Wednesday 3 May 2023

Survey about Post Exertion Response in Myalgic Encephalomyelitis (ME)

 Day 3 International ME Awareness Month

Survey included, please see below

PENE - The cardinal feature in Myalgic Encephalomyelitis (ME), the exertion intolerance response or exertion intolerance crisis in severe ME, is the distinguishing feature of ME, referred to as Post Exertional Neuro-immune Exhaustion (PENE) by the International Consensus Criteria and Primer (also referred to as PEM by others).

Further distinguishing features of PENE include:
  • Immediate onset: symptom exacerbation may occur especially for people with Severe ME

  • Delayed onset: symptom exacerbation may occur 24 to 48 hours after exertion

  • Variable and often prolonged period of recovery to baseline illness severity and symptoms.

Short Survey - 'Post Exertion Response in Myalgic Encephalomyelitis (ME)'

We invite you to share your experience, or that of the person you care for, of the cardinal feature of ME by completing our short survey about PENE (also referred to as PEM).
We will collate responses and share feedback during May Awareness Month 2023, responses may be useful to help you or the person you care for describe experiences with PENE to others who don't understand ME, including doctors and healthcare practitioners, and will give us a broad view of the different experiences of people in the ME community worldwide.

The survey is open to everyone in our International ME community.
Please take your time to complete.

Thank you for your support during ME Awareness Month 2023, it is very much appreciated.

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