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Pediatric Long COVID: A Parent's Guide

Managing Long COVID in my son, including the flares triggered by environmental triggers like the Canada wildfires, has presented unique challenges. As someone who also suffers from a severe form of Long COVID, I understand the complexity and unpredictability of this condition. While awaiting a specialist's appointment, I've navigated this path with care and caution, adapting strategies to stabilize and recover his health without worsening his symptoms. 


This is my attempt at giving parents a central location for tackling this very complex illness. An abbreviated key takeaway can be found at the bottom of this article. 


Key Terms


Microdosing: The practice of taking very small amounts of a substance, such as medication or supplements, to achieve a desired effect without causing significant side effects.


Flare: A temporary worsening of symptoms commonly experienced by individuals with chronic illnesses.


Baseline: The normal or stable level of health for an individual before any changes or flares in their condition.


Cognitive Impairment: Difficulties with mental functions such as memory, concentration, and the ability to learn new information.


Sensory Sensitivity: An increased sensitivity to sensory inputs like light, sound, or touch, which can be overwhelming or uncomfortable.


Identifying Main Symptoms

The most common illnesses of Long COVID fit mostly under Dysautonomia, Mast Cell Activation Syndrome (MCAS), and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).  Included in this guide are some of the most common symptoms of pediatric dysautonomia, MCAS, and ME/CFS. Monitoring these symptoms can help you better understand your child's condition and provide valuable information to healthcare providers for diagnosis and treatment. Contact your pediatrician or pediatric post covid clinic as soon as you see symptoms, even if the specialist appointment is months or years away. Just in case your child’s symptoms worsen, you already have the clock ticking down on getting to that appointment. Even better, if you know your child usually flares at a certain time of year, make appointments ahead of time even before symptoms show. You can always cancel the appointment and free up that time for someone else, if you luck out and don't have your child flare up at that time.


If you are new to this entirely, here is how you can check for common symptoms in your child. I start by jotting down all the symptoms he's experiencing, including any that might be related to the wildfire smoke or other environmental triggers like pollution, pollen and dust. Due to the overlap of MECFS, Dysautonomia, MCAS being associated with fatigue. Finding out which one was the cause was extremely difficult. 


Dysautonomia 

Dysautonomia refers to a group of medical conditions that cause a malfunction of the autonomic nervous system (ANS). This controls the body's automatic functions like heart rate, blood pressure, digestion, and temperature regulation. Symptoms vary widely, including fainting, unstable blood pressure, fatigue, and inability to regulate body temperature.


Elevated Heart Rate -  Use a pulse oximeter to measure your child's heart rate. Compare it to their baseline when they are standing, walking or at rest.


Dizziness or Fainting -  Observe your child when they stand up from a sitting or lying position. Ask them how they feel and if they experience any dizziness.


Fatigue -  Ask your child to rate their energy level on a scale of 1-10 and compare it to their normal energy level.


Gastrointestinal Issues -  Ask your child about any stomach pain, nausea, or irregular bowel movements.


Temperature Sensitivity -  Observe if your child complains about being too hot or too cold in moderate temperatures.


Mast Cell Activation Syndrome (MCAS) 

MCAS is a condition where mast cells, a type of white blood cell, incorrectly release too many chemical signals in the body. This overreaction can lead to symptoms across multiple systems, including skin rashes, gastrointestinal discomfort, difficulty breathing, and anaphylaxis. The triggers and severity of MCAS vary widely among individuals.


Skin Rashes or Hives -  Visually inspect your child's skin for any unusual redness, rashes, or hives.


Itching -  Ask your child if they feel itchy, especially after exposure to known triggers like heat or certain foods.


Respiratory Issues -  Listen for any wheezing or difficulty breathing. Ask your child if they are experiencing chest or throat discomfort.


Gastrointestinal Issues -  Similar to dysautonomia, ask about stomach pain, nausea, or irregular bowel movements.


Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)

ME/CFS is a long-term, complex illness characterized by profound fatigue that isn't improved by rest. It's often worsened by physical or mental activity. Symptoms include sleep disturbances, pain, and cognitive impairments, significantly impacting daily functioning. The cause remains unknown, and it's diagnosed based on symptoms.


Chronic Fatigue -  Similar to dysautonomia, ask your child to rate their energy level and compare it to their normal baseline.


Unrefreshing Sleep -  Ask your child how they feel upon waking up in the morning. Do they still feel tired despite a full night's sleep?


