PEM is not equal to P.E.N.E.
Words have power
From my point of view the word malaise is as harmful and misleading as the word fatigue when describing the debilitating disease myalgic encephalomyelitis. I think it has perpetuated the misconception that patients can manage the symptoms of ME simply by mentally overcoming fatigue and malaise.
The following description for malaise is taken from Medline Plus
"Malaise is a general feeling of discomfort, illness, or lack of well-being.
Considerations: Malaise is a symptom that can occur with almost any health condition. It may start slowly or quickly, depending on the type of disease.
Fatigue (feeling tired) occurs with malaise in many diseases. You can have a feeling of not having enough energy to do your usual activities.”
In my opinion the wording "have a feeling" reinforces the preconceived idea most doctors have that PEM is based on an emotion and is treatable with behavior modification.
UPDATED CRITERIA REPLACES PEM
Post exertional malaise was not in the description the experts who collaborated to write the International Consensus Criteria (ICC) & International Consensus Primer (ICP) used.
My guess is that Dr Carruthers and his colleagues who helped write the ICC & ICP were keenly aware of the value of accurate descriptions. Dr Carruthers was an expert in ME and lead author for the ICC and ICP written in 2012.
While post-exertional malaise is a required symptom for the ME/CFS-CCC (Canadian Consensus Criteria) and the ME/CFS-IOM/NAM report criteria (used by US CDC), it is not unique to those patient groups. See HERE for list of other conditions that recognize PEM as a possible symptom.
Note: PEM is not required for a CFS-Fukuda diagnosis.
TERMINOLOGY MATTERS
This underscores the importance of thorough screening to confirm a diagnosis of ME. Having PEM does not mean a diagnosis of ME/CFS is the only option to consider.
I am concerned that those given an ME/CFS diagnosis who don't fit the ME-ICC criteria, have not been thoroughly screened. Dr. Hyde's book “Missed Diagnoses” is worth checking out to learn how often a missed diagnosis occurs when doctors use a vague criteria like CFS.
Thorough screening should also take into account this list of conditions to rule out that could be an alternate explanation for symptoms seen in CFS or ME/CFS. Some of those conditions may also be comorbid. A thorough screening is valuable no matter what diagnosis a person has been given.
The IC Primer states: “Patients diagnosed using broader or other criteria for CFS or its hybrids (Oxford, Reeves, London, Fukuda, CCC, etc.) should be reassessed with the ICC. Those who fulfill the criteria have ME; those who do not would remain in the more encompassing CFS classification.”
Post-exertional neuroimmune exhaustion is the required symptom to make a diagnosis of ME. P.E.N.E. (as far as I know) is not referenced in any other disease.
I think the IC Primer offers more accurate vocabulary which can help us educate our health care providers as well as friends and family. The ME IC Primer does not use the term malaise at all.
Myalgic encephalomyelitis is something we contracted through no fault of our own.
I am sure a day is coming when the world will truly understand the reality of ME. I think how fast that day comes will depend on what we say and do today.
Colleen
NOTE: Abbreviation for post-exertional neuroimmune exhaustion includes periods between letters to avoid misunderstandings when auto translations are used.
Feel free to share the following graphic.
I hate that we seem like we will be forever stuck with these definitions that negate our actual disease! But I appreciate the work that you do to fight the ignorance out there.
Thank you so much for writing this. I have saved it for future use!
I hate that we are stuck with words like 'malaise' and 'fatigue' to describe ME. These are so inadequate.