How do I get a 2-day CPET I can afford?

[RedFox]

So, I need a 2-day CPET. My doctor ordered one for me. Problem is, I can't find anyone to do it.

I live in Pittsburgh, Pennsylvania. My insurance is Medicare. First I called both major health systems in my city, and they both said they can't do it. Then I called the Cleveland Clinic, and they sounded really reluctant, but they want my doctor to call them about it. (I'm not optimistic) Then I called Mayo Clinic and they said they can't do it.

Uh...now what? I'm not sure if I can afford Workwell or Betsy Keller. Or physically get there without permanently deteriorating. (The test won't, long story, mental vs physical PEM affect me differently) It's also extremely unjust what's happening to me. I'm not sure what to do besides spend the rest of my life feeling like I'm terminally ill but having no idea what's wrong.

 

[Hutan]

Do you need the test for an insurance claim or something like that? Or is it to help you know whether you have ME/CFS or something else?

If it's the latter, my experience might be relevant. I did a 2 xCPET as part of a study, and I showed the typical ME/CFS response. However, that has not changed my treatment (what treatment? nothing). My doctors are not at all interested in the result as they don't know what it means. I still feel unsure as to what I and my son have - I still continue to investigate other options to the limited extent that I can. I don't yet feel that the 2xCPET is sufficiently diagnostic to not remain alert for other possible explanations. I'm not sure that a 2 xCPET achieved at a great deal of cost or effort is particularly worth it, except for convincing someone that you deserve a financial benefit.

If you want or need one, I think many exercise physiology departments and exercise physiology services for elite athletes will have the capacity to undertake a CPET - this is standard exercise physiology. Perhaps ask a physiotherapist for a local sports team for a recommendation or ask your local hospital who does CPETs for people with heart conditions.

Even if you have to pay for the two tests, the cost would probably not be horrendous. Ideally you will educate the service a bit as to how to keep you safe. I believe that Workwell has information that you could provide to the service, or you could contact Workwell as to what you need to tell the service.

 

[RedFox]

Do you need the test for an insurance claim or something like that? Or is it to help you know whether you have ME/CFS or something else?

Well, my doctor ordered so it's obviously medically necessary. I tried contacting a bunch of VO2Max labs around me, but they all ghosted or said they couldn't do it. Same thing happens when I try to get it through a medical clinic. I called both AHN and UPMC, and personally talked to the people who do CPETs. They told me they only do the 1-day.

More explanation: Personally, I need to find out what's actually wrong with me. I have some weird autoimmune test results and I simply can't bear the idea of being given an ME diagnosis and wasting away in the off chance I have an odd presentation of a rare autoimmune disease or something.

 

[Hutan]

Well, my doctor ordered so it's obviously medically necessary.

Not a cast-iron certainty. But, if your doctor ordered it, maybe it's on them to find somewhere for the test to be done?

They told me they only do the 1-day.

It's unlikely that any exercise physio person near you will have heard of the 2 day tests. But that's ok. Because all you need them to do is the CPET test that they are familiar with on one day, and then the same CPET test on the next day. If they are used to testing people with heart conditions, they will probably be safe enough. Their standard reports will probably be fine.

In terms of getting an analysis of the results they give you, it's not complicated. You just compare the results. If you needed anything official written about the comparison, I expect you could send the results of the two tests to Workwell. I imagine Workwell charge for that, but I'm sure you wouldn't be the first person to ask.

 

[RedFox]

Not a cast-iron certainty. But, if your doctor ordered it, maybe it's on them to find somewhere for the test to be done?


It's unlikely that any exercise physio person near you will have heard of the 2 day tests. But that's ok. Because all you need them to do is the CPET test that they are familiar with on one day, and then the same CPET test on the next day. If they are used to testing people with heart conditions, they will probably be safe enough. Their standard reports will probably be fine.

In terms of getting an analysis of the results they give you, it's not complicated. You just compare the results. If you needed anything official on the comparison, I expect you could send the results of the two tests to Workwell. I imagine Workwell charge for that, but I'm sure you wouldn't be the first person to ask.