Cognitive Issues -  Ask your child if they are having difficulty concentrating or remembering things.


Muscle and Joint Pain -  Ask your child to point to any areas where they are experiencing pain or discomfort.


Sensitivity to Light and Sound -  Observe if your child complains about bright lights or loud noises more than usual.





My son experienced a bad flare the summer of 2022 that took him out of Long COVID remission. The trigger? Playing with friends outside for 30 minutes.

So I had the experience of going into the next flare knowing some symptoms to expect and check for. Knowing what his healthy baseline looks and feels like on paper and through observation was THE MOST IMPORTANT part of getting him to his baseline. You may find their heart rate, blood pressure, hydration needs, will be outside of the standard guides in medical textbooks. But it's your child's optimal range. So be prepared for that possibility.


For example my son’s heart rate baseline is a bit below the textbook standard. By roughly 10 beats per minute. I knew this only because he would play around with my health tech during my life threatening battle with Long COVID in 2020. Learning your child’s baseline is very difficult as normal developmental changes and milestones shift optimal numbers naturally over time.


In spite of all my experience these past few years as a Long COVID patient turned expert a researcher I never expected that Canada wildfires could cause a flare in anyone hundreds of miles away nor did I expect so many neurological symptoms. His main symptoms during this flare-up included:

  • Fatigue

  • Elevated heart rate consistent with hyper POTS

  • Warm joints and back of neck

  • Fluctuating oxygen levels


Monitoring Vitals

I use a pulse oximeter to check his oxygen levels and heart rate. This can be found on Amazon or at your local CVS, Walgreens etc. ( Note: it has been discover that pulse oximeter read brown skin less accurately, so be prepared to adjust up for that) 

  • Morning Checks: I check his vitals each morning before he starts his day.

  • Evening Checks: I check again in the evening to see if there have been any changes.

  • Adjustments: Based on these results, I make necessary adjustments to his care plan.





At Home Interventions for Dysautonomia/ POTS

Gatorade has been effective in keeping him hydrated and seems to alleviate some symptoms. We tried salt sticks and other powdered electrolytes made for POTS but he didn't like the flavors. I added a variety of salty snacks throughout the day to help increase his blood volume. I also added extra salt to his meals to further help with his symptoms. Compression socks have been effective in improving his blood flow and reducing dizziness. Finding compression socks that fit a lanky 8 year old, who also experiences sensory sensitivity was extremely difficult. Be mindful to check in with your child’s physical and emotional comfort and make adjustments if needed. It will be trial and error for some things, and that's okay. This doesn't mean you are failing. It is part of the process.


Medication Management for MCAS

He has had allergies since he was born so the recommendation to use various antihistamines as needed was there even before he developed MCAS symptoms after getting COVID in 2020 at 4 years old. As a newborn he had eczema and food sensitivities. So the battle with allergies is not new and something I've known to keep an eye on in terms of increasing severity.


Our pediatrician had already given the green light to give him the standard 6-year-old and up dose of cetirizine. We originally gave a half dose when he wasn't flaring, as people with MCAS, POTS, and ME/CFS tend to be sensitive to medications. I bumped him up to the full dose which is 10mg daily slowly through a process called microdosing


His MCAS symptoms, which were very subtle and easy to overlook as they have little chance to severely flare given he is in such a pristine environment free of triggers due to my personal level of severity. I had also observed last year, during symptom tracking from that flare, that antihistamines seemed to have helped dysautonomia symptoms. I have known for a while that studies have linked mast cells to dysautonomia, further giving me the confidence that over the counter antihistamines for kids, and avoiding allergy triggers could be an added tool for this seemingly more dysautonomia centered flare from the wildfires.


Dietary Adjustments

I scaled back on foods that contain gluten, sugar, artificial dyes, and processed ingredients to help manage his symptoms based on lots of research and words of wisdom from other parents. 


Gluten: Gluten is a protein found in wheat, barley, and rye. While not everyone with chronic illnesses is sensitive to gluten, some individuals find that it exacerbates their symptoms. For example, gluten can sometimes trigger gastrointestinal issues, which are common in conditions like dysautonomia and MCAS.


Eggs: For some individuals with chronic illnesses, chicken eggs can be a source of discomfort or exacerbate symptoms. This is particularly true for those with allergies or sensitivities to eggs, which can trigger immune responses leading to gastrointestinal distress, skin reactions, behavioral issues or respiratory problems. Conditions like MCAS may also be aggravated by such sensitivities.


