'CPET' -- An appropriate test for assessing/diagnosing ME/CFS?

[Dr.Patient]

It is not a matter of having the strength or even feeling tired. It is a matter of when your body is using primarily anaerobic glycolitic metabolism. You don't necessarily "feel" that point in the moment. Our bodies are not designed to tell us exactly when we have reached our AT. HR monitors are.

If you did the CPET testing, then you know your AT. Why don't you use the data you have instead of guessing? That would be a more scientific approach. If you wore a heart rate monitor and modified your activity according to your AT instead of simply going by how you feel, you will very likely notice the difference. Many of us have been there and can attest to this. Most of us have to do a lot less than we thought in order to stay below our AT.

Realistically, doing anything less than my already homebound state means that I have to lie down most of the day (which I do several times during the day now). So, you guys wear a heart rate monitor, and stop whatever you are doing when the beep goes off? I don't quite understand that.

 

[Dr.Patient]

Yes. The first test, which I have since found out was abnormal, was called "deconditioning" by the (inept) doctor who ordered the test. It was submitted to SSDI as such.

My TTT resulted in the same story - attending cardiologist who evaluated the test called it an "anxiety response" and it was submitted to SSDI as such. Again, I later found out that it was clearly abnormal and indicated severe POTS, for which I am now being treated.

Thus, my claim was denied. This time, I am in the hands of ME/CFS experts for my appeal. They strongly recommend the 2-day test as documented, accepted evidence of my disability. I feel that I have no choice. I'm running out of resources and cannot afford another denial. I've been at this claim for nearly 2 years.

May I ask who these experts are that recommend a 2day test?

 

[SDSue]

@Dr.Patient Wearing the HR monitor has helped me more than anything so far. I've been able to manage the severe ups and downs and PEM quite effectively. It makes this disease feel much more predictable.

That said, I can often be heard cursing at the #$% thing when it tells me to sit!

Edit: ME/CFS docs at INIM

 

[SOC]

Realistically, doing anything less than my already homebound state means that I have to lie down most of the day (which I do several times during the day now). So, you guys wear a heart rate monitor, and stop whatever you are doing when the beep goes off? I don't quite understand that.

Yep, that's what I do. Well, most times I sit in a recliner rather than lie down because that works for me. It doesn't work for everyone.

I had to cut back hugely on what little I was already doing. The difference? I started getting slightly better rather than continuing the downhill slide. My treatments worked better. I was in less pain. I was able to plan and schedule activities because my life was no longer completely unpredictable. Getting rid of the push-crash cycle is a big quality of life improvement. It also allows treatments to work since you're not constantly stressing your body. Imagine trying to get over a major infection while running a marathon every day. That's what you're asking your body to do if you operate over your anaerobic threshold almost continuously.

This is the reality of ME/CFS. Lots of us spend years in denial, trying to do more than our bodies can handle, but in the long run we have to face the reality so that we can make as much improvement as possible.

 

[SOC]

That said, I can often be heard cursing at the #$% thing when it tells me to sit!

Me, too! Oh, how I cursed at the thing in the early days. It helped when I had students around. They LOVED to nag the teacher to sit down when the alarm went off.... and I couldn't curse at them.

 

[Dr.Patient]

Yep, that's what I do. Well, most times I sit in a recliner rather than lie down because that works for me. It doesn't work for everyone.

I had to cut back hugely on what little I was already doing. The difference? I started getting slightly better rather than continuing the downhill slide. My treatments worked better. I was in less pain. I was able to plan and schedule activities because my life was no longer completely unpredictable. Getting rid of the push-crash cycle is a big quality of life improvement. It also allows treatments to work since you're not constantly stressing your body. Imagine trying to get over a major infection while running a marathon every day. That's what you're asking your body to do if you operate over your anaerobic threshold almost continuously.

This is the reality of ME/CFS. Lots of us spend years in denial, trying to do more than our bodies can handle, but in the long run we have to face the reality so that we can make as much improvement as possible.

My doc had told me about it, but I didn't do it for my reasons. After reading what you wrote here, I will give it a try, thank you!

 

[SOC]

My doc had told me about it, but I didn't do it for my reasons. After reading what you wrote here, I will give it a try, thank you!

Good luck! I hope it helps. It's hard to do when, like me, you were a very active person pre-ME. But it is worth doing, you just have to look at the big picture in order to stay sane while doing not much.

 

[Dr.Patient]

Any recommendations on a heart rate monitor? I am not going to wear a chest strap. Thanks.

 

[SOC]

Any recommendations on a heart rate monitor? I am not going to wear a chest strap. Thanks.

