August 13th is the anniversary of the death of Florence Nightingale – British nurse, statistician, infection preventionist, social reformer, and patient advocate. At the end of her life, she was bedridden for several years, but she did not let that stop her from her campaign to improve health standards.
Although she was never officially diagnosed, many scholars and medical historians believe she suffered from Chronic Fatigue Syndrome (Myalgic Encephalomyelitis, ME/CFS). For that reason, Nightingale has been adopted as a “famous face” for MD/CFS. May 12th, the birthday of Nightingale is Myalgic Encephalomyelitis/Chronic Fatigue Syndrome International Awareness Day.
In honor of Nightingale’s passing 113 years ago, I thought it would be appropriate to discuss the topic of fatigue in healthcare – both from a clinical perspective and metaphorical standpoint.
Long COVID, CFS, and Other Missed Conditions
For a long time, CFS was not recognized as an actual disease. Even today, there is a lot of stigma, confusion, and mystery surrounding ME/CFS. Patients who suffer from this disease often tell stories how it took multiple clinicians, numerous tests, and constant advocacy on their part to be believed.
The CDC and WebMD collaborated on several excellent resources on this disease: https://www.webmd.com/chronic-fatigue-syndrome/video/me-cfs-survey
Unfortunately, what has happened to ME/CFS sufferers is currently playing out for Long COVID patients.
The World Health Organization defines Long COVID as “the continuation or development of new symptoms 3 months after the initial SARS-CoV-2 infection, with these symptoms lasting for at least 2 months with no other explanation.” According to Mayo Clinic, symptoms include:
- Fatigue
- Symptoms that get worse after physical or mental effort
- Fever
- Lung (respiratory) symptoms, including difficulty breathing or shortness of breath and cough
- Neurological symptoms or mental health conditions, including difficulty thinking or concentrating, headache, sleep problems, dizziness when you stand, pins-and-needles feeling, loss of smell or taste, and depression or anxiety
- Joint or muscle pain
- Heart symptoms or conditions, including chest pain and fast or pounding heartbeat
- Digestive symptoms, including diarrhea and stomach pain
- Blood clots and blood vessel (vascular) issues, including a blood clot that travels to the lungs from deep veins in the legs and blocks blood flow to the lungs (pulmonary embolism)
- Other symptoms, such as a rash and changes in the menstrual cycle
There are several members of the #hcldr community who are suffering from Long COVID and like ME/CFS patients, they share stories of not being believed by clinicians and receiving no support from the healthcare system. That is slowly changing as more and more research is published, but it remains a struggle for many.
I’m interested in the #hcldr community’s take on this situation. How does the culture in healthcare need to change to where patients are given more of the benefit of the doubt rather than being on the defensive when describing their symptoms? Is there anything that can be done to compress the time between the emergence of new disease evidence and treatment/support for patients who suffer from it?
Fatigue with Healthcare in General
The other form of “fatigue” that I would love to discuss with the #hcldr community is how the public is starting to turn a blind eye and deaf ear to healthcare related news. For three years, healthcare has been the leading news story – sometimes good, but mostly bad. The COVID-19 pandemic put the entire industry under the spotlight in 2019, 2020, and 2021.
That was followed by stories of physician and nurse burnout, rising drug prices, increased labor costs, and vaccine misinformation. Regardless of how you feel about these topics and no matter your political views, I think most people will agree that they are growing tired of hearing about the healthcare system. We all know it’s broken, and we all know there isn’t a quick fix.
I am concerned about this “healthcare attention fatigue”. I feel that fatigue is followed by public apathy, which is something that the healthcare system can ill afford in the next few years. I’m not saying that everyone will suddenly stop caring about healthcare. There will always be patients, clinicians, those that work in the industry, and those who are passionate about change, but I fear that losing the general public will set our industry back for years.
What I am worried about is the decline in the inflow of funding and bright minds into healthcare. When the public grows tired of something, it becomes harder and harder for policymakers, investors, politicians, and academic institutions to drum up interest and support. And right now, healthcare needs more of both!
What can be done about this? Personally, I believe we are past the point where we can prevent the public’s healthcare fatigue, so my thoughts are turning more to ways we can shorten the decline/trough that we find ourselves in. What can be done to re-engage public interest in healthcare in 2 years time versus 5 or 10 years?
HCLDR Tweetchat Tuesday August 15, 2023
Join the HCLDR community on Tuesday August 15th at 8:30pm ET (for your local time click here) where we will be discussing the following topics:
- Q1 What can be done to change the culture in healthcare so that patients are given more of the benefit of the doubt rather than being on the defensive when describing their symptoms (ie: Long COVID, ME/CFS)?
- Q2 Is there anything that can be done to shorten the time it takes to recognize the emergence of a new disease (ie: long COVID) and the creation of treatments + support for patients who suffer from it?
- Q3 Is there an aspect of healthcare that is causing you “attention fatigue”? What headline or story do you automatically skip because you are tired of hearing about it?
- Q4 What can be done to re-engage public interest in healthcare so that we do not experience public apathy for more than 2 or 3 years?
References
“Post COVID-19 condition (Long COVID)”, World Health Organization, 7 December 2022, https://www.who.int/europe/news-room/fact-sheets/item/post-covid-19-condition, accessed 13 August 2023
“Long COVID or Post-COVID Conditions”, Centers for Disease Control and Prevention, 20 July 2023, https://www.cdc.gov/coronavirus/2019-ncov/long-term-effects/index.html, access 13 August 2023
“COVID-19: Long-term effects”, Mayo Clinic, https://www.mayoclinic.org/diseases-conditions/coronavirus/in-depth/coronavirus-long-term-effects/art-20490351, accessed 13 August 2023
Murza, Gabriela. “Compassion Fatigue: Not Just a Challenge for Healthcare Workers”, Utah State University, 13 November 2022, https://extension.usu.edu/mentalhealth/articles/compassion-fatigue-not-just-an-issue-for-healthcare-workers, accessed 13 August 2023
Nunes J, Ventura T, Encarnação R, Pinto PR, Santos I. “What do patients with medically unexplained physical symptoms (MUPS) think? A qualitative study.” Mental Health Family Medicine, June 2013, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3822638/, accessed 13 August 2023
Yong, Ed. “Long COVID Has Forced a Reckoning for One of Medicine’s Most Neglected Diseases”, The Atlantic, 26 September 2022, https://www.theatlantic.com/health/archive/2022/09/mecfs-chronic-fatigue-syndrome-doctors-long-covid/671518/, accessed 13 August 2023
Dusenbery, Maya. “Everybody was telling me there was nothing wrong”, BBC, 23 May 2018, https://www.bbc.com/future/article/20180523-how-gender-bias-affects-your-healthcare, accessed 13 August 2023
Na, Yoojin. “When doctors become long Covid patients – and still aren’t believed”, The Guardian, 13 October 2022, https://www.theguardian.com/society/2022/oct/13/long-covid-patients-not-believed-doctors, accessed 13 August 2023
Lu, Donna. “‘They can’t ignore us any more’: five women on long Covid and medical misogyny”, The Guardian, 13 October 2022, https://www.theguardian.com/society/2022/oct/18/long-covid-women-symptoms-medical-misogyny, accessed 13 August 2023
“Gaslighting in women’s health: No, it’s not just in your head”, Northwell Health, https://www.northwell.edu/katz-institute-for-womens-health/articles/gaslighting-in-womens-health, accessed 13 August 2023
Image Credit
Photo by Ketut Subiyanto: https://www.pexels.com/photo/crop-woman-sleeping-on-laptop-keyboard-4126699/
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