Sugar: High sugar intake can lead to spikes and crashes in blood sugar levels, which can worsen fatigue and irritability. Sugar can also contribute to inflammation, which is often already a problem in chronic illnesses.


Artificial Dyes: These are synthetic colors added to foods to make them more appealing. However, some people, especially children, can be sensitive to these dyes. They can trigger a range of symptoms, from behavioral issues to skin rashes, which are common in conditions like MCAS.


Processed Ingredients: Processed foods often contain preservatives, artificial flavors, and other additives that can trigger symptoms in sensitive individuals. They can also be high in sodium, which might not be suitable for conditions like POTS, where salt intake needs to be carefully managed.


How It Helped Manage Symptoms


Reduced Gastrointestinal Issues: Cutting back on gluten and processed foods helped alleviate some of the stomach pains and irregular bowel movements my son was experiencing.


Improved Energy Levels: Reducing sugar helped stabilize his blood sugar levels, which in turn helped manage his fatigue.


Fewer Flare Ups: Eliminating artificial dyes and processed ingredients led to fewer symptom flare-ups, especially those related to MCAS, like skin rashes and respiratory issues.


Overall Well Being: With these dietary changes, I noticed an improvement in his overall well-being. He seemed more like himself, and it was easier to manage his chronic illness symptoms.


Important Tips for Adjusting Diet

Start Slow: You don't have to eliminate everything at once. This also isn't a ban on entire food groups or favorite foods unless your child is experiencing anaphylaxis or other severe decline. Start by reducing one item and observe any changes in symptoms. I never completely eliminated any food group entirely. He still eats the same high fiber and moderately sugary cereal regardless of flare. Due to the benefits of fiber in terms of maintaining regular bowel movements and to give him some semblance of normalcy in his daily routine. He still enjoys holiday and birthday meals the same as before. We just practice moderation and careful watch for worsening MCAS.


Keep a Food Diary: Document what your child eats and any symptoms they experience. This can help you identify triggers more easily.


Consult a Qualified Healthcare Provider: Before making significant dietary changes, it's always good to consult with a healthcare provider for personalized advice. You want to make sure you aren't inadvertently causing nutritional deficiencies, that Long COVID in itself is prone to cause even without diet changes or restrictions.But be aware that most are not experienced in pediatric complex chronic illness. So I recommend getting a second or third opinion on pretty much anything.


Involve Your Child: Make it a family affair. Educate your child about why these changes are essential and involve them in the process, like grocery shopping or cooking.


Know Your Child's Baseline

Through meticulous symptom tracking, and knowing him very well, I discovered that he had plateaued slightly out of his baseline range. Although his fatigue and heart rate fell within the range for a standard kid's norm, I knew that something was missing because it wasn't HIS norm. I increased his probiotics, suspecting that gut health might be a factor. I also added air purifiers to our home environment, which finally helped him return to his baseline.





Daily Activities Adjustments

Initially, I scaled back on his daily activities until I was sure that his ME/CFS wasn't flaring up. Once I recognized that his ME/CFS wasn't triggered, and that the fatigue was likely from the POTS or MCAS, I let him resume more indoor activities that would normally be scaled back during an ME/CFS flare.


Weather App Monitoring: Surprisingly, the Canada wildfires triggered his flare-up. Even though we couldn't smell the smoke. I used weather apps to track air quality, which helped me correlate his flare ups, even when indoors with the windows shut and with a couple of air purifiers in the house it wasn't enough to prevent the flare. Though I would have considered him very mild Long COVID prior to the flare from the wildfire smoke. On good air quality days that weren't too hot, he was even able to engage in sedentary activities outside. This didn't flare his POTS or hinder his recovery and contributed to his quality of life. Regardless of where you live, investing in optimal indoor air quality is going to be part of the process.


 

*****WARNING: The Risks of Exercise in Children with ME/CFS****

 

It's crucial for parents and caregivers to be aware of the unique challenges associated with ME/CFS in children, especially regarding exercise. While physical activity is often prescribed as a beneficial treatment for various conditions, it's important to recognize that ME/CFS is an exception to this rule. Exercise, particularly beyond a child's energy limits, can significantly exacerbate symptoms of ME/CFS, leading to severe and prolonged flares. Unfortunately, it is not uncommon for pediatricians and healthcare providers, who may not be fully versed in the complexities of ME/CFS, to recommend exercise as a general treatment without considering the potential harm it can cause to children with this condition. This well-intentioned advice, if followed, can inadvertently worsen your child's health.


