How long COVID sheds light on other mysterious (and lonely) chronic illnesses
The number of new COVID-19 cases is insteep decline in many parts of the U.S., but it's still unknown how many of the people who've had the illness will develop the lingering symptoms oflong COVID-19.
Journalist Meghan O'Rourke, who has been writing about long COVID-19 forThe Atlantic andScientific American, says as the coronavirus pandemic was starting to unfold in the U.S., she was dreading "the prospect of a tremendous wave of chronic illness that would follow."
That's because O'Rourke has firsthand experience living with poorly understood chronic conditions. That has made her sensitive to the struggles of patients living with hard-to-diagnose diseases who often have had their symptoms dismissed by a medical system that can't pin them down.
Long COVID-19 can be similarly hard to characterize. The term encompasses "a wide variety of symptoms that persist long after the initial infection with theSARS-CoV-2 virus," O'Rourke says. "Those symptoms might include chest pain, but they also include so-called vague and subjective symptoms like brain fog or fatigue and roaming pain in the body."
The symptoms of long COVID-19 can be difficult to track on conventional lab tests, in part because they may come and go over time. "And all of this puts pressure on patients who then have to testify to the reality of their own illness," O'Rourke says.
O'Rourke writes about her own experience struggling to get a diagnosis in her new book, The Invisible Kingdom: Reimagining Chronic Illness. For O'Rourke, it all started in the late 1990s, soon after graduating from college. Over the years, her symptoms have included extreme fatigue, brain fog, joint pain, nerve pain, hives, fevers and more. She visited a number of specialists, but more often than not, the doctors attributed what she was experiencing to stress or anxiety.
"The hardest part of being ill was that I didn't feel I had any advocate on my side who even believed fully in the reality of what I was describing to them," she says. "When you're at the edge of medical knowledge, the lack of evidence is treated as evidence that the problem is you and your mind. ... I felt, in a sense, kind of locked away in a room like a 19th-century hysteric."
When you're at the edge of medical knowledge, the lack of evidence is treated as evidence that the problem is you and your mind. ... I felt, in a sense, kind of locked away in a room like a 19th-century hysteric.
Eventually, O'Rourke found a team of doctors whom she likens to "detectives at my side." She was diagnosed withautoimmune thyroiditis, a disease in which the body begins attacking the thyroid, as well as withLyme disease and the genetic conditionEhlers-Danlos syndrome.
For O'Rourke, just getting a diagnosis felt like a triumph. But she acknowledges that many others who suffer from chronic illnesses don't have the same resources to continue seeking treatment.
"It's really clear from research that, in fact, social structures are a major factor in all of this," she says. "I think we're witnessing a calamity that is one not of personal failure, but of societal failure, and one that we really need to reckon with openly."
She spoke with Fresh Air's Terry Gross about her new book, chronic illness and long COVID-19.
On current theories and research about the cause of long COVID-19 and its impact on chronic diseases
When we get sick, our immune system springs into action, trying to get rid of the pathogens that have entered, or even invaded, our body, and tries to push them out. And so one theory of long COVID has been that in some people, that immune response just doesn't turn off for a wide variety of reasons. And so they keep getting damage to their body done by their own immune system, either an autoimmune process or inflammation.
There's also some evidence suggesting that in some parts of the body, fragments of the virus remain or in other parts that the virus itself remains, persisting and triggering ongoing immune action. ...
One of the great mysteries is: Why do some people get a mild case of acute COVID and then end up unable to walk up and down stairs, almost bedridden, subsumed in brain fog? A recent study found that there are some indicators that can tell us a little bit about who might be prone to get long COVID. One such indicator is the level of coronavirus RNA in your blood early on in the infection.
That tells us something about that term "viral load." If you have a high viral load early in your infection, even if your symptoms are mild, you might end up with long COVID. There's also evidence that some of these things called "autoantibodies," which are the antibodies in autoimmune disease ... that instead of attacking those pathogens that are coming into your body, actually end up mistakenly, mysteriously attacking your own tissue instead. Another factor is people who have reactivated Epstein-Barr virus, which many of us have had, but some of us have these episodes of reactivation that can be a sign that you might develop long COVID, and another is the presence of Type 2 diabetes.