I understand anyone with the right equipment can to a 2-day CPET. I think the problem is lack of someone to interpret the results. What I personally want is a data file of the breath-by-breath data so I can see it myself, but I also need a professional to write a report saying something like "This test shows Thomas has post-exertional malaise and a metabolic disturbance that cannot be explained by deconditioning." That requires looking at both tests.

I have a pulmonologist appt. coming up. Maybe I can ask them. IDK.

 

[Ryan31337]

One option you could consider is booking a regular 1-day VO2max test, but exercise to exhaustion at home the day before, emulating a 2-day test.

If you do have the sort of response seen in some ME/CFS patients, you may show some sort of abnormality in the test that will be reported, even when seeing someone not clued up on ME/CFS/2day CPET.

For me that was low VO2max, below the 80% "just deconditioned" threshold, and low O2 pulse. This was reported as "cardiovascular limitation" but because stroke volume was normal it was assumed "functional impairment likely due to metabolic cause". Respiratory measurements were largely normal so there was no ventilation/perfusion impairment.

I had also done a second test well rested; the results weren't as bad. But that was probably unnecessary as a non-invasive CPET can't isolate the causes of poor performance beyond broad categories like respiratory or cardiovascular limitation anyway - I got the report discussed above without the tech seeing the rested results. Any more comparison/analysis is just conjecture at this stage really.

 

[RedFox]

This is also very deeply entwined with my mental health issues. Every time I try to get this test, and something stops me, I begin spiraling emotionally. I feel extremely powerless and dysphoric with a strong sense of (for lack of a better term) moral injury.

 

[DokaGirl]

I understand anyone with the right equipment can to a 2-day CPET. I think the problem is lack of someone to interpret the results. What I personally want is a data file of the breath-by-breath data so I can see it myself, but I also need a professional to write a report saying something like "This test shows Thomas has post-exertional malaise and a metabolic disturbance that cannot be explained by deconditioning." That requires looking at both tests.

I have a pulmonologist appt. coming up. Maybe I can ask them. IDK.

Yes, maybe your pulmonologist can test you. Here's hopeing. Maybe they'd be into doing a 2 day CPET out of interest.

What others have said about the 2 day CPET is true. It can be very tough on pwME.

Hope things work out, take care.

 

[Jonathan Edwards]

I think the problem is lack of someone to interpret the results.

The problem is much simpler than that @RedFox. Nobody knows how to interpret a CPET in terms of clinical care. It is a research finding of uncertain significance. It has not been shown to be a reliable indicator of anything to do with ME for individual patients.

Anybody who says they can interpret a 2 day CPET in terms of clinical management is making it up. You are likely to find several people prepared to do that if you pay a lot of money but the money will be wasted. You are also likely to find doctors who recommend such tests for no good reason. Doctors are often wrong.

If the 2 day CPET shows 'typical ME pattern' it does not mean you have ME. If it does not show the pattern it does not mean you do not have ME. So it is a waste of your time.

 

[Hutan]

More explanation: Personally, I need to find out what's actually wrong with me. I have some weird autoimmune test results and I simply can't bear the idea of being given an ME diagnosis and wasting away in the off chance I have an odd presentation of a rare autoimmune disease or something.

I feel extremely powerless and dysphoric with a strong sense of (for lack of a better term) moral injury.

Your reaction to this situation sounds entirely reasonable. It's damn difficult and I'm sad that we all have to deal with this uncertainty.

Maybe exploring the clues that you have would help you feel that you have done what you can to rule out other causes of your symptoms for now? (e.g. see a good mainstream immunologist and talk about your autoimmune test results).

 

[Braganca]

Hi.. I’ve done the 2 day CPET with Betsy Keller. It sent me from moderate to severe and I highly recommend against doing it. (Bizarrely the researchers involved in CPET testing have convinced themselves its absolutely safe, even Maureen Hanson)

There is no clinical reason to do it, I only did it for insurance reasons. It’s been absolutely useless for doctors. Even with Systrom who does the invasive CPET, I feel it’s valuable for research, but for health — his patients could as easily do a trial of mestinon since that’s all he offers.

if you are trying to confirm or rule out ME, maybe a tilt table test would be valuable and a lot more accessible. Also would just continue to try and access non ME tests, like further autoimmune testing, since you already have signs of that.

