Idiopathic Chronic Fatigue… When You Don't Want A Diagnosis Of MECFS.
Chronic Fatigue Is Not Just Being Tired
Here is a handy comparison chart:
Fatigue
-Unrefreshing sleep
-At some point, you hit a wall and are completely unable to continue
-Your energy reserves won't recharge
-Takes more energy to do every task
-Normally associated with low productivity
Tiredness
-Sleep makes you feel better
-Can push through it
-Your energy reserves are low
-You are doing too many tasks
-Normally associated with high productivity
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Post Exertional Malaise Is Not Part of Chronic Fatigue
Chronic fatigue alone is debilitating. But the PEM related to MECFS is distinct from normal chronic fatigue.
Here is another comparison chart:
Fatigue:
-Affects your ability to exert and causes immediate difficulty with exertion
-Can push until you hit the wall without permanent deterioration (although autoimmune patients take the risk of a flare)
-Single symptom. May be described as heaviness, lead-filled limbs, moving through cement, exhaustion etc.
PEM
-Affects you 24-48 hours after exertion
-Repeatedly triggering will lead to permanently worse fatigue and future PEM
-Many symptoms including: worsened fatigue, sore throat, headache, pain, swollen lymph nodes, dysautonomia, migraine, periodic paralysis, muscle spasms, neurological symptoms etc.
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MECFS Is Not Chronic Fatigue!
MECFS is a neuroimmunological disease whose key diagnostic is PEM or post-exertional malaise or an increase in all symptoms 24-48 hours after exertion. It causes a vast array of symptoms and diagnosis requires PEM, fatigue, and symptoms from 3 categories: neurological, immunological or gastrointestinal, and dysautonomia or cardiovascular.
See my post on the ICC criteria for a detailed description of each symptom category.
In short: MECFS is a debilitating chronic illness and fatigue is only one of a myriad of symptoms. Fatigue in MECFS is exceptionally severe and debilitating, but that does not mean that MECFS is a disease defined only by fatigue. Indeed, many patients with MECFS must limit activity far below the point at which their fatigue would stop their activity in order to avoid the actual distinctive symptom of MECFS: post-exertional malaise.
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But if I don't have Chronic Fatigue Syndrome (aka MECFS) what do I have?
Understandably many people can be upset to hear that they do not have the diagnosis their doctor told them they do. Chronic fatigue alone is a debilitating symptom that affects every part of your life. You are very justified in wanting an explanation. But if you don't meet the diagnostic criteria for MECFS than you don't have it. What you have in unexplained chronic fatigue. The medical term for this is "idiopathic" so the diagnosis on your chart would be "Idiopathic Chronic Fatigue."
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Idiopathic Chronic Fatigue Isn't A Bad Diagnosis. It's A Stepping Stone.
The reason you don't want a diagnosis of MECFS and you do want a diagnosis of idiopathic chronic fatigue is that an MECFS diagnosis is the end of the road. There are no FDA-approved treatments for MECFS. If this were actually your diagnosis the only options are symptom management and waiting for experimental treatment and research to catch up.
In contrast, idiopathic chronic fatigue means you just don't know yet why you are fatigued. You need more investigations to discover what is making you feel this way. Many people who have idiopathic chronic fatigue take a very long time to find out the cause. There are many rare causes of fatigue and the cause may or may not be treatable.
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Common Causes of Chronic Fatigue
Note that I didn't use the term idiopathic here. That's because if you are diagnosed with one of these conditions your chronic fatigue isn't idiopathic anymore. You know what's causing it now!
Sleep Disorders:
-Sleep Apnea
-Restless Leg Syndrome
-Narcolepsy
Mental Health Related:
-Burnout*
-Depression
-Undiagnosed ADHD or Autism
-PTSD / cPTSD
Infection Related:
-Mononucleosis or Chronic EBV*
-Post Viral Chronic Fatigue*
-Lyme Disease*
-Parasites & Infectious Diseases*
-Primary Immunodeficiencies
Chronic Illnesses
-Fibromyalgia
-Arthritis (RA in particular)
-Chrons Disease
-Sjogrens or Other Vasculitis
-Rare Autoimmune & Autoinflammatory Disease
-Neurological Disorders like MS
-Mitochondrial Disease
Note that people who do have a diagnosis of MECFS can still have all of these other conditions and treating these comorbidities can greatly improve their quality of life.
