Case for 2 day CPET for ME/CFS patient
As sent on mychart to my cardiologist
I’m scheduled for an electrocardiogram.
Do I still need it? I was in the icu for hyponatremia. Sodium 115, result I had cut back on salt with my fluids and needed to up it to levels suggested by autonomic neurologist plus discontinue one of my medications for possibly causing saidh.
They looked me over pretty good, would they have detected any heart issues? My gp Dr. K reviewed the records and said he left a note in my file summarizing the visit, perhaps you can see it.
My blood pressure has gone down yo close to normal to the point that Dr d cut my carvedilol down to 6.25 mg. He used the bp records from my weekly spravato treatment I’ll dig them up.
Likely causes is that I am following protocol of aggressive rest plus became more consistent with fluids/salts. 1 liter with 1.5 mg sodium 2–3 times a day. I have also cut stimulants to 1 cup of coffee on waking and an aggressively treating anxiety per Dr d (clonazapan, spravato, esketamine).
Review article:
The overall mean values of all parameters were lower on the 2nd day of the CPET than the 1st in ME/CFS patients, while it increased in the controls. From the meta-analysis, the difference between patients and controls was highly significant at Workload@VT (overall mean: −10.8 at Test 1 vs. −33.0 at Test 2, p < 0.05), which may reflect present the functional impairment associated with PEM.
Most recent study:
Results: There was a highly significant difference in judged recovery time (ME/CFS = 12.7 ± 1.2 d; CTL = 2.1 ± 0.2 d, mean ± s.e.m., Chi2 = 90.1, p < 0.0001). The range of ME/CFS patient recovery was 1 — 64 days, while the range in CTL was 1 — 10 days
I am referencing the protocol of the Stanford Chronic Fatigue Initiative
https://daveunderwood.medium.com/the-treatment-regime-for-me-cfs-from-the-world-class-stanford-me-cfs-initiative-as-of-november-ed172474052d
Lifestyle
Rest aggressively, never crash, expend 50% of available energy, resting means no cognitive or physical activity
Goal is zero crashes, which as a first goal I’m saying crashes requiring hospitalization and iv fluids. I still have crashes that effectively immobilize me.
Getting to this level is curtailing my activities to essential life activities and short minute long dance videos.
I document these on a TikTok feed with an activist bent
The idea is that someone can appear to be fit and active for short time periods while in fact being quite ill. I attempt to strongly refute any idea that severe functional limitations are a result of inactivity and severe kinesiophobia
I could go on for some length… perhaps I should for my own records and for publication on medium.
This is all to say I think the one off ekg is very likely to have negative results. My (primary) problem is ME/CFS and I am no longer really looking for other explanations; they have been exhausted.
a. Do you still want the EKG? I’d basically be cancelling an ot appointment and going to the hospital… it is exertion but not more than I sometime do
b. Do you know if I can get anything resembling the two-day cardiopulmonary exercise test (CPET) at Rush or anywhere else in Chicago? Seemingly the technology is not exotic, the test evidence based, and the inquiry indicated by differential diagnosis.
I’m not in suspense but it would be helpful in my disability application as well as clinicians who haven’t studies my TikTok field. I can easily go on for thousands of words, medical records, and self-documenting videos (and perhaps should.. in fact I’m going to edit this into a medium post.
