#38: Treatments, Subtypes, Leakiness... Plus fighting the good fight.

Hello Long Hauler fam,

☀️ Here are 3 research findings, 2 thoughts, and 1 question to consider this week (plus 🐶 pic). It’s been a while, so there’s plenty in this edition!

2 IDEAS FROM RESEARCH

I.

This Medscape article does a good job of summarising emerging treatments for Long Covid and POTS.

In brief:

• Vagus Nerve Stimulation: Used for symptoms like fatigue, brain fog, and depression with reported positive results.

• Beta-Blockers: Employed to manage rapid heart rate changes associated with POTS.

• Low-Dose Naltrexone: Found to improve symptoms of extreme fatigue in long COVID patients.

• HIV Antivirals: Clinical trials are repurposing Truvada and maraviroc to target latent SARS-CoV-2 virus.

• SARS-CoV-2 Monoclonal Antibodies: Investigated for their potential to target viral reservoirs causing persistent symptoms.

In addition, two tools for diagnosis LC:

• Catecholamine Testing: Diagnoses long COVID by indicating high levels of this neurotransmitter.

• Serotonin Level Monitoring: Assists in identifying long COVID through lower serotonin levels

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​II.

Interesting new research from the UK published in Nature Immunology, with a writeup here. Here are some highlights (longer because they’re interesting!):

Immune system:

They found that, relative to patients who had fully recovered, those with long COVID showed a pattern of immune system activation indicating inflammation of myeloid cells and activation of a family of immune system proteins called the complement system.

Myeloid cells are formed in the bone marrow and produce various types of white blood cells that circulate in the blood and migrate into organs and tissues where they respond to damage and infection. The complement system consists of a cascade of linked proteins that are activated in response to infection or tissue damage. Notably, overactivation of the complement system is known to be associated with many autoimmune and inflammatory conditions.

Subtypes:

Overall, there were five overlapping subtypes of long COVID with different immune signatures, despite some commonalities, namely: fatigue; cognitive impairment; anxiety and depression; cardiorespiratory; and gastrointestinal.

The researchers stress, however, that these groups are not mutually exclusive, and people can fall between groups depending on their symptoms.

…these long COVID subtypes seem to represent clear biological mechanisms of disease and highlight that different symptoms may have different underlying causes. The researchers suggest this could be useful in designing clinical trials, especially for treatments that target immune responses and inflammation [the article mentions some drug possibilities].

“We hope that our work opens the way to the development of specific tests and treatments for the various types of long COVID and believe that a ‘one size fits all’ approach to treatment may not work.”

Note: the study only included people who had severe SARS-CoV-2 infections and who were hospitalised as a result, so may not generalise.

Source for original article here

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III.

Important paper in Nature Neuroscience, discussed by ScienceDaily, about how the blood brain barrier relates to brain fog.

FYI, the blood brain barrier protects the brain by stopping harmful substances in the bloodstream from entering the brain (think inflammatories) while allowing the good stuff to pass through.

The discovery was that the blood vessels in the brains of pwLC were ‘leaky’, and the more leaky, the more brain fog.

Dr Chris Greene, Postdoctoral research fellow and study author:

For the first time, we have been able to show that leaky blood vessels in the human brain, in tandem with a hyperactive immune system may be the key drivers of brain fog associated with Long COVID.

Our findings have now set the stage for further studies examining the molecular events that lead to post-viral fatigue and brain fog. Without doubt, similar mechanisms are at play across many disparate types of viral infection and we are now tantalisingly close to understanding how and why they cause neurological dysfunction in patients.

1 THOUGHT

I.

My awesome local charity MECFS Canterbury is featured in this article about lack of support for long Covid in New Zealand. Tbh it made me cry! I know the battle goes on relentlessly for so many people. That’s the reality of it. If you’re a Kiwi and know someone who might benefit from understanding this better, please consider sharing the article with them.

And shout out to the great work MECFS Canterbury does, fuelled by donations, volunteers and grants.

Source: The Press

II.
I’m a fan of tai chi and qigong, which are very gentle meditative movement practices that always make me feel better afterwards. Think waving your arms very slowly.

I know that for some long haulers, even standing and moving your arms around can trigger PEM, so here is a good sitting position one to try, which involves (mostly) bumping your hands together. Once I got past the inherent silliness of some of the movements, I found it quite fun, and relaxing (good for stimulating the back muscles?).

Source: ​Qigong Meditation

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III.

This article has some general advice about rest and relaxation, but most usefully, some pictures of different positions to try lying in (scroll down the article). These aren’t revolutionary ideas, but sometimes it’s the obvious that we forget about, that can improve life a bit.

Source: east coast community healthcare

1 QUESTION FOR YOU

Do you have any fav youtube videos for simple movements that don’t trigger PEM? (please mention your level of severity too, so others can evaluate if it’s right for them)

+ Another reader’s tip for making computer use less tiring:

TheBitterestSalt:

I've been using the dictation function in Microsoft Word to take notes for school when I'm too shaky to type, and it's been surprisingly accurate! It's nice knowing i can ramble out my thoughts (and lie down as well!) and can fix it up later when I feel better

And finally, the puppy p.s. Frisky Whisky!

[alt: Whisky the cream toy poodle leaps around a couple of other pooches on the beach]

Wishing you a peaceful week,

Tom and Whisky

☺️

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