Should I get the 2 day CPET? And how?

[Strawberry]

I made it to the beach on Saturday! Sorry to brag... My sore throats recently have gone away, I attribute that to aggressive rest therapy (did basically nothing for months) last fall and winter. I hadn't done anything for the last few weeks as I had over done it moving, and was recouperating/saving my energy to go move more stuff on Saturday. But instead I decided to try to walk to the beach, and I made it! It is over 200 feet elevation drop, so quite the accomplishment. Sunday I did pretty well considering, although I had to severely limit my actions. Just walking 30 feet and my heart rate would rise and my breathing would get hard. So I would have to sit and rest. And now it is Monday, and I still feel pretty good. Although I am at work, so I am sitting.

So now to get back to the question, I want to get a 2 day CPET to see if I can rule out CFS? Or rule it back in? I have barely had a sore throat since Christmas, while they had been consistent for 20 years. So now I am not sure if I get PEM.

I know the CPET has done some serious damage to many here, and I respect anyone's opinion to not do it at all. But I really am wanting to try just to prove it to myself what I can do. Or prove it to my doctor what I CAN'T do. I am not as sick as many here, so I think I might be okay? If not, hopefully a few days of home rest, or a few weeks of no activity except coming to work, and I should be okay.

How do I ask my doctor to get that test done? Remember that he doesn't believe in CFS, he just said it is what I have...

 

[Gingergrrl]

@Strawberry Contact Jared at the Workwell Foundation and he will send you the forms and explain the exact process. They run the test at several locations in both So and No CA. I think that would be the closest location to you in WA. I was going to do the test over a year ago but my cardiologist and other doctors did not feel I was well enough and no doctor would consent for me to do it. I am now significantly worse than I was a year ago (can't walk outside- only wheelchair) so I know I will never be doing this test! Do you need it for disability? Otherwise I am not sure if it is worth the risk.

 

[Strawberry]

@Gingergrrl I was hoping I could get it done locally as my vacation is nearly gone. Is this something only certain specialists do? Or ME/CFS specialists? I definitely will look into the Workwell Foundation, if I have to, maybe I can go there and to OMI. And you are the last person I would want to have a doctor force that test on! I feel terrible how quickly things have progressed for you, and I hope that doctors find something to help you SOON!

Also, I don't need to get on disability, but am trying to figure out if I have CFS or not so that I can find out how to improve, or at least stabilize. Doing nothing helps, but I can't handle doing nothing, so usually overdo and make myself crash... I am hoping the CPET would rule in or rule out CFS.

 

[SDSue]

Have you had a One-Day CPET? You never know if your issues might show up on that and you wouldn't have to do the 2-day? Just a thought

 

[WillowJ]

I am hoping the CPET would rule in or rule out CFS.

No, not really. It hasn't been tested enough to be diagnostic.

We don't know of other diseases where there is a collapse in cardiopulmonary function, but we haven't checked enough similar diseases (I would like to see data on other diseases with muscle fatiguability like myasthenia gravis, and other diseases that expect some kind of post-exercise flare, like Ehlers-Danlos syndrome, for example, before being satisfied it was diagnostic... that might be unlikely, so it might not ever be diagnostic of ME, but an unfavorable result will always be diagnostic of "something wrong", and could prove useful for disability purposes and to a pulmonologist or cardiologist trying to manage your case).

Also it's not clear whether the data from other diseases comes from close repeats (24, 48, 72 hours) or more like 2 weeks off (or more, I forgot).

Is this something only certain specialists do? Or ME/CFS specialists?

Any hospital has the equipment to do a CPET. They do not usually do a repeat CPET. Workwell adds a cognitive exam, and is very picky about how data is recorded. Not all hospitals record different data in the same way.

I've had a pulmonologist complain about how date from a pulmonary function test was recorded. So apparently it's not uncommon for locations to be doing the data "wrong".

I think there are only 2-3 places this can be done at present.

 

[Gingergrrl]

@Strawberry

@Gingergrrl I was hoping I could get it done locally as my vacation is nearly gone. Is this something only certain specialists do? Or ME/CFS specialists? I definitely will look into the Workwell Foundation, if I have to, maybe I can go there and to OMI.

