This Week in Long Covid

Your guide to the latest news and information about chronic Covid-19

Issue 21.3: Info Sharing Moves Into Higher Gear

We learned a few things from various sources this week. A webinar from the Center for Diseases Control and Prevention (CDC), entitled “Treating Long COVID: Clinician Experience with Post-Acute COVID-19 Care,” looked into how clinicians have been caring for patients with Long Covid.

Some highlights:

  • Long Covid can feel like an acute infection that doesn’t want to leave — or bring its own, entirely new health problems.

  • Having had a serious acute case of COVID-19 does not appear to increase one’s chances of developing Long Covid, nor does having recovered from a mild case of COVID-19 lessen one’s chances of getting Long Covid.

  • Most people with Long Covid can expect slow improvement in their symptoms.

  • Treatment is focused on supportive care.

    • For brain fog: no specific treatment, but drugs that boost attention — like those for attention deficit disorder, like Ritalin (methylphenidate) — may be effective in some people;

    • for pins-and-needles sensations (called “small fiber neuropathy”), gabapentin, pregabalin and duloxetine can be helpful;

    • for fatigue, slowly paced easy exercises;

    • for what’s called “dysautonomia,” — malfunctioning of the autonomic nervous system, which governs involuntary responses like heart rate and digestion — hydration, increasing salt intake, use of meditation, and beta blockers are potentially beneficial.

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    Meanwhile, the World Health Organization (WHO) is developing a formal clinical description of Long Covid, a critical step to harnessing the flow of data and helping to develop successful therapies for long-haul symptoms.

    Indeed, the WHO has begun to weigh in on suggested treatments for acute COVID-19, as noted here. Officials so far have not suggested specific treatments for those suffering from Long Covid — although some doctors have suggested antihistamines might be helpful — but it is only a matter of time before they do. Meanwhile, the CDC and the National Institutes of Health (NIH) are both working on Long Covid guidelines, as this report notes.

Our Take:

Long-haulers should take heart in these developments. Even the simple fact that this webinar took place is a positive sign. The more attention Long Covid receives from agencies and governmental bodies, the better.

But don’t expect too much too soon. This isn’t Operation Warp Speed 2.0. We haven’t heard much in the way of urgency from officials about the plight of patients with lingering COVID-19 symptoms.

The state of the art in clinical care will evolve as physicians and other health workers test various treatments and share their experiences, and as larger and larger studies gather and parse data. The NIH, CDC and WHO will help steer and fund these highly important studies and create these much-needed guidelines. They are being worked on as you read this! Meanwhile, the sharing of information like the CDC webinar that started out this week’s newsletter is an important step as practitioners seek to learn more about this emerging disease.

Quotation of the Week:

From the above-mentioned CDC webinar:

‘In terms of the dysautonomia, we've been recommending that everyone increase their hydration to two to three liters of water a day, [and] increasing salt intake, or at the very least maintaining, not avoiding salt [and] electrolytes, and [use] compression stockings. If there's a sympathetic nervous system … component or excessive catecholamines—you're seeing tachycardia, palpitations—[then] meditation and breathwork can be quite helpful in … quieting the sympathetic nervous system down.’

Allison Navis, MD
Assistant Professor, Division Neuro-Infectious Diseases
Icahn School of Medicine at Mount Sinai
Mount Sinai Health System, New York City

News of the Week:

The National Center for Complementary and Integrative Health (NCCIH), a division of the NIH, announced this week that it will be focusing on treatment of Long Covid using complementary approaches, such as stress reduction, cognitive behavioral therapy, botanicals, dietary interventions and probiotics. At the moment the NCCIH is looking to fund promising research.

Datapoint of the Week:

100% of patients in one small pilot study

Medical history is littered with tales of hugely promising drug trials that in small, initial studies seemed world-changing — only to fizzle out in the face of more data.

That said, the medical world was abuzz when this study from Israel announced its results: 29 of 30 patients with moderate to severe COVID-19 were able to leave the hospital within 3-5 days after having received treatment with an experimental therapy. (The last patient was able to leave the hospital later.) The new treatment is an inhaled protein called CD24, which is designed to soothe the extreme immune reaction to COVID-19 dubbed the ‘cytokine storm.’

Tweet of the Week:

From Dr. Nisreen Alwan, a public health researcher at the University of Southampton, in England:

‘Telling people about #LongCovid isn’t scaring them. It’s informing them. It’s real, not uncommon & people have the right to know. Many already do [because] they had it or know someone with it. The amount of gaslighting & dismissal around it is phenomenal & seems to have intensified.’

Homework:

There is now a robust Facebook group that will no doubt continue to grow and increase in importance. The Long Covid Support Group has at this writing nearly 36,000 members who exchange ideas and share experiences. If you are on Facebook, this site could become an important part of your Long Covid journey, and may in the end help with research efforts on the disorder. Our advice: sign up!

For a sobering read, take a look at this post by Ed Rooksby, who blogged about his nine-month bout with Long Covid before dying this month at the age of 46. Rooksby’s final words to the internet carry a stern warning well worth heeding:

‘If I, as a fairly fit, not that old person with no known ‘underlying conditions’ can get it, so can you and so can the people you care about. Don’t be complacent and don’t be an idiot.’

Speaking of harrowing, you might also check out the latest podcast from Dr. Michael Osterholm, one of the leading public health experts in the country, about the dangers of relaxing our guard in the face of what he calls the coming “hurricane” of the new variants of SARS-CoV-2, and why he’s passing up his second dose of vaccine to help others avoid falling ill. (Time: 1 hour)

Extra credit: Take a look at the CDC’s informational page on Long Covid here.