'Post-exertional malaise' - Does It Need a New Name?

Yes, another post about nomenclature. Seems my having this disease, which I'll call SEID, systemic exertion intolerance disease, is appropriate since there are so many problems in communicating about it and I am a communications specialist, due to interest and talent and skill.

So, let's take on another term: "post-exertional malaise," aka "PEM."

I'm not the only one seeing problems with this term. Donna Pearson, a patient advocate, said at this summer's Chronic Fatigue Syndrome Advisory Committee meeting that the CDC website described PEM as needing to rest in the car after going to the store, too tired to drive home. She astutely pointed out that our disease has both stamina problems and PEM, but they are not the same. She said disease experts can be sought to confirm this, but in her case, what has been described as PEM is delayed from the triggering activity, most of the time ~ 24 hours. She pointed out that since PEM is a distinctive symptom for our disease, it needs to have a clear and accurate description on the CDC website.

Dr. Lucinda Bateman, who also sits on that committee and has treated many patients, agreed that PEM is a delayed effect, 24 or 48 hours later, although getting tired during the activity also occurs. She said that since the malaise is delayed, it's important for patients to learn to pace their activities. And so resting when you're tired does not help in managing PEM. "Its important maybe to recognize both," she said, "But the idea about PEM that distinguishes it from other illnesses is the delayed emergence of relapse symptoms."

(transcription here and audio recording here)

Pearson said that she is now seeing the "PEM" term being applied to post-exertion fatigue. And while fatigue is part of the malaise, it is not the same as malaise. She said it's used to describe the fatigue that MS patients get. She said maybe we have to come up with another term.

Pearson is not the first to question this term. Just earlier this spring, in the Solve ME/CFS Chronicle, Pete Hanauer wrote an opinion piece on this topic. Like me, he has an interest in communications because of his past-illness life as a law book editor. He recommended we call it "post-exertional disability." He said the definitions of "malaise" focus on feelings instead of effects and may be associated with a mental condition.

Slide from the VanNess presentation.

And a couple of years ago, Mark Van Ness, PhD, gave a presentation where he said he prefers the term "post-exertion amplification of symptoms."  In the presentation, he said that the world has a different idea of the term "post-exertional malaise" (while he showed a slide of an exhausted athlete).

In contrast, he said about our disease, "We're talking about post-exertional malaise that lasts longer than 24 hours and is not just fatigue: light-headedness, breathing problems, muscle pains . . ."

This is not the first time this topic has come up. You can find discussion forum posts from years ago raising this issue.

So, here's what I think about it (as the blog says, this is just my honest opinion, but it comes from a perspective of using terms to communicate effectively.):

The term “post-exertional malaise” is inadequate and misleading in describing this hallmark symptom of SEID:

-- "post” only indicates order in relation to the exertion. It does not indicate cause and effect and doesn’t say how long after. Is it an hour after or a week after or days after? If it is within a day after exertion, well that’s normal, not an indication of disease.

-- “exertion” (as base word for “exertional”) is understood by common people to be lifting heavy weights or running a marathon, maybe trying to open a jar with a tight seal. That’s not the exertion that precipitates this symptom for us. In SEID, it can be simply bathing, getting dressed, driving to a lunch then driving home. That everyday non-exertion activity to the general public is enough to cause the symptom for us. It is misleading to use “exertion” because people will think the symptom only comes to us if we exert ourselves as they understand exertion.

Also, when describing the chronic fatigue in SEID, we often see “and not caused by exertion.” So, this is contradicting. Does exertion cause the fatigue (as part of “PEM”) or does it not?

-- “malaise” does have one of its definitions fit this symptom:

• Mirriam: 1. an indefinite feeling of debility or lack of health often indicative of or accompanying the onset of an illness ex. An infected person will feel a general malaise. 2. a vague sense of mental or moral ill-being ex. a malaise of cynicism and despair 
• Cambridge: a general feeling  of bad health or lack of energy in a person, group, or society.  ex. Many think there’s a growing moral malaise in society. 
• Dictionary.com: 1. a condition of general bodily weakness or discomfort, often marking the onset of a disease. 2. a vague or unfocused feeling of mental uneasiness, lethargy, or discomfort.

