Chronic Fatigue Syndrome Support Group
Chronic Fatigue Syndrome (ME/CFS) describes a sense of exhaustion and post-exertion malaise, even when you have gotten enough rest and sleep. The disease is characterized by six months of incapacitating fatigue experienced as profound exhaustion and extremely poor stamina, and problems with concentration and short-term memory. The cause is unknown, but it is a...
Funny you should ask Ive just spent an hour yesterday talking to the head of Victoria Universities Sports and Exercise Commercialize Officer about comercializing proper VO2max for recovering ME patient demographic and I'm half way through writing a letter to my Doctor about the inadiquicies of the 'pseudo VO2max' testing conducted last year. 'Pseudo VO2max' testing is where you are not hooked up to a respired air analysis machine (air breathed out and monitered) which measures Volume Oxygen squared (VO2) and Volume Carbon Dioxide squared (VCO2).
'Pseudo VO2max' doesnt measure O2 or CO2. It usually takes a 3 or 5 minute resting heart rate lying down and then just usually uses a exercise bike and the liniar resistance incraments every 2 or 3 minutes over a 15 minute ineterval to measure maximum output via a heart rate monior and a watt power output calculator from the calibrated bike.
'Pseudo VO2max' is useful but inferiour to proper VO2max testing because the respired air analysis are just mathematical algorithms established from a healthy control group and 'Pseudo VO2max' doesnt take in to account post test body states ie vomiting, body crash, gray out black out, 'tied but wired' cognative states or any other of the dozen ME / CFS symptoms thta are often unpredictable .
Proper VO2max O2 and CO2 , pre and post test d-lactate blood levels are very useful for recovering ME/CFS sufferers especially over the 48 to 72 hours test and post test.
With respect to ME patients proper VO2max testing needs to be conducted over a minimum of 2 sequential days to determine and initial datum of "fatigue", rate of recovery (lactate- lactic acid residule) and help determine a safe fair sustainable and reasonalble exercise profile or datum for a patient to then work within. If your thinking of persuing VO2max then you will need to purchase a heart rate monitor and wear it all the waking hours and have your exercise output profile programed into it, download it every day or every week and monitor your profile.
If you get a valid VO2max output profile programed onto a heart rate monitor (HRM) then it can trigger an alarm when you are getting near to a threshold that would precede a body crash. Thats where VO2max comes into its own - helping avoid body crashes.
I've got a HRM from my days when I was competative on cross country ski's its programable and downloadable to a laptop.
I dont use it.
Thats howwe used them in X country skiing, by avoiding the 97% output for more than 3 minutes and 98% output for 1 minute.
N/B With ME my maximum sustainable output when I am hydrated properly, with safe food nutrition in a healthy flue free body with glands not flairing is 55% Max heart rate for no longer than 10 to 15 minutes per day. Max heart rate is a number you get it by subtracting your age from the number 210. ie I'm 45 y.o.
ie, 210 minus 45 (age) is 165 therefore 165 heart beats per minute equates to 100% maximum heart rate. M
My resting heart rate (5 minute lying down is) with ME is 65 bpm or 39% max heart rate (mhr) as compaired to my racing resting heart rate when I was healthy and very fit was 19% max heart rate of 34 bpm with a lung volume of 7.5 litres .
My sitting hr with ME is 72 bpm or 43% max heart rate.
My standing hr with ME is 82 bpm or 43% max heart rate.
My walking hr along the shallowest of hills (flat country) is with ME can easilly exceede the sustainable (individual body crash avoiding) level of 55 % max heart rare of 90 bpm. Two flights of stairs excedes the sustainable (individual body crash avoiding) level of 55 % max heart rare of 90 bpm.
So you can see how inapropriate VO2 max and a hrm are for me at the moment. (In the years of recovery to come I hope to again utilise this technology. My body warns me when I am about to crash and I pull up stumps or else I body crash.