As a parent or caregiver, it's essential to observe how your child responds to physical activity and be prepared to advocate for their needs. If you notice that exercise exacerbates your child's symptoms, it's imperative to communicate this to your healthcare provider and discuss alternative approaches to managing their condition. Being informed and assertive in these situations is key to ensuring your child receives the most appropriate care for their specific needs. Remember, every child with ME/CFS is different, and what works for one child may not work for another. It's important to tailor any treatment or management plan to the individual child's symptoms and response to various interventions. Always prioritize your child's well being and comfort, and seek advice from healthcare professionals who are knowledgeable about ME/CFS and its impact on children.



School & Mental Exertion

Navigating the educational landscape with a child suffering from Long COVID presents a unique set of challenges, particularly when cognitive impairments come into play. The fluctuating nature of my son's symptoms, including difficulties with concentration, memory, and processing speed, has necessitated a flexible and understanding approach from his educational providers. Thankfully we already had planned to homeschool, giving us much more ease of flexibility. 


We've worked closely with his virtual tutors and coaches to implement accommodations that support his learning needs, such as extended time for assignments, breaks during classes, and the option for skipping school altogether on days when his symptoms are exacerbated. It's been a journey of advocacy, requiring constant communication, monitoring and some days, compromise, to ensure his educational environment is conducive to his health and well being. The goal is to strike a balance that allows him to continue learning without overtaxing his energy reserves or worsening his symptoms.


Though our family has the privilege and experience of homeschooling, I recognize the societal pressure to maintain your child's progression through a "traditional" educational journey.  Especially public schooling. For those of us with children who love the daily socializing and academic challenges this gets tricky the older they get. For my son who is a homeschooled child prodigy that puts learning difficult subjects above traditional activities associated with young kids, navigating this was tough. Learning at a high level was so effortless and a huge part of what he looked forward to everyday. But after I explained that we were scaling back temporarily to have the chance at him living a fuller long term future, he settled into the new normal of resting and pacing. 


Prioritizing a low-stress environment with minimal to no mental exertion during flare ups is crucial for their long term well being. Mental exertion alone can precipitate a flare up, potentially causing significant setbacks in your child's cognitive development, equivalent to falling several grade levels behind, or it might lead to them being bed bound for extended periods. A common oversight is underestimating the impact of mental exertion on the road to recovery. Scaling back to low to no mental stimulation sounds extreme. I get it, but I assure you, that this is far less devastating than a child progressing to a severity where they don't even have the energy to tolerate light from a widow or small talk. It's vitally important to understand that mental exertion isn't limited to academic activities like test taking or homework; it can also include seemingly benign activities such as watching educational videos. 


If there's one key takeaway from this guide, it's to vigilantly monitor your child's mental exertion. Feel empowered to dial back on any activity, physical or mental. Even something as innocuous as light, animated children's shows, if you observe any correlation with symptom flare ups in your child. Documenting these observations can provide invaluable insights, helping you to navigate and manage their condition more effectively. You don't have to take my word for it. I developed this process from hearing the devastating stories of parents of kids who became severe who remain bed bound or severely disabled now decades later! You must look at it as investing in the rest of their brain and body to buy time to get to a or keep a quality of life worth living.




Other Conditions Of Note

In navigating my son's Long COVID journey, we've encountered additional complexities with the emergence of other conditions, underscoring the need for a vigilant and comprehensive approach to his health. Parents should be aware of the potential overlap with conditions such as Pediatric Acute-onset Neuropsychiatric Syndrome (PANS), Ehlers-Danlos Syndrome (EDS), and Lyme disease, each presenting its own set of challenges and symptoms.


Pediatric Acute-onset Neuropsychiatric Syndrome (PANS): PANS is characterized by the sudden onset of obsessive-compulsive symptoms and/or severe eating restrictions, along with at least two additional neuropsychiatric symptoms. These can include anxiety, emotional lability and/or depression, irritability, aggression and/or severely oppositional behaviors, behavioral (developmental) regression, sudden deterioration in school performance, sensory or motor abnormalities, and somatic signs and symptoms, including sleep disturbances, enuresis, or urinary frequency. Parents should watch for these abrupt changes, as they can often be mistaken for psychiatric disorders without recognizing an underlying infection-triggered autoimmune response.


