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

[Seven7]

@kermit frogsquire I keep confused by this discussion, have you gotten the test??????

1) if you get hooked while laying down and you are already at AT, or by standing you get to AT, you do not need to go into excercising. Just by sitting you will see you reached AT on very severe cases.

Maybe they can adjust protocol to be done just normal steps and laying/standing for the severe cases.

The technology is there. Any hospital could test disabled and maybe do a second test for the less severe.

You guys have no idea how helpful this is, GP at first will say go excercise, you do the basic things (stretching or basic therapy) after you been trying for a few weeks the GP see something is not right, (I think the ETA on normal people to see improvement is 2 weeks). So you go from 5 years it took me to be diagnosed, to a few weeks to be diagnosed I WOUDL BE GAME!!!!! I htink is a good start.

 

[alex3619]

Just by sitting you will see you reached AT on very severe cases

This is what I suspected, I would hope that some examples of this get published.

 

[Dr.Patient]

To be included on this kind of study you have to be able to travel, and exercise, and travel home, then repeat it the next day.

I was able to do that a year ago, I am unable to do that now. Even if you can undergo the test, can any doctor or disability company take responsibility if a relapse occurs?

 

[Tired of being sick]

Please note -- this post originally came from this thread -- "BMJ Rapid Response: Is Chronic Fatigue Syndrome a meme? 18 June 2014".



I would agree were it not for the 2 day CPET. Everything is different now it has been independently confirmed as a valuable tool in assessing ME patients. We need to push this, HARD. Now I am not saying I think its the only test we need. I am saying its a start.

Furthermore its an obvious test, and nearly every practicing doctor would have been taught it at medical school. THERE IS NO LONGER ANY EXCUSE for doctors to engage in psychobabble for ME. No excuse, anywhere, for any reason. There are indeed factors which led to this, which are keeping doctors in the dark. That is an entirely different issue.

 

[Dr.Patient]

As a moderate-to-severe patient with a lot of family support, I didn't even hesitate when my doctor wanted me to do a single CPET. And it has been extremely valuable in getting a waiver for a language test and in getting a disabled passenger parking permit. Each time the reviewer took one look at the results and was very happy to have a clear basis for making a favorable decision.

Last and most importantly, Dr Snell and others engaged in exercise testing for ME patients are a doing a great service for us. They are using legitimate scientific methodology to document physiological pathology in an area of medicine in which they didn't start off having an interest, and in which biological researchers are often scorned and shut out. In the process, they have validated our symptoms and experiences, and are undermining decades of fraudulent and dishonest psychological research. I don't think we'll ever be able to thank them enough for the contributions they are making.

The only two areas where CPET is useful is proving that the illness is not mental, and to prove disability for supporting a claim. The medical community needs to come up with ways to do this without subjecting the patient to a harmful procedure. FIRST, DO NO HARM.

 

[Tired of being sick]

Top 10 Tests for Myalgic Encephalomyelitis & CFS Labeled Patients

 

[Dr.Patient]

Top 10 Tests for Myalgic Encephalomyelitis & CFS Labeled Patients

Thank you for this information! I will read through it over the next few days!

 

[SOC]

lnester7 said: ↑
Just by sitting you will see you reached AT on very severe cases

This is what I suspected, I would hope that some examples of this get published.

I hope some of this gets published, too. I think most of this kind of testing is done by Connie Sol to provide information to patients to assist in pacing. I don't know if she is planning to publish it.

As a matter of interest, I did the submaximal test 2 years ago in order to find my AT for pacing and to see if it had changed at all since I had been improving (AT didn't change a bit). I would consider myself moderate, but closer to the severe end at that point.

I looked up the report today. Here's some of the info:

Your test was a submax continuous protocol @ 15W (equivalent to a low level activity of daily living like moving around the house) for 6 minutes with a rest period of about 2 minutes prior to start of exercise.

As I understand it, this means that the exercise I did on the bike was equivalent to a low level activity of daily living, not sprinting all out.

