The Long COVID Survival Guide
How to Take Care of Yourself and What Comes Next
The first patient-to-patient guide for people living with Long COVID—with expert advice on getting diagnosed, dealing with symptoms, accessing resources and accommodations, and more.
I'm copying a public post below from an interesting Assistant Professor of Philosophy and Data Science at UNCC (not a medical doctor or psychologist).
Everything he is discussing is TENTATIVE but very interesting. I'm sending this out now because there is so little in the popular press about what can actually be done to help people with brain fog and other Long COVID symptoms. The research is still very early, and of course medical professionals should be consulted.
The article link from Nature Magazine describes brain damage caused by SARS-CoV-2 related to cell death and especially to synapse loss, leading to cognitive impairment.
The study in Bioelectric Medicine is extremely small, yet shows the potential of nicotine patches in the treatment of Long COVID symptoms including brain fog. (Another paper from the same publication also goes into why nicotine might help with Long COVID: https://bioelecmed.biomedcentral.com/articles/10.1186/s42234-023-00104-7 )
He then points to a study on the NIH PubMed site reporting the encouragement of synapse growth from psilocybin.
A comment in the discussion thread also links to a British Medical Journal article on Metformin improving Long COVID symptoms ( https://www.bmj.com/content/381/bmj.p1306 )
There's further speculation in the discussion thread that other psychoactive substances might be helpful. There are perhaps AI bots in the discussion thread discussing psilocybin microdosing, so be aware of that and maybe not get excited that so many "people" are discussing it.
From: <https://ourislandgeorgia.net/@Wolven/111412769611401616>
Dr. Damien P. Williams
@Wolven
…HUH. Long-COVID destroys synapses, and is a major contributor to the brainfog. <https://www.nature.com/articles/s41380-022-01786-2>
This goes some way to shining a light on the promising results they've been seeing in testing nicotine patches as treatment for long covid: nicotine effects synapse formation and receptivity (tests using patches because they don't habit-form and aren't, y'know, SMOKE [<https://bioelecmed.biomedcentral.com/articles/10.1186/s42234-023-00104-7>]).
But what's super interesting to me is that another thing that's also been shown to encourage synapse growth? Is psilocybin.
<https://pubmed.ncbi.nlm.nih.gov/34228959/>
From: <https://ourislandgeorgia.net/@Wolven/111412769611401616>
~~~
#psychology #counseling #socialwork #psychotherapy #research @[email protected] @[email protected] @[email protected] @[email protected] #Vaccines #COVID #longcovid #science #medicine #hospital #brainfog #sarscov2 #metformin #nicotine #nicotinepatch #psilocybin
Disclaimer: The data in this column come from either mainstream news
media sources or scientific research published in peer-reviewed
journals (each category can be determined by following the links in
the reference section). This column's author acknowledges the cultural
bias of the world scientific community in its belief that the
scientific method is the most viable available alternative for
assessing COVID-19 and its effects in an objective manner through a
structured process of observable and repeatable hypothesis testing.
Summary: Hospitalizations from COVID-19 rose for an eighth straight
week to 18,871 people/week see "COVID Hospitalizations Rise for Eighth
Week in a Row" under Virology & Epidemiology).
Moderna says its upcoming COVID-19 vaccine should work against the
BA.2.86 variant that has caused worry about a possible surge in cases
(see "New Moderna Vaccine to Work Against Recent COVID Variant" under
Vaccomes, Treatment & Testing).
COVID vaccines will have a new formulation this year, according to a
decision announced today by the US Food and Drug Administration that
will focus efforts on circulating variants. The move pushes last
year's bivalent vaccines out of circulation because they will no
longer be authorized for use in the United States (see "New COVID
Vaccines Force Bivalents Out" under Policy).
The CDC is not specifically saying whether long COVID patients should
get the new COVID boosters, flu shots, or RSV vaccines, and the Food
and Drug Administration (FDA) referred similar questions to the CDC
(see "Should Long COVID Patients Get the Flu, RSV, and New Booster
Shots?" under Policy).
Research continues to show that early intervention with antibiotics
reduces the risk of fatality from COID-19 (see "Early Empiric
Antibiotic Use in Patients Hospitalized With COVID-19" under Vaccines,
Treatment & Testing).
In ICU-patients ≥70 years old, COVID-19 is associated with greater
mortality rates than bacterial or viral pneumonia (see "Increased
Mortality in ICU Patients ≥70 Years Old With COVID-19 Compared to
Patients With Other Pneumonias" under COVID Complications).
After the US Food and Drug Administration authorized new monovalent
COVID vaccines, the CDC recommended the new booster vaccinations for
everyone (see "Universal Monovalent COVID Vaccines Backed by CDC"
under Policy).
