{"id":361894,"date":"2025-08-21T11:17:16","date_gmt":"2025-08-21T11:17:16","guid":{"rendered":"https:\/\/www.europesays.com\/uk\/361894\/"},"modified":"2025-08-21T11:17:16","modified_gmt":"2025-08-21T11:17:16","slug":"where-is-the-medical-home-for-postinfectious-illness","status":"publish","type":"post","link":"https:\/\/www.europesays.com\/uk\/361894\/","title":{"rendered":"Where Is the Medical Home for Postinfectious Illness?"},"content":{"rendered":"<p>Brittany L. Adler, MD, was a rheumatology fellow in 2017 when she evaluated a young woman with severe fatigue, dizziness, gastrointestinal symptoms, and a bluish discoloration in her feet.<\/p>\n<p>Systemic sclerosis was suspected, but the patient didn\u2019t meet all the diagnostic criteria. Adler was stumped until she happened to hear a preceptor mention <a href=\"https:\/\/www.medscape.com\/viewarticle\/995674\" target=\"_blank\" rel=\"noopener\">postural orthostatic tachycardia syndrome (POTS)<\/a>, a condition she hadn\u2019t recalled ever learning about in any of her medical training. \u201cWe ordered a tilt table test, which was positive. Her treatment path shifted dramatically. And I was left wondering: How many of these patients had I already missed?\u201d<\/p>\n<p><img decoding=\"async\" class=\"ck-editor__editable ck-editor__nested-editable\" src=\"https:\/\/www.europesays.com\/uk\/wp-content\/uploads\/2025\/08\/ht-250819-brittany-adler-120x156.jpg\" alt=\"photo of  Brittany Adler\" height=\"156\" width=\"120\" data-asset-description=\" Brittany Adler\" data-asset-id=\"d1a5e997-8b21-427d-b6dc-8ff0657b927a\" data-asset-title=\"ht-250819-brittany-adler-120x156.jpg\" data-creditline=\"Division of Rheumatology, Johns Hopkins Medicine\" data-source=\"N\/A\" data-keywords=\"\" data-path=\"\/vim\/live\/professional_assets\/medscape\/images\/thumbnail_library\/ht-250819-brittany-adler-120x156.jpg\" data-asset-url=\"https:\/\/www.europesays.com\/uk\/wp-content\/uploads\/2025\/08\/ht-250819-brittany-adler-120x156.jpg\" data-height=\"156\" data-width=\"120\" role=\"textbox\" tabindex=\"-1\" contenteditable=\"true\" loading=\"lazy\"\/>Brittany L. Adler, MD<\/p>\n<p>Probably quite a few, she now knows. \u201cAfter seeing this patient, it became impossible to unsee it. I began recognizing POTS more frequently, especially in hypermobile young women. Their clinical histories followed a distinct, consistent pattern marked by orthostatic intolerance, widespread pain, fatigue, and gastrointestinal symptoms. Over time, this spectrum of illness became as real and recognizable to me as systemic lupus erythematosus or myositis,\u201d Adler <a href=\"https:\/\/www.thelancet.com\/journals\/lanrhe\/article\/PIIS2665-9913(25)00190-0\/abstract\" rel=\"nofollow noopener\" target=\"_blank\">wrote in an essay<\/a> published on July 23, 2025, in The Lancet Rheumatology.<\/p>\n<p>Adler now works at the Johns Hopkins POTS Clinic in Baltimore, exclusively caring for these patients. The COVID-19 pandemic brought a surge of more <a href=\"https:\/\/www.medscape.com\/viewarticle\/948174\" target=\"_blank\" rel=\"noopener\">patients with POTS and infection-associated chronic illness<\/a>. \u201cWhat had once felt like a rare or niche diagnosis now seemed to be everywhere, impossible to ignore,\u201d she wrote.<\/p>\n<p>In her essay, Adler urged her fellow rheumatologists to take on these patients, at least to become more familiar with the entirety of their illness burden and treat their symptoms as much as possible. She also called for rheumatology training programs to broaden their scope to include associated conditions such as POTS and <a href=\"https:\/\/www.cdc.gov\/me-cfs\/hcp\/diagnosis\/iom-2015-diagnostic-criteria-1.html\" rel=\"nofollow noopener\" target=\"_blank\">myalgic encephalomyelitis\/chronic fatigue syndrome (ME\/CFS)<\/a>.