All I've used is the chest strap. I didn't want the chest strap, but it was all that was available at the time. The main features to look for, imo, are:
1. continuous reading -- you don't want to be watching it or pressing a button all the time. And the temptation not to look when you don't want to know you're overdoing is high.
2. zone alarms -- so that you can set it to alarm just below your AT. Again, this is so you don't have to keep watching it, you only need to pay attention when the alarm goes off.
3. replaceable batteries -- since we wear them all the time, we go through a lot of batteries. It is a HUGE pain to take it or send it somewhere to have the batteries replaced as often as we need them to be.

If you have enough self-discipline, you won't need to wear the HR monitor all day forever. Once I learned what I could do around the house without going over my AT and trained myself to stick with those activities (which took 3-4 months), I didn't have to wear it as long as my day was routine. After that I would wear it when I wasn't feeling well (because I could do less without going over my AT), when I was doing more than usual around the house, or when I went out. I also wear it for a couple of days a month during my normal activities to check myself -- to see if I've slipped into doing too much or if I can do a little more as I got better.

 

[Dr.Patient]

Thank you SOC! It would be helpful if somebody can give me some brand names...

 

[SDSue]

I'm happy with my Polar FT4. It does everything @SOC recommends.

Coincidentally, my battery went dead today, after about 2 months of continuous daytime use. I had on hand a supply of batteries, but found that the wrist unit takes a different battery than the monitor. Minor detail, but good to know in advance.

Good luck to you.

 

[Isabelle]

I had a 1 day CPET done a year ago, and still suffering from the relapse that it caused. It is an unethical and harmful test. It should be banned for CFS patients.

Hi Dr.Patient,

Sorry about the late reply - and your experience with the 1-day CPET. I saw a lecture by Dr Snell - he seemed a very nice man - and he was concerned that a couple of patients ended up being taken to hospital by ambulance following a 2-day CPET. It may be the best test we have at present, but I don’t think the potential cost to the patient is insignificant. When ME/CFS is bad it is very bad, as everyone here knows only too well.

 

[Valentijn]

I also guess that moderate-severe, severe, and very severe patients will show abnormalities under less demanding conditions, but that is not suitable as a biomarker since it doesn't identify all patients.

I'm moderate-severe (mostly housebound) and had pretty bad results on a single CPET while fairly rested. If my correct resting heart rate had been used, my VO2max would have been about 35% of expected based on the usual calculations. Instead they used my sitting-up-too-long heart rate, which was around 90 - my real resting heart rate is 70-75.

But my actual VO2max was still low enough (11.9 mL/min/kg) on a one-day test to show class III or class IV disability on the AMA scales, indicating moderate to severe disability. Assuming my diagnosis is correct, my results would have been at least 20% worse on day 2 (based on reductions seen in less severe ME patients), meaning a VO2max under 10, and well into the severe range of both the pulmonary and circulatory AMA disability scales.

So yeah, no 2-day CPET needed to show disability for all of us

PS - My RQ (RER) went up to 1.23. I think that means that I might be a little nuts when it comes to putting effort into something

 

[Valentijn]

Yes. The first test, which I have since found out was abnormal, was called "deconditioning" by the (inept) doctor who ordered the test. It was submitted to SSDI as such.

What a crock. The one day CPET can be low due to deconditioning, but with a clear diagnosis of ME/CFS + all of the 2-day CPET research, that should be more than sufficient to indicate that deconditioning isn't your problem.

 

[Valentijn]

So, you guys wear a heart rate monitor, and stop whatever you are doing when the beep goes off? I don't quite understand that.

I do this for more demanding activities. I have a waterproof wrist unit, so I wear it before, during, and after a shower. It means I might spend 30-60 resting in the process of preparing, taking, and recovering from a shower, but at least this way I don't crash afterwards, or even get as wiped out for the day.

I also wear it for trips out of the house, and gardening. An alarm goes off at 100-109 bpm, and a more beepy alarm at 110+. I don't necessarily "stop" what I'm doing, but I take measures to get my heart rate down to at least 85-90 before proceeding with the activity. So if I hit 100 taking a shower, I put a leg up on the bathtub rim and rest my arms over my legs (not up in the air to wash my hair) until things improve. And things do quickly improve that way.

The heart rate monitor lets me know when I am going too far, because I really can't feel it until it's too late. My pulse pressure is weak, so I never get a pounding sensation when my heart rate gets too high.

And the monitor also shows me what tricks can help in lowering my heart rate. Laying on my right side makes my heart rate rise, but laying on my left side lowers it. Getting one foot off the ground when sitting with my legs down is almost as good as having both legs up, so putting one foot up on the dashboard in the car is great, or one leg up on the edge of the bathtub, or crossing one leg oven the other when stuck in a doctor's waiting room.