About 103 million Americans had COVID-19, and about a third of those
led to long COVID. New data indicate that some cases of long COVID-19
might be going unidentified because the patient's initial infection
wasn't detected (see "Some People With Long COVID Tested Negative for
COVID-19" under COVID Complications).
Although SARS-CoV-2 infection among young children typically results
in mild infection, it can result in serious illness, including
multisystem inflammatory syndrome in children, long-term sequalae, and
death. mRNA COVID-19 vaccination provides protection against
symptomatic SARS-CoV-2 infection for at least 4 months after
vaccination among children aged 3–5 years (see "Safety Monitoring of
mRNA COVID-19 Vaccine Third Doses Among Children Aged 6 Months–5
Years" under Vaccines, Treatment & Testing).
A new meta-analysis has shown that SGLT2 inhibitors do not lead to
lower 28-day all-cause mortality compared with usual care or placebo
in patients hospitalized with COVID-19 (see "SGLT2-inhibitors: No
Benefit in Hospitalized COVID-19" under Vaccines, Treatment &
Testing).
The COVID-19 booster vaccine typically causes transient, clinically
insignificant elevations in glucose levels in people with type 1
diabetes (see "COVID Booster May Transiently Raise Glucose Levels in
T1D" under Vaccines, Treatment & Testing).
"Cost May Lead Many to Skip COVID Testing: Why That's a Problem" (see
under Media News).
The May 11, 2023 termination of the PHE has made it increasingly
difficult to accurately track COVID-19 new cases or fatalities.
However, new variants of concern continue to emerge, with consequent
infections and deaths.
Since the termination of the PHE, data on vaccination rates are no
longer being tracked. The last known US COVID-19 vaccination rates
(May 10, 2023) are as follows: full
vaccination (two initial doses) 69.3%; at least one updated booster
dose: 17% (see "Track Covid-19 in the U.S." under
Vaccines, Treatment & Testing). "Our World in Data" stopped trying to
track US booster rates on August 30, 2022 and shows a flat line since
then.
#psychology #counseling #socialwork #psychotherapy #research
@[email protected] @[email protected] @[email protected]
@[email protected] #Vaccines #COVID #longcovid #science #medicine
#covid19 #coronavirus #sars-cov-2 #covidisnotover #CDC
@[email protected] @[email protected] @[email protected]
#depression #anxiety #sleep #brainfog #stillnotover
.
.
NYU Information for Practice puts out 400-500 good quality health-related research posts per week but its too much for many people, so that bot is limited to just subscribers. You can subscribe at @[email protected]
It can be useful to get people who are not doctors to write reports about how an illness or disability has affected somebody when applying for disability payments in lots of countries
This document is from the US but the questions could give ideas about areas people in other countries could write about when writing such a report
Disclaimer: The data in this column come from either mainstream news
media sources or scientific research published in peer-reviewed
journals (each category can be determined by following the links in
the reference section). This column's author acknowledges the cultural
bias of the world scientific community in its belief that the
scientific method is the most viable available alternative for
assessing COVID-19 and its effects in an objective manner through a
structured process of observable and repeatable hypothesis testing.
Summary: The updated vaccine that better protects against currently
circulating strains of the virus that causes COVID-19 may be available
as soon as next week (see "New COVID Shots Could Be Available Next
Week" under Vaccines, Treatment & Testing).
The increase in cases of COVID-19 in the northern hemisphere is
worrying healthcare authorities around the world, who are aware that
these countries usually experience a peak in respiratory infections
during the winter months (see "WHO 'Concerned' About COVID Increase in
Northern Hemisphere" under Virology & Epidemiology).
COVID-19 hospitalizations have been on the rise for weeks as summer
nears its end. COVID-19 hospitalizations rose by 19% last week and
COVID deaths by 21%, according to figures from the CDC. More than half
the states, 26, had a "substantial increase" in hospital admissions
(see "COVID-19 Hospitalizations and Deaths on the Rise" and "5
Questions for COVID Experts: How Concerned Should We Be?" under
Virology & Epidemiology).
COVID metrics have risen steadily since June after reaching the lowest
point since the pandemic started. However, just 7% of U.S. adults are
"very worried" about getting COVID-19 (see "COVID Metrics Tick Up, but
Americans Aren't Worried: Poll" under Media News).
The CDC and the World Health Organization have dubbed the BA 2.86
variant of COVID-19 as a variant to watch (see "Q&A: What to Know
About the New BA 2.86 COVID Variant" under Virology & Epidemiology).
However, BA.2.86 does not have a heightened ability to evade the
protection of COVID vaccines or immunity from prior infection (see
"Highly Mutated COVID Strain Can't Evade Immunity as Feared" under
Virology & Epidemiology).
Close and prolonged contact with someone with COVID-19 can more than
quadruple the risk of getting the virus (see "This Is When You're Most
at Risk for 'Leaky' COVID Immunity" under Virology & Epidemiology).
