Learn more about our FREE COVID-19 Patient Support Program for chronic illness patients and their loved ones.
Some people who are infected with COVID-19 go on to experience long-term effects from the virus known as long COVID, long-haul COVID, or post-COVID conditions. Post-COVID conditions can include a wide range of health problems that can last weeks, months, or longer. Researchers are working to understand more about this condition and who experiences it. There is currently no test to diagnose post-COVID conditions, and people may have a wide variety of symptoms that could come from other health problems.
Given the ongoing research and many unanswered questions, we wanted to learn more from our chronic illness community about their experiences with long COVID. In our latest poll, the Global Healthy Living Foundation’s COVID-19 Patient Support Program aimed to gain insight into our community’s experience with long COVID — whether or not they’ve been diagnosed with long COVID, and their thoughts on the related symptoms.
Of the 438 respondents, 89 percent are up to date on all eligible COVID-19 vaccines or have taken pre-exposure prevention medicine (e.g. Evusheld).
Here are some other key learning and insights from the poll.
Of the 65 percent who have been diagnosed with COVID, 44 percent have been diagnosed with long COVID
As part of the poll, we asked if participants were ever diagnosed with COVID-19 and 65 percent said yes (19 percent from their physician and 46 percent tested positive). Of that 65 percent, 44 percent reported being diagnosed with long COVID.
Interestingly, back in April of this year we asked about our community’s experience with COVID and only 20 percent reported that they had tested positive or had symptoms of COVID.
Chronic fatigue, brain fog, and shortness of breath were the most common long COVID symptoms
Since there is no unform diagnosis or criteria for long COVID, we felt it important to ask about common symptoms people experienced with long COVID, to gain more insight into the condition. Of the 12 answer options, participants were able to select all that apply:
- 78% had chronic fatigue
- 74% had brain fog
- 60% had shortness of breath
- 59% had joint or muscle pain
- 55% had sleep issues
- 54% had headaches
- 46% had digestive issues
- 46% had dizziness
- 44% had heart palpitations
- 42% had depression and/or anxiety
- 38% had changes in smell or taste
- 14% had changes in menstrual cycle
For those who had responded earlier in the poll that they have not been diagnosed with COVID, we asked about what long COVID symptoms they would be most concerned about. The responses revealed that the top three symptoms of concerns are the same as the most common symptoms experienced: Brain fog (66 percent), chronic fatigue (65 precent), and shortness of breath (60 precent).
Along with those symptoms, COVID exacerbated symptoms of underlying conditions
As part of the poll, we had a free response section where participants could share any additional thoughts on symptoms experienced from COVID and long COVID. Many reported that getting sick with COVID exacerbated their chronic disease:
- “COVID caused a flare of my arthritis. My medications were adjusted accordingly and now I’m ok.”
- “Conditions I suffered prior to contracting COVID have exacerbated after having COVID (i.e., fibromyalgia, hypertension, high cholesterol, eczema, seasonal allergies, etc.).”
- “Getting COVID did not make me as sick as I feared, but as I suspected, it did trigger a flare.”
- “I had some of these symptoms prior to COVID-19 due to Sjogren’s. I think COVID-19 has made my Sjogren’s symptoms worse.”
- “It has exacerbated my other ailments — asthma and arthritis pain are much worse.”
Many people with chronic illness have remaining questions on long COVID
In the free response section of the poll, respondents elaborated on the lingering questions they have about long COVID, its treatment, and how it relates to their underlying conditions:
- “Are immune compromised and/or suppressed more or less likely to get long COVID?”
- “I also have psoriatic arthritis, so it is hard to know if my symptoms are from that or long COVID.”
- “Most of these symptoms could also be my autoimmune issues so I don’t know that they are COVID related or autoimmune related.”
- “Where can I get treatment for long haulers?”
The Global Healthy Living Foundation is committed to providing ongoing education about COVID-19 vaccines for the chronic illness and immunocompromised community. To stay informed about the latest COVID-19 vaccine news for people who are immunocompromised, take immunosuppressant medications, or have autoimmune conditions, follow all of our COVID-19 vaccine coverage here.
About the Patient Support Program Quick Poll
Members of our program have underlying health issues – such as inflammatory arthritis and other autoimmune conditions, heart disease, lung disease, diabetes, and more — that may increase their risk for COVID-19 complications. They are interested in understanding the best ways to stay safe during the pandemic and to be part of a community of people with similar concerns, questions, and fears.
We regularly poll members, who live in the U.S. as well as around the globe, about a variety of topics, including how the pandemic is affecting their lifestyle, mental health, chronic disease management, medication adherence, and more.
We use this information to inform the educational resources we provide and to inform other stakeholders — such as public health experts, policymakers, advocacy groups, health care professionals, and pharmaceutical companies — about chronic illness patients’ needs and concerns. You can participate in ongoing poll by joining the support program here.