Diagnosing and treating long haulers can be a source of aggravation not just for the patient, but for the doctor and practitioner as well. It can feel like a mysterious and disabling medical problem with just too few proven ways to diagnose let alone treat it.
Chronic Fatigue/ME, and other invisible illnesses
I've been working with Chronic Fatigue/ME, and other invisible illnesses for over 20 years in my medical practice. This has been a personal journey as well as a professional one for me. And I truly believe that we can offer our patients more strategies as well as more hope for healing.
I've seen just too many doctors make this one mistake in their thinking about long COVID and long haulers. Which is this just because we experienced a worldwide novel virus, they assume that the post viral sequela, known as long haulers is also novel. And it's not. We see post infectious fatigue outbreaks consistently after epidemics and outbreaks of illness.
Here are some of the history I used to understand this point. In 1918, the Spanish Flu which we all know way more about than we ever did before, long after the initial infection, 10% of people never really fully recovered. And a small percentage of those were very, very sick.
In 2003, with the SARS outbreak, 12 months after infection, 60% of people still experienced extreme fatigue and sleep disturbances. Ebola, those who are fortunate enough to survive 28% of them have deep lasting fatigue.
In 1955, There was an outbreak of illness in the London Hospital, the Royal Free Hospital in London, and there was this big cluster outbreak of Myalgic Encephalomyelitis.
Now at the time, they decided that it was just hysteria. Can you think why? You may have guessed it, most of the people infected were nurses, and they were female. And so they assumed that all of their symptoms just chalked up to stress and hysteria.
Now since then, these poor women have been vindicated. They have gone back and reassessed all of their medical files. And sure enough, their criteria of all of their signs and symptoms matched up with CFS and ME, the data is so clear, showing the connection between epidemics and outbreaks of CFS/ME.
It frankly led to another false assumption that I see in the medical community, which is thinking that CFS/ME, all of CFS/ME just has an infectious etiology. Now we've really moved away from that in the literature.
But I do still see many doctors falling into the trap of the mistake of looking for just the one causative thing when they're dealing with their chronic complex ill patients. CFS/ME is always always multifactorial, and it's widely heterogeneous. Each patient is going to express this condition in a slightly different way.
The same is going to be true for your Long COVID And your Long Hauler patients, they will have their own unique expressions of this illness. Now, right now, there's a discussion in the medical community, if long COVID is triggering a spike in diabetes, or is it that we're just catching diabetes that was underlying in these patients because they're coming in for medical care because of the long COVID?
This is a question that we need to examine and think about as physicians. But I can tell you, there are going to be many, many different signs that your long hauler patients will come in with loss of sense of smell, brain fog, bizarre neurological symptoms, all of these things, but every single one of them is going to have unreliable energy or deep consistent fatigue.
What to do?
Now the question for you as the caring healing professional is what to do? I suggest from my experience is that you treat Long COVID and Long Haulers just like you would your CFS/ME patients, because they are the same.
Now I get that diagnosing CFS is a point of concern for many doctors, and half of those polled said that since we lack a test to really diagnose CFS. This is a huge problem for them. It's a roadblock. But we have other tools besides labs to help our patients.
We can go back to the old way, right? And we can take a really, really really good history. And listen, be listening for those clues to lead you to your patient's path to healing.
We can rule out any underlying health issues that could also be contributing to their fatigue. And we can focus on one to two health foundations that will be the needle movers for this unique, beautiful patient sitting in front of you today. Is it sleep? Is it digestion? Mindset?
You need to initiate those protocols to address your patient's root cause and see how they respond. And again to be clear, they're gonna have more than one root cause I pretty much guarantee it. There could be multiple latent viruses in your patient.
There could be other root causes as well. Again, it's rarely just one cause. And the other thing is be honest with yourself and your patients.
If working with complex chronic illness does not bring you joy, if it's not your focus, and you don't want it to be, then refer out, refer to the practitioner who enjoys the challenge and wants to guide those who struggle with CFS/ME and Long COVID, guiding them to offer them the best medicine for their needs.
Patients go untreated or unsupported
We know so much more now than we did in 1955 or 1918. About how chronic infections can be part of the picture for CFS/ME patients, and now Long Haulers. I believe there's no reason for these people to go untreated and to feel unsupported.
Now, it does not mean that we have all the answers, of course not. We are still uncovering the amazing world inside our bodies coming to understand the interrelated pathways. To me, the discovery, the detective work is part of the fun of being a doctor.
Wong, T. L. (n.d.). Long COVID and Myalgic Encephalomyelitis/Chronic Fatigue
Syndrome (ME/CFS)—A Systemic Review and Comparison of Clinical Presentation and Symptomatology. MDPI. https://www.mdpi.com/1648-9144/57/5/418
Campen, C. L. M. C. V., Rowe, P. C., & Visser, F. C. (2021). Orthostatic Symptoms and Reductions in Cerebral Blood Flow in Long-Haul COVID-19 Patients: Similarities with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Medicina, 58(1), 28. https://doi.org/10.3390/medicina58010028
Underhill, R. (n.d.). Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Organic Disease or Psychosomatic Illness?A Re-Examination of the Royal Free Epidemic of 1955. MDPI. https://www.mdpi.com/1648-9144/57/1/12
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