<\/p>\n<p>\u201cRheumatologists are uniquely trained to manage complex, multisystem illnesses. Yet the field has largely remained at the margins of infection-associated chronic illness and autonomic dysfunction, despite their clear overlap with autoimmune disease. Many other specialties have also declined ownership, leaving patients to fend for themselves,\u201d Adler wrote.<\/p>\n<p>But Adler told Medscape Medical News that she also doesn\u2019t see rheumatology as the only specialty in this arena. \u201cThere is an enormous need for multidisciplinary clinics to manage these patients, as they experience symptoms across multiple organ systems. Right now, there is no model for coordinated care, so many patients end up seeing a different doctor each day and are in near-constant contact with the medical system.\u201d<\/p>\n<p><strong>Many Diagnoses, Many Doctors, Few Answers Yet\u00a0<\/strong><\/p>\n<p>Indeed, people with postinfectious chronic illness often receive multiple diagnoses from different clinicians, but there is no dedicated space for them in the current healthcare system, and as a result, their care is often suboptimal. Their diagnoses vary in number and degree and may include ME\/CFS, dysautonomia\/POTS, Ehlers-Danlos syndrome, fibromyalgia, mast cell activation syndrome, and long COVID, among many others.<\/p>\n<p>Those with ME\/CFS specifically experience extreme fatigue, <a href=\"https:\/\/www.medscape.com\/viewarticle\/post-exertional-malaise-fatiguing-diseases-what-know-avoid-2024a1000ot1\" target=\"_blank\" rel=\"noopener\">postexertional malaise (PEM)<\/a>, orthostatic intolerance, and cognitive problems (aka \u201cbrain fog\u201d).<\/p>\n<p>Many can trace these symptoms to a specific infection such as SARS-CoV-2 or Epstein-Barr virus or to a bacterial infection such as Lyme disease. But for others, the infectious trigger may not have been confirmed or recognized at the time. They were healthy and active, then they weren\u2019t. Some are severely disabled and can\u2019t work, go to school, or even do simple tasks without feeling depleted and even sicker afterward.<\/p>\n<p>The terminology is still being worked out. The umbrella terms \u201cinfection-associated chronic conditions (IACCs)\u201d and \u201cinfection-associated chronic illnesses (IACIs)\u201d have been used, along with the more specific \u201cpostacute infection syndromes (PAISs).\u201d The terms PAIS and IACI are \u201cincreasingly used by authoritative organizations and very senior scientists,\u201d Anthony L. Komaroff, MD, Simcox-Clifford-Higby Distinguished Professor of Medicine at Harvard Medical School and senior physician at Brigham and Women\u2019s Hospital, both in Boston, told Medscape Medical News.<\/p>\n<p><img decoding=\"async\" class=\"ck-editor__editable ck-editor__nested-editable\" src=\"https:\/\/www.europesays.com\/uk\/wp-content\/uploads\/2025\/08\/ht_210901_anthony_komaroff_120x156.jpg\" alt=\"photo of Anthony Komaroff\" height=\"156\" width=\"120\" data-asset-description=\"Anthony Komaroff\" data-asset-id=\"0b8d8cfc-eb55-49c0-84db-0c3e591eabd4\" data-asset-title=\"ht_210901_anthony_komaroff_120x156.jpg\" data-creditline=\"\" data-source=\"Anthony Komaroff\" data-keywords=\"\" data-path=\"\/vim\/live\/professional_assets\/medscape\/images\/thumbnail_library\/ht_210901_anthony_komaroff_120x156.jpg\" data-asset-url=\"https:\/\/www.europesays.com\/uk\/wp-content\/uploads\/2025\/08\/ht_210901_anthony_komaroff_120x156.jpg\" data-height=\"156\" data-width=\"120\" role=\"textbox\" tabindex=\"-1\" contenteditable=\"true\" loading=\"lazy\"\/>Anthony L. Komaroff, MD<\/p>\n<p>Komaroff, who has been researching and publishing about ME\/CFS since the 1980s, also told Medscape Medical News, \u201cAs for the issue of which medical specialties will \u2018own\u2019 PAIS, I think that\u2019s less important than having enough doctors knowledgeable about these illnesses to meet the need in every community, regardless of what subspecialty training they have. I think that will happen as the science becomes increasingly robust.