What Your Doctor Should Have Told You About Myalgic Encephalomyelitis
When You Were Diagnosed With "Chronic Fatigue Syndrome"
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Post Exertional Malaise Is The Defining Symptom of ME/CFS
There is a definining symptom unique to ME/CFS and that is post exertional malaise. Post exertional malaise is the drastic exhasurbation of ME symptoms and flu like symptoms 24-48 hours after exertion.
What level of exertion triggers post exertional malaise depends on the severity of the ME in question and includes physical and cognitive exertion. Examples of exertion that might cause PEM include exercise, filling out a form, or for severe cases simply sitting up.
If you experience severe fatigue but do not have post exertional malaise and primarily experience symptoms at the time of exertion you may be diagnosed with "Chronic Fatigue Syndrome " (CFS) when you do not actually have ME/CFS. If this is the case you should seek a second opinion until you can find the true cause of your fatigue which may be treatable unlike ME. However, until the cause of your fatigue is known, pacing as though you have ME is a good safeguard.
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Pacing Is Different For ME/CFS
Because ME is defined by PEM, pacing in ME requires not just avoiding doing more than you feel able to do, but doing little enough to avoid triggering PEM. For many patients it is easy to do enough in one day to trigger PEM without feeling exhausted.
In order to pace more effectively, you can use heart rate and heart rate variability (hrv) monitoring. The app Visible will track these measurements every morning for free and you can also buy devices that monitor these markers.
You should aim for your morning hr and hrv to be stable. If your morning hr is over 10bpm higher than it normally is this is a sign of overexertion. Workwell Foundation recommends not exceeding 15bpm over your resting hr for more than 2 minutes for effective hr pacing.
Note: if you have postural orthostatic tachycardia (diagnosed by a hr increase of 30bpm or more when standing up) you may need to use looser hr pacing guidelines or seek medication for your orthostatic intollerance.
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Pacing Is Not Just About Symptom Management
Overexertion in ME is associated with increased disability, pain, fatigue, depression, anxiety, disordered sleep, and lowered quality of life. (1)
But while pacing is not a cure for ME/CFS it may also be more than just a way to control symptoms.
Repeated overexertion as is found in graded excercise therapy GET or other physical therapy that involves continual increases in exertion is associated with an increase in symptoms and decrease in functioning in 85% of patients (2) and many patients who are bedbound report repeated crashing as the primary reason for their decline.
(1) https://journals.sagepub.com/doi/abs/10.1177/216507990805600502
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Adrenaline Surges And ME/CFS
Sometimes when you overexert you may feel a sudden rush of energy. This feeling is sometimes described as "wired but tired." This is colloquially termed an adrenaline surge within the ME community.
Adrenaline surges are dangerous because they can allow you to overexert far more than you usually would. Learning to recognize adrenaline surges is key to pacing successfully.
Signs you are experiencing an adrenaline surge include:
Flushing of face, skin, and ears
Rapid speech & thoughts
Heart palpatations & tachycardia
Feeling jittery and unable to sit still
Sudden surge of energy after being exhausted
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Using Mobility Aids Is Good Actually
Because there are no known ways of increasing physical ability in ME, the goal of managing ME/CFS should not be to maximize physical ability but to maximize functional ability. Therefore, the use of functional aids such as wheelchairs and other mobility devices is highly encouraged.
In addition to dedicated mobility devices like wheelchairs and walkers, other devices like rolling stools, dishwashers, washing machines and tumble dryers, and other home technology can additionally serve to lessen the physical burden of everyday tasks.
The use of mobility aids will not cause you to physically decline and in fact can prevent decline from repeated crashes.
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Symptom Management Is Available
While there is no FDA approved treatment for ME, it is possible to improve quality of life by treating commorbidities and providing symptom management. This can include:
Sleep aids
Pain management
Treatment of orthostatic intollerance and POTS if present
Treatment of mast cell activation if present
Treatment of other commorbidities
Experimental treatments such as low dose naltrexone
Psychiatric medications for reactive depression
The provision of good symptom management can greatly lessen the everyday burden of ME, even if the improvements to functional capacity are minimal.
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ME/CFS And Fibromyalgia Are Different And You Can Have Both
While ME and fibro share many common symptoms they are distinct diagnoses.
