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.
Couldn't agree more. I am working on an article about changing the narrative. To stop using words like malaise & fatigue. We need alternative narratives that are more accurate.
Could you provide more information or a resource to help me understand better the difference between PEM and PENE? I'm having a hard time finding accurate consistent information that describes the difference between them while aknowledging PENE exists. Do they present with the same symptoms but different triggers for exhaustion or longer periods of recovery for PENE? Or is it something different that sets them apart? or do they present similarly but they have a difference etiology? Thanks a lot
In reality the answer depends on who you ask. The "criteria" for PEM is very vague. I've seen it used for various conditions with VERY different meanings that don't look like what I experience.
My experience is better portrayed by what the International Consensus Criteria (ICC) describes with the label post-exertional neuroimmune exhaustion.
So, in my opinion, when some people use the term PEM it is the same as what I experience. Other people use PEM in a way that is nothing like what I experience.
To clarify: The definition for PEM is commonly stated as: "Post-exertional malaise (PEM) is the worsening of symptoms following even minor physical or mental exertion that would have been tolerated previously."
One of the differences is what symptoms are worsened... I think that vague description is why PEM is being used in so many different ways. For someone with congestive heart failure who does too much, their symptoms get worse. That fits the PEM description but has nothing to do with ME.
PENE is specific to myalgic encephalomyelitis as defined by the ICC. "PENE is characterized by a pathological low threshold of physical and mental fatigability, exhaustion, pain, and an abnormal exacerbation of symptoms in response to exertion. It is followed by a prolonged recovery period."
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.
Couldn't agree more. I am working on an article about changing the narrative. To stop using words like malaise & fatigue. We need alternative narratives that are more accurate.
Could you provide more information or a resource to help me understand better the difference between PEM and PENE? I'm having a hard time finding accurate consistent information that describes the difference between them while aknowledging PENE exists. Do they present with the same symptoms but different triggers for exhaustion or longer periods of recovery for PENE? Or is it something different that sets them apart? or do they present similarly but they have a difference etiology? Thanks a lot
In reality the answer depends on who you ask. The "criteria" for PEM is very vague. I've seen it used for various conditions with VERY different meanings that don't look like what I experience.
My experience is better portrayed by what the International Consensus Criteria (ICC) describes with the label post-exertional neuroimmune exhaustion.
So, in my opinion, when some people use the term PEM it is the same as what I experience. Other people use PEM in a way that is nothing like what I experience.
To clarify: The definition for PEM is commonly stated as: "Post-exertional malaise (PEM) is the worsening of symptoms following even minor physical or mental exertion that would have been tolerated previously."
One of the differences is what symptoms are worsened... I think that vague description is why PEM is being used in so many different ways. For someone with congestive heart failure who does too much, their symptoms get worse. That fits the PEM description but has nothing to do with ME.
PENE is specific to myalgic encephalomyelitis as defined by the ICC. "PENE is characterized by a pathological low threshold of physical and mental fatigability, exhaustion, pain, and an abnormal exacerbation of symptoms in response to exertion. It is followed by a prolonged recovery period."
I hope that helps.
thanks a lot for your reply! it did help.
Good stuff Colleen
Thank you!
Thank you Andrew. I know we aren't alone in finding that term inaccurate...