\u201d<\/p>\n<p>He recently <a href=\"https:\/\/www.pnas.org\/doi\/10.1073\/pnas.2513877122\" rel=\"nofollow noopener\" target=\"_blank\">wrote a commentary<\/a> on the topic for the Proceedings of the National Academy of Sciences, accompanying a <a href=\"https:\/\/www.pnas.org\/doi\/10.1073\/pnas.2426874122\" rel=\"nofollow noopener\" target=\"_blank\">paper identifying patient-reported treatment outcomes<\/a> in ME\/CFS and long COVID.<\/p>\n<p><strong>What All Doctors Can and Should Do, at a Minimum<\/strong><\/p>\n<p>Rheumatologist Brayden Yellman, MD, medical director of the <a href=\"https:\/\/batemanhornecenter.org\/\" rel=\"nofollow noopener\" target=\"_blank\">Bateman Horne Center<\/a>, Salt Lake City, told Medscape Medical News that he \u201cagrees wholeheartedly\u201d with Adler\u2019s essay. \u201cI do, ultimately, think that rheumatologists would be as adept as any clinicians at helping manage the more complicated presentations of those with IACCs and their related comorbid conditions.\u201d<\/p>\n<p><img decoding=\"async\" class=\"ck-editor__editable ck-editor__nested-editable\" src=\"https:\/\/www.europesays.com\/uk\/wp-content\/uploads\/2025\/08\/ht-250819-brayden-yellman-120x156.jpg\" alt=\"photo of Brayden Yellman\" height=\"156\" width=\"120\" data-asset-description=\"Brayden Yellman\" data-asset-id=\"badabe8d-18e4-4d45-96ea-81a2c67b51ba\" data-asset-title=\"ht-250819-brayden-yellman-120x156.jpg\" data-creditline=\"Bateman Horne Center\" data-source=\"N\/A\" data-keywords=\"\" data-path=\"\/vim\/live\/professional_assets\/medscape\/images\/thumbnail_library\/ht-250819-brayden-yellman-120x156.jpg\" data-asset-url=\"https:\/\/www.europesays.com\/uk\/wp-content\/uploads\/2025\/08\/ht-250819-brayden-yellman-120x156.jpg\" data-height=\"156\" data-width=\"120\" role=\"textbox\" tabindex=\"-1\" contenteditable=\"true\" loading=\"lazy\"\/>Brayden Yellman, MD<\/p>\n<p>But, Yellman noted, several barriers are keeping rheumatologists from stepping up to the plate, including lack of a serologic biomarker or distinct imaging findings, lack of familiarity with the entire range of possible treatment approaches, and a shortage of rheumatologists to manage even patients with well-defined rheumatologic conditions.<\/p>\n<p>In addition, Yellman noted, \u201cWe do not practice in a system that values or allows providers the time and resources necessary for good care of complex multisystem illness to begin with nor can this already taxed and flawed system take on more.\u201d<\/p>\n<p>Nonetheless, Yellman said, \u201cWith the extensive prevalence of these illnesses and the need for immediate action for the millions suffering from them, I concurrently believe that we need to demand better clinical care and support from all providers within the healthcare system, and particularly, those in primary care. At a very minimum, we need to be making the correct diagnoses in those with IACCs instead of telling them they \u2018don\u2019t have anything\u2019 or that they have \u2018functional neurological disorder.\u2019 This type of dismissal can no longer be tolerated.