Should I get the 2 day CPET? And how?

[Scarecrow]

A single CPET would be sufficient to identify when you switch from aerobic to aerobic anaerobic respiration [edit]. Do you have a university nearby that does sports science? You may be able to arrange a CPET through them.

n.b. they will also do VO2 max as part of the same test but I doubt that it would be any use to you to know it and it may cause you a setback to get to that level of performance.

 

[SOC]

A single CPET would be sufficient to identify when you switch from aerobic to aerobic respiration. Do you have a university nearby that does sports science? You may be able to arrange a CPET through them.

n.b. they will also do VO2 max as part of the same test but I doubt that it would be any use to you to know it and it may cause you a setback to get to that level of performance.

The submaximal test (only up to AT, not to maximum exertion) will also give you the AT info you need for pacing and is unlikely to give you PEM. You won't get all the info you would from a full CPET, but you don't need it unless you are applying for disability.

 

[Vasha]

Hi @Strawberry - I thought I was the only person crazy* enough to do the 2-day CPET just to get more info to rule in/out ME/CFS, but now I see that both you and @Gingergrrl are/were tempted! I went to Workwell. They are extremely knowledgeable (duh-they did much of the research, which was cool) and lovely as well. I did find out some useful information, including my frustratingly low anaerobic threshold.

That said, note the term "crazy." It all depends on how you react, but I was set back, conservatively, for a month or two. I was still trying to work, and it was a potent poison of a mix. It was downright miserable, and I'm not sure I didn't do damage. As @SOC notes, you can find out your AR from the submaximal test.

Also the test is expensive. If I had it to do again, I would go to OMI first, and then only do the test if needed. They can diagnose quite well without it, it seems. Two pennies, take them or leave them.

*Dr. Kaufman's assessment when I explained why I had done it.

Vasha

 

[Vasha]

P.S. @Strawberry,

Yay for going to the beach! So glad you could do that and feel ok.

Vasha

 

[Strawberry]

P.S. @Strawberry,

Yay for going to the beach! So glad you could do that and feel ok.

Vasha

I didn't *exactly* feel ok the next day, I had pretty severe heart/breathing issues with minimal effort the next day. I just wasn't sick, which with this new "SEID" criteria, I was hoping I didn't qualify for ME/CFS/SEID. But I have been mildly sick ever since that weekend, and barely able to do anything physically. So maybe I still am a member of the club?

That is insane that the test set you back for so long.

 

[SOC]

That is insane that the test set you back for so long.

I'm not surprised the test set @Vasha back that long. I would expect to be sub-par at least a couple of months based on my experience with the 1-day CPET. FWIW, the submaximal test left me with no post-test effects at all. Not a whiff of PEM.

This is why the 2-day CPET is not the obvious diagnosis tool for ME/CFS. Destructive testing is rarely warranted just for diagnosis.

I would do the 2-day CPET for disablity, or for other legal reasons (which I may be facing ), or for research. I wouldn't do it just to find my AT or to verify I really have ME/CFS. I'll take the ME/CFS specialist's word on that.

 

[Strawberry]

@SOC So since I am NOT looking for disability, would it even be worth my time to try to get a submaximal test done? I do intend to go to OMI soon, but right now I have too much on my plate to be able to afford (both physically and financially) to travel to California. But I do intend to be there before the end of the year.

 

[Vasha]

I didn't *exactly* feel ok the next day, I had pretty severe heart/breathing issues with minimal effort the next day. I just wasn't sick, which with this new "SEID" criteria, I was hoping I didn't qualify for ME/CFS/SEID. But I have been mildly sick ever since that weekend, and barely able to do anything physically. So maybe I still am a member of the club?.

@Strawberry -Ah, I am sorry. FWIW, I'm not sure everyone feels sick with PEM, at least not all the time.

That is insane that the test set you back for so long.

I was also desperately trying to work, and have been diagnosed with a pretty severe case. Everyone's different, of course, but I don't think I'd do it again.

@SOC So since I am NOT looking for disability, would it even be worth my time to try to get a submaximal test done? I do intend to go to OMI soon, but right now I have too much on my plate to be able to afford (both physically and financially) to travel to California. But I do intend to be there before the end of the year.

Another two pennies, if you'd like. I have a lot of trouble pacing, and the HR monitor method (which depends on knowing your AT) does help me try to keep things real. Balancing resources of time and money, I would now always try to go to a good specialist first. But again, that's me.

Sending you good wishes-
Vasha

 

[Scarecrow]

Can this test provide information on someones limits, eg. to where is safe to push or not?
Also anybody knows where to have such test in the UK?

xrunner, I've just realised I forget to quote your post when I replied to you yesterday (just in case you missed it). See also this post by SOC.