I think that because you say you’re having a mental health reaction to trying to get this test, it’s even more reason to step back and wait a few months. Whenever I have been obsessed about trying to access or try something, almost inevitably in a few months I have clarity to have moved on and let go of that thing.

 

[RedFox]

Anybody who says they can interpret a 2 day CPET in terms of clinical management is making it up.

What if it affects how my mental health is managed? I'm sorry, I simply cannot go on without incontrovertible evidence I'm sick. I don't even care if it doesn't discriminate between diseases. I just need as much information on this as possible. This is the best thing I can do besides seeing an ME specialist and that's probably never gonna happen.

You're talking to someone who got diagnosed with autism twice because they doubted their first diagnosis. I never doubted I was autistic after the second one because they were autism specialists and used the gold standard (like the ADOS, etc.)

I have very significant personal reasons for this. I have a need, and I mean a need, for vindication. I've been medically gaslighted so many times I'm traumatized. I need a piece of paper that will make doctors never gaslight me again, and I barely even care if it's science-based at this point.

 

[RedFox]

Also...my mental issues will probably lead me down a road of pretty extreme self-harm (e.g. GET or self-help GET) if I ever "lose faith" in the idea I'm actually sick. Really it's not the CPET I want...I need some sort of absolute proof I'm suffering from an actual illness. Is there a more accessible way to get that?

 

[marcjr]

Also...my mental issues will probably lead me down a road of pretty extreme self-harm (e.g. GET or self-help GET) if I ever "lose faith" in the idea I'm actually sick. Really it's not the CPET I want...I need some sort of absolute proof I'm suffering from an actual illness. Is there a more accessible way to get that?

If all you need is the absolute proof, wouldn't an ICPET be more valuable than a 2-Day CPET? It is way more telling.
I got mine done recently at Boston, but I also inquired some other places before, one of them being Pittsburgh, where you live.
They do it at the University of Pittsburgh, here is more information: https://pulmvasc.pitt.edu/patient-care/acpet/

 

[RedFox]

If all you need is the absolute proof, wouldn't an ICPET be more valuable than a 2-Day CPET? It is way more telling.
I got mine done recently at Boston, but I also inquired some other places before, one of them being Pittsburgh, where you live.
They do it at the University of Pittsburgh, here is more information: https://pulmvasc.pitt.edu/patient-care/acpet/

I'm pretty adverse to the idea of getting the invasive CPET. Also, it won't confirm that I have PEM.

 

[RedFox]

Here is my update to this saga:

I sent my 2-day CPET order to a local hospital, and they talked to the director of pulmonology (or something). He said that I should go to their pulmonlologist (whom I was scheduled to see on Tuesday). This appointment is extremely high-stakes because I don't know how I'll access this test, or any objective proof I'm not crazy, if he doesn't order it. This has caused an extreme exacerbation of my cPTSD symptoms, which I frankly have no means of coping with.

 

[Hutan]

The 2xCPET won't give you objective proof that you aren't "crazy". Or even proof that you have ME/CFS. It won't prove that you do or do not have PEM.

If your 2xCPET is abnormal, you won't know for sure that you have ME/CFS. If it's normal, you won't know for sure that you don't have ME/CFS or some other sort of physical disease. We have had at least one member here not show the 'ME/CFS-type pattern' on the 2xCPET and then later find out that they had a different physical disease. So, a normal result doesn't mean that you are crazy.

This test is, at best, interesting, and perhaps useful for an insurance claim. Unless the CPET suggested some heart disease or something like that, I very much doubt that doing it will change much for you. Like I said before, I'm really sorry that we all have to deal with this uncertainty.

In terms of getting the pulmonologist to agree to the testing, I suspect you might do better to show them the ME/CFS CPET studies and try to get them a bit curious. If the pulmonologist feels that your well-being is tied to the outcome of the test in an 'extremely high-stakes' sort of way, I think that might actually make them feel that it's better to not do the testing.

