Long Covid Isn't Always MECFS : How to tell when it is.
Key Facts
The pandemic is NOT over. It is essential that we continue to take extensive precautions to prevent further mass death and disability.
1 in 5 adults with covid will experience some form of long covid symptoms
Wearing high quality kn95 masks, avoiding large gatherings, & vaccination* are the best ways to prevent covid infection
Covid is a serious disease and can lead to death or severe disability months after infection even in mild cases.
Aggressively resting, taking paxlovid, and remaining well hydrated during covid infection may help prevent long covid. Overexertion during illness should be avoided at all cost.
Many patients with long covid will go on to develop MECFS a severely disabling chronic illness with no cure or treatment. MECFS patients have some of the lowest quality of life of any chronic illness.
*Some cases of long covid are triggered by vaccination. However, the risk of vaccination is still far less than that of active infection. See my post-MECFS & Vaccines for more detailed info.
-----
What is long covid?
Long covid is a broad term referring to symptoms occurring following a covid-19 infection lasting 4 weeks* or longer. It is a part of a group of illnesses known as post-viral or post-infection illness. Other post-infection illnesses include MECFS and chronic Lyme disease.
Some long covid patients have PICS or post-intensive care syndrome if they were hospitalized due to severe covid. Complications of PICS include PTSD, muscle weakness & brain fog.
Common symptoms of long covid include:
Chronic Fatigue
Post Exertional Malaise
Difficulty Breathing
Cough
Chest Pain
Tachycardia / Palpatations
Cognitive Dysfunction
Headache
Sleep Dysfunction
Dizziness
Pins & Needles
Change in Smell or Taste
Depression or Anxiety
Joint or Muscle Pain
Rash
Changes in Menstrual Cycle
*according to Mayo Clinic definitions may vary
-----
What is MECFS?
Myalgic Encephalomyelitis or Chronic Fatigue Syndrome is a neuroimmunological disease whose defining characteristic is PEM or post-exertional malaise.
Post-exertional malaise is an exacerbation of symptoms 24-48 hours after exertion. Symptoms of PEM include
-Severe fatigue
-Muscle weakness
-Temperature dysregulation
-Muscle pain
-Sore throat
-Cold & flu symptoms
-Sleep dysfunction
-Cognitive dysfunction
-Tachycardia
-Headache / migraine
-Light & noise sensitivity
-Gastrointestinal dysfunction
-Nausea & dizziness
-Periodic paralysis
-Ataxia / speech problems
-Air hunger
And more
These symptoms are strongly triggered by exercise and can be triggered by even minor exertion like showering, or in severe patients simply sitting upright.
MECFS is not exclusively a post-viral illness but is most often triggered by a viral infection. Long covid patients who experience post-exertional malaise for over 6 months should be diagnosed with MECFS.
-----
Not All Long Covid Patients Have MECFS
Very importantly, post-exertional malaise is NOT a required symptom of long covid. This means that many people with long covid do not have PEM and do not have MECFS.
This is a good thing. PEM is the least treatable symptom of MECFS so LC patients who do not experience PEM have a higher likelihood of recovery.
Additionally, this is an essential distinction to draw because physical therapy and exercise can be extremely effective treatment for patients with non-MECFS long covid particularly those with PICS. But if ME and non-ME long covid patients are not separated exercise studies will not be able to draw useful results and may produce harmful conclusions.
-----
Post-Viral Fatigue Syndrome
It's important to note that just having PEM and long covid does not immediately mean a patient has MECFS. Instead, the appropriate initial diagnosis would be post-viral fatigue syndrome.
PVFS can include post-exertional malaise and should be treated similar to MECFS with pacing and rest. However, the recovery rate from post-viral fatigue is much higher. The cut-off between post-viral fatigue and MECFS is generally 6 months for adults and 3 months for children.
-----
Other Diagnoses:
So what about patients who are severely ill but don't experience PEM? The answer is that there are a vast variety of conditions that are triggered by long covid. MECFS is only one. Together they produce cases of "complex chronic illness." In order to receive appropriate treatment, it is important that all diagnoses be considered and treated appropriately and with consideration of comorbidities. All of the following diagnoses can be severely disabling and cause a wide array of symptoms.
Fibromyalgia
POTS
MCAS
EDS
Dysautonomia
Chronic Migraine
MS
Sjogren's
Other Rare Autoimmune & Autoinflammatory Disease
Unlike MECFS, many of the above diagnoses do have effective medication options.
-----
Pacing Is Different For MECFS
Pacing, that is modifying your life to fit within a limited energy envelope, is essential for people with any sort of chronic fatigue. This includes almost all long covid patients.
However, for patients that experience PEM, aka people with MECFS, pacing must not only mean stopping before your fatigue forcibly stops you, but stopping before you trigger PEM.