Note that each of these definitions  for “malaise” do include “feeling of debility,” “lack of health indicative of onset of illness,” “general feeling of bad health,” “bodily weakness . . . marking onset of a disease.” While somewhat vague, this does indicate the medical nature of the symptom and it being experienced as part of sickness.

The origin of the word is French (mid-1700s), “mal” meaning bad; “aise” meaning ease. So the root means bad ease.

But the word is not specific enough, nor does it express the severity of the symptom as most with SEID experience it. Also, it has been hijacked to non-medical use, which dilutes its original meaning to one that is actually misleading to its original meaning. The non-medical use is included in the above definitions of “vague sense of mental or moral ill-being,” “general . . . lack of energy in a group or society,” “vague or unfocused feeling of mental uneasiness, lethargy, or discomfort.” Since this secondary definition has a broader use, it is the one that most people understand for this word because it is used more. So in common use, the original medical meaning has been overshadowed by this broader, not medical, less-serious meaning.

To show what the public thinks of the meaning of the word, I did a Google search for the word “malaise” in the news. Here are the results:

Notice that 5 of these top 6 news items using the word "malaise" are using it to mean lack of interest, an attitude, or behavior of either individuals, society or a group. This gives the indication that malaise is something that can be changed by thinking differently or getting some boost.

Because its common use is broader, we’re seeing that broader use creep into medical use for other diseases, such as depression and MS. In depression, it’s lack of motivation and lack of pleasure. In MS, it’s fatigue.

But, for SEID, the symptom includes debilitating fatigue, brain fog, weakness, body aches, headache, nausea, etc. The number and severity of these varying. These are specific sickness (medical) symptoms, not vague and not just fatigue. Because of its use, the word “malaise” is now not specific enough to describe these specific sickness symptoms we experience.

Effective communication means not just using words correctly, but it means using words that correctly convey the meaning of what you are talking about. So to communicate effectively, you must use words according to the understanding of the hearer’s (or reader’s) understanding of the word, and not just know one of its definitions is accurate. And, words change meaning over time.

So, taking the attitude of “the word does include that meaning we are trying to convey” does not mean that is the meaning the hearer will get from the use of that word, especially if the most common use of the word is different than the meaning you are trying to convey.

If we use “malaise” and people think we mean “lack of interest,” then we have not communicated the symptom of SEID.

Other Proposed Terms

The inadequacy and misleading nature of the term “post-exertional malaise” has caused some to suggest other terms for the hallmark symptom in SEID:

Post-exertional neuro-immune exhaustion (PENE) This term was a proposed in a diagnostic criteria.

1. “post” indicates sequence, not cause and effect. (See above)

2. "exertional”  indicates extreme activity in common use and contradicts the description that SEID fatigue is not caused by exertion. (See above)

3. “neuro-immune” does indicate medical, but puts a cause to the symptom that is not proven (latest studies indicating more metabolic / cellular energy systemdefects), and it’s likely not immune exhaustion but immune over activity that leads to the symptoms.

4. “exhaustion,” if applied to the “neuro-immune” could have some accuracy, except as noted in 3. above. But if understood to apply to the person’s experience, it is still not adequate enough to describe sickness symptoms. It’s focusing on fatigue, which is only one of the sickness symptoms. Therefore, the term is either not inclusive enough or can be misunderstood.

Post-exertional debility (PED) (As recommended in Pete Hanauer’s commentary in the Spring 2018  Solve ME/CFS Initiative Chronicle.) 

