LONG HAUL COVID OFFERS HOPE OF BETTER TREATMENT OPTIONS FOR CHRONIC ILLNESS

As of April 1, 2022 there are over 80 million COVID infection cases that have been reported in the U.S.¹   It is anticipated that roughly half of these patients will develop Long COVID.²

Rarely discussed are the similarities of symptoms of Long COVID, ME/CFS (also known as Chronic Fatigue Syndrome), Lyme disease and other chronic illnesses.  These similarities of symptoms has led to the proposal of a new classification of these illnesses as PostActive Phase of Infection Syndromes or PAPIS.³ Researchers Dr. Ken Friedman⁴ and Dr. David Maughan⁵ describe the similarities between ME/CFS and Long COVID, how their families have been affected, and discuss how treatment options for ME/CFS may have implications for Long COVID in their recent interview on the “Paradigms” podcast.⁶

Drs. Friedman and Maughan discuss the importance of classifying Long COVID, ME/CFS, Lyme disease, and other similar chronic conditions as PAPIS for the advancement of research, improving clinical care and finding cures.  The PAPIS classification is more fully discussed in a recent journal article.⁷

COVID-19 is an initial respiratory infection caused by SARS-CoV-2, a coronavirus discovered in 2019. According to the CDC, COVID spreads when an infected person breathes out droplets or particles.⁸  You may become infected by breathing in those droplets or particles, having droplets land on your eyes, nose or mouth, or touching your eyes, nose or mouth when the virus is on your hands.  Symptoms can range from mild to severe. Some people may infect others without realizing it because not all who are infected have symptoms.⁹

Long COVID is defined as the lingering symptoms following COVID-19 that are known to last weeks or months.   However, it is too early to know the long-term outlook for this disease.¹⁰   “Long COVID” can be experienced by anyone who has had COVID-19, even if their illness was mild, or they were free of symptoms, and the symptoms of Long COVID may not appear for weeks after infection.

Long COVID symptoms and their similarities to other chronic illnesses are having a dramatic impact on the funding of chronic disease research which has long been neglected. It appears that the Coronavirus pandemic, and the unanticipated Long COVID consequence is now breathing new life into the challenge of finding better treatment options for chronic illness.¹¹

NOTES 

1. U.S. COVID-19 Statistics — https://covidusa.net/
2. “How Many People Get ‘Long COVID?” — https://www.sciencedaily.com/releases/2021/10/211013114112.htm
3. Friedman KJ, Murovska M, Pheby DFH, Zalewski P. — “Our Evolving Understanding of ME/CFS” — Medicina, 2021 — https://www.mdpi.com/1648-9144/57/3/200\
4. Dr. Ken Friedman, Ph.D. — Associate Professor of Medicine, Rowan University School of Osteopathic Medicine
5. Dr. David Maughan, Ph.D. — Research Professor, University of Vermont College of Medicine
6. Paradigms Podcast: Dr. Ken Friedman and Dr. David Maugham — “ME/CFS and Long Haul Covid Similarities and Ramifications” — https://paradigms.life/2022/dr-ken-friedman-and-dr-david-maughan-me-cfs-and-long-haul-covid-similarities-and-ramifications/
7. Friedman KJ, Murovska M, Pheby DFH, Zalewski P. — “Our Evolving Understanding of ME/CFS” — Medicina. 2021; 57(3):200 — https://doi.org/10.3390/medicina57030200
8. “How COVID-19 Spreads” — https://www.cdc.gov/coronavirus/2019-ncov/prevent-getting-sick/how-covid-spreads.html
9. “Symptoms of COVID-19” — https://www.cdc.gov/coronavirus/2019-ncov/symptoms-testing/symptoms.html
10. Raveendran, A. V., Jayadevan, R., & Sashidharan, S. (2021) — “Long COVID: An overview” — Diabetes & metabolic syndrome, 15(3), 869–875 — https://doi.org/10.1016/j.dsx.2021.04.007
11. “How long COVID sheds light on other mysterious (and lonely) chronic illnesses” (NPR) —https://www.npr.org/sections/health-shots/2022/02/28/1083458296/long-covid-autoimmune-meghan-orourke-invisible-kingdom

 

 

 

HOLIDAY ADVICE BY PATRICIA FENNELL IN WebMD

In the midst of a busy holiday season, it is more important than ever for those with chronic illness to communicate, advocate and maintain clarity around their capacities and needs. With the added concerns and precautions of navigating COVID-19, supportive conversation with loved ones is key to managing expectations and creating joyful holiday experiences.