But I don't wear the monitor all the time. My heart rate is pretty stable when sitting with my feet up at home on the couch or on my bed in the living room. Same for sleeping, or very short essential activities like going to the bathroom.

 

[Valentijn]

They LOVED to nag the teacher to sit down when the alarm went off....

On a somewhat related note, that's another great use of the heart rate monitor - it can show skeptics in your personal life how easily your heart rate is rising. It goes from being "SOC is a wuss and thinks she's too weak to do anything" to "the heart rate monitor is saying that SOC needs a rest!" Instead of silly ol' us telling them we need a break, it's a trusted machine telling them

 

[Valentijn]

Any recommendations on a heart rate monitor? I am not going to wear a chest strap. Thanks.

I've got an Alpha Mio now, and it's awesome. It uses optics to detect heart rate in the wrist, and has a motion sensor to correct for arm movements. But it's expensive (150+ euros) and useless in a moving car. It's water-proof, which is great in the shower, and has a USB battery charger that comes with it. There are also wrist units without the motion sensor, which are a lot cheaper.

A pulse oximeter works well for very sedentary activities, but doesn't handle movement. So basically good for spot-checking when sitting or standing, or immediately after an activity. They're quite cheap (20+ euros) and have the added benefit of showing oxygen saturation.

I started off with a pulse oximeter after I turned blue one night about a year ago, and then my fiance and mom teamed up to buy me the Alpha Mio a few weeks ago

 

[Artstu]

I find it interesting that those who use H/R monitors stick rigidly to below a certain heart rate that is just below your tested AT, which was just just one day in time. and yet you acknowledge that if doing a day 2 CPET test the AT would arrive sooner and at a lower heart rate.

So how do you know if you're working to the correct rate on a particular day? also do you not think that your AT could be moving up and down constantly depending on how the illness affects you in that moment in time, or that your AT may have actually improved, but you'll never know because you're sticking rigidly to that one heart rate.

 

[SDSue]

A pulse oximeter works well for very sedentary activities, but doesn't handle movement. So basically good for spot-checking when sitting or standing, or immediately after an activity. They're quite cheap (20+ euros) and have the added benefit of showing oxygen saturation.

I started off with a pulse oximeter after I turned blue one night about a year ago, and then my fiance and mom teamed up to buy me the Alpha Mio a few weeks ago

Can you tell more about the pulse ox? I need one that keeps a record during sleep. Am I correct in thinking a pulse ox would show what's actually happening during sleep? It'd be nice to know before taking anything stronger for sleep. (Sleep study was a fail because apparently one must actually sleep lol)

I find it interesting that those who use H/R monitors stick rigidly to below a certain heart rate that is just below your tested AT, which was just just one day in time. and yet you acknowledge that if doing a day 2 CPET test the AT would arrive sooner and at a lower heart rate.

So how do you know if you're working to the correct rate on a particular day? also do you not think that your AT could be moving up and down constantly depending on how the illness affects you in that moment in time, or that your AT may have actually improved, but you'll never know because you're sticking rigidly to that one heart rate.

Great question. @SOC likely knows more, but here's my 2 cents:

Yes, the AT can change from day to day. Setting the monitor's upper limit at about 80% of actual AT provides a buffer of safety. I have found the HR that is safe on the majority of days. I'm sure there are days that it's higher and I could do a bit more, that comes at great risk of the up/down unpredictability.

The time required to reach my AT varies considerably from day to day and certain activities are MUCH worse.

Wearing the monitor has taught me that I can't shower standing or even sitting in a shower chair, but must recline in the tub with my feet propped up and use a hand held shower. That alone has enabled me to shower more frequently, without crashing, which has greatly increased my sense of well-being.

I've given up a little on "good" days, but my average functioning is higher. Being able to spend every day on the sofa beats one day up and 4-5 days in bed, in pain, recovering from that one day. As I am housebound, the monitor has helped me learn to more effectively spread out my household duties and self-care with less risk of crash.

As @Valentijn and @SOC have said, the HR monitor is invaluable in helping others understand my limitations. A beeping machine speaks much more loudly than me saying "Gee I don't feel well I'm going to lie down."

It's not a perfect system, but it's one more weapon in my arsenal. I'm up against a worthy foe - I need every weapon I can get!

 

[Valentijn]

Can you tell more about the pulse ox? I need one that keeps a record during sleep. Am I correct in thinking a pulse ox would show what's actually happening during sleep? It'd be nice to know before taking anything stronger for sleep. (Sleep study was a fail because apparently one must actually sleep lol)

You might need something a little more complicated for that. Either a bigger and more expensive finger unit, or a wrist unit with a finger clip attached to it. It looks like some of the "recording pulse oximeter"s use a little finger pocket instead of a clip - probably better for not emitting light when you're trying to sleep and for not falling off.