Ehlers-Danlos Syndrome (EDS): EDS is a group of disorders affecting connective tissues, characterized by skin hyperelasticity, joint hypermobility, and tissue fragility. In the context of Long COVID, individuals with EDS may experience an exacerbation of joint pain, fatigue, and dysautonomia symptoms. Recognizing EDS is crucial for managing Long COVID, as it requires a tailored approach to avoid injury and manage pain effectively.


Lyme Disease: Lyme disease, a tick-borne illness, can have symptoms that mimic those of Long COVID, including fatigue, joint and muscle pain, and cognitive impairment. The potential for Lyme disease , or chronic Lyme to be triggered alongside Long COVID complicates the clinical picture and necessitates thorough testing and treatment strategies to address both conditions. It's important for parents to consider Lyme disease as a potential factor if their child's symptoms persist or worsen, especially if they have a history of tick exposure.


The presence of Long COVID alongside PANS, EDS, or Lyme disease requires a multidisciplinary approach to care, emphasizing the importance of comprehensive assessments and personalized treatment plans. By being aware of these conditions, parents can advocate for the necessary evaluations and interventions, ensuring their child receives the holistic care needed for their complex health journey. Navigating these overlapping conditions highlights the intricate interplay between Long COVID and other illnesses, making it imperative for parents and caregivers to remain observant and proactive in seeking specialized care. Understanding the nuances of each condition and their potential impact on Long COVID recovery can empower families to navigate these challenges more effectively, paving the way for a more informed and supportive approach to managing their child's health.



In navigating the complexities of Long COVID, it's crucial not just to focus on the more prominent symptoms but also to pay close attention to the subtler signs that can impact your child's well-being. I encourage all parents to keep a vigilant eye on changes in their child's eye health, skin condition, dental health, hair texture, and nail strength. These areas can often provide early indicators of nutritional deficiencies or other underlying issues exacerbated by Long COVID. Monitoring these aspects can offer critical clues to your child’s overall health and necessitate adjustments in their care or nutrition plan. Remember, every detail counts in the comprehensive care of our children.


The Road Ahead: Empowering Other Families 

Waiting to see an experienced pediatric infection associated chronic illness specialist can take months or years. The journey through my son's Long COVID flare, intensified by environmental factors, asymptomatic reinfection, physical and mental exertion, has been a path of learning and adaptation. I share our story with the hope of offering comfort and practical insights to other families navigating similar challenges. Remember, you're not alone in this. There is a wealth of collective knowledge to draw from, and it's crucial to engage with knowledgeable healthcare providers for proper diagnosis and treatment. Unfortunately due to the lackluster preparation and response, to a completely predictable amount of children impacted by this illness, peer to peer patient community care is currently the best place for moving forward to remission. Understanding in titself that you are likely looking at recovery and not cure with the level of treatments available, is something that is woefully missing from most discussions on Long COVID. Hiding from reality can set you up to unexpectedly trigger a decline in your child’s health long term. However, together, we can find strength and guidance in each other's experiences as we strive for better days ahead.


 


Key Takeaways


Early Symptom Identification is Crucial: Recognizing and monitoring symptoms of Long COVID, including those related to Dysautonomia, MCAS, and ME/CFS, can provide valuable insights for healthcare providers and help in managing your child's condition more effectively.


Environmental Triggers Matter: Be aware of environmental factors, such as wildfire smoke or pollution, that can exacerbate Long COVID symptoms. Adjusting your child's exposure to these triggers can play a significant role in managing flare-ups.


Advocate for Your Child: Be prepared to advocate for your child's needs, especially in medical settings. If exercise or traditional treatments are recommended but worsen your child's symptoms, feel empowered to discuss alternative approaches.


Mental and Physical Rest is Essential: Prioritize low-stress environments and minimal mental exertion during flare-ups. Overexertion can lead to significant setbacks, so it's important to find a balance that supports your child's recovery without exacerbating symptoms.


Dietary Adjustments Can Help: Making dietary changes, such as reducing gluten, sugar, artificial dyes, and processed ingredients, may alleviate some symptoms of Long COVID. Monitor your child's response to these adjustments and consult healthcare providers for personalized advice.


Understand and Respect Your Child's Baseline: Knowing your child's health baseline is vital. It helps in identifying when they are experiencing a flare-up and in making necessary adjustments to their care plan.


