Monday 29 May 2023

Survey Feedback - The Post Exertional Neuro-immune Exhaustion (PENE) Cardinal Feature in ME

Image by JS

The Post Exertional Neuro-immune Exhaustion (PENE) Feature in ME

PENE is the cardinal feature of ME according to the International Consensus Criteria and Primer on ME.

PENE is a feature that is synonymous with ME. PENE in ME is a distinct measurable feature related to exhaustion and the nervous and immune systems.

PENE is particular to ME, however we recognise and appreciate that PEM can be used when referring to this cardinal feature in ME, though PEM is common in other illnesses too.

Survey Feedback

Please see the feedback from an informal survey on Post Exertional Neuro-Immune Exhaustion - PENE which we held during ME awareness month 2023 here

Or see the survey feedback divided into shorter parts below

Q1 What words do you use to describe PENE (also referred to as PEM), the response you have after exertion whether physical or mental exertion or in response to a hyper sensitivity stimulus or action, e.g. 'relapse' ?

Q2 What kind of exertion triggers your PENE/PEM?

Q3 Does PENE (also referred to as PEM) happen... straight away or minutes after exertion or hours after exertion or a day or more after exertion?

Q4 How do you avoid PENE (or PEM), the post exertion response/crisis?

Q5 What can you do to recover from PENE, the post exertion response/crisis?

Q6 If you could provide one piece of advice to a person newly diagnosed with ME or to someone who suspects ME what would it be?

More about Post Exertional Neuro-immune Exhaustion (PENE) here

Thanks to everyone who completed the above survey, your support is very much appreciated, your feedback useful for others with ME and for awareness and educational purposes.

Disclaimer: The information in this post is for general information purposes only. While we endeavour to keep the information up to date and correct, we make no representations or warranties of any kind, express or implied, about the completeness, accuracy, reliability, suitability or availability with respect to the post or the information, products, services, etc contained in the post for any purpose. Any reliance you place on such information is therefore strictly at your own risk. The suitability of any solution is totally dependent on the individual. It is strongly recommended to seek professional advice and assistance in some instances. 

No comments:

Post a Comment