1. “post” indicates sequence, not cause and effect. (See above)

2. "exertional”  indicates extreme activity in common use and contradicts the description that SEID fatigue is not caused by exertion. (See above)

3. “debility” indicates lack of ability to function. While correct, it does not say why the person is unable. Did they break their leg? Have they become depressed? Is it congestive heart problems? This term does not indicate the sickness symptoms, which is the case in SEID. So, it is not specific enough and does not communicate the experience. It’s the result on the body’s abilities, not the experience or feeling or symptom in the body.

 

Post-exertion amplification of symptoms (PEAS) (As recommended by Mark VanNess, PhD.) 

1. “post” indicates sequence, not cause and effect. (See above)

2. "exertion”  indicates extreme activity in common use and contradicts the description that SEID fatigue is not caused by exertion. (See above)

3. “amplification” indicates getting more or getting bigger or stronger and does indicate an effect of the exertion. This may be ok if one assumes the pre-existence of the symptoms in a milder form before the exertion. However, for some, there are no symptoms for a few hours or even only mild fatigue for a few days, then the activity causes sickness symptoms that were not happening before: headache, nausea, etc. It's not that they are more or stronger, it's that they come on from the "exertion."

4. "symptoms” does not say what kind of symptoms. Is it a heart murmur? Is it forgetfulness? Is it itching? This is not specific enough to describe the experience in SEID.

Post-exertional relapse (PER)

1. “post” indicates sequence, not cause and effect. (See above)

2. "exertional”  indicates extreme activity in common use and contradicts the description that SEID fatigue is not caused by exertion. (See above)

3. “relapse” indicates a deterioration after some improvement. While this seems accurate, it does not describe the experience. Is it a relapse in their knee pain? Is it a relapse in their ability to remember things? So it still is not specific enough to communicate what type of symptoms the person is experiencing. 
    
And, this word "relapse" has an overall indication that the person is healthy for a period then sickness returns. That is not the case with SEID. The person continues to have some symptoms, but then an activity causes a particular set of symptoms that are not experienced when having not done the activity. Memory problems, lack of stamina, insomnia, orthostatic intolerance, temperature sensitivity, etc. are common most all the time for SEID patients. But if they do an activity beyond what their body can tolerate and keep homeostasis, they get these other sickness symptoms, the malaise. So they aren’t healthy then relapse. So this term could be misleading.

Two Better Terms (IMHO)

In searching for the right terminology to communicate this symptom experience, I found there is no perfect and succinct term. So while many find “PEM” not good, it may be hard to get a consensus on what the appropriate term should be. Of course, this is true about the disease itself. 

When “SEID” was recommended, I wrote a blog about it, including its inadequacies. However, it is, in my view, better than both “ME” and “CFS.” We need to stop letting wanting the perfect to stand in the way of choosing what’s better for now. If we wait for perfect terminology, we will be waiting for possibly another decade or so while the terrible terminology stays and does harm. The options now are better or status quo. We don't have the option of perfect. And the status quo, in both the terminology for the disease and its hallmark symptom, is harming and miscommunicating. 

Therefore, I prefer the following as best options for striking a balance between specific-enough and broad-enough and conveying this symptom experience with commonly used terminology:

Activity-induced sickness symptoms (AISS) (This is my preferred)

1. “activity” is better than “exertion” because the most common trigger is what most people think of as just activity, such as running errands, sweeping the floor, taking a short walk. Although not all activity triggers the symptoms in all patients (depending on the severity), it is a better term for doctors and the public to understand that it can be something they do not think of as exertion that is the trigger. 

This could lead to doctors giving better advice. Rather than saying, “Just don’t exert yourself,” which to a person who just became ill means to not run or lift weights, the doctor would more likely say, “Limit your activity by time and type.” 

Also, since the symptom is delayed, the person doesn’t realize at the time that they actually are exerting themselves. It doesn’t feel like exertion. So using the word “activity” can better describe what the trigger is. They know it’s activity, not just what they perceive as exertion.

Adding an adjective to say what level of activity is the trigger will not be broad enough since the level of activity that triggers the symptoms is different to each patient.  