On how her experiences with chronic illness made her aware of long COVID-19 early on in the pandemic
What kept me up at night as the coronavirus pandemic came to the United States was not just the wave of acute infections that were clearly coming, but also the prospect of a tremendous wave of chronic illness that would follow them. The research I had been doing already for five years had taught me that in many cases, infections can leave ongoing problems in a subset of patients in ways that we're just beginning in medical science to really research and understand.
Many autoimmune diseases are triggered by viruses, in fact. It's the interaction of a virus or an infection with your own genetics [that] can, in some cases, trigger conditions like lupus or multiple sclerosis, as we just found out in a big study. So I had been talking to virologists and researchers who work on the ways that Epstein-Barr creates all kinds of lung conditions. And reading these early reports of the severity of the SARS-CoV-2 virus just had me worrying that a tremendous number of people were going to get sick and never get better.
So I was kind of lurking on message boards and reading around from pretty much April of 2020 to see what I was seeing and pretty quickly just started seeing these terrifying messages that reminded me so much of my own case where people were saying, "I just never got better. I got sick. I have brain fog. My energy is gone. I'm not the person I once was." I read those with a chill of recognition.
On connecting the 19th-century diagnosis of "hysteria" to today's autoimmune diseases
A lot of women who ended up diagnosed with hysteria had abdominal pain, bouts of fatigue, symptoms that came and went. So doctors originally were trying to kind of figure out what was wrong with these women, and they thought that it was a disorder of the nervous system, which was newly discovered and something there was a lot of excitement around. And when they couldn't find an answer in their tests, they then ended up abandoning that idea. Doctors start to increasingly talk about the ways that hysteria is caused by women's brains, that women are trying to use their brains too much and so therefore they're sick.
The reason I [say] autoimmune diseases and chronic fatigue syndrome, or myalgic encephalomyelitis, and chronic Lyme disease and fibromyalgia ... are today's "hysteria" is that ... in the research I did, you can see medicine is incredibly uncomfortable with areas of uncertainty, diseases it can't measure, diseases it doesn't have a really clear handle on. And so when ... anyone who has one of these diseases goes into a doctor's office and says, "Doctor, I'm experiencing fatigue. I'm experiencing brain fog. It comes and goes," you very quickly get to the question of whether you're anxious. ...
There's this really fascinating phenomenon in current medical science in which patients who live at the edge of medical knowledge, patients whose diseases we have a tough time measuring or we just don't understand yet ... rather than being told, "Hey, you're probably someone who has something I don't understand," such patients are often told: "I think you should see a psychiatrist. I think you are suffering from anxiety. Maybe you have depression."
I want to be really clear: Advances in how we treat mental illness are one of the great triumphs of 20th-century medicine, and it's really important to talk about mental health and chronic illness. But the problem I kept seeing patients talk to me about — and what happened to me — is that doctors often go to the suspicion of anxiety in a way that forecloses further investigation into what might be going on.
On why she found integrative medicine helpful
The reason I found it so helpful was that they take a whole-body approach. They are medically trained doctors, so they're looking at your labs and they're prescribing medication when appropriate, but they were also talking to me about things like my sleeping habits, the level of stress in my life and food sensitivities and trying to really help me figure out what foods made me feel better and what foods made me feel worse, because a lot of the time when I ate, I just felt really sick afterwards — I got terrible headaches. So they worked with me very patiently to try to manage my illness. ...
I think working with integrative doctors helped me feel that I did have a partner in my health care. I'm a very evidence-based person, so one always has questions about some of the aspects of medicine that are less well studied, like supplements and all of that, but in my case, it just became really clear that what these doctors were doing with me, the kinds of lifestyle changes they were advocating, made a big difference in my day-to-day functioning.
On why she believes chronic illness is representative of this time we're living in
One of the things I found in my reporting was that many people who lived with these illnesses, who lived with autoimmunity, thought that the problem was something in themselves ... that they were living an inauthentic life. They hadn't lived the life they should lead. And in this way, they took their illness and they turned it into a metaphor for personal inauthenticity that only they could overcome, which is a huge burden for an individual to live with. ...
