Long Hauler Syndrome: Research & Clinical Considerations

Bradly Jacobs, MD, MPH, ABIM, offers complete solutions for healthy, vibrant living. Dr. Brad addresses diverse concerns – ranging from chronic health issues, to healthy aging, to sustaining peak performance in the workplace. Dr Brad has a long and deep commitment to caring for patients using a technology-enabled, patient-centered, personalized, comprehensive, and whole person approach.

As a physician and educator, Dr. Brad’s integrative health approach responsibly combines the best of modern medicine with established wisdom and traditional East-West practices. Working in collaboration with his clients, Dr. Brad develops state-of-the-art diagnostic and therapeutic plans tailored to individual needs and circumstances.

 

Alternative Therapies in Health and Medicine (ATHM): Today we’re going to talk about your presentation at AIHM about the COVID Long-Haulers Syndrome, can you give me an overview of what you’re hoping to cover in the presentation?

 

Dr. Jacobs: The intention of the presentation is to educate health professionals about this syndrome, a condition that most people have heard about but have very little understanding of. My hope is to provide insights into who appears to be at higher risk and then provide a theoretical construct about what we might be able to do about it. There’s not a lot of research yet on the condition; however, in the past 2 months we are seeing a rapid pace of published information from health professionals and citizen scientists alike.

 

ATHM: Do you see it as a condition where you can predict which people will get it, or does it appear more random regarding who is being impacted by the Long Hauler?

 

Dr. Jacobs: The citizen scientist surveys published online suggest that Long Haulers Syndrome is more likely to occur in white women; however that may be the result sample bias of those more likely participating in online forums and groups. There is some early research published by health professionals suggesting increased risk with age, female gender, and presenting initially with > five symptoms during your first week of acute COVID.

The symptoms predominantly include fatigue, post exertional malaise, muscle weakness, brain fog, memory lapses, mood disturbances and a host of others.

The prevalence varies depending on the study population, conservative estimates from a large UK mobile app survey suggest 2% and 5% of people infected with acute COVID may develop Long Haulers; whereas a University of Washington study found a prevalence of 30% at 6 months follow-up. With over 125 million cases globally, and assuming 5% develop this syndrome, that would translate to over 6 million people suffering from COVID Long-Haulers syndrome. It’s a dramatic number that’s affecting the planet right now. This will surely amplify an already amplified level of human suffering ongoing at this time in the face of mass migration and threats to survival in the face of human rights abuses, climate change, and institutional racism. From an economic perspective, there is no doubt, this syndrome has and will continue to dramatically impact individual and societal work and household productivity.

 

ATHM: Are pre-existing conditions related to Long-Haulers?

 

Dr. Jacobs: There are insufficient prospective studies published to date to identify whether pre-existing conditions increase risk for Long Haulers Syndrome. In one of the few prospective cohort studies, the Sudre et al study using a mobile application to query 4.2 million adults found 4.5% reporting symptoms at 2 months and that Asthma increased risk by two-fold; however, I have not seen other studies confirming that association nor being properly designed to answer this question.

Anecdotally, there are many examples of well-known infectious disease physicians and other public health professionals who have publicly discussed their personal journey with this syndrome and have presented their cases. These are high-functioning professionals and are begging the health professional community to stop ascribing this experience as psychosomatic and to stop relinquishing these patients to the bastions of ‘crazies’ and ‘complainers’.. they implore this is REAL and we need to get ahead of it.

One of the main purposes of this talk is to recognize this is something that’s happening to many people. It’s something that’s a real phenomenon and we shouldn’t create some prejudice or judgment around this. There’s a lot of judgment around fibromyalgia, for example, and chronic fatigue syndrome. It is important to normalize Long Haulers as this is a real medical issue. A lot of health professionals have poo-pooed it and have said that this is all your head. There is a big effort to help health professionals recognize this as a medical issue, not a psychiatric one.

With that said, there is a huge initiative focused on this syndrome. Congress appropriated the NIH with over $1 Billion to study this syndrome. The first question is what should we call this condition… COVID Long Haulers, Long COVID (my preferred term), Post-Acute Sequalae of SARS-CoV-2 (PASC) which is the NIH current terminology etc. Second, we need to define what this syndrome is and what it is not… What is the medical definition for someone being diagnosed with Long Haulers Syndrome… what is the minimum duration of symptoms, what previous criteria of acute covid must be included etc.

The NIH initiative is focusing on questions such as 1) What does the spectrum of recovery look like, how many people continue to have symptoms or develop new symptoms after acute infection, what makes some people vulnerable and others not, what is the underlying biological mechanism, does this syndrome increase risk for other chronic or acute conditions?

 

ATHM:  What is the treatment protocol for people to get through this?

 

Dr. Jacobs: Academic and community medical centers have been setting up multi-specialty clinics after realizing people present requiring assistance with neurological, psychiatric, physical rehabilitation, and organ-based issues including pulmonary, cardiac etc..

There is a paucity of outcome research on what therapies are effective for this condition.

In my view, anyone that touts having a ‘cure’ or ‘the solution’ is selling snake oil.

We just don’t know yet…

With that said, I think there are some common sense approaches and believe we can create a theoretical framework upon which we should perform research. In my opinion, the bedrock to reducing risk and potentially improving severity and/or time to recovery is self-care such as optimizing sleep quality, eating a whole-foods based diet, engaging in contemplative practices such as meditation, yoga, internal style martial arts, improving the quality of one’s relationships and reducing loneliness. These habits will bring homeostasis to the human organism and allow for improved quality of life, as well as have the potential to heal dysregulated systems such as the gastrointestinal tract, immune system, and energy production systems in the body. I mention the gastrointestinal tract because as you know, it’s a doorway between the outside and internal world. Furthermore, we know that the gut lining is a portal of entry with a high amount of ACE2 receptors, which is the portal of entry for the SARS-CoV-2 virus. Many people in the US suffer from a sub-optimal GI system and for those people I recommend the 4 R program … removing toxins, replacing deficiencies, reinoculating a healthier microbiome through food or supplementation, and repairing the gut with nutrients. We believe Long Haulers syndrome may be influenced by a hyperactive or dysregulated immune system, and therefore this is an important area of focus and no doubt there will be significant research directed in this area. Thankfully, substantial research has shown that lifestyle modifications as mentioned above positively influence immune health. Lastly, given so many patients present with fatigue and post-exertional malaise, research focused on the energy production systems in the body including within the mitochondria will be important to better understand this condition.

These are the domains that I think make sense. Given the safety profile of interventions mentioned above, i believe these are worth investigating at the individual and collective level. I am hopeful large registries will be created to document interventions and associated outcomes.

 

ATHM: Do you think this is something that we’re going to see as a long-term impact from COVID maybe even two or three years from now? Or do you think that these conditions can be treated in a relatively short timeframe?

 

Dr. Jacobs: I do think this is going to be persistent for a subset of this group for quite some time. That is my concern. I think there’s going to be long-term sequelae for some subset of the group that currently is experiencing this and given the magnitude of this pandemic, that will be millions of human beings.

 

ATHM: What do you hope participants will see as a takeaway from your presentation?

 

Dr. Jacobs: They’ll recognize this is a real condition that is affecting 5-30% of people infected with SARS-CoV-2, and certain people are at increased risk. Furthermore, there is significant suffering with specific symptoms, and this will require a holistic, person-centered approach supported by an ecosystem individualized to the patient’s circumstances.

Learn more about this event: www.aihm.org/conference/

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