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

[RedFox]

Please don't do it.

Are you concerned about me getting worse? I can't conceive of a 2-day CPET harming me, I seem to be immune to physical LTSE (long-term symptom exacerbation). Once I played ice hockey two days in a row before I was diagnosed. I wondered why I couldn't get myself to do anything for like a week afterwards but I recovered.

It also shouldn't cost me any money.

 

[Milo]

Are you concerned about me getting worse? I can't conceive of a 2-day CPET harming me, I seem to be immune to physical LTSE (long-term symptom exacerbation). Once I played ice hockey two days in a row before I was diagnosed. I wondered why I couldn't get myself to do anything for like a week afterwards but I recovered.

It also shouldn't cost me any money.

I worry about you not getting the results that you want, for one, from a doctor that might be skeptical and that may not have the equipment needed and the understanding of ME. It is a lose-lose situation that you are putting yourself through, and even if you have recovered before, know that it does not mean that next time will be just the same. Know that too many out there have pretended they weren't sick, and that they could do stuff, but then they got worse.

I am concerned about your state of mind, getting a test at all cost (even if free) but not administered or analyzed properly. Everything could go wrong, and a horrible, ignorant report going back to your doctor will make it even worse.

Remember that there are no diagnostic tests for ME. Tough pill to swallow. Some people get a ME diagnosis and either they were misdiagnosed or down the road they get diagnosed with something else. If you need that diagnosis confirmed, consider seeing one of the few ME experts around the country. They would be able to identify whether you meet the criteria and fit the picture, or not.

Best wishes.

 

[MSEsperanza]

In terms of convincing yourself, I found tracking my symptoms for a while so that I understood them better was helpful.

In my case that was also helpful to convince doctors.[*]


I agree with others that if you tie any decision on how to gauge your health / illness to the 2days CPET that's very likely to be not helpful.

I also see that maybe most of us would like to know if we fit in the results of the 2days CPET research and if someone offered me to do one at no cost and in a stable phase of my illness and no other urgent stuff to do I probably would do it -- but with the premise that nothing depends from it and also that it won't show up in my medical records if I don't want it to.

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

I don't think you will look like a fool. You could just say that you currently feel too unstable to do the test.

If the doctor is reasonable, you also could explain in more detail on how you have informed yourself about the usefulness of the test and that first you wanted to better track and understand your symptoms with the help of an activity/ symptoms diary -- but that you appreciate her help with ordering the test and it's good to know that you could do it in the future when you're in a more stable phase.


[*] I think it would be good to have an app that could help with that, so to have an activity diary where most is filled in automatically (e.g. physical activity by an accelerometer) and you have just to tick boxes -- for daily activities (best immediately after e.g. if you are able to washing yourself or preparing a meal and eating, also if you are receiving care for those activities) and different kind of activities (including cognitive activities) for which you could log in and out on a device; plus tick boxes for symptoms you experience.

Anyone knows if something like this exists already?


Edit: clarity.

 

[Braganca]

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 suggested this already.. a tilt table test if you have autonomic issues. Or do a NASA lean test in a doctors office, sort of a poor man’s tilt test. This will tell you if you have a physical abnormal response.

You could also try to get a SPECT imaging test, but insurance may not approve. Some people find spect shows abnormal blood flow in brain.

I had a qEEG that came back highly abnormal. Doctors do not care about it but for yourself, it’s a signal of things being dysfunctional. It won’t tell you why, and needs to be read in context of a diagnosis.

Have seen people discuss transcranial Doppler to measure blood flow in brain. Again probably not easy to access.

Seeing a psychologist may be helpful if you can find a trustworthy one, since you are struggling with trusting yourself on this being a physical disease. It sounds like you are having a crisis that they could help you sort through. They can also do a battery of cognitive tests that can show impairments. (This can be expensive)

The first couple years of illness are the most mentally challenging and traumatic. You are grieving the loss of yourself. If you need help from a psychologist, do reach out to one. I became very depressed in year 2.. it can be a dangerous time and people with ME almost all go through this (from convos I’ve had with others). I wish you all the best.