These diseases kind of allow both sick people and people who are healthy to see the problem as an individual problem, [and that] allows us to look away from the social factors that are contributing to the rise of these diseases. So everything from food deserts to lack of chemical regulation to probably our chronically fast-paced lifestyles and lack of social safety nets for new mothers and all sorts of things. I really just came to think that these diseases reveal something to us about our culture in a way that made them deeply representative of aspects of the time that we needed to look more deeply at.
Sam Briger and Joel Wolfram produced and edited this interview for broadcast. Bridget Bentz, Molly Seavy-Nesper and Carmel Wroth adapted it for the web.
Copyright 2022 Fresh Air. To see more, visit Fresh Air.
COVID-19 inaonyesha dalili za ugonjwa wa muda mrefu na wa muda mrefu, na idadi ya visa vipya vya COVID-19 inazidi kupungua katika sehemu nyingi za Marekani, lakini bado haijulikani ni wangapi kati ya watu ambao wamekuwa na ugonjwa huo watapata dalili za muda mrefu za COVID-19. Mwandishi wa habari Meghan O'Rourke, ambaye amekuwa akiandika juu ya COVID-19 kwa muda mrefu kwa The Atlantic na Scientific American, anasema wakati janga la coronavirus lilipoanza kuenea nchini Marekani, aliogopa "matarajio ya wimbi kubwa la ugonjwa wa muda mrefu ambao ungekuja kufuata." Hiyo ni kwa sababu O'Rourke ana uzoefu wa kwanza wa kuishi na hali za muda mrefu zisizojulikana vizuri. "Hiyo imemfanya awe na hisia kwa mapambano ya wagonjwa wanaoishi na magonjwa magumu kugundua ambayo mara nyingi yamekuwa na dalili zao zilizofutwa na mfumo wa matibabu ambao hauwezi kuwaweka chini. """ COVID-19 ya muda mrefu inaweza kuwa ngumu sana kuelezea. "Jina hilo linajumuisha ""maambukizo mbalimbali ya dalili ambazo huendelea kwa muda mrefu baada ya kuambukizwa kwa virusi vya SARS-CoV-2,"" anasema O'Rourke." "Hiyo inaweza kuwa maumivu ya kifua, lakini pia ina dalili zisizo dhahiri na za kibinafsi kama vile ukungu wa ubongo au uchovu na maumivu ya kutembea katika mwili. """ Dalili za COVID-19 ndefu zinaweza kuwa ngumu kufuatilia kwenye vipimo vya kawaida vya maabara, kwa sehemu kwa sababu zinaweza kuja na kwenda kwa muda. "Na yote haya huweka shinikizo kwa wagonjwa ambao kisha wanapaswa kushuhudia ukweli wa ugonjwa wao wenyewe", O'Rourke anasema. O'Rourke anaandika juu ya uzoefu wake mwenyewe akipambana kupata utambuzi katika kitabu chake kipya, The Invisible Kingdom: Reimagining Chronic Illness. O'Rourke alianza kazi yake ya uandishi wa habari mnamo mwaka wa 1990, baada ya kuhitimu kutoka chuo kikuu. Kwa miaka mingi, dalili zake zimekuwa uchovu mkubwa, ukungu wa ubongo, maumivu ya viungo, maumivu ya neva, kibofu, homa na zaidi. Alienda kwa madaktari kadhaa, lakini mara nyingi madaktari walimwambia kwamba alikuwa na matatizo ya kihisia. "Kitu kigumu zaidi katika kuwa mgonjwa ni kwamba sikuwa na mtu yeyote wa kuunga mkono upande wangu ambaye aliamini kabisa ukweli wa kile nilichokuwa nikiielezea,"" anasema." "Ukiwa kwenye ukingo wa maarifa ya kitiba, ukosefu