What effect did a 2-day CPET test have on you?

[Singout]

Hi, everyone,

I'm seriously considering getting a 2-day exercise test done by Betsy Keller in Ithaca. I'm interested in hearing how it has helped others: I'm mainly considering it for insurance purposes as my claim for government pension plan disability insurance has been initially denied. Also, I was asked to do a basic stress test by a rather hostile cardio and refused: I'm worried that I'll get asked to do a similar test and won't have the benefits I would get from Keller.

I'm wondering how others who have done this test have been helped by it. It's clear that a negative result would give me a concrete diagnosis--every other test I've done so far says there's nothing wrong with me. What other useful info does it provide? Did it lead to helpful treatments?

Also wondering what the post-test crash impact was (although we're all different!) I'm presently mostly housebound, and spending a lot of time in bed, although I haven't been experiencing a lot of extreme fatigue when resting.

Thanks!

 

[*GG*]

I had the testing done with Betsy Keller in Ithace I think it was in 2010? I had a major crash in 2009 and was out of work for almost 3 months, I did not exercise for about 1 year after this to let my body recuperate. I was about 40 years old then, and it was supposed to be part of a study for XMRV, which did not pan out.

I am in the process now of applying with disability, not through Social Security, since I had not paid into it for the 13 years that I was employed with the State of MA. Hopefully it will be useful in the process, but not certain due to the foot dragging of the US gov't with funding and since that was at least 4 years ago now.

Not sure what kind of Dr you see, but my Dr has found some major issues with some of my blood tests!

I am probably more functional than many, then and now, but this illness has had a major impact upon my life

It did NOT lead to helpful treatments for me, at least not that I am aware of.

GG

 

[Dr.Patient]

Please refer to the thread CPET... started by @alex3619 . I was homebound when I took the 1 day test, and was able to do only 5 min. I am still in a relapse triggered by that test done more than a year ago. It is a miserable , horrible choice patients have to make between either that or no income...Do everything you can to avoid the test, perhaps show them mitochondrial tests, other special tests that you can look here on this forum that show abnormalities, a journal written by you, statements by family, friends, your income level before you got disabled, etc, and get a good attorney. If you have no choice in the end, get the test from an ME specialist who knows how to interpret it in view of your illness.

 

[Gingergrrl]

@Singout I've posted about this issue, too, in other threads but want to respond to you here as I think it is very important. There is a blog called Occupy CFS by fellow PWC, Jennie Spotila, in which she chronicles her entire experience with the CPET testing in Ithaca. It will be helpful for you to read her experience and it is very detailed.

I am in CA and investigated the CPET test through the Workwell Foundation (former Pacific Fatigue Lab) and could have done the official test in Anaheim (about 1.5 hrs away.) I almost scheduled it but then my health worsened and my local doctors did not think it was worth the risk for me. I have tachycardia which I am working desperately to get under control, and I think the CPET test would have caused an even worse relapse than I am in now. The test is also ridiculously expensive (over $2000) so I declined.

Instead, I am finally seeing a CFS specialist next week and am hoping the documentation that he can provide will be enough for disability. Although I am seeing him for assessment and treatment, regardless if it ever helps me with disability, I just want to get better and have a life again.

I am still on short-term disability through my employer which will hopefully switch over to long-term (meaning another six months) although they have given me a hard time. I have two doctors telling them that I cannot work and so far even though they give me a hard time, it has gotten approved.

For me, the CPET testing is not worth the potential relapse to my health but everyone is different and only you know your level of functioning and what is best for you.

 

[Gingergrrl]

Please refer to the thread CPET... started by @alex3619 . I was homebound when I took the 1 day test, and was able to do only 5 min. I am still in a relapse triggered by that test done more than a year ago. It is a miserable , horrible choice patients have to make between either that or no income...Do everything you can to avoid the test, perhaps show them mitochondrial tests, other special tests that you can look here on this forum that show abnormalities, a journal written by you, statements by family, friends, your income level before you got disabled, etc, and get a good attorney. If you have no choice in the end, get the test from an ME specialist who knows how to interpret it in view of your illness.

I agree with @Dr.Patient and I will get an attorney down the line if needed. I can show documentation that I worked full-time in my career for 16 yrs before getting ill and have proof of when I got mono/EBV and the continuous decline in my health since then. I cannot prove "CFS" per se but I can prove the cardiac issues, thyroid issues, autonomic issues, etc, and that will probably be the best route to go.

 

[SOC]

I have not done the 2-day CPET. I've done the 1-day and the submaximal. The 1-day test gave me PEM for a few weeks, although I don't recall it being terrible PEM. The submaximal test was very easy and did not give me PEM.