\u201d<\/p>\n<p>Furthermore, \u201cwe need to be identifying PEM and helping to teach patients how to pace to avoid PEM. We need to be supporting patients\u2019 needs for work and school accommodations or medical leaves of absence to help promote symptomatic improvement and to allow people to emerge from a cyclical push-crash cycle of PEM. We need to be, at a minimum, <a href=\"https:\/\/batemanhornecenter.org\/wp-content\/uploads\/filebase\/providers\/mecfs\/10-Minute-NASA-Lean-Test-Clinician-Instructions-06_12_2022.pdf\" rel=\"nofollow noopener\" target=\"_blank\">diagnosing dysautonomia<\/a> and providing at least some basic support to promote improved vascular regulation. The entire healthcare system, and its providers, need to step up to this challenge.\u201d<\/p>\n<p><strong>Are Long COVID Clinics a Model?<\/strong><\/p>\n<p>The multidisciplinary long COVID clinics that were established soon after that phenomenon emerged from the COVID-19 pandemic could serve as a model for treating all patients with chronic postinfectious illness, if there were sufficient support for them. However, many have either scaled back or closed entirely.<\/p>\n<p>In Connecticut, for example, there had been at least 10 long COVID clinics, but now there is just one, the Yale New Haven Health Systems Long COVID Consultation Clinic. Medical director Lisa Sanders, MD, is the only MD provider, and she only works there part-time. \u201cAnd we\u2019re booked out until March,\u201d she told Medscape Medical News.<\/p>\n<p><img decoding=\"async\" class=\"ck-editor__editable ck-editor__nested-editable\" src=\"https:\/\/www.europesays.com\/uk\/wp-content\/uploads\/2025\/08\/ht-250819-lisa-sanders-120x156.jpg\" alt=\"photo of  Lisa Sanders\" height=\"156\" width=\"120\" data-asset-description=\" Lisa Sanders\" data-asset-id=\"df2a7530-a703-4350-aff1-d6165d109327\" data-asset-title=\"ht-250819-lisa-sanders-120x156.jpg\" data-creditline=\"Yale School of Medicine\" data-source=\"N\/A\" data-keywords=\"\" data-path=\"\/vim\/live\/professional_assets\/medscape\/images\/thumbnail_library\/ht-250819-lisa-sanders-120x156.jpg\" data-asset-url=\"https:\/\/www.europesays.com\/uk\/wp-content\/uploads\/2025\/08\/ht-250819-lisa-sanders-120x156.jpg\" data-height=\"156\" data-width=\"120\" role=\"textbox\" tabindex=\"-1\" contenteditable=\"true\" loading=\"lazy\"\/>Lisa Sanders, MD<\/p>\n<p>Sanders does refer some patients with long COVID to specialists within the Yale system, most commonly cardiology or neurology, because \u201cthe most distressing symptom for most of these patients is not the shortness of breath, which gets better, and not the tachycardia, which can be managed, but the brain fog and the changes in cognition\u2026which is probably the most common reason that people can\u2019t go back to work.\u201d<\/p>\n<p>When she has more time, Sanders said she\u2019d like to change the identity of the clinic from addressing just long COVID to encompassing other postinfectious conditions, given that \u201cthere are other illnesses\u2026\u2018long COVID\u2019 existed before COVID.\u201d<\/p>\n<p>Sanders, perhaps best known for her <a href=\"https:\/\/www.nytimes.com\/column\/diagnosis\" rel=\"nofollow noopener\" target=\"_blank\">The New York Times columns<\/a>, said she hopes that more clinicians take an interest in these patients, \u201cbut what I really hope is that we get some better answers than what we have so far\u2026. We need better research. I mean, we can\u2019t even agree on what defines long COVID or a postinfectious syndrome\u2026really basic stuff.\u201d<\/p>\n<p>Adler, too, called for more research. \u201cOne development that I think is going to be transformative, and I don\u2019t think we\u2019re far off from this, is <a href=\"https:\/\/www.medscape.com\/s\/viewarticle\/uk-scientists-find-genes-linked-chronic-fatigue-syndrome-2025a1000kxf\" target=\"_blank\" rel=\"noopener\">discovering a biomarker<\/a>. As soon as there\u2019s a <a href=\"https:\/\/www.medscape.com\/viewarticle\/long-covid-gene-variants-step-toward-diagnostic-test-2025a1000jh2\" target=\"_blank\" rel=\"noopener\">blood test that can diagnose this syndrome<\/a>, it will become much more tangible and accessible to doctors. I\u2019m hoping the field will receive more research funding to make this possible.