Activity is not the only trigger of these symptoms (infections and stressors—both physical and emotion or psychological—are, too), but on a day-to-day basis, the trigger is almost always activity and it's the one that the patient has more control over. So if keeping it short is important, “activity” by itself catches most of what the doctors and patients need to know for their day-to-day management of the disease.

2. "induced” indicates indicates the activity is the cause, the trigger, which is more descriptive and specific than “post”

3. "sickness symptoms” is a common way to refer to the original, medical meaning of the word “malaise.” It will keep to the medical connotation instead of the attitude or behavior connotation that “malaise” has in its broader use. Most people, when they feel malaise, describe it as feeling sick, like they are coming down with something. SEID patients describe it as feeling like they have the flu or like they are coming down with the flu. This can convey the sickness symptoms of debilitating fatigue, brain fog, body aches, headache, nausea, etc. that we experience without having to list them all. In saying “sickness symptoms,” people will know its medical and have an idea of what the symptoms are because they know what it feels like to be sick. 

It’s true that in the strictest view, sickness symptoms can mean other than malaise, but in most common use, people know what is meant by “I’m feeling sick.” They know that’s not an attitude or lack of motivation.

Activity- or stressor-induced sickness symptoms (ASISS)

1. “activity or stressor” includes another trigger, the physical or mental/emotional stressors, such as infections, extreme temperature exposure, some foods, etc. But adding this word makes the term more difficult to write or say (longer), and thus will likely be shortened anyway. And “stressor” in common use indicates more the psychological instead of biological. So it could mislead. Adding more adjectives to say mental or emotional or biological is just making it more awkward and longer, which is contrary to the purpose of a label, finding a few words to communicate.

2. "induced” indicates the activity is the cause, the trigger. (See above.)

3. "sickness symptoms” is a common way to refer to the original, medical meaning of the word “malaise.” (See above.)

Missing in all these terms is the delayed onset in relation to the activity / stressor. While it can come on a person while they are in the activity, if they have been in the activity for a longer period or been in the triggering activity for more than one day, it is more common for patients to have the onset of the symptoms 24-72 hours after the activity.

One way to convey that is to include the word “delayed.” It could be “activity-induced delayed sickness symptoms” (AIDSS). Well, that won’t work. It's too close to "AIDS." Or “delayed activity-induced sickness symptoms” (DAISS). The only issue with the latter is whether the “delayed” could be misconstrued to modify “activity” instead of “symptoms.” Is the activity delayed or symptoms delayed? Maybe adding a comma will help: “delayed, activity-induced sickness symptoms” (DAISS).

Another issue is that “delayed” does not say how long delayed, which means it could be hours later or even a week later, both of which are not the most common onset time. But it does help to distinguish the experience from that commonly experienced by marathon runners, which is most often that evening or the next morning. The delayed part of it is a key to the mechanism involved in this disease because no other disease has this kind of delay in relation to the triggering activity / stressor. And it can help patients to understand it’s not tired from activity, which is what they would expect. It’s sickness a day or days later. And this is so contrary from what healthy people experience from their activity or exertion that it helps in diagnosis. One question could be asked:

“If you were to rest over the weekend, and you returned to work or other activity Monday and continue the rest of the week, when do you usually feel the fatigue and brain fog and body aches return?"

Many patients at first do not connect the cause of their sickness symptoms to the activity because it is days later. So having this delay as part of the label can help patients (and doctors) to make the connection to what is triggering the debilitating symptom and thus identify this as the unique symptom of SEID.

Adding “delayed” gets us back to a longer label. Using the initials could help that. But it will for a long time need to be written in long form. It could be that the delayed part is communicated in a subsequent sentence or paragraph describing the symptom. But that fails to use the quick label to make the distinguishing aspect of it being delayed.

So the choice here is to having a quicker, easier to say and include in typed text, that includes this aspect of the symptom, or miss it in the label and emphasize it in any description. Each choice is not perfect.

What do you think?