You were hyper metabolic at rest with a starting RER .93 ( measure of metabolism) just sitting on the bike, a measure that was increasing at rest. This means that you were becoming anaerobic just sitting. Most of your energy demands at that point and from that point onward were met through carbohydrate / anaerobic metabolism.

Notice that just sitting on the bike, after 2 minutes of supine rest and before the test began I was almost at an RER of 1. Note "a measure that was increasing at rest".

So after 6 minutes of continuous light activity, like walking around the house, I am completely anaerobic with all the associated consequences -- continuous presence of lactic acid and the resulting continuous acid state.

My guess is that the published testing was done mostly on mild and mild-moderate patients. Those are the people willing and able to go to the site and do the testing. For that reason, some of the patients (probably the most mild) show near-normal results on less damaging testing -- submaximal and 1-day CPET. It likely takes the 2-day CPET to detect abnormalities in all ME/CFS patients, including the mild ones. This is what a biomarker needs to be able to do -- detect all patients, including the mild cases -- which is why Dr Snell is working on it.

Do we want this to be the ultimate biomarker for ME/CFS? Of course not. It's too damaging. Everyone acknowledges that. But it is what we have right now. It shows a distinct difference between people with ME/CFS, healthy people with similar levels of activity, and people with other illnesses.

(BTW, @kermit frogsquire, I see no reason to use completely bedbound healthy people as a control for a group of non-bedbound patients with ME/CFS. That's absurd.)

With luck, researchers will use the 2-day CPET to identify willing (and courageous) patients for studies of less damaging markers. At least we will know that the patients in those studies definitely have ME/CFS.

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.

 

[alex3619]

I see submaximal testing as the future here, as you say @SOC what we really need to know is our AT.

 

[alex3619]

I was able to do that a year ago, I am unable to do that now. Even if you can undergo the test, can any doctor or disability company take responsibility if a relapse occurs?

I think the answer is NO. However if the choice is to lose insurance, benefits etc and become homeless? Sometimes the choices are between bad and worse.

 

[SOC]

I see submaximal testing as the future here, as you say @SOC what we really need to know is our AT.

And we need the medical establishment, insurance companies, and disability services to recognize the significance of our results on submaximal testing so that we can get necessary support services.

I think the answer is NO. However if the choice is to lose insurance, benefits etc and become homeless? Sometimes the choices are between bad and worse.

Exactly. If disability services requires maximal testing to prove disability, then our only choice is do the test or lose the services.

However, if the test is being done for the benefit of the patient, then submaximal testing is likely to be sufficient. It is my impression that this is Connie Sol's perspective, which is why she generally doesn't do maximal testing.

 

[SDSue]

@kermit frogsquire What is your goal here? Methinks you simply like to argue.

The 2-day CPET is all we have at this point. My one day was abnormal and resulted in an extended crash. Unfortunately, like so many of us, my choice now is starve or subject myself to the 2-day to prove disability.

I could do the test locally (a facility where they "don't believe in ME") or travel 6 hours each way to be tested by a bonafide ME/cfs doctor. I choose to travel - a great hardship in and of itself - because I know I will be protected as best possible by a technician who understands this disease. I also know that my test will be interpreted correctly. This test in the wrong hands is doubly dangerous for us.

There needs to be a better way. If you've got that better way, by all means, let's hear it. If your views can further research, by all means please take them to the investigators.

If you intend only to have a jolly by debating, might I suggest that you find a healthy cohort for that exercise - I know I'm too busy just trying to survive the realities of this hellacious disease.

 

[waiting]

@Dr.Patient

The 2-day CPET is invaluable for the essential knowledge of your individual heart rate at AT.

It is my understanding from Workwell (formerly Pacific Fatigue Lab -- Dr. Snell, Staci Stevens, Mark Van Ness) that in order to get the correct AT, a maximal test is necessary.

