<aside> š Please check out the Politics of Covid page which is where Iāve collected the formative resources for me personally as a newly disabled person with long covid.
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It is really helpful to check out what other people with Long Covid are saying about their journey. Beyond the emotional support that can offer, these groups share important information, discuss symptom management, exchange tips on navigating medical and administrative systems, report on interventions that worked/didnāt work for them, and share (often high quality) sources.
Long Covid - Long Covid Families
Even when folks donāt have health complications due to Covid you can find other chronically ill and disabled people as well as those who care about and show solidarity with us when you find Covid cautious groups. Examples:
<aside> ā ļø In a context of gaslighting by many med professionals and limited access to the best ones, I would advise you to check out support groups for long covid and/or any conditions that you get from covid (e.g., POTS), for patient sourced info. You can check out the Long Covid Science and Symptoms page for more on interventions (e.g., supplements).
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The hard fact of long covid is recognizing that there is no treatment available or ācureā. That does not mean you wonāt find medical professionals who will partner with you to address your symptoms and work toward some recovery.
One way to get care is to find a long covid clinic. These vary in quality and focus. In many cases you will also need to find other specialists who will address various systems that have been impacted by covid. Finding doctorās who donāt dismiss the varied ways Covid damages the body is a challenge and requires patients to share info with one another about āthe good onesā who listen and respond to our concerns and approach covid with curiosity.
In many cases the newest and most promising therapies and medications are not offered to the majority of Long covid patients, but can be sought out and paid for out of pocket. I know less about these but will try to include some resources for those wishing to pursue. (This doesnāt refer to unproven and risky procedures and interventions, but of course use your own judgment about how much research backs up each of these experimental treatments. In a lot of cases even procedures with good foundations are simply not being pursued by clinics and wonāt be offered because insurance will not cover them).
āThe COVID-19 Longhauler Advocacy Project, a patient support group, compiled a crowdsourced list of more than 400 long COVID clinics. The list, which the group did not vet for quality, ranges from rehabilitation or physical therapy practices to comprehensive medical centers with multiple specialists working together.Ā Science NewsĀ used their list plus two other patient-compiled lists, and added the 53 NIH RECOVER research sites that are studying long COVID in adults, confirming that all were active as of early October.ā
<aside> ā ļø Be aware that these clinics range from fairly helpful to unhelpful and to harmful depending on the focus. Steer clear of clinics which rely on the widely debunked GET and CBT combination approach, which is contraindicated for a lot of post viral illnesses including POTs and ME.
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Image of the searchable Long Covid Doctor Map in the link to the right. Ability to both search and add doctors as a way for patients to inform each other of good practictioners
Long Covid Doctor Map
Recommended providers from Body Politic COVID-19 Support Group
There are a series of tests and referrals that you can run with your primary. Opposite is a chart on LC aimed toward primary care providers, which you may want to share with your doctor.
<aside> ā ļø Do Not let your doctor dismiss your concerns! Many PCPs refuse to learn about long covid at a pace that matches the current need, and many others dismiss patients with post-viral conditions. Share resources and be specific with your requests and if they refuse to listen, find a new provider!
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Covid damages many systems in the body, so running some basic tests post Covid infection can be beneficial, especially because some of the harm done by Covid elevates your risk of a major health event like a stroke or heart attack in the year following infection.
How to find Covid conscious doctors?
āNEW Practice Pointer and #BMJInfographic on treating patients with long covid in primary careā from BMJ
Iām running tests and they arenāt finding anything, what is going on???
Dysautonomia and ME are two common diagnoses resulting from Long Covid (source) . Often, when practitioners run tests they will find no abnormalities bc they arenāt running the right tests. If a provider recognizes dysautonomia or ME as a possible diagnosis, they will still run various tests to ensure they arenāt overlooking a heart or lung problem with obvious anatomical abnormalities (like heart disease or lung damage) which often share symptoms but have very different treatment modes.
For more on tests, biological mechanisms, and treatments explore Long Covid - the Symptoms and the Science