Two-Day CPET in Females with a Severe Grade of ME/CFS: Comparison with Patients with Mild and Moderate Disease. van Campen et al. 2020

Unless I have misunderstood, this was looking at patient results rather than doing new tests. If that is so, there could have been severe people tested because the low result on the second day is acceptable as physical proof of disease for disability benefits in some countries.

I have read blogs by quite a few people who have risked getting the test done because of the difference it makes to life to have that money.

 

Several of the studies did just that (Hodges 2017 and Larson 2019), but I agree more could help.

I've tried to keep the following page up-to-date
https://me-pedia.org/wiki/Two-day_cardiopulmonary_exercise_test

Those with moderate-severe cystic fibrosis are going to have quite different results as their maximal performance is limited by lung capacity, rather than the heart/venous system. If their lungs are severely compromised, they might not even reach the first ventilatory threshold before reaching their lung capacity.

My own case of a CFS-like syndrome post-Guillain Barre Syndrome suggests that this pattern (reduced VO2Peak and peformance at ventilatory threshold on 2nd CPET) is either not exclusive to ME or CFS - or that the post-Guillain-Barre-Syndrome (prevalence estimates vary, but as much as 30-40% of GBS patients) is a form of CFS.

 

I'm only aware of one pilot?

https://journals.lww.com/cptj/Citat...bility_of_Measurements_Obtained_During.4.aspx

Are there any others with other illness controls?

 

When I got what I suspect was small fiber neuropathy, it did not seem to make PEM worse. My body changed in several ways and a variety of new symptoms appeared, like being unable to relax and having constant tachycardia, or having strong jerks while trying to relax (so strong it lifted my chest or a limb off the bed due to the force of the sudden muscular contraction). While trying to relax, sometimes it felt like my breathing stopped or was too shallow and I had to make a conscious effort to resume normal breathing. Sometimes this was accompanied by jolt throughout the body that caused a single particularly strong heart beat. It was a painful state of overactivation where every heart beat hurt a little and I was less sleepy and actually had problems sleeping a full 8 hours. It felt like this overactivation was maybe necessary to compensate for a weakness of another kind, the same that caused the sometimes insufficient stimulation of automatic breathing.

This may sound a little weird but it might actually have made my PEM a little better.

 

There's also the Light study

https://pubmed.ncbi.nlm.nih.gov/22210239/

The studies are small though.

 

We have a major problem in that the BPSers can do large trials of GET, even in children, because they announce that the treatment does not cause any harm and carefully do the trials so that harms can't be reported (one women who became ill on the FINE trial said that when she told the nurse she felt ill she was told it did not count because she got ill on week 18 and they were only counting what happened at week 17)

We cannot do large scale trials of CPET testing because we know it carries the risk of causing deterioration in participants which could be permanent.

So the medical establishment look at the "scientific" evidence and don't believe us. A questionnaire given as part of a trial is evidence, a questionnaire done as a survey is not.

 

Does anyone have an overview over how many studies have been conducted on two day cpet now? Seems to be a likely consistent finding in ME-patients. Great!

 

It depends on what you count as a study - there have been methods/review papers, case studies, clinical data studies and case-control studies.

If you include all primary studies including the case studies, we're at 13, although one of those had overlapping data with another (van Campen et 2020 studies with female subjects) and the first study did not publish the workload data at the ventilatory threshold.

I've tried to keep the following article updated, but I might have missed something (and I haven't included both van Campen 2020 studies, in lieu of the later larger study) https://me-pedia.org/wiki/Two-day_cardiopulmonary_exercise_test

 

This is true, except that Keith Geraghty's paper which summarised several patient surveys was instrumental in convincing NICE to do a new guideline. So it can be done, but it requires hoop-jumping, which can be a barrier.