It's estimated that 1 out of 8 people with COVID develop long COVID.
Of those persons, 44% also experience headaches. Research has found
that many of those headaches are migraines — and many patients who are
afflicted say they had never had a migraine before (see "Long COVID
and New Migraines: What's the Link?" under COVID Complications).
Severe COVID infections may lead to lasting damage to the immune
system (see "Severe COVID May Cause Long-Term Cellular Changes: Study"
under COVID Complications).
COVID-19 may negatively affect the wound healing process while
increasing the mortality rate amongst patients with multiple or severe
comorbidities undergoing limb salvage procedure (see "Retrospective
Review of Complications and Outcomes in COVID-19–Positive Patients
With Comorbidities Undergoing Limb Salvage Procedures in a Tertiary
Care Wound Center" under COVID Complications).
Among patients with ARF due to COVID-19 pneumonia who fail HFNC, delay
of intubation beyond 24 h is associated with increased mortality (see
"Delayed Intubation Associated With In-hospital Mortality in Patients
With COVID-19" under Vaccines, treatment & Testing).
Crippling symptoms, lost careers, and eroded incomes: This is the
harsh reality for doctors suffering with long COVID, according to the
first major survey of physicians with the condition (see "One in Five
Doctors With Long COVID Can No Longer Work: Survey" under COVID
Complications).
EU regulators have recommended authorizing an updated COVID-19 vaccine
from Pfizer and its German partner BioNTech which targets the dominant
XBB.1.5 variant of Omicron, putting it on track to become the third
adapted shot by the two companies to be approved in the bloc (see "EU
Regulators Back Pfizer's Updated Vaccine for Dominant Omicron
Subvariant" under Policy).
The May 11, 2023 termination of the PHE has made it increasingly
difficult to accurately track COVID-19 new cases or fatalities.
However, new variants of concern continue to emerge, with consequent
infections and deaths.
Since the termination of the PHE, data on vaccination rates are no
longer being tracked. The last known US COVID-19 vaccination rates
(May 10, 2023) are as follows: full
vaccination (two initial doses) 69.3%; at least one updated booster
dose: 17% (see "Track Covid-19 in the U.S." under
Vaccines, Treatment & Testing). "Our World in Data" stopped trying to
track US booster rates on August 30, 2022 and shows a flat line since
then.
Charles M. Lepkowsky, Ph.D.
Solvang, CA
clepkowsky(at)gmail.com
#psychology #counseling #socialwork #psychotherapy #research
@[email protected] @[email protected] @[email protected]
@[email protected] #Vaccines #COVID #longcovid #science #medicine
#covid19 #coronavirus #sars-cov-2 #covidisnotover #CDC
@[email protected] @[email protected] @[email protected]
#depression #anxiety #sleep #brainfog
.
.
NYU Information for Practice puts out 400-500 good quality health-related research posts per week but its too much for many people, so that bot is limited to just subscribers. You can subscribe at @[email protected]
Okay all -- It's early days for figuring out how to help people with
Long COVID.
That said, a bit of promising research is starting to surface.
I'm taking the unusual step of emailing EVERYONE because at this point
many of you with anxiety and depression symptoms may have some Long
COVID (brain fog, sleep issues, the depression or anxiety itself!).
A good write-up about what Long COVID is can be found here. Yes, you
can had a trivial case of COVID-19 and still get Long COVID symptoms for
days, weeks, months, or years. Some cases of it are somewhat "mild": https://www.cdc.gov/coronavirus/2019-ncov/long-term-effects/index.html
*The bottom-line of the video is right at the end. For long COVID:
-- Get outside one hour per day.
-- May cover up if sensitive to sun (near UV rays will get through
clothing anyway)
-- Best if in nature (surrounded by green)
-- Do not look directly at sun (duh)
-- May wear a hat (near UV rays will get through clothing anyway)
-- Sitting in a sunny window no longer good enough (most glass now has
to be certified to block the rays we want)
He also promises to talk about how intermittent fasting may help in a
future video.
*
Roger Seheult, MD is the co-founder and lead professor at https://www.medcram.com/
He is Board Certified in Internal Medicine, Pulmonary Disease, Critical
Care, and Sleep Medicine and an Associate Professor at the University of
California, Riverside School of Medicine. He is also an ER doctor.
Before the pandemic, MedCram mainly seemed to be training for doctors to
pass exams. Since the start of COVID, Dr. Seheult has done occasional
more accessible videos for the general public on COVID-related topics.
To actually understand why something this simple may help -- and listen
to some research, please watch:
#psychology #counseling #socialwork #psychotherapy #research
@[email protected] @[email protected] @[email protected]
@[email protected] #Vaccines #COVID #longcovid #science #medicine
#covid19 #coronavirus #sars-cov-2 #covidisnotover #CDC
@[email protected] @[email protected] @[email protected]
#depression #anxiety #sleep #brainfog
.