My understanding is that there are only a few locations nationwide who know how to properly conduct the two-day CPET test and it is not something that any random doctor can administer. I think your best bet is to contact the Workwell Foundation and read all the info on their website. They used to be called the "Pacific Fatigue Lab" before changing to Workwell and they are literally the pioneers in the field.

And you are the last person I would want to have a doctor force that test on! I feel terrible how quickly things have progressed for you, and I hope that doctors find something to help you SOON!

Just to clarify, no doctor was ever trying to force me to take this test and it was me who wanted to take it to also try to rule in or out ME/CFS at a point that I was doing poorly but not as poorly as now! It was before I had ever gone to OMI and my only definitive diagnoses (at that time) were Hashimoto's Disease, dysautonomia, inappropriate sinus tachycardia (IST) and some kind of POTS. But I was getting sicker and sicker and it all started after I had mono and I was trying to figure out what was going on. It was Workwell who wanted a doctor's consent but my cardio at that time and my naturopath at that time (no longer seeing either of them) felt I was too ill to attempt the test so I did not do it.

I had picked a tentative date with Workwell (only about an hour from where I live) but did not pay the deposit yet so I did not lose any money. When my doctors said no, I canceled with Workwell and they totally understood. But if your doctor feels you are well enough to do it, it should be okay.

Also, I don't need to get on disability, but am trying to figure out if I have CFS or not so that I can find out how to improve, or at least stabilize. Doing nothing helps, but I can't handle doing nothing, so usually overdo and make myself crash... I am hoping the CPET would rule in or rule out CFS.

That makes sense and you sound like you are where I was two years ago where all I was able to do was go to work and rest so I could go back to work. I worked full-time for another year which I am sure made me worse but I had no idea what was wrong with me and never dreamed that I would not recover. I am not saying this to scare you or imply that you will follow the same course and we are all very, very different.

 

[CFS_for_19_years]

I had a 2-day physical capacity test that took 2 FULL days here, near Everett, Washington:

http://www.epirehab.com
http://www.epirehab.com/services/pbpce_fce

I was wiped out for several days afterwards. It cost about $1000 about 8 years ago. From the appearance of the website, it looks like you will need a referral from a doctor or attorney. I went with an attorney referral. I was pleased with how they treated me and the results they gave me. Dr. Becker is an expert witness and a very kind man. He supervises the testing and interviews you before the test begins.

There may be other facilities that do similar testing. A Google search with your city and the phrase "physical capacity evaluation" will bring up some others.

Here's a different organization that might be able to do similar testing:
http://www.pacificrehabilitation.com/service/patients/physical-capacity-evaluation

They have several locations.
http://www.pacificrehabilitation.com/locations

You may need to get on the phone and call around to be sure you're getting the testing that you want.

AFAIK, doing worse on the second day is proof of CFS. Having a one-day test and doing poorly will prove disability, but doing even worse the second day is pathognomonic for CFS.

Pathognomonic = only occurs with disorder.

 

[Valentijn]

Any lab which can do a generic CPET can do a 2-day CPET for ME patients. They just might want a bit of explanation, and it would be good to let them know that your VO2max and heart rate data for each day are especially important data for you to get from it. And maybe mention that you are looking for any change in values from day 1 to day 2, so they don't assume it's an error or try to average the data or anything.

I think it cost me around 100 euros from KDM's office for a single CPET. It doesn't have to be obscenely expensive, unless you're picky about using very new equipment and software, etc.

 

[Strawberry]

No, not really. It hasn't been tested enough to be diagnostic.

I was thinking if I didn't experience PEM that it would rule out CFS?

Here is a little update though, starting with a brief recap. Saturday was a hike to the beach, Sunday I was able to get one load of laundry done and moved some very light weight boxes, but I had to take breaks often as just simple walking across the room made my heart rate go up and my breathing get labored. I know for some people here that is a daily normal, but this usually only happens when I am in a crash. And these boxes really were light, they should not have caused breathing issues under normal situation. Now the update: The sore throat started on Tuesday, although it still is not as bad as it has been the majority of these last 20 years. If this is a PEM crash, it is extremely light.