Furthermore, since we (ME patients) have been shown to be unable to reproduce our Day 1 results on Day 2 (PEM), then your measure of heart rate at AT could drop significantly on Day 2.

This means you cannot know that you are pacing correctly (by wearing a HR monitor and staying under your AT) if you are only using your AT measure from a 1-day test. It might be much lower on Day 2 -- and that's the number you would need to stay under to help avoid PEM.

Also, Workwell has tested patients classified as severe on the functional capacity scales. Some PR members have described their experiences in detail here.

 

[Dr.Patient]

I think the answer is NO. However if the choice is to lose insurance, benefits etc and become homeless? Sometimes the choices are between bad and worse.

I agree, those are our choices, unfortunately- bad or worse.

 

[Dr.Patient]

The 2-day CPET is all we have at this point. My one day was abnormal and resulted in an extended crash. Unfortunately, like so many of us, my choice now is starve or subject myself to the 2-day to prove disability.

I could do the test locally (a facility where they "don't believe in ME") or travel 6 hours each way to be tested by a bonafide ME/cfs doctor. I choose to travel - a great hardship in and of itself - because I know I will be protected as best possible by a technician who understands this disease. I also know that my test will be interpreted correctly. This test in the wrong hands is doubly dangerous for us.

Pardon me, are you required to do the CPET again?

 

[Dr.Patient]

@Dr.Patient

This means you cannot know that you are pacing correctly (by wearing a HR monitor and staying under your AT) if you are only using your AT measure from a 1-day test. It might be much lower on Day 2 -- and that's the number you would need to stay under to help avoid PEM.

My pacing is - when I have some strength, I do some tasks, when I don't have the strength, I cannot do much. I am homebound. I do not wear a heart monitor. My body tells me my state very accurately, it's just that sometimes tasks happen without my best controls.

 

[SOC]

It is my understanding from Workwell (formerly Pacific Fatigue Lab -- Dr. Snell, Staci Stevens, Mark Van Ness) that in order to get the correct AT, a maximal test is necessary.[/USER]

I believe this is incorrect. The AT occurs when RER=1, which is well below maximal. It is a boundary. It does not change if the patient continues to exercise above their AT, as is done in maximal testing.

Maximal testing is necessary to find VO2max, of course, but that's not what we're talking about.

Did the Snell studies show that AT dropped on the second day, or that VO2max or other measures decreased? If indeed, AT dropped on the 2nd day, that still doesn't prove that maximal testing is necessary to see the AT drop on the 2nd day. Submaximal testing might show the same drop in AT, if not in other measures. I don't think that research has been done yet.

I am well aware that Workwell has tested some severe patients. My point is that data indicating 1-day testing is not sufficient is based on a patient population with a majority of patients in the mild and mild-moderate range.

The 2nd day abnormalities show up in all patients, which is critical information. This does not mean that other clear abnormalities do not show up in moderate-severe, severe, and very severe patients on 1-day or even submaximal testing. It's just that those abnormalities are not universal in ME patients, mild through very severe. From the patient (rather than the research) perspective, the abnormalities that show up in submaximal and 1-day testing can be very relevant to the individual patient in terms of pacing and management.

 

[SOC]

My pacing is - when I have some strength, I do some tasks, when I don't have the strength, I cannot do much. I am homebound. I do not wear a heart monitor. My body tells me my state very accurately, it's just that sometimes tasks happen without my best controls.

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.

 

[SOC]

@kermit frogsquire
The 2-day CPET is all we have at this point. My one day was abnormal and resulted in an extended crash. Unfortunately, like so many of us, my choice now is starve or subject myself to the 2-day to prove disability.

That really sucks! Are you telling us that they (whoever they are) wouldn't accept the 1-day test for disability? Or is it that your 1-day test was not sufficiently abnormal for them so you have to do the 2-day for the abnormality to show up?

It makes me so angry that they put us through all this just to get services.

 

[SDSue]

Pardon me, are you required to do the CPET again?

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.