 

[RedFox]

The 2xCPET won't give you objective proof that you aren't "crazy". Or even proof that you have ME/CFS. It won't prove that you do or do not have PEM.

If your 2xCPET is abnormal, you won't know for sure that you have ME/CFS. If it's normal, you don't know for sure that you don't have ME/CFS or some other sort of physical disease. We have had at least one member here test negative on the 2xCPET and then later find out that they had a different, very physical, disease. So, a negative result doesn't mean that you are crazy.

This test is, at best, interesting, and perhaps useful for an insurance claim. Unless the CPET suggested some heart disease or something like that, I very much doubt that doing it will change much for you. Like I said before, I'm really sorry that we all have to deal with this uncertainty.

In terms of getting the pulmonologist to agree to the testing, I suspect you might do better to show them the ME/CFS CPET studies and try to get them a bit curious. If the pulmonologist feels that your well-being is tied to the outcome of the test in an 'extremely high-stakes' sort of way, I think that might actually make them feel that its better to not do the testing.

If you think I've made a strategic mistake, then how do I obtain objective proof my disabling physical symptoms have a physiological, not psychosomatic, cause, and objective proof of the exact illness I have (or as close as you can get)?

What do I ask my doctor for? If I tell her I gave up trying to get a CPET, I'll look like a fool but I'm also willing to admit I'm wrong.

I feel like I'm doing the best I can here, as my efforts to find an ME specialist I can visit with travelling and who takes Medicare have turned up blank. I'm stuck with local doctors who know nothing about ME so I'm basically forced to use my own judgement. If I could see a clinician who actually understood M.E., and personally affirmed they were certain beyond reasonable doubt my PEM was 100% physical, I might be less interested in getting further testing. As long as I'm forced to act like my own doctor, I might keep making mistakes like this, because...I'm not a doctor.

 

[Hutan]

I feel like I'm doing the best I can here

I'm sure that you are. My view is that the physicians are stumbling around in the dark in much the same way as those of us who assume we have ME/CFS.

In terms of convincing yourself, I found tracking my symptoms for a while so that I understood them better was helpful. And hearing about the experiences of so many other people, most of whom seemed entirely 'uncrazy'. The fact that my two children developed the same symptoms as me at the same time helped me be sure it wasn't craziness, so, perhaps that is one lucky aspect to an otherwise dire situation.

In terms of convincing others, well, I don't know.

In terms of crossing off other possible causes for your particular symptoms, maybe a CPET is useful. My approach has been finding a doctor who seems smart, describing my symptoms and seeing what they suggest. And, then trying the process again whenever my symptoms have changed or I get up enough energy and enthusiasm and courage to try another doctor or another way of describing my symptoms.

Maybe others here have better ideas.

 

[Milo]

So it is a waste of your time.

It's also a waste of money particularly if performed by a random doctor and increases risks for a major crash which can leave them worse.

Your reaction to this situation sounds entirely reasonable. It's damn difficult and I'm sad that we all have to deal with this uncertainty.

Agreed. It's utterly frustrating to face uncertainty but also to be gaslit by the health care system. Personally I got better mentally when I gave up pursuing further consultations and off-label treatments, which most doctors in their right minds would not offer as it puts them between a rock and a hard place. There are no biomarkers nor there are FDA- approved treatments. We all live in the meantime.

It sent me from moderate to severe and I highly recommend against doing it

That is the danger. I am sorry it happened to you.

I sent my 2-day CPET order to a local hospital, and they talked to the director of pulmonology (or something). He said that I should go to their pulmonlologist (whom I was scheduled to see on Tuesday). This appointment is extremely high-stakes because I don't know how I'll access this test, or any objective proof I'm not crazy, if he doesn't order it. This has caused an extreme exacerbation of my cPTSD symptoms, which I frankly have no means of coping with.

Please don't do it.

The 2xCPET won't give you objective proof that you aren't "crazy". Or even proof that you have ME/CFS. It won't prove that you do or do not have PEM

+1.

Sending my best wishes to @RedFox. it's not easy.