NEWS

What Long COVID Awareness Means for People with Chronic Illnesses

Woman at a pharmacy wearing a face mask.

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Key Takeaways

  • People in the chronic illness community are noticing similarities between long COVID and conditions such as myalgic encephalomyelitis (ME) and fibromyalgia.
  • But people with chronic illnesses often have had to struggle for years to be taken seriously and receive a diagnosis.
  • Many hope that long COVID awareness will lead to more acceptance and better research for more conditions.

When the COVID-19 pandemic first began, healthcare professionals were puzzled by the patients who never seemed to fully recover from the virus. Since those first few months, help and resources have emerged for those experiencing what is now known as long COVID.

While it’s hard to be sure just how common long COVID is, a study published in the Annals of Internal Medicine found that among people who were symptomatic when they tested positive for COVID-19, 44% still had at least one symptom 30–45 days later, and 39% still had symptoms 7–9 months later.

As healthcare providers and experts learn more about what’s causing these issues like brain fog and fatigue, they’ve started to notice similarities between other existing illnesses.

In fact, many have noticed similarities between long COVID and fatigue-based illnesses such as myalgic encephalomyelitis (ME), fibromyalgia, dysautonomia, and postural orthostatic tachycardia syndrome (POTS). Symptoms of long COVID like extreme tiredness and joint pain are all features of other chronic illnesses.

Some COVID long haulers are even being diagnosed with these conditions alongside their long COVID diagnosis.

But many people who’ve lived with chronic illnesses for years say their conditions have never received as much attention as long COVID, until now.

Frustration From Chronic Illness Community

As the long-term impact of COVID-19 quickly became known, long COVID gained vast public awareness.

In July, the Department of Health and Human Services and the Department of Justice published guidance explaining that the condition could be considered a disability under the Americans with Disabilities Act (ADA). This would allow COVID long haulers to access federal resources and protections. Long COVID treatment centers cropped up nationwide, and large research studies began to better understand the condition.

Many in the chronic illness community feel like their conditions have never received such visibility and resources. For example, on average, POTS patients wait over four years for a diagnosis from symptom onset. And 75% of those patients experience one or more misdiagnoses.

“There seems to be more of a public and medical acceptance and sympathy towards long COVID patients, while ME is still stigmatized by media, medical professionals, and by the public in general, despite the similarities of symptoms,” Rob Jones, who lives in the United Kingdom and has ME, tells Verywell.

People with many of these conditions have had to struggle without answers and treatments for years.

“Many ME patients pushed and pushed for years without answers, and the lack of a reason meant many of us pushed ourselves to a point of no return,” Lorna McFindy, who lives in the U.K. and has had ME for approximately seven years now, though has only officially been diagnosed for three, tells Verywell. “We didn’t have the privilege of knowing what was causing us to become unwell.”

McFindy adds that she “would like to see more recognition for ME patients who have been living this way for decades with no support.”

What Happens When You Have Both?

Emma Wooller, based in the U.K., had struggled with an undiagnosed neurological condition for over five years when she caught COVID-19 last year. She now has long COVID.

“I feel long COVID might provide some clues to my previous ailments and prompt further investigation,” she tells Verywell. “While doctors are starting to recognize long COVID and, in turn, my other longstanding issues, it’s all a mess.”

People with long COVID have also struggled to gain support and be believed. It’s only recently that the medical community has begun to explore the condition more seriously.

“I fear no healthcare system in the world is currently able to keep up with the monstrous wave of acute COVID and long COVID cases,” Elisa Perego, PhD, honorary research fellow at University College London, who explores long COVID in her research, tells Verywell.

Perego was chronically ill before the pandemic but also developed a case of Long COVID-19 symptoms. However, like many, Pergego's symptoms do not typically fit the ME model; she experiences cardiovascular issues, coagulopathy, relapsing-remitting hypoxemia, arthritis. She also had a suspected pulmonary embolism.

“Stigma against chronic diseases in medicine will also contribute to poor care for long COVID patients in addition to many other chronically ill people,” she adds.

Hopeful for More Acceptance and Understanding

There is hope in the chronic illness community that interest in long COVID will also trickle down into more acceptance and a better understanding of other illnesses.

“Whilst it feels frustrating...I think that the wave of interest in long COVID will pull up all the little boats of chronic conditions,” Nina Muirhead, MRCS, DOHNS, director of Doctors with M.E., tells Verywell.

Muirhead hopes that long COVID will make “patient experts more culturally acceptable.”

What Is a Patient Expert?

Patient experts are those who have significant knowledge of their disease and treatment in addition to self-management skills. Medical teams will sometimes lean on patient experts as educators for other patients and as a person to provide feedback on care delivery.

“Doctors can’t be expected to know everything,” Muirhead says. But at the same time, once they’ve done all the tests and ruled out what they think a patient’s options might be, healthcare providers shouldn’t “turn around and tell the patient they’re making up [their condition],” she adds.

As a doctor who has a chronic illness herself, Muirhead acknowledges she is in a unique position.

“It was only by being on the patient side that I realized the medical profession have massively underestimated hidden disease,” she says. “I was completely ignorant to the knowledge gap between where I stood, and where [the patient] sat.”

Though it has been difficult for disabled and chronically ill people to see long COVID garner attention and resources their illnesses have never received, the prevailing sentiment is one of goodwill.

“I think this makes it even more important for our patient groups to stick together and be united in demanding proper treatment for our conditions,” Natalie MacWilliam, Norfolk, U.K., who has had ME for over 20 years, tells Verywell.

It’s also important that not only the chronic illness community and long COVID communities work together, but that medical and research professionals have their best interests at heart.

“I would like the next generation of doctors to be better at listening and believing patients,” Muirhead says. “The technology will be there for them to solve a lot of these ‘unsolved medical conundrums’ that are actually just chronic hidden debilitating illnesses.”

The information in this article is current as of the date listed, which means newer information may be available when you read this. For the most recent updates on COVID-19, visit our coronavirus news page.

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