wa ushahidi unaheshimiwa kama ushahidi kwamba tatizo ni wewe na akili yako.""" ... "Nilikuwa na hisia ya kuwa nimefungwa ndani ya chumba kama mtu mwenye kichefuchefu wa karne ya 19.""" "Wakati wewe ni katika makali ya maarifa ya matibabu, ukosefu wa ushahidi ni kutibiwa kama ushahidi kwamba tatizo ni wewe na akili yako. """ ... "Nilikuwa na wasiwasi sana, kwa sababu nilikuwa nimefungwa ndani ya chumba cha watu wa karne ya 19 na ""mwenye hasira.""" Hatimaye, O'Rourke alipata kikundi cha madaktari ambao anawafananisha na "wachunguzi kando yangu". Ugonjwa huo unaitwa autoimmune thyroiditis, ambao ni ugonjwa unaosababisha mwili kushambulia tezi ya tezi, na pia ugonjwa wa Lyme na ugonjwa wa Ehlers-Danlos. Kwa O'Rourke, kupata tu utambuzi kulionekana kuwa ushindi. Lakini anatambua kwamba wengine wengi wanaopatwa na magonjwa sugu hawana rasilimali za kuendelea kutafuta matibabu. "Ni wazi sana kutokana na utafiti kwamba, kwa kweli, miundo ya kijamii ni sababu kuu katika yote haya", anasema. """Nafikiri tunashuhudia msiba ambao si wa kushindwa kwa kibinafsi, bali wa kushindwa kwa jamii, na moja ambayo tunahitaji kujihusisha nayo waziwazi." Aliwasiliana na Terry Gross wa Fresh Air kuhusu kitabu chake kipya, ugonjwa wa muda mrefu na COVID-19. "Kuhusu nadharia za sasa na utafiti kuhusu sababu ya COVID-19 ya muda mrefu na athari zake kwa magonjwa ya muda mrefu, ""Wakati tunapokuwa wagonjwa, mfumo wetu wa kinga huanza kuchukua hatua, kujaribu kuondoa vimelea vilivyoingia, au hata kuvamia, mwili wetu, na kujaribu kuwalazimisha nje." Nadharia moja ya COVID ndefu ni kwamba kwa watu wengine, majibu ya kinga hayazuili kwa sababu mbalimbali. Kwa hivyo, mwili wako huendelea kuharibiwa na mfumo wao wa kinga, iwe ni mchakato wa autoimmune au uvimbe. Kuna ushahidi unaoonyesha kwamba sehemu fulani za mwili zina sehemu za virusi au sehemu nyingine zina virusi, na hivyo huendelea kuchochea mfumo wa kinga. "Mmoja wa mafumbo makubwa ni: ""Kwa nini watu wengine kupata kesi ya upole ya COVID kali na kisha kuishia haiwezi kutembea juu na chini ya ngazi, karibu kitandani, subsumed katika ubongo ukungu?""" Utafiti wa hivi karibuni unaonyesha kuwa kuna viashiria kadhaa vinavyoweza kutuambia kidogo kuhusu nani anayeweza kuwa na mwelekeo wa kupata COVID-19. Kiashiria cha kwanza ni kiwango cha RNA ya virusi vya corona katika damu yako mapema katika maambukizi. "Hii inatuambia kitu kuhusu neno ""viral load.""" Ikiwa una mzigo wa virusi vya corona mapema katika maambukizi yako, hata kama dalili zako ni nyepesi, unaweza kuishia na COVID ndefu. "Kuna ushahidi kwamba baadhi ya vitu hivi vinavyoitwa ""autoantibodies,"" ambayo ni antibodies katika ugonjwa wa autoimmune, badala ya kushambulia wale vimelea vinavyoingia mwilini mwako, kwa kweli huishia kwa makosa, kwa njia ya ajabu kushambulia tishu yako mwenyewe." "Watu ambao wameathiriwa na virusi vya Epstein-Barr, ambao wengi wetu tumekuwa nao, lakini wengine wetu wana vipindi hivi vya kuamsha ambayo inaweza kuwa ishara kwamba unaweza kuendeleza COVID ya muda mrefu, na mwingine ni uwepo wa ugonjwa wa