Presentation on PEM: Underlying causes, diagnosis

General
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I found a presentation from a clinic called the Bateman Horne Center that appears to specialize in ME/CFS and Long Covid. Here is the link: https://batemanhornecenter.org/wp-content/uploads/filebase/providers/PEM-Lecture-Slides-ECHO-v4-5_17_2022.pdf

Some things of interest that are noted in this presentation:

  • 2 day CPET testing is a reliable, reproducible, and accurate measure of PEM. ME/CFS patients consistently differ from a healthy control group in that they cannot replicate their day 1 outcomes on day 2.
  • PEM is debilitating and repeated episodes are associated with worse long-term outcomes. Pacing and avoiding flareups are important.
  • Low-dose naltrexone and dextromethorphan have both been looked at for easing PEM.
  • Continued avoidance of flareups is associated with gradual improvements over time. This does not say either way whether patients can be cured, but that they can regain function.

Their website has additional information and patient-friendly literature on living with PEM.

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Yeah the guy from the Bateman Horne Center (brayden yellman) and the slides you linked to talk about how the CPET test can help people qualify for disability payments. The test is not good for your health though.

Some of the stuff coming from the Bateman Horne center troubles me. They take a very conventional mainstream approach to treating ME/CFS, so they have blind spots. They simply don’t know about the dangers and downsides of certain drugs that are popular in mainstream medicine:

  • Gabapentin
  • Most psych drugs including SSRIs. DO NOT suddenly discontinue these drugs- it can lead to suicide risk. Starting these drugs can put you at risk of PSSD, which is poorly understood at the moment. For a longer discussion, see the SSRI thread. Most doctors don’t understand how dangerous these drugs are and how their risks are now being recognized on the drug labels.

Lucinda Bateman has done some good work trying to get away from the misleading label Chronic Fatigue Syndrome and was trying to replace it with SEID - systemic exertional intolerance disease.

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I appreciate your rapid replies and insight as always.

The 2 day CPET was a surprising find for me. I had been under the impression that a diagnosis was based entirely on the patients anecdotal experience. The fact that there is such a high quality indicator for PEM seems like diagnosis and research shouldn’t be so hard to come by.

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