You can think of it as though non-ME patients have a debit card. They need to make sure they do not spend more energy than is on the card or they will run out before the end of the day.
ME patients have a credit card. They can easily spend more energy than they can pay back the next day without noticing. So they have to learn to spend responsibly and can't just rely on their body to tell them when to stop because it may not warn them until it is too late.
-----
Recovery From Long Covid Is Variable & Has Better Prognosis To MECFS
All of the variability in long covid patients means that the prognosis for long covid is significantly better than that of MECFS patients more broadly. This is for a number of reasons:
1.) The earlier into ME or post-viral fatigue syndrome one is diagnosed and given appropriate resting instructions the higher the chance of recovery
2.) Some diagnoses that fall under the LC umbrella such as POTS, MCAS, and autoimmune diseases have effective medication options
3.) Some patients with long covid have PICU syndrome which responds favorably to graded exercise and generally improves over time
4.) Covid-specific antivirals and treatments are being developed for long covid that will not be applicable to MECFS
None of this minimizes the massive burden of long covid symptoms or the huge toll it can take on patients regardless of ME diagnosis. However, because long covid patients are at most a few years into their chronic illnesses this improves their chances of recovery.
-----
Long Covid Patients & ME Patients As Allies
Given the large overlap of long covid and ME patients these two communities are natural allies. However, it is important that we still remember that these are two separate illnesses. This is because
1.) Higher recovery rates from long covid must not be used to dismiss the permanency and extremely low recovery rates in long term MECFS patients
2.) Long covid patients response to exercise must be studied separately based on whether or not they also suffer from PEM and MECFS
Long covid patients, many of whom will find some level of recovery, are potentially the best allies the MECFS community will ever get. MECFS patients have decades of experience and knowledge to give long covid patients the best shot at recovery. But in order for us to work together effectively, we all must understand the differences and similarities between the diseases and not conflate the two. This is essential for patients with long covid, MECFS, or both to all receive the appropriate diagnoses, treatment, and advocacy.
Furthermore, emerging evidence suggests that reinfection with covid can trigger relapses or worsened MECFS and long covid. Long covid patients have also demonstrated susceptibility to developing post-viral illness. Thus even if they recover once it is in their best interest to support MECFS research.
-----
Key Takeaways
Not all long covid is MECFS.
When you are talking about long covid patients who experience PEM you should talk about MECFS because that is the illness these patients have.
When you are talking about long covid patients generally be clear that they are different conditions.
All long covid patients have some form of complex chronic illness and thus are natural allies for people with ME.
It is important for patients with long covid to receive the correct diagnoses, including not just MECFS but also many other related conditions.
Patients with MECFS must not be prescribed GET or CBT. This includes long covid patients with PEM because these patients carry (or should carry) a MECFS diagnosis.
All long covid patients who experience PEM should be advised to pace aggressively to avoid PEM. This is regardless of whether they have PVFS (less than 6 months post covid) or MECFS (more than 6 months)
Long covid patients who recover should not generalize their experience onto MECFS patients more broadly and should continue to support MECFS research.
-----
Not all Long Covid is Myalgic Encephalomyelitis.
While its super important to raise awareness of the simularities of the millions missing with MECFS and millions more with Long Covid it is also essential to recognize that only a subset of covid long haulers meet the criteria for a diagnosis of ME.
ME aka Chronic Fatigue Syndrome is not the same as chronic Fatigue. The defining symptom of ME / CFS is Post Exertional Malaise or an exacerbation of metabolic, neurological and immune dysfunction symptoms 24-48 hours after exertion.
When you are talking about long covid patients who experience #PEM you should talk about MECFS because that is what these patients have.
When you are talking about long covid patients be clear that only the subset with PEM have MECFS.
It is important for patients with long covid to receive the correct diagnoses, because while there are no FDA-approved treatments for ME, many comorbidities do have effective medication options. Management of ME must also be tailored based on a patient's comorbidities.
Patients with MECFS and post-viral fatigue syndrome must not be prescribed GET or CBT. This includes all long covid patients with PEM.
Long covid patients who experience PEM should be advised to Stop Rest Pace and informed about the importance of pacing aggressively not just to prevent symptoms from fatigue but to prevent PEM in the following days. This is regardless of whether they have PVFS (less than 6 months post covid) or MECFS (more than 6 months)
Because long covid is a broad category that encompasses patients MECFS, MCAS, fibromyalgia, POTS, dysautonomia, autoimmune and autoinflammatory diseases in many combinations the prognosis for long covid patients is much more variable than that of ME patients and recovery is more likely in early stages of ME, long covid patients who recover should not generalize their experience onto MECFS patients more broadly and should continue to support MECFS research.
MECFS patients have decades of experience with pacing, medical gaslighting, chronic illness, housebound and bedbound life and more. We hope that covid long haulers will learn from ME and ally with us to end post-viral illness.