 

[SOC]

@SOC So since I am NOT looking for disability, would it even be worth my time to try to get a submaximal test done? I do intend to go to OMI soon, but right now I have too much on my plate to be able to afford (both physically and financially) to travel to California. But I do intend to be there before the end of the year.

I wouldn't do an exercise test yet unless you can't force yourself to pace well enough not to be constantly in PEM. I'd wait and see what the OMI doc says. But that's just me. I'm sure others would take a different path.

 

[Strawberry]

unless you can't force yourself to pace well enough not to be constantly in PEM.

Ummm... I can't.... I try! But yes, I appear to almost constantly be in PEM. I did pretty well over the winter, but then I moved my daughter into university dorms, moved my house (still moving the house for that matter) and moved the office. I'm hoping once I finally get all my stuff out of my brother's house (he is being so patient), then I can start pacing better. But we shall see. I do know myself a little too well. It is difficult to tell myself no.

 

[SOC]

Ummm... I can't.... I try! But yes, I appear to almost constantly be in PEM. I did pretty well over the winter, but then I moved my daughter into university dorms, moved my house (still moving the house for that matter) and moved the office. I'm hoping once I finally get all my stuff out of my brother's house (he is being so patient), then I can start pacing better. But we shall see. I do know myself a little too well. It is difficult to tell myself no.

I fully understand. I am also one who could not effectively pace without objective markers to work with. I really tried, but in fact I had no idea how bad my physical situation was. Since I don't have any clear immediate consequences of overexertion, I simply couldn't tell when I was overdoing until it was too late.

So in your case, as in mine, it's probably a good idea to find someone who will do a submaximal test -- just to AT and no further. The trick is to find one. You might get a cardio unit at a hospital to do it, but you could also consider some sports medicine, or physiology businesses -- maybe a high end gym or exercise physiology group. I'd ask around.

 

[Vasha]

Ummm... I can't.... I try! But yes, I appear to almost constantly be in PEM. . . .

I so sympathize @Strawberry. Like @SOC, I really had no idea - none at all - that I was going way over my threshold pretty much all the time. Knowing my AT is useful. Sobering but useful.

Vasha

 

[xrunner]

xrunner, I've just realised I forget to quote your post when I replied to you yesterday (just in case you missed it). See also this post by SOC.

Many thanks @Scarecrow and @SOC

 

[Singout]

FWIW, here is my thread from last year re considering CPET, with some helpful responses. I looked this up today because I'm still considering doing it--a real struggle.

I e-mailed the Workwell people to see if there are other places that do it, and he said--very promptly--that only Betsy Keller in Ithaca, which I already knew about.

I did the submaximal test at a sports clinic last September--the tester had never dealt with someone like me before, but was very helpful. I explained what I wanted on the phone and went in with good info. He was very careful and patient, and explained everything thoroughly.

What I got from it was my anaerobic threshold (which is good to know, higher than I expected, and below my normal level of exertion in my daily mostly house-bound life) and a 3-day crash after a session of walking very slowly and gradually building up to a light jog over 15 minutes. That was actually helpful, as a very concrete link between physical exercise and PEM (although I could have done it without paying a clinic!) Unfortunately, the crash doesn't go on any record (and my cardio that I've just quit seeing dismissed it as "we're all tired and sore after exercise."

Since then, I've been rejected (and my appeal has been rejected) for disability, so that's why I'm debating it again. It's hard to decide, because I have some savings and family to live on if I don't get the disability immediately--and I've improved somewhat over the past year--but it would mean a lot to me to get it. It's partly a pride and human rights thing. Also, I have yet to have any concrete medical test that "proves" there is something really wrong with me, which is frustrating.

I really wish, like all of us, that I knew what the payoff would be! Good luck with this difficult decision.

 

[Strawberry]

@Singout thank you for sharing! So sorry about the disability rejection, but keep at it. I have seen many threads here that make it sound like it takes at least two years, and that is with an attorney helping. Also, if I can pitch in my two cents of opinion, don't wait until your savings and family have been tapped out to continue the disability route. You will need that savings and family to live on during the process, and probably even AFTER getting disability. Good luck with that!

Also a follow up note to the thread title, I no longer have any interest in the CPET of any form, unless a doctor requests it. Every time I feel a little energetic, I move a few boxes or pull some weeds, and BAM. I'm done. So I no longer have the need to prove anything to myself, I am back to my old self unable to do much. Although I keep trying. I now realize I only made it to the beach and back because I paced myself down and back. So it is a goal I will continue to do for strength and enjoyment, but I am not cured.