What did I get from the tests? I learned what my AT is, so I could pace correctly. That was a BIG help because I finally stopped overdoing and being in a constant state of PEM. I stopped slowly declining. Now that I'm doing better (years later), my exercise physiologist has data specific to me to help guide me to appropriate activity/exercise. I know that I can only do 5 minutes of activity equivalent to moving around the house (15W) before I'm overdoing. For me, it was worth doing, even with a few weeks of moderate PEM, since I was PEMing myself constantly anyway. That won't necessarily be true for everyone.

I did not need the CPET data for a disability claim, but many people do. That may be the most critical reason to do the test. If you can't get disability without out it, you don't have much of a choice.

The 2-day CPET might give you a lower, but more accurate, AT. I know some measures are lower the second day, but I don't know if AT is one of them. Sometimes the 1-day CPET does not show sufficient disability, so the 2-day is needed to show the second day collapse. It is also a lot more likely to give you serious PEM.

If I just wanted to know my AT for activity management, I'd do the submaximal test -- it gave me the same AT as the maximal test with no excessive exercise and PEM. I would, however, do the 2-day test if it was for research or if I had to get disability or starve.

 

[Gingergrrl]

I have not done the 2-day CPET. I've done the 1-day and the submaximal. The 1-day test gave me PEM for a few weeks, although I don't recall it being terrible PEM. The submaximal test was very easy and did not give me PEM.

What did I get from the tests? I learned what my AT is, so I could pace correctly. That was a BIG help because I finally stopped overdoing and being in a constant state of PEM. I stopped slowly declining. Now that I'm doing better (years later), my exercise physiologist has data specific to me to help guide me to appropriate activity/exercise. I know that I can only do 5 minutes of activity equivalent to moving around the house (15W) before I'm overdoing. For me, it was worth doing, even with a few weeks of moderate PEM, since I was PEMing myself constantly anyway. That won't necessarily be true for everyone.

I did not need the CPET data for a disability claim, but many people do. That may be the most critical reason to do the test. If you can't get disability without out it, you don't have much of a choice.

The 2-day CPET might give you a lower, but more accurate, AT. I know some measures are lower the second day, but I don't know if AT is one of them. Sometimes the 1-day CPET does not show sufficient disability, so the 2-day is needed to show the second day collapse. It is also a lot more likely to give you serious PEM.

If I just wanted to know my AT for activity management, I'd do the submaximal test -- it gave me the same AT as the maximal test with no excessive exercise and PEM. I would, however, do the 2-day test if it was for research or if I had to get disability or starve.

@SOC What do you mean by the sub maximal test?

 

[SOC]

@SOC What do you mean by the sub maximal test?

The submaximal test only takes you up to, but not over, your AT. For that reason, you are unlikely to PEM from the test. Mine was super easy. It gives you good information for pacing -- AT and time from rest to AT.

I don't believe the submaximal test is acceptable for disability. It doesn't give your VO2max, since you don't go all the way to maximum aerobic capacity.

 

[Gingergrrl]

The submaximal test only takes you up to, but not over, your AT. For that reason, you are unlikely to PEM from the test. Mine was super easy. It gives you good information for pacing -- AT and time from rest to AT.

I don't believe the submaximal test is acceptable for disability. It doesn't give your VO2max, since you don't go all the way to maximum aerobic capacity.

@SOC Is it still a bike test or something else? Also, how would it show the difference in anaerobic threshold between day one and two (if that is the measurement for PEM) or is it not meant to do this?

 

[Valentijn]

A one-day CPET crashed me for a couple weeks. Nothing major though ... I wasn't bedbound.

 

[SOC]

@SOC Is it still a bike test or something else? Also, how would it show the difference in anaerobic threshold between day one and two (if that is the measurement for PEM) or is it not meant to do this?

It's a bike test. It's the same as a normal CPET except that you stop sooner -- before you exceed your AT. I don't know about the change in HR at AT from day one to day two. I know work load at AT decreases on day 2, but I don't know if HR (which is what we use to pace) changes. Maybe someone who knows more about the results of the 2-day CPET can chime in here.

 

[SOC]

A one-day CPET crashed me for a couple weeks. Nothing major though ... I wasn't bedbound.

Same here.

 

[Dr.Patient]

Same here.

@Singout
Nobody knows how badly the test will affect you. Looks like there are people who were affected for a couple of weeks, and me, more than a year, etc. I agree with @Mij that the more you put your body through, the longer or even permanent the damage can be.

 

[Dr.Patient]

You can also try the Krebs cycle test that will show impairment in your energy production cycle.

 

[SOC]

@Singout
Nobody knows how badly the test will affect you. Looks like there are people who were affected for a couple of weeks, and me, more than a year, etc. I agree with @Mij that the more you put your body through, the longer or even permanent the damage can be.

Agreed. This is true about practically everything about this illness. There is such a variety of pathogens, immune dysfunctions, endocrine abnormalities, and types of orthostatic intolerance among us, it's difficult to know how any one treatment or activity will affect any of us. Add to that the fact that we are all taking different treatments and supplements, as well as engaging in different degrees of pacing (or not), predicting what will (or won't), work (or cause problems) for any specific person is very difficult.