kisukari wa aina ya 2 ""alisema." "Kuhusu jinsi uzoefu wake na ugonjwa wa muda mrefu ulivyomfanya awe na ufahamu wa COVID-19 ya muda mrefu mapema katika janga hilo, ""Kiliyoendelea kunifanya usiku wakati janga la coronavirus lilipokuja Marekani haikuwa tu wimbi la maambukizi makali ambayo yalikuwa yakija wazi, lakini pia matarajio ya wimbi kubwa la ugonjwa wa muda mrefu ambao ungekuwa ikifuata." Utafiti ambao nilikuwa nimefanya kwa miaka mitano ulikuwa umenifundisha kwamba katika visa vingi, maambukizo yanaweza kuacha matatizo ya kuendelea katika kikundi kidogo cha wagonjwa kwa njia ambazo tunaanza tu katika sayansi ya matibabu kutafiti na kuelewa. Kwa kweli, magonjwa mengi ya kinga ya mwili husababishwa na virusi. "Uchanganyiko wa virusi na chembe za urithi wa binadamu unaweza kusababisha ugonjwa wa ""Multiple Sclerosis"" (MS) au ""Lupus"" katika baadhi ya kesi." "Kama ilivyoelezwa hapo juu, wataalamu wa virolojia na watafiti wanaofanya kazi katika "" Epstein-Barr "" wanafanya kazi kwa njia ya kawaida ya kugundua ugonjwa wa mapafu." """Kusoma ripoti hizi za mapema za ukali wa virusi vya SARS-CoV-2 kunanifanya niwe na wasiwasi kwamba idadi kubwa ya watu watakuwa wagonjwa na hawatapona kamwe." "Nilikuwa nikitazama kwenye mabango ya ujumbe na kusoma karibu kutoka Aprili 2020 kuona kile nilichokuwa nikiona na haraka sana nilianza kuona ujumbe huu wa kutisha ambao ulinikumbusha sana kesi yangu mwenyewe ambapo watu walikuwa wakisema, ""Sijawahi kuwa bora.""" Nilikuwa mgonjwa. Nina ukungu wa ubongo. Nishati yangu imepotea. Mimi si mtu niliyekuwa zamani". Nilisoma hizo kwa uchungu wa kutambuliwa. "Kuhusu kuunganisha utambuzi wa karne ya 19 wa ""hysteria"" na magonjwa ya kisasa ya autoimmune, wanawake wengi ambao waligunduliwa kuwa na ugonjwa wa hysteria walikuwa na maumivu ya tumbo, mapumziko, dalili ambazo zilikuja na kwenda." "Wanasaikolojia walianza kutafuta sababu za ugonjwa huo na walifikiri ni ""kugonjwa la mfumo wa neva"" ambalo lilikuwa limegunduliwa hivi karibuni na lilikuwa na msisimko mkubwa." Na walipokuwa hawawezi kupata jibu katika vipimo vyao, waliishia kuacha wazo hilo. "Daktari wa kawaida huanza kusema kwamba hysteria ni ""mwanamke ubongo"" na ""wanamke ni kujaribu kutumia ubongo wao sana na hivyo hivyo ni mgonjwa.""" "Utafiti wa ""Ugonjwa wa Kinga ya Mwili"" na ""Ugonjwa wa Uchovu wa Muda mrefu"" na ""Ugonjwa wa Myalgic Encephalomyelitis"" na ""Ugonjwa wa Lyme"" na ""Ugonjwa wa Fibromyalgia"" ni dalili za ugonjwa wa Lyme, na kwa sababu ya utafiti wa utafiti wa utafiti wa utafiti wa ugonjwa wa Lyme, kuna uwezekano mkubwa wa kuathiri afya ya binadamu." "Kama mtu yeyote mwenye ugonjwa huu anaenda kwa daktari na kusema, ""Daktari, nina uchovu.""" Nina tatizo la ukungu wa ubongo. Inakuja na huenda," unapata haraka sana swali la kama wewe ni wasiwasi. ... "Hii ni hali ya ajabu sana katika sayansi ya sasa ya matibabu, ambapo wagonjwa ambao wanaishi kwenye makali ya maarifa ya matibabu, wagonjwa ambao magonjwa yao tuna wakati mgumu kupima au hatuelewi bado, badala ya kuambiwa, ""Hei, labda wewe ni mtu ambaye ana kitu