What effect did a 2-day CPET test have on you?

[SOC]

@alex3619 I have had a 1 day test. I was thinking about the 6MWT (6 minute walk test) too, perhaps that is less invasive than CPET?

What objective measures are used in the 6MWT that would allow it to distinguish clear physiological dysfunction from deconditioning or lack of effort?

 

[alex3619]

The 6MWT appears to be a test for research purposes, and presumes active patient participation. Indeed once we hammer home the failure of PACE I suspect they will claim patients were still too cognitively impaired to really try, and need even more CBT and GET.

I also expect that some patients will be accused of malingering. If they don't like the results, and don't believe the patient, then malingering is a likely claim.

I do see the 6MWT having value for patients who want a better idea for themselves about how sick they are, and this could easily be translated to being used clinically to assess different treatments.

CPET at least has well recognized results.

At the moment we have brain scans that can show patterns consistent with cognitive impairment, but cost, availability and lack of insurance coverage is a huge issue. We need ways to do that with physical impairment. CPET can do that, 2 day CPET is even better for that, but what we really need is something relatively non-invasive like a blood test. Some success exists with spinal taps and cutting edge research tests, but that is probably much worse than a 2 day CPET with respect to the downside, and hard to justify on ethical grounds.

As a clinical measure I expect the 2 day CPET will only be used for a few years. I am really hoping we have something better. There are a few research teams that are working on it.

I am guessing not many would have used a 6MWT to fight for insurance claims or government benefits. I know of, by hearsay, court cases in which a 2 day CPET made a huge difference.

Has anyone had any success with mitochondrial or metabolic testing and disability claims?

Are there other tests we are missing?

 

[SDSue]

Does anyone know if LDN use has an effect on the results of the 2-day CPET?

For example, if one is on LDN for a long period of time, with small improvements, does their CPET test show "normal" results, or is the underlying ME pathology still in play?

Thanks.

 

[Sushi]

Does anyone know if LDN use has an effect on the results of the 2-day CPET?

For example, if one is on LDN for a long period of time, with small improvements, does their CPET test show "normal" results, or is the underlying ME pathology still in play?
Thanks.

I can't give a scientific answer, only share that I have been on LDN for several years and, while there have been a lot of benefits for me, I haven't found that it helped the type of energy metabolism (or whatever is the right term!) that we use in aerobic exercise.

I have not had a CPET test, just going by day to day experience.

Sushi

 

[*GG*]

Does anyone know if LDN use has an effect on the results of the 2-day CPET?

For example, if one is on LDN for a long period of time, with small improvements, does their CPET test show "normal" results, or is the underlying ME pathology still in play?

Thanks.

Good question!

I had the testing done in 2010 or so, had the testing done about 1 year after having a 3month crash and being out of work. I have not bee working for about 1 year now, and continue to go the gym and exercise some with fewer repercussions. I think I would do better on the testing now. I think my body notices the effect more around 3 days, or 36 hours after exertion, which I think is what happens to many people as they age, I'm 44 Now. I now get to sleep more, so I can get from 6 to 12 hours sleep in a night/day!

GG

PS Working on disability paperwork, and going to see a new Dr, wonder if she will have any thoughts on this, still need to fill out the new Patient paperwork, so perhaps it will touch upon some of this?

 

[Singout]

And I have booked the submaximal test at a sports facility, having sent them some relevant snippets from @SOC 's posts and the Occupy CFS blog so he'll understand what's behind it. Also taking the good advice re resting well afterward, and contemplating the more demanding test with Betsy Keller or someone similar. Thanks again!

(FWIW, I did initial contact with Betsy Keller: she was very prompt and personal in her response, and seems to do her best--including a pre-test written screening, a doctor's note, and requiring people to come a day early and be accompanied--to ensure that people who would be really badly affected aren't put through the test or the consequences are reduced.)

 

[*GG*]

And I have booked the submaximal test at a sports facility, having sent them some relevant snippets from @SOC 's posts and the Occupy CFS blog so he'll understand what's behind it. Also taking the good advice re resting well afterward, and contemplating the more demanding test with Betsy Keller or someone similar. Thanks again!

(FWIW, I did initial contact with Betsy Keller: she was very prompt and personal in her response, and seems to do her best--including a pre-test written screening, a doctor's note, and requiring people to come a day early and be accompanied--to ensure that people who would be really badly affected aren't put through the test or the consequences are reduced.)

I had my testing done with her about 4 years ago. The other reason you are supposed to be accompanied is because they don't want you driving afterwards

GG

 

[enginewitty]

You can also try the Krebs cycle test that will show impairment in your energy production cycle.

have you heard of this being acceptable for disability approval?

 

[Valentijn]

have you heard of this being acceptable for disability approval?

It's extremely unlikely that it would be acceptable for proving disability.

 

[Dr.Patient]

have you heard of this being acceptable for disability approval?

Nobody knows that. However, I would still get it and use it as objective evidence.