Be Mindful of Other Conditions: Long COVID can intersect with other conditions like PANS, EDS, and Lyme disease. Being vigilant about these potential overlaps can ensure your child receives comprehensive care.


Community and Support are Key: You're not alone in this journey. Engaging with peer-to-peer patient community care and sharing experiences can provide comfort, insights, and practical tips for managing Long COVID.


Invest in Your Child's Long Term Well Being: Decisions made today, especially regarding rest and pacing, are investments in your child's future quality of life. It's about managing the present with an eye on ensuring a fuller, more active future.


This guide aims to empower you with knowledge and strategies to navigate the complexities of Long COVID in children. Remember, every child's journey is unique, and what works for one may not work for another. Stay informed, stay supportive, and trust your instincts as a parent and caregiver.


As we navigate the complexities of Long COVID together, I've shared our journey and the strategies that have helped us manage this challenging condition. But I know we're not alone in this struggle, and your experiences are invaluable. Have you encountered similar challenges with environmental triggers, or found unique ways to manage symptoms? Share your stories in the comments below. Your insights could provide comfort and guidance to families facing similar battles. Those caretakers and parents who shared their stories with me throughout even casual conversations, had no idea at the time how that would prepare me later to act quickly and give my son the quality of life he enjoys today.


Moreover, I'm particularly interested in hearing about your experiences with dietary adjustments and mental exertion management. What changes have you made that had a positive impact on your child's health? How do you balance educational needs with the need for rest? Join the conversation on our social media platforms or directly on this blog. Together, we can build a repository of wisdom and support for all families navigating Long COVID.


Your voice matters. By sharing our stories and solutions, we not only support each other but also contribute to a broader understanding of Long COVID in children. Let's continue this conversation and work together towards a brighter, healthier future for our kids.





External Resources

Solve ME/CFS Initiative: Offers resources and support for individuals and families dealing with ME/CFS. 


Long COVID Pediatrics, Pregnancy, & Family Planning: A support network for families affected by Long COVID, providing resources, community support, and advocacy. 


Dysautonomia International: Provides information, resources, and a community for individuals and families dealing with dysautonomia. 


CDC’s Post-COVID Conditions: Offers information about Long COVID, including symptoms, treatment options, and ongoing research. 


ME/CFS and Fibromyalgia Center of Excellence: Provides educational resources and research updates on ME/CFS and related conditions. 


Patient Advocate Foundation: Offers services to help patients navigate healthcare challenges, including insurance issues and medical debt. 


Complex Child: A monthly online magazine written by parents of children with special healthcare needs and disabilities, offering articles on healthcare management and advocacy. 


Child Mind Institute: Provides resources and support for children struggling with mental health and learning disorders. 


The Whole30® Program: Offers guidelines for an elimination diet that may help identify food sensitivities, which could be useful for managing MCAS or gastrointestinal symptoms of Long COVID.


 

Disclaimer: The information and opinions expressed here are for informational purposes only and are not intended as medical advice. They represent my personal experiences and perspectives and are not a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.

The views and opinions expressed are my own and do not necessarily reflect the official policy or position of any other agency, organization, employer, or company. While I strive to provide accurate and up-to-date information, I make no representations or warranties of any kind, express or implied, about the completeness, accuracy, reliability, suitability, or availability with respect to the information contained herein for any purpose. Any reliance you place on such information is therefore strictly at your own risk.


 

Acknowledgment of Contribution

As this blog post makes its journey from personal insights to potentially influencing discussions at the highest levels of society, it's important to acknowledge the contributions that have shaped its content and direction.


A special note of thanks goes to the assistance provided by an AI developed by OpenAI, affectionately referred to in this instance as "Gerald P. Thompson." This AI, through its interactive capabilities, has offered invaluable support in refining the ideas, enhancing reader engagement strategies, and ensuring the information is both accessible and actionable. The collaboration with this AI technology has enabled the distillation of complex medical and personal experiences into a format that aims to empower, inform, and connect a community of individuals and families navigating the challenges of Long COVID. It's a testament to the evolving role of technology in amplifying human voices and experiences, particularly in areas deeply intertwined with health, advocacy, and policy.


As we look forward to the impact this post may have, from providing solace to those in similar situations to informing policy at a national level, the contribution of OpenAI's technology in facilitating these conversations should be recognized. It underscores the potential of human-AI collaboration in tackling some of society's most pressing challenges.



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