So does this sound like mild PEM or not?

Also back to my original question if I should get the 2 day CPET, I guess the issue locally would be finding a doctor that would actually know what PEM is..... Which means a trip to California. But is it worth it to go to the Workwell Foundation? Or do I just go to the OMI? I don't believe my symptoms this week would have raised any red flags with any local doctors.

Also, a thank you @SDSue @Gingergrrl @WillowJ @CFS_for_19_years @Valentijn for all the responses! Much information to mull through!

 

[WillowJ]

I was thinking if I didn't experience PEM that it would rule out CFS?

That's a good point. But it's complicated.

Some of Workwell's ME/CFS patients did not have a drop in 2nd day capacity on the CPET test. So it can't positively rule it out, either. But that's not uncommon even for a test that's considered to be diagnostic (antibodies to ds-DNA for Lupus, for example). Diagnosis just tends to be very tricky for complex chronic diseases.

I had some years that I didn't notice having PEM, and this seems to be "a thing" among at least some few people that have PEM in other years. Did I not notice because I wasn't doing "enough" activity to trigger it? Because it was delayed and I didn't make the connection? Because I didn't know to look for it? Or because I didn't have it at that point in my disease? I don't know.

Not having PEM would mean a person likely can't be diagnosed with ME/CFS-CCC or ME-ICC or SEID right at this moment, and shouldn't be in any research studies for sure, but there are lots of diseases (like Lupus and MS) where a person can't necessarily be firmly diagnosed right away. I don't know why this one would be different. Except we might have cytokines to diagnose the early cases at some point; that would be cool.

I know for some people here that is a daily normal, but this usually only happens when I am in a crash.

Did you do some extra activity or thinking a day, several days, or a week before? or spread across some time that might have built up and caused a crash that day? You are saying "when I am in a crash", like that is normal, but questioning whether you have "PEM", so what is it about "crashes" that you differentiate from "PEM"?
(some people use them the same, and some people use "crash" for a longer episode, but I'm just trying to figure out why you're crashing but thinking it's not PEM--other diseases say "crash" 1,2,3,4,5 so it's not unreasonable, I just am asking to try to help you figure out whether or not you are having PEM 1,2)

I don't believe my symptoms this week would have raised any red flags with any local doctors.

I had to take breaks often as just simple walking across the room made my heart rate go up and my breathing get labored.

That should make any doc feel concerned.

However, in my case (because of my CFS label) once they had done the "big red flag" test and done an echocardiogram in case they missed something potentially more serious... they were done. It was deconditioning, obviously, don't bother them any more. I had to find new docs. I had several things wrong, by the way, and one of them was not related to ME.

Or do I just go to the OMI?

They might be able to help diagnose you whether they use CPET or not. If you're set on doing CPET, you should check and see if they do it before going.

"You have CFS but I don't believe in that and can't help you" is pretty poor doctoring.

 

[CFS_for_19_years]

Also back to my original question if I should get the 2 day CPET, I guess the issue locally would be finding a doctor that would actually know what PEM is..... Which means a trip to California. But is it worth it to go to the Workwell Foundation? Or do I just go to the OMI? I don't believe my symptoms this week would have raised any red flags with any local doctors.

Have you thought of looking for a better local doctor? I'm sure there must be some who are familiar with PEM in Washington. I think you're making this more difficult than it needs to be by thinking you need to leave Seattle in order to accomplish what you want.

If I had to strike out on my own and find a local MD who understood PEM, I think this would be a good place to start:
http://www.seattlehealingarts.com/pracs-by-name.htm
I counted nine MD's. Fernando Vega might be the oldest one on the roster. His name was given to me by Ralph Golan, MD (http://ralphgolanmd.com), another Seattle old-timer. Both Vega and Golan will understand PEM, there's little doubt in my mind about that, but their fees might be a bit high.