Clarity & Advocacy

Chronic illness calls for clarity and advocacy. Friends and family need clear communication in order to manage expectations. Patricia Fennell (MSW, LCSW-R) coaches patients on how to negotiate their needs. "People don't know how to ask for what they need. They'll stay home from a holiday party because they can't stand that long. We need a new social etiquette for people with chronic illness." Fennell advises stating your needs in behavioral rather than general terms. "Don't just tell Aunt Jane you'll have to leave early. Tell her you've been feeling fatigued and can stay only two or three hours. Also, tell her that standing tires you out — ask her to have a seat for you. Putting it in behavioral terms makes it easier for Aunt Jane to conceptualize and to accommodate." 

Firm & Flexible Boundaries

No one understands your needs better than you. Pre-set boundaries are key in maintaining optimal health over the holidays. Having predetermined end times for hosted gatherings, as well as extra prep and post time built into your schedule for recovery can be helpful. Keeping departure time open ended at gatherings is a good idea, with a gentle way to excuse yourself when you're ready. The best boundary to feel comfortable with is simply, saying no when needed.

Ask For & Employ Help

When hosting, ask family or close friends to assist with cooking or other tasks that can be shared. "Asking in advance allows people to help gracefully." Order groceries or catering in advance and have it delivered. Hire extra support for pre and post clean-up. Prep as much as possible in advance and consider the use of disposable dishes and flatware when appropriate. 

Gratitude & Giving

The holidays can be an excellent time to reflect on what you are most grateful for, and to focus on the spirit of giving. "Take toys to the Marine Toys-for-Tots Foundation, take food to homebound seniors through Meals on Wheels, or provide goods and services to those in need. It will boost your spirit and remind you what the holidays are about."

The numbers of people with chronic illness are growing, and that's not necessarily a bad thing, says Fennell. "People are living today with heart disease and cancers that were once considered terminal illnesses, not chronic illnesses." Next time you are at a holiday party, or anywhere, look around. Some of those healthy-looking people may have chronic illnesses too. The growing numbers also mean you're not alone. 

Read full WebMD article

Contributed by
Jennifer Howard

ACR Convergence 2021

Colleagues and experts from around the world have been gathering every year since 1934 to share revolutionary science and discuss timely topics in rheumatology around prevention, diagnosis, and treatment of rheumatic diseases. 

The American College of Rheumatology (ACR) Convergence 2021 is an all-encompassing virtual experience designed for the global rheumatology community. 

The conference takes place November 3-9, with extended programming on November 10. The annual event has become the preeminent scientific event for rheumatology, with over 16,000 attendees in 111 countries.

Following our team's research, examining how the COVID–19 pandemic may be affecting the health and wellness of people with scleroderma, the following poster presentation was created. In highlighting the experience of patients with scleroderma during the COVID-19 pandemic, we are better able to respond in ways that help people stay well.

Pandemic andPatients: Examining Health-Related Behaviors of Patients with SystemicSclerosis During the COVID-19 Pandemic Tuesday, November 9, 2021. Session: Patient Outcomes, Preferences and Attitudes. Nancy Dorr, Ph.D. (The College of Saint Rose), Patricia Fennell, MSW, LCSW-R (Albany Health Management Associates, Inc.), and Lee Shapiro, MD (Steffens Scleroderma Foundation and Albany Medical College).

To learn more about ACR Convergence 2021, please visit https://www.rheumatology.org/Annual-Meeting

by Jennifer Howard

COVID and Scleroderma: How Are You Really Doing?

Experiences with Scleroderma During the COVID-19 Pandemic

 

A team of researchers* are conducting a study examining how the COVID–19 pandemic may be affecting the health and wellness of people with scleroderma.

Participants with scleroderma are answering questions that involve healthcare during the pandemic – how people are coping with the risk of COVID-19, how people feel about the uncertainty the pandemic can bring to their lives, what health behaviors people are engaging in (both in general and COVID related, and how people are feeling physically and mentally. Volunteers are providing valuable knowledge to health care professionals involved in the care of people with scleroderma.

The more we understand about the experience of people with scleroderma during the COVID-19 pandemic, the better able we are to respond in ways that help people stay well.

 

Direct questions to Patricia Fennell at communications@albanyhealthmanagement.com

 

* Lee Shapiro, MD (Professor of Medicine at Albany Medical College), Patricia Fennell, MSW, LCSW-R (CEO of Albany Health Management Associates), and Nancy Dorr, PhD (Professor of Psychology at the College of Saint Rose)

COVID-19 ("Coronavirus")
Information and recommendations from the Scleroderma Foundation
Medical & Scientific Advisory Board Leadership Committee

(reviewed July 1, 2020)