The 2016 updated diagnostic criteria for fibromyalgia state that a diagnosis of fibromyalgia is valid regardless of other diagnoses and does not exclude the presence of other clinically important illnesses. (1)
Likewise the International Consensus Criteria for ME say that it is not a diagnosis of exclusion and that fibromyalgia may be a commorbidity of ME. (2)
If you have widespread pain thst meets the diagnostic criteria for fibromyalgia you should be diagnosed with it in addition to ME. You can recieve most medical treatments for fibromyalgia with the exception of any PT or excercise treatments that trigger post exertional malaise. Having fibromyalgia and ME is associated with higher levels of disability than ME alone. (3)
(1) https://www.ncbi.nlm.nih.gov/books/NBK279092/table/fibromyalgia.T.2016_revisions_to_the_201/
(2) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3427890/
(3) https://pubmed.ncbi.nlm.nih.gov/25308475/
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The Truth About Prognosis
ME is an incurable chronic illness. Presenting an optomistic prognosis can make doctors feel good, but can stop patients from being able to make important fact based decisions. Remission can happen but recovery is rare and only happens in around 5% of cases. The chance of improvement in symptoms is much higher perhaps 39.5% (1).
More stringent definition of ME such as meeting the ICC diagnostic criteria or NICE diagnostic criteria instead of more vauge definitions of "Chronic Fatigue Syndrome" is associated with worse prognosis. Having fewer chronic or mental illnesses increases the odds of recovery. (2)
Some studies find youth associated with better outcomes while other dispute this claim. Increased fatigue severity is linked to worse outcomes. (3)
Only a minority of patients (15.9%) are found to consistently get worse over time. (4) If this is your trajectory you should be carefully evaluated to ensure a second diagnosis has not been missed, although sometimes this can be simply ME.
(1) https://pubmed.ncbi.nlm.nih.gov/15699087/
(2) https://pubmed.ncbi.nlm.nih.gov/9093600/
(3) https://me-pedia.org/wiki/Prognosis_for_myalgic_encephalomyelitis_
and_chronic_fatigue_syndrome
(4) https://pubmed.ncbi.nlm.nih.gov/29204592/
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How To Cope With Chronic Illness Grief
It is normal when you become sick with ME to experience profound grief at the loss of your health and former life. This can cause reactive depression or simply make you feel overwhelmed and hopeless.
A counselor trained in helping people with severe illness and who knows about or is willing to learn about ME can be very helpful in learning to process your grief.
You must accept that your value comes simply from being human and your productivity does not define your worth. Even if you cannot do what you used to that does not mean you have no reason to live.
Finding meaning in the smallest parts of being alive and learning to build a new life in the ashes of your old one is essential to your survival. Merely surviving at all when much of the world finds disabled people worthless is an act of bravery and resistance.
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Did your doctor know how to help you when you were diagnosed with Myalgic Encephalomyelitis ME/CFS or "Chronic Fatigue Syndrome"?
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If they didn't, unfortunately, that is the norm.
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Despite a 1.3% prevalence rate in the US, currently only 1/3 of medical schools teach about ME.(1) (2)
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Up until the release of the Updated NICE and Mayo Clinic Proceedings within the last few years most doctors who did learn about the disease learned harmful advice.
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Misinformed doctors pushed and continue to push patients into GET and CBT believing that they could excercise and think their way to health. Treatments that in reality caused worsened symptoms in 86% of patients. (3)
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This is why this ME Awareness Month @meactnet's Millions Missing 2024 campaign on May 12th is themed
Teach ME Treat ME focused on getting up to date information into the hands of doctors and med Students.
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This post is a brief overview of everything your doctor should have told you when you were diagnosed with Myalgic Encephalomyelitis. As 50% of the Millions More patients with Long Covid meet a diagnosis of MECFS this is important info for long hauler patients too. (4)
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So this guide covers what your doctor should have told you when you were diagnosed, in the hopes that more people will get the advice they need before it is too late.
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#NEISVoid #ChronicIllness #MedEd #ChronicFatigue #Fibromyalgia #POTS #Spoonie #SpoonieCommunity #Pacing #StopRestPace #MillionsMissing #MEAwarenessDay #MEAwareness #MEAdvocacy
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(1) CDC 2022
(2) ME Action 2024
(3) NICE Survey on GET/CBT 2019
(4) Leonard A Jason & Joseph A Dori 2023