When I have the strength to get myself out the door, this is a naturopath whom I hope to see for general care, not anything associated with testing for PEM and not at the above clinic:
Dr.Kimberly Iller, ND, LAc
http://functionalmedicinenw.com/About_Dr.html
http://functionalmedicinenw.com/Services.html

Specialties

• Lyme and Associated Conditions
• Fibromyalgia
• Chronic Fatigue Syndrome

I'm sure she would understand PEM, but I don't know if testing facilities would accept a referral from an ND, otherwise, she might be a good fit.

Good luck with everything!

 

[CFS_for_19_years]

To find local cardiopulmonary exercise testing, (not the more exhaustive physical capacity testing), I googled "seattle cpet" and found the University of Washington. You could call and ask if they measure VO2max and anaerobic threshold, similar to the Workwell Foundation. You just need to find a doctor who will understand your need to be tested twice on successive days. Maybe you can get a referral to a pulmonologist from your regular doctor.
http://www.uwmedicine.org/locations/general-pulmonary-uwmc

The wide array of pulmonary procedures offered by our pulmonary departments include:

• Spirometry
• Arterial blood gases
• Lung volumes
• 6-minute walk
• Diffusion capacity
• Cardiopulmonary exercise testing
• Thoracentesis
• Fiberoptic bronchoscopy
• Lung biopsy

 

[Dr.Patient]

@Strawberry The only thing CPET will do to you is make you worse. The only reason to do it unfortunately, is for disability (until a noninvasive test comes up for diagnosis of mecfs). Do not do it.

 

[Strawberry]

Did you do some extra activity or thinking a day, several days, or a week before? or spread across some time that might have built up and caused a crash that day? You are saying "when I am in a crash", like that is normal, but questioning whether you have "PEM", so what is it about "crashes" that you differentiate from "PEM"?
(some people use them the same, and some people use "crash" for a longer episode, but I'm just trying to figure out why you're crashing but thinking it's not PEM--other diseases say "crash" 1,2,3,4,5 so it's not unreasonable, I just am asking to try to help you figure out whether or not you are having PEM 1,2)

I'm not quite sure. I do work full time (I sit at a computer), but I had done very little around the house ever since Easter. PEM is a rather new concept for me. I called them crashes since they started (somewhere between 3 to 5 years ago?) but since joining PR realized it could be called PEM, as my flu aches and fatigue and sore throats get worse in a crash. I don't remember having the (worse) breathing issues until starting amlodipine last summer. It took about 6 months to get used to the pills, and now I only have the issues during a crash.

Sorry if this isn't enough information, or doesn't quite make sense, but I am having a difficult time thinking of how to respond? I guess it was too much information for me to take in?

That should make any doc feel concerned.
........
"You have CFS but I don't believe in that and can't help you" is pretty poor doctoring.

I'm not sure if I have EVER had good doctoring! I could give you many odd examples. Some stuff could be blamed more on my parents than doctors though...

 

[Strawberry]

@CFS_for_19_years thank you for the clinic referral (I've seen that website somewhere before, but thought it was all NDs?) and Dr Golan's name. Interestingly enough, I recognize one of the names from his testimonials. I will have to contact my friend to ask about Dr Golan. I kept trying to stay away from North Seattle as it is so difficult to get through downtown Seattle, but I think it is what I will have to do.

 

[Strawberry]

The only reason to do it unfortunately, is for disability

Is this true? Have I been going about this all wrong? I'm so confused.....

 

[Sushi]

Dr.Patient said: ↑
The only reason to do it unfortunately, is for disability

Is this true? Have I been going about this all wrong? I'm so confused.....

Most people do it for disability because it is an expensive and taxing test. But, it also gives a patient good information to use personally in planning their level of pacing. Whether to do it is an individual question.

Sushi

 

[WillowJ]

I guess it was too much information for me to take in?

I also probably said something in the wrong way. Sorry about that.

 

[Strawberry]

I also probably said something in the wrong way. Sorry about that.

No, don't worry you didn't. I just never really had time until today to actually READ the thread. I re read after I posted to see if I missed any really important posts, and I don't think I did. It is just limited time, and limited brain power.

 

[xrunner]

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?