*These conditions can lead to MECFS and early treatment increases the odds of recovery.
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MECFS Is Not The Normal Cause Of Chronic Fatigue
Only 1 in 20 patients with chronic fatigue have MECFS. If you have chronic fatigue, it is more likely than not that you do not have MECFS. (Note this statistic does not take into account long covid which has a much higher rate of MECFS diagnosis)
This is a good thing. We cannot treat chronic fatigue. But we can treat many of the common causes of chronic fatigue.
Do not let a doctor diagnose you with MECFS when they have not yet thoroughly evaluated you for other causes of chronic fatigue. If you do not experience PEM ignore advice about MECFS and take the general advice about chronic fatigue.
Likewise, if you do experience PEM, do not take advice from doctors or others who are aiming this advice at chronic fatigue patients generally. Things like exercise, GET, CBT and so on can be essential parts of managing chronic fatigue patients and very detrimental to MECFS patients.
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Fibromyalgia
A note on fibromyalgia specifically. I find that most chronic fatigue patients who are incorrectly labeled with MECFS and identify strongly with the diagnosis despite not having PEM actually have fibromyalgia.
Fibromyalgia can cause almost all the same symptoms as MECFS. It can be equally debilitating and they are often even mistakingly considered the same diagnosis.
However, fibro patients respond very differently to exertion. They are also frequently able to push through symptoms for years without deterioration. When these patients mistakingly label themselves with MECFS it can be very misleading to others about the dangers of pushing and exercising in MECFS. While this is not an intentional harm, it is nonetheless very harmful to the ME community.
See my post ME & Fibromyalgia to learn more if you are confused about the distinction between these two illnesses.
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Tiredness
/=
Chronic Fatigue
/=
MECFS
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People with Chronic Fatigue are not Just Tired but having fatigue and having Chronic Fatigue Syndrome or more accurately Myalgic Encephalomyelitis aka MECFS are also not the same thing.
The primary symptom of ME/CFS is post Exertional Malaise or PEM also called Post Exertional Neuroimmune Exhaustion or PENE.
This consists of a worsening of all symptoms 24-48 hours after mental or physical exertion and can even cause periodic Paralysis. Sore throat, headache, light and noise sensitivity, severe fatigue leaving you bedbound, and elevated resting hr are all good indicators of PEM.
This account is about severe ME and MECFS more generally. But chronic Fatigue patients often end up in the MECFS community when their idiopathic Chronic Fatigue is misdiagnosed as Chronic Fatigue Syndrome. This is part of why CFS is such a terrible label. Because doctors do not understand the difference and thus mislabel and mistreat both idiopathic chronic fatigue patients and ME patients.
While it may sound bad to be misdiagnosed, discovering this misdiagnosis is an amazing opportunity to get the differential diagnosis and healthcare you deserve. medical Gaslighting applies just as much to those misdiagnosed with ME as those properly diagnosed. In fact, it is in a sense even more harmful because it keeps these patients from seeking effective treatments for things like autoimmune disease, sleep Disorders, thyroid issues, ADHD, Autism, lyme and more.
Persons with ME should also note that the diagnostic workup laid out here for patients with chronic fatigue should also be undertaken for all patients with ME because these conditions often co-occur with ME and can be treated even if the MECFS cannot be.
We cannot treat chronic fatigue. But if we can find a reason for fatigue, sometimes we can treat that.
It should also be noted that fatigue in many other diseases even very serious diseases like cancer can often be much less severe than fatigue in ME.
"Fatigue is what we experience. But it is what a nuclear bomb is to a match." -Laura Hillenbrand