 

[SOC]

@Singout,
Having given it some more thought over the past couple of days -- I have a couple of suggestions. Because you can't know how the CPET test is going to affect you, you could try doing only as much of the test as you need for your purpose. If you're doing it for research or a definitive diagnosis necessary for disability or treatment, then you might need the 2-day CPET, regardless of consequences. If all you want is to know your HR at AT for pacing, the submaximal might be sufficient with the least risk.

Whatever level of testing you decide to do, plan to go into full-on rest mode afterwards. If that means complete bedrest, then do it. If the CPET uses all the energy you have, then continuing your normal life may make your condition much worse than it would be if you arranged to recover from the test. If you're lucky and you're not crashed after 4 days, then you escaped PEM from the test and can skip the recovery period.

 

[alex3619]

I think the primary value from the 2 day CPET is advocacy and science related, not clinical. Those who do not need the test shouldn't do it. If submaximal testing gets our AT, then that would do if you want it for pacing. Most of all, I do not want to see a situation where insurance companies, or government officials, require this test of people. If its mandatory the risk of damage is probably higher, as those who know they are too sick may still be forced to participate.

The point of doing the two days is to show the energy crash. Only in cases of disputed diagnosis would this really be important, and is probably about insurance claims or research.

There is a big difference between the scientific and political impact of this test and the clinical one.

One big issue I have with clinical use is if you get a CPET or 2 day CPET from people who are unfamiliar with ME, then they will not be aware of the risks. This means most places cannot currently do a 2 day CPET safely, even presuming you could convince them to go beyond a one test protocol.

Politically and scientifically though we should be making very sure that government officials, doctors and psychogenic psychiatrists are all aware of this test. The empty claims they make about there being nothing wrong with patients are patently obsolete. They always have been out of touch with the science, relying more on persuasive rhetoric than evidence and reason, but now its undeniably clear. I think they built some of their success on the usual medical experience that everything comes back negative (to standard and routine tests). This makes it easier to convince people that there are no abnormal tests, yet clearly the medical literature shows abnormalities in tests going back to 1955 at least. Indeed CPET may be from 1949 or prior. I really wish Ramsay were still around so we could ask him if CPET was ever considered on ME patients. Maybe Hyde would know?

So my question is: how many have had the one day CPET? How about other measures of capacity, including the six minute walking test? How about metabolic testing? What are the pros and cons of each for different purposes?

 

[Valentijn]

So my question is: how many have had the one day CPET? How about other measures of capacity, including the six minute walking test? How about metabolic testing? What are the pros and cons of each for different purposes?

I had the one-day CPET, with multiple indications of maximal effort (respiratory quotient and heart rate). People involved in any sort of disability assessment, including both doctors and non-medical personnel, seem to love it.

So far both assessors who I've seen have known exactly what it means, and been completely confident in the positive outcome of the disability-related matter once they saw it.

 

[Singout]

Thanks, everyone, lots there to think over. I really appreciate the time and thought you've put into this.

When I look into local athletic clinics that seem to do anaerobic threshold testing, some do "lactate" instead of "VO2." Is this just as good?

Factors I'm trying to sort through in making a decision:

• I don't know how bad the PEM would be after a 2-day test, and don't want to have a bad crash, especially as I'm single (although I live with a friend and am in a community of supportive friends).
• 
  
• I have NO access to a M.E. specialist in my region (Ontario) who can recommend, order, and analyze tests for me. So far my GP has been good about tests/specialists I suggest, but it's up to me and my foggy brain to sift through lists I find online and try to figure out what to ask for, see what the wait time is, and then hope the tester/analyser is knowledgeable.
• 
  
• So far all my tests have said I'm "normal" (I hate that word now!) I've also heard "Not quite normal but don't worry about it" a few times. My personal statement on the disability application and GP's statement clearly say I'm not, but the decision seems to be relying on the other tests (OK sleep, improved BP).
• 
  
• The friend who will drive me to Ithaca (four hours including a border crossing) is only available through August.
• 
  
• I have enough savings that I won't starve if I'm not on disability right away. If I knew I'd recover enough to be able to work in a few years I wouldn't worry about it. But the savings won't last forever, and there's a time limit on the disability application.
• 
  
• A hostile and skeptical cardio had me do a normal treadmill stress test after my HUT a few months ago: I quit after 2 minutes because I was worried about causing a crash (although I felt oK and didn't crash). Fortunately this isn't coming up in my record as I make this claim, but I'm worried the same thing might happen again.

I might try to do the submaximal test here in Toronto, and see if the results from that are poor, and use that to help make a decision re the 2-day test. I'll also see what my lawyer says re what will convince the disability people, but others have said it's really medical evidence and not much else.

Thanks again!

 

[Dr.Patient]

@alex3619 I have had a 1 day test. I was thinking about the 6MWT (6 minute walk test) too, perhaps that is less invasive than CPET?