Body Politic Slack Group is an amazing site as far as resources, science and research. The format helps in being able to narrow the search and focus on a ‘channel’ that has people with your same symptoms. There are channels with specific conditions, such as Dysautonomia, and more general channels for Resource, Successes, Venting, etc.
Survivor Corp has recorded webinars with prominent doctors and providers, either from COVID clinics or areas of expertise on their site. They are also supporting research. Dr. Fauci himself is interviewed about long term COVID patients.
Long Haul COVID Fighters – Facebook support group started by our local Long Hauler Amy Watson. Currently has groups: Round 1 (Onset of illness PRIOR to 04/01/20) and Round 2 (Onset of illness AFTER 04/01/20)). More subgroups on their way for medical providers and family members according to Amy!
The Pulmonary Wellness Foundation is in NY and has a lot of online education, webinars from
specialists and virtual support groups available. They have Post Covid Bootcamp and Rehab that can be accessed virtually. Noah Greenspan, PT, DPT offer free or reduced cost individual sessions with people who are struggling in their rehabilitation.
Stasis: is a fantastic organization. The founder works with Dr. Putrino, who is a PT and a Neuroscientist who has been in the lead at Mt Sinai in diagnosing Post Covid Dysautonomia and treating at their COVID Clinic. Stasis offers a free initial group to give an orientation to people with Long Term COVID needing support with breathing challenges. In addition, training of breathing patterns is used to influence Heart Rate Variability (HRV) and supports regulation of the vagus nerve and movement into a parasympathetic nervous system state. They are well informed from a nervous system perspective, and if you want individual coaching, they do charge, but a reasonable price, to get more individualized care planning. They help with retraining breathing for those of us with “air hunger”, gasping for air, or the learned short, shallow upper chest breathing that can stick around habitually for months after people are getting adequate oxygen.
Although all of us have different presentation of our systems and which organs they affect the most, the findings show that a majority of our symptoms are traced back to the dysregulation of the Autonomic Nervous System (see picture representation below of all the ways this dysfunction ravages the body….and there are a lot not even displayed there)!
Dysautonomia International: This is a wonderful resource and has talks specific to Post COVID presentation of dysautonomia.
The Dysautonomia Project is a helpful book to buy from the site. The organization offers a reference for a DIY Tilt Table Test, which is the way to measure for Postural Orthostatic Tachycardia Syndrome (POTS) by checking the fluctuation of your heart rate posturally: lying, sitting and standing. This helps us understand that the nervous system is compensating for the low blood volume and the pooling of blood in the lower body, resulting in the sympathetic nervous system activation (Fight and Flight mode or “physical anxiety”) that happens when we stand up, shower, or are waiting in the line at the grocery store. It can feel like panic, but in reality, the nervous system is secreting hormones that are used to alarm our heart that there is more effort needed to push our blood up to our brain.