\u201d<\/p>\n<p>Adler and Yellman reported having no disclosures. Sanders reported receiving payments from\u00a0The New York Times. Komaroff\u2019s work was funded by a subcontract to Brigham and Women\u2019s Hospital from the US Public Health Service.<\/p>\n<p>Miriam E. Tucker is a freelance journalist based in the Washington, DC, area. She is a regular contributor to Medscape Medical News, with other work appearing in\u00a0The Washington Post, NPR\u2019s\u00a0Shots blog, and Diatribe. She is on X at @MiriamETucker and on BlueSky at @miriametucker.bsky.social.<\/p>\n","protected":false},"excerpt":{"rendered":"Brittany L. Adler, MD, was a rheumatology fellow in 2017 when she evaluated a young woman with severe&hellip;\n","protected":false},"author":2,"featured_media":361895,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[4316],"tags":[1493,35582,66517,66516,127067,110389,66520,127066,503,46393,1033,127060,127069,111508,15991,5587,105,4348,127071,127070,8119,44670,502,66518,66519,504,127068,127061,127064,127065,127063,127062,46267,16,15],"class_list":{"0":"post-361894","1":"post","2":"type-post","3":"status-publish","4":"format-standard","5":"has-post-thumbnail","7":"category-healthcare","8":"tag-bacteria","9":"tag-bacterial-infection","10":"tag-biological-marker","11":"tag-biomarker","12":"tag-cfid","13":"tag-cfs","14":"tag-chronic-disease","15":"tag-chronic-fatigue-immune-dysfunction","16":"tag-chronic-fatigue-syndrome","17":"tag-chronic-illness","18":"tag-cognition","19":"tag-covid-19-coronavirus-2019-novel-coronavirus-2019-ncov-wuhan-coronavirus-corona-virus-covid19-novel-coronavirus-sars-cov-2","20":"tag-ehlers-danlos-syndrome","21":"tag-epstein-barr-virus","22":"tag-fatigue","23":"tag-fibromyalgia","24":"tag-health","25":"tag-healthcare","26":"tag-hhv-4","27":"tag-human-herpesvirus-4","28":"tag-lyme-disease","29":"tag-mbda","30":"tag-me-cfs","31":"tag-multi-biomarker-disease-activity","32":"tag-multibiomarker-disease-activity","33":"tag-myalgic-encephalomyelitis","34":"tag-orthostatic-intolerance","35":"tag-post-acute-sequelae-of-sars-cov-2-infection-post-acute-sequelae-of-sars-cov-2-infection-pasc-long-covid","36":"tag-post-viral-fatigue-syndrome","37":"tag-pvfs","38":"tag-seid","39":"tag-systemic-exertion-intolerance-disease","40":"tag-tachycardia","41":"tag-uk","42":"tag-united-kingdom"},"share_on_mastodon":{"url":"","error":"Validation failed: Text character limit of 500 exceeded"},"_links":{"self":[{"href":"https:\/\/www.europesays.com\/uk\/wp-json\/wp\/v2\/posts\/361894","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.europesays.com\/uk\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.europesays.com\/uk\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.europesays.com\/uk\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.europesays.com\/uk\/wp-json\/wp\/v2\/comments?post=361894"}],"version-history":[{"count":0,"href":"https:\/\/www.europesays.com\/uk\/wp-json\/wp\/v2\/posts\/361894\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.europesays.com\/uk\/wp-json\/wp\/v2\/media\/361895"}],"wp:attachment":[{"href":"https:\/\/www.europesays.com\/uk\/wp-json\/wp\/v2\/media?parent=361894"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.europesays.com\/uk\/wp-json\/wp\/v2\/categories?post=361894"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.europesays.com\/uk\/wp-json\/wp\/v2\/tags?post=361894"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}