mimi si kuelewa,"" wagonjwa kama hao mara nyingi kuambiwa: ""Nadhani unapaswa kuona daktari wa akili.""" Nadhani unateseka kutokana na wasiwasi. Labda una mshuko wa moyo". """Nataka kuwa wazi: Maendeleo katika jinsi tunavyotibu magonjwa ya akili ni moja ya ushindi mkubwa wa dawa ya karne ya 20, na ni muhimu sana kuzungumza juu ya afya ya akili na magonjwa ya muda mrefu." Lakini tatizo nililokuwa nikiona wagonjwa wakizungumza nami kuhusu - na kile kilichonipata - ni kwamba mara nyingi madaktari huelekea kwa tuhuma za wasiwasi kwa njia ambayo inazuia uchunguzi zaidi juu ya kile kinachoweza kuwa kinaendelea. Kwa nini matibabu ya ujumuishaji ni muhimu? - Kwa nini matibabu ya ujumuishaji ni muhimu? - Kwa nini matibabu ya ujumuishaji ni muhimu? - Kwa nini matibabu ya ujumuishaji ni muhimu? "Wananiambia kuwa ""walikuwa wakinipa dawa wakati wa kulala, kiwango cha mkazo katika maisha yangu, na unyeti wa chakula, na kujaribu kunisaidia kujua ni vyakula gani vilivyonifanya nijisikie vizuri na vyakula gani vilivyonifanya nijisikie vibaya zaidi, kwa sababu mara nyingi nilipokula, nilihisi vibaya sana baada ya kula.""" Kwa hiyo, waliniunga mkono kwa subira ili kujaribu kunisaidia. ... """Nadhani kufanya kazi na madaktari wa kuunganisha kunisaidia kuhisi kwamba nilikuwa na mshirika katika huduma yangu ya afya." Mimi ni mtu wa ushahidi, kwa hivyo mtu huwa na maswali juu ya mambo ya dawa ambayo hayajachunguzwa vizuri, kama vile virutubisho na yote hayo, lakini katika kesi yangu, ilionekana wazi kuwa kile madaktari walikuwa wakifanya na mimi, aina ya mabadiliko ya mtindo wa maisha waliyokuwa wakitetea, ilifanya tofauti kubwa katika utendaji wangu wa kila siku. "Kuhusu kwa nini anaamini ugonjwa wa muda mrefu ni mwakilishi wa wakati huu tunaishi, moja ya mambo niliyoipata katika ripoti yangu ilikuwa kwamba watu wengi ambao waliishi na magonjwa haya, ambao waliishi na autoimmunity, walidhani kuwa tatizo lilikuwa kitu ndani yao wenyewe, kwamba walikuwa wakiishi maisha ya ""si halisi.""" Hawakuwa wameishi maisha waliyopaswa kuishi. Kwa njia hii, walichukua ugonjwa wao na kuugeuza kuwa mfano wa kutokuwa na uhalisi wa kibinafsi ambao wao tu ndio wangeweza kushinda, ambayo ni mzigo mkubwa kwa mtu kuishi nao. ... "Ugonjwa huu unawawezesha wagonjwa na watu wenye afya kuona tatizo hilo kama tatizo la mtu binafsi, na hilo linatuwezesha kuepuka mambo ya kijamii yanayohusika katika kuongezeka kwa magonjwa hayo.""" Kwa hivyo kila kitu kutoka kwa jangwa la chakula hadi ukosefu wa udhibiti wa kemikali, labda kwa mtindo wetu wa maisha wa haraka na ukosefu wa wavu wa usalama wa kijamii kwa mama wapya na vitu vingine vyote. "Nilikuwa na wazo kwamba magonjwa haya yanatufunulia kitu kuhusu utamaduni wetu kwa njia ambayo yalifanya kuwa wawakilishi wa kina wa mambo ya wakati huo ambayo tulihitaji kuangalia kwa kina zaidi. """ Sam Briger na Joel Wolfram walitengeneza na kuhariri mahojiano haya kwa ajili ya matangazo. Bridget Bentz, Molly Seavy-Nesper na Carmel Wroth walibadilisha kwa ajili ya mtandao. Copyright: 2022 Fresh Air Ili kuona zaidi, tembelea Fresh Air.