 

[Mij]

I think that this type of scan would give you better results in determining disability, more so than CPET?

There is no harm done with this sort of test if you can get access to them.

https://www.hopkinsmedicine.org/health/treatment-tests-and-therapies/brain-perfusion-scan

 

[RedFox]

I suggested this already.. a tilt table test if you have autonomic issues. Or do a NASA lean test in a doctors office, sort of a poor man’s tilt test. This will tell you if you have a physical abnormal response.

You could also try to get a SPECT imaging test, but insurance may not approve. Some people find spect shows abnormal blood flow in brain.

I had a qEEG that came back highly abnormal. Doctors do not care about it but for yourself, it’s a signal of things being dysfunctional. It won’t tell you why, and needs to be read in context of a diagnosis.

Have seen people discuss transcranial Doppler to measure blood flow in brain. Again probably not easy to access.

Seeing a psychologist may be helpful if you can find a trustworthy one, since you are struggling with trusting yourself on this being a physical disease. It sounds like you are having a crisis that they could help you sort through. They can also do a battery of cognitive tests that can show impairments. (This can be expensive)

The first couple years of illness are the most mentally challenging and traumatic. You are grieving the loss of yourself. If you need help from a psychologist, do reach out to one. I became very depressed in year 2.. it can be a dangerous time and people with ME almost all go through this (from convos I’ve had with others). I wish you all the best.

I'm not sure what value a qEEG or brain blood flow test would have because I'm autistic and autistic people are known to have abnormal qEEGs and patterns of blood flow in the brain.

 

[Kitty]

I hope you're having an okay day, @RedFox. From reading the thread it sounds as if you've really been having an awful time of it.

As for the tests ... I'm wondering who it's for?

Is it for doctors? If so, it's unlikely to help. They already know it's not a test for ME, and they're more likely to question what would motivate someone to put themselves through something that unpleasant than they are to look at the results. Many of us have seen concrete evidence of abnormalities in blood results waved away as "insignificant" by doctors, so they're unlikely to be swayed by something they view as far from concrete.

Is it for you? If so, will you be convinced by the results? They might be normal for your age and activity level, or be inconclusive; they might show a pattern suggesting PEM, but the trouble is that you also know it's not a validated test for PEM. The phenomenon probably isn't unique to ME anyway, and test results always depend on interpretation as much as anything. Will you question whether it was done properly, or interpreted properly? Will you keep wondering whether you ought to do it again, with a more knowledgeable doctor or different equipment or a more up-to-date protocol?

I wonder if it might help more to focus on finding better support for your struggle with such poor mental health. No-one has found anything that works for ME, but there are approaches that help some people manage their PTSD. Having to live with both that and ME must be exceptionally difficult, but one of those conditions has more treatment options than the other, is taken more seriously by medical professionals than the other, and might be where the potential for the greatest improvement in your quality of life lies.

I'm sorry if it sounds like a ridiculous suggestion because you've already hit numerous brick walls. I've no understanding of what it's like to live with PTSD, or to have to search for the right support at times when you may be least equipped to find it. I've been at the ME game for more than 45 years, though, so I know that one pretty well. And whatever the question, the answer rarely includes the words "doctor" or "test", at least once other conditions have been ruled out. It's a really shitty situation, but unfortunately that's where we are, and there's more potential for further harm than there is for good.

I wish I could help more. All we can do is be here if you need us, I guess?

 

[RedFox]

I'm getting this test for me and disability (to lower the chance my benefits ever get cut off). If it's the typical pattern of lowered anaerobic threshold on the second day...it will do a lot to convince me.

But also, I just realized, this involves both my physical and mental health. I've realized this is a form of health anxiety. It's an atypical and iatrogenic form where instead of worrying I have a serious when I don't, I'm worrying I don't have a serious illness when I do. I'm talking to my counselor about this.