For healthy people let alone sufferers of Myalgic Encephomialius exercise is generally divided into 4 different levels of effort, ie easy Beginner at 50 to 60% Max heart rate over time,
Fat burning 60% to 70 % Max heart rate over time,
Aerobic Fitness 70 % to 80% Max heart rate over time,
and finally High Intensity 80 % to 90% Max heart rate over time
I have found the technical approach just far to variable for me. ie So in a ME state there are just to many variables in it for me just yet, ie if I am hydrated / dehydrated, dependant on recent nutrition and safe foods versus non safe foods and amounts of each, dependant on rest and sleep and quality of sleep, dependant on state of immune system, cold flue, sore throat, glands, medication, stress, emotional and obviously physical - all these variable effect my heart rate and make it difficult to plan any exercise regeime even if its an extreamly easy one so I defauly to walking up and down the driveway (1600 metres) on days when I am feeling OK. (I live on a farm).
So even though I'm familiar with the technology, the application of it, I'm not in a place where I can sustainably take advantage of it.
The very best videos I have come across for ME/CFS sufferers are provided by Dr Nancy Klimas's group and available via
http://cfsknowledgecenter.ning.com/group/theexercisegroup?xg_source=msg_wel_group
Cheers
Al
Psuedo VO2max is about $150 for an hour test times 2 days, Proper Vo2 max @ $500 per day (with pre and post lactate tets on both days)
and not widely available"
In sports mad 'Melbourne' Victoria Australia with a popuation of approximatly 4 million people, where there are 13 fully professional football teams alone over 4 different football codes there is only one commercialized VO2max facility.
Aerobic Fitness zone of 70 % to 80% Max heart rate over time, WITHOUT INDUCING A CRASH (its relative to time and it has to be for longer than 15 minutes preferably 30 minutes.
Some lucky ME/CFS sufferers recover and get to a point where they can utilise heart rate monitors and comprehensive VO2max in the final stages of recovery.
All I know is I'm not there yet.
Hugs
Al
That said, after all the tests I myself have assisted with, this would be an extremely inappropriate test for a CFS patient.
Testing protocols would have to be severely altered and fine-tuned for patients who are cardiovascularly debilitated.
Because we are a Community College and receive state subsidies the cost is quite reasonable, $65.
We also do sub-maximal testing using a stationary bike, that might be more effective, but I still couldn't see myself being able to do it.
Bummer.
The way Dr Nancy Klimas has adapted it is very good but you would have to comit to a heart rate monitor that talks to a watch (have no allergy issues to the chest mounted device) and be in a stage of ME/(CFS) where you are able to get into 60% to 70% max heart rate sustainably for 5 to 10 minutes without inducing a crash.
Avoiding body crashes is paramount at all cost.
Youd probably want to ensure that you dont suffer Oxygen Toxicity induced ME/(CFS) like what Dr Paul Cheney has published where the PFO valve anomily is a culpret in inducing ME/(CFS) where dystolic chamber back flow is limiting the total circulatory volume of blood around the body before you comit to a ME/(CFS) friendly VO2max like what Dr Nancy Klimas has developed.
http://www.medicalinsider.com/cardiac2.html
http://forum.notcrazy.net/index.php?topic=5276.0
All the best
Al
my rheumatologist says "if you can exercise for one hour a day, it will change your life". I cannot figure out if he is saying this because he is hoping I will one day be able to or if he is castigating me because I can only exercise 10 minutes. I KNOW it would change my life if I could exercise for an hour a day. that is the point! I cannot!
I absolutely love the feeling of physical exertion and the wonderful after effects, the endorphins, the feeling of peaceful calm. I love the feeling of accomplishment that comes with earning another belt, or shaving a few seconds off your time. I am not avoiding exercise because I do not like it, i avoid it because it dois not like me!
I sincerely hope that there will become available a way to measure our setpoints and then be able to increase them.
SS, I find it very upsetting when doctors make remarks like that. I'm sure everyone in this community would be thrilled to engage in physical activity if we were able. I've come to expect peers who do not understand the illness to say "if you just exercise, you'll feel better"...but from a doctor? Unacceptable...unless he includes a very long list of caveats. :-)