What ME/CFS Can Teach Us About COVID-19 Long Haulers
As if there wasn’t enough to be worried about.
It’s an ongoing tragedy, this pandemic. Of trying to answer questions when we simply don’t know enough. Of mask politicization that has contributed to the death toll. Of strained medical systems and front-line workers. Of a vaccination rollout that has gone from a hopeful end to mounting frustration.
Of families ripped apart by COVID-19.
The long-term effects after contracting COVID-19 is still not understood. But there is growing evidence that it is something else we need to worry about. Recovered and recovering patients are reporting post-viral symptoms such as fatigue, brain fog, muscle and joint pains, and migraines. It’s like their bodies are still defending against an illness no longer there. Yet these patients, called long haulers, are being turned away from hospitals. They are told their tests show nothing. That they are making it up.
For people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), it’s a familiar story.
An Embattled Population
If things go the same way as ME/CFS, long haulers are entering a new world. A world where they can’t do things as they did before. A place where their symptoms, their daily struggles, are dismissed as fictitious. Where the support they receive is not from the medical community but from fellow sufferers.
It’s the world of living with chronic illness.
The more coverage long haulers get, the more their lives reflect ME/CFS sufferers. The symptoms are near-identical to each other. The lack of medical treatment, too. Daily, basic functioning becomes the goal, rather than the norm.
Yet, ME/CFS differs in some ways, notably that it drew scientific curiosity in 1988. Yet it's still not understood. Funding research has been scarce; $5 per patient to $283 for lupus. It is seen as a fake illness, one used by people too lazy to work or to make excuses. Despite millions of people in the United States alone suffering from ME/CFS, sufferers find their condition ridiculed by doctors and employers alike.
Similarities
While exact numbers are hard to accurately count, the CDC estimates around one million people in the United States have ME/CFS. For long haulers, Harvard Health estimates tens of thousands of people suffer from post-viral symptoms. This number will only increase. Just consider the holiday spikes we expect toward the end of January. It's not unfathomable to think the number of long haulers will increase to hundreds of thousands.
The similarities to ME/CFS are not unfounded. The Atlantic’s Ed Yong has reported on long haulers over the past year and one passage stuck out to me:
“Long-haulers had to set up their own support groups. They had to start running their own research projects. They formed alliances with people who have similar illnesses, such as dysautonomia and myalgic encephalomyelitis, also known as chronic fatigue syndrome. A British group — LongCovidSOS — launched a campaign to push the government for recognition, research, and support.”
Not only are long haulers reaching out to the ME/CFS community, but they are finding themselves in the same situation. Sufferers must petition governments to conduct research, and sufferers must fund their own projects. The decades of disregard for ME/CFS mirrors the inattentiveness to long haulers. You’re more likely to be sent to a psychiatrist than you are to be given proper medical treatment. The mentality of ME/CFS rings true here: we have to do things for ourselves if we hope to make a difference.
That’s why the ME/CFS community doesn’t rely on the scientific community for answers. They find ways to fund research through not-for-profit organizations like Solve M.E. and seek their own community for guidance. Forums like Health Rising are a lifeline for sufferers and families alike when the scientific community fails them.
While the long-term effects are still largely unknown, long haulers suffer months of symptoms like those of ME/CFS. The CDC’s list of long-term symptoms of COVID-19 is troubling, especially when patients report relapses because that, to me, defines living with chronic illness. It doesn’t matter what you do, the cycle of relapsing will ensnare you.
Here’s another commonality:
Like ME/CFS sufferers, long haulers don’t test positive for the causing illness. A common story within the community is to be tested for everything under the moon yet getting no tangible results. We spend ages in waiting rooms desperately hoping for a shred of information, only to be turned away. This is, unfortunately, the future of long haulers if there is no effort to mitigate the condition.
Its clear long haulers are experiencing post-viral symptoms due to COVID-19. Viral infections are a leading theory for the onset of ME/CFS, and it’s reasonable to assume they are similar issues.
Let’s be clear, if the similarities to ME/CFS and long haulers are this close, there are serious personal and societal impacts. For example, Suicide is the highest cause of death for those with ME/CFS. In a 2016 study of 56 patients, 26.8% of patients were reported to have committed suicide. Divorce rates for couples where one suffers from a chronic illness increases to 75%, almost double the 40% national average. And a 2008 study showed an annual total cost is approximately $7 billion due to loss of employment, increases in health costs, and disability income.
If long haulers are facing similar post-viral alterations as ME/CFS, these numbers will reflect this growing community.
Future Research
It’s my hope that research of COVID-19 long haulers will also benefit the ME/CFS community. With all the similarities, I’d like to believe the two groups have interwoven solutions. As more clinics and research open I’m hopeful more experts will emerge who can find these solutions.
While there are many possibilities, one I recently learned about is called craniocervical instability, or CCI. It’s a spinal compression occurring after a physical or inflammatory disease that causes similar symptoms to ME/CFS. It’s something I’m exploring myself while others, like Jennifer Brea, have found positive outcomes. It makes sense for long haulers to experience CCI after the trauma of COVID-19. Researchers should investigate this as a possibility.
Community Action
There are things we can do now though. Considering the desperation of the current situation, it's unlikely long haulers get much attention until the pandemic is dealt with. But there are things we can do now to help, especially from those in the ME/CFS community.
First, resources for family members and caregivers such as ME/CFS and Fibromyalgia Self-Help. COVID-19 long haulers, whether they recover or not, will need extra support from their loved ones. Their lives will completely change and having a support system that understands is important. Caregivers will have to adapt. Knowledgeable support systems save lives.
There also needs to be a deeper conversation about changing patient care for mysterious illnesses. Being repeatedly told your symptoms are not real is unacceptable. It’s a necessary, long-term goal because these patients aren’t going away.
Let’s open the possibility for deeper communication between doctors and long haulers.
Because ME/CFS sufferers know all too well how artificial that conversation currently is. We know how difficult it is to live this way, and there are no better advocates for long haulers. We know the sacrifices of necessary adaptation to life with chronic illness. Opening those forums to deeper conversations will go a long way. We should be sharing our stories, how we adapted to illness, and what has helped/not helped us. It’s better to be proactive than to leave people in the dark.
Long haulers may be in this for the long fight, let’s be there for them.
