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COVID-19, NIH: “Citizen Scientists Take on the Challenge of Long-Haul COVID-19”

MORE: long-haul COVID

I had my COVID-19 IgG antibody test about 4.5 months after my 2.5 week April health episode. My working theory has been that my ongoing EBV/Hashimoto’s problem might have been triggered by CV19.

But at this point I am still operating at half my normal energy level (on good days) and wiped out for a few days after a workout if I do not stay within my “energy envelope” (on the rare days I can push a little). That is, dare to ride beyond 90% of my baseline output for just an hour (e.g. below my 10-15 hour pace for double centuries). My Bicycle power meter tells the objective truth: I used to ride at ~195 to 230 watts every day of the week all year. Now I am lucky to hit 170 watts twice a week (but see this update below, where walking 100 yards was infeasible).

Update Oct 31: I had a few low energy but otherwise good days, but Oct 29 got hit with a whole body ache and weakness so severe that I was bedridden all day followed by sleeping from 5 PM to 9 AM straight (16 hours). Some energy returned October 30 and 31 in the sense of 5-6 hours of being able to function at a low level with no exertion. Associated symptoms duing the acute phase include ache over entire body but particularly the back, mild headache, extreme fatigue, loss of appetite (~400 calories in 30 hours yet not hungry). Paradoxically, last night could not sleep until 3 AM and then only with stronger sleep aid (melatonin was ineffective) and yet felt as good upon awaking at 11 AM as previous day.

In other words, I am a “long haul COVID-19” patient. Strikingly, this issue seems to whack a population with nil diabetes and obesity—athletes and those in good physical condition prior.

I can check off most of the symptoms below, for example, shortness of breath (magnesium deals with it well, when it flares), gastrointestinal issues (ah the joy of a solid turd after 5 months, finally), intolerance to physical or mental activity (slowly improving), dull aching hands and feet that keep me awake for hours some nights, arthritic-like pain in two joints of my right hand, fatigue, difficulty concentrating. These symptoms come and go and are slowly improving and some days are not there. But they cycle back regularly and are definitely not gone.

Add in Epstein Barr Virus apparently precipitating Hashimoto’s Thyroiditis as complicating factors which I cannot distinguish nor is there any basis to do so.

My working theories are that some viruses and especially COVID-19 (1) damage mitochondrial energy production, and (2) toggle various genetic and epigenetic switches, which mess up all sorts of physiological systems.

Citizen Scientists Take on the Challenge of Long-Haul COVID-19

Sept 3 2020

Coronaviruses are a frequent cause of the common cold. Most of us bounce back from colds without any lasting health effects. So, you might think that individuals who survive other infectious diseases caused by coronaviruses—including COVID-19—would also return to normal relatively quickly. While that can be the case for some people, others who’ve survived even relatively mild COVID-19 are experiencing health challenges that may last for weeks or even months. In fact, the situation is so common, that some of these folks have banded together and given their condition a name: the COVID “long-haulers”.

Among the many longer-term health problems that have been associated with COVID-19 are shortness of breath, fatigue, cognitive issues, erratic heartbeat, gastrointestinal issues, low-grade fever, intolerance to physical or mental activity, and muscle and joint pains. COVID-19 survivors report that these symptoms flair up unpredictably, often in different combinations, and can be debilitating for days and weeks at a time. Because COVID-19 is such a new disease, little is known about what causes the persistence of symptoms, what is impeding full recovery, or how to help the long-haulers.

[WIND: yes, yes, yes, yes!!!— this is what it is like — no way to know if the day (or night) will be a total clusterfuck. And don't expect allopathic medical doctors to know a damn thing about how to help]

More information is now emerging from the first detailed patient survey of post-COVID syndrome, also known as Long COVID [1]. What’s unique about the survey is that it has been issued by a group of individuals who are struggling with the syndrome themselves. These citizen scientists, who belong to the online Body Politic COVID-19 Support Group , decided to take matters into their own hands. They already had a pretty good grip on what sort of questions to ask, as well as online access to hundreds of long-haulers to whom they could pose the questions.

...

Most long-haulers in the online group had gotten sick in March and April, but weren’t so sick that they needed to be hospitalized. Because COVID-19 testing during those months was often limited to people hospitalized with severe respiratory problems, many long-haulers with mild or moderate COVID-like symptoms weren’t tested. Others were tested relatively late in the course of their illness, which can increase the likelihood of false negatives.  [WIND: that’s me (mid April) and tested 4.5 months after]

...

And the findings so far. Striking to me is the high physical fitness (as a group) of the survey participants, and the term “cyclical”, which is a word I’ve used repeatedly to describe my symptoms.

Report: What Does COVID-19 Recovery Actually Look Like?

..despite most respondents experiencing COVID-19 symptoms for weeks, the majority tested negative once they were able to get a test. Since the respondents who tested positive were tested earlier on in their illness on average than the people who tested negative, this could reinforce the importance of testing symptomatic people early...

The majority of the participants reported being moderately to very physically active (68%) before the onset of symptoms. After the onset of symptoms, a majority of respondents reported being sedentary or mostly sedentary (70.6%).
[WIND: my activity level dropped off 90%]

...

Other common responses describing the nature of symptoms participants included under the “Other” option are summarized as following:

  • Symptoms came back or intensified with physical activity
  • Slow progression of symptoms
  • Most symptoms have subsided but a few symptoms remain (most noted were fatigue and shortness of breath especially with exertion; others mentioned cough, skin rash, and elevated temperatures)
  • General improving trajectory 
  • Intensity of symptoms decreased but psychological burden increased
  • Most severe symptoms were during weeks 2-3
  • Very slow recovery with return of certain symptoms in a cyclical nature
  • Symptoms got better and then worse again
  • Some symptoms were consistent the whole time
  • Symptoms would disappear for a few days then come back

...

Classic medical training leaves most doctors wandering about like blind mole rats:

Below are descriptive responses pulled from the survey on respondents sharing the experiences they had with physicians and medical staff:

“They are confused and reluctant to say, recommend, advocate or prescribe anything. They are totally at a loss.“ 

“I felt the medical team was dismissive. There were a lot of ‘we don’t know.’ Which is understandable, but difficult. One provider suggested that my shortness of breath was due to anxiety. As a person who does high intensity exercising 3x a week to a person who now gets short of breath changing her bedsheets, I found that dismissive.”  

“My doctor was available via messaging, telephone, and telemedicine. She also contracted COVID-19 so she shared her experience with recovery and it helped me stay calm that I was on the right track.” 

Relevant to this point, below are descriptive responses pulled from the survey on respondents sharing thoughts on the medical community focus:

“At this point, most physicians and researchers are so overwhelmed treating the covid19 patients who are at risk of immediate death, that they don’t have the ability to even recognize that people like me exist. Hopefully, with enough documentation, once the number of hospitalized patients decline, doctors will be able to concentrate on those of us who have persistent symptoms.”

“I don’t think the medical community is able to digest all of the information because they are busy treating patients. I believe people who experienced this offer the best answers at this juncture.”

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