personally are missing.  As blood moves away from the gut, digestion is affected.
Vitamin D
Omega 3 – anti-inflammatory, quiets the cytokines
probiotics for gut problems
Q: Should we get a flu shot?  Unger says we can get them, they're recommended, but talk to your PCP about contraindications.  Klimas agrees that most patients should get a flu shot.


Tina Tidmore said...

Thanks for the summary. Just to clarify, Klimas said that if a patient has had a bad reaction to the flu shot, then they should avoid it. However, most patients should get the flu shot because it is less of an assault on the immune system than actually getting the flu. She also said to ask for the vaccine without preservatives as they are not good for the patients.

KAL said...

The main thing with flu vaccines is to avoid the nasal flu vaccines which are "live" or attenuated viruses and are not recommended for people compromised immune systems.

Sue Jackson said...

This is an excellent summary! I had been hearing a lot of controversy over Dr. Klimas' remarks, but reading your explicit summary helped to clear things up.

In fact, I wrote about it on my blog and linked back here to yours:

Great job!

As for the flu shot, I never get them and neither do my sons with CFS. It is an intentional stimulant to the immune system which is the last thing we need! We tried one year (when H1N1 was such a big deal), and the shot sent me into a crash that lasted over a month. Since our immune systems are already over-active against viruses, we are unlikely to catch the flu anyway (I haven't in 11 years with CFS and my sons haven't in their 9 years with CFS). My doctor wholeheartedly agrees.

I think it's something everyone has to make up their own mind about.

Thanks for the excellent summary - I was sorry to miss the teleconference.


Kathleen said...

All this is fine, IF, and this means 10 or so percent in the first year, a decreasing percentage through the 5th year. This and a comparative study of GWI via CFIDS, were both published in the late CFIDS Chronicle.

That study found the two diseases similar in a number of values, some slight differences that I thought could be accounted for by gender, but they were minimal.

I knew some women who had GWI and the civilian support group. I called them from a phone list I got from Edie, to get some sense of severity.

Almost all were severely impacted. I called at about 11:AM and all had sufficient insomnia that they were not able to talk for long. I gathered a general impression, but did not keep any notes or repeat any conversations. This effort was closely associated with a book on the Paper-clippers that involved a declassification specialist.

GWII is going to be a different animal and may be linked to previous radiation linked illness and disease studies. I lost all my teeth at 53, so I guess the tooth-fairy maxed me out at 3. Half life of Isotopic Calcium is about 50 years.

My doctor worked half a week at a civilian clinic and half a week at the VA. In another city she had done similar work. I think these clinics were slapped together while funding was available, not because people were ready to undertake it.

Those of us who have been following our community research and politics for decades are flummoxed by this development. But I think we have to be careful not to kill the messengers.