.
NYU Information for Practice puts out 400-500 good quality health-related research posts per week but its too much for many people, so that bot is limited to just subscribers. You can subscribe at @[email protected]
Went to the hospital today for neurological testing. I saw only four other patients who were wearing a mask and no practitioners or staff. I honestly don't understand.
1/x #Covid#LongCovid#MasksInHealthcare
-- Forwarded Message ---
Subject: Many Long-Covid Symptoms Linger Even After Two Years, New Study Shows
Date: Mon, 21 Aug 2023 10:47:30 -0700
The Washington Post includes an article: “Many long-covid symptoms linger even after two years, new study shows” by Amy Goldstein.
Here are some excerpts:
People who endured even mild cases of covid-19 are at heightened risk two years later for lung problems, fatigue, diabetes and certain other health problems typical of long covid, according to a new study that casts fresh light on the virus’s true toll.
The analysis, published Monday in the journal Nature Medicine, is believed to be the first to document the extent to which an array of aftereffects that patients can develop — as part of the diffuse and sometimes debilitating syndrome known as long covid — linger beyond the initial months or year after they survived a coronavirus infection.
According to the findings, patients who suffered bouts of covid severe enough to put them in the hospital are especially vulnerable to persistent health problems and death two years after they were first infected. But people with mild or moderate cases are not spared from the consequences when compared with those who never had covid, showing an elevated risk of two dozen medical conditions included in the analysis.
The study highlights the burden that continues to confront millions of people in the United States and the nation’s health-care system even though the federal government canceled the coronavirus public health emergency three months ago and the World Health Organization has declared the pandemic no longer a public health emergency of international concern.
“A lot of people think, ‘I got covid, I got over it and I’m fine,’ and it’s a nothingburger for them. But that’s not everything,” said the study’s senior author, Ziyad Al-Aly, a clinical epidemiologist at Washington University School of Medicine in St. Louis. After a couple of years, “maybe you’ve forgotten about the SARS-CoV-2 infection … but covid did not forget about you. It’s still wreaking havoc in your body,” said Al-Aly, chief of research at the Veterans Affairs St. Louis Health Care System.
<snip>
Long covid remains a murky syndrome. Investigators participating in a growing body of research define it by different symptoms and different time frames, and some clinicians still do not always regard patients’ complaints as a serious phenomenon. According to Al-Aly, just two other known studies have used two-year time horizons, but they focused on a narrow group of symptoms, such as nervous system effects.
Estimates vary of how many people go on to suffer significant aftereffects. One analysis of nearly 5 million U.S. patients who had covid, based on a collaboration between The Washington Post and electronic health records company Epic, found that about 7 percent of those patients sought care for long-covid symptoms within six months of their acute illness. At the time, about 200 million people in the United States were known to have had covid, so that percentage translated into about 15 million with symptoms typical of long covid.
The new study is based on electronic medical records from VA databases of nearly 139,000 military veterans diagnosed with covid early in the pandemic, from March 2020 through the end of that year. They were compared with a group of nearly 6 million veterans not known to be infected with covid during that time. Both groups were tracked every six months to the two-year mark, looking at whether those who had been infected had higher rates of about 80 conditions typical of long covid. The study also looked at hospitalizations and deaths.
For the relatively small share of covid survivors who had been hospitalized, they had a heightened risk two years later of death, subsequent hospitalization and two-thirds of the medical conditions included in the analysis. Among those conditions: cardiovascular issues, blood clotting trouble, diabetes, gastrointestinal problems and kidney disorders. The survivors and the uninfected had started out in similar health, Al-Aly said, so the findings suggest the virus actually produced the heightened risk of lingering medical problems.
For the bulk of covid survivors in the study with milder cases, their long-term risks were less but not entirely gone. By six months after having tested positive, they were no more likely to die than people uninfected by covid. And their elevated risk had virtually disappeared by then for two-thirds of the conditions measured in the study, though they still displayed greater odds after two years of medical problems involving some organ systems, including cardiovascular and gastrointestinal trouble and blood clotting, along with diabetes, fatigue and lung issues.
Francesca Beaudoin, an emergency room physician and clinical epidemiologist who directs Brown University’s long-covid initiative, said the findings “capture what we are hearing at the narrative level from patients — that … the systems [affected after recovery from covid’s acute phase] are varied, that it results in loss of quality of life, loss of work and school.” Beaudoin said patients send her updates, reporting they still cannot walk one block without becoming worn out.
The study’s good news is that some people with milder covid cases do have fewer aftereffects over time, said Eric Topol, director of the Scripps Research Translational Institute who has been immersed in coronavirus research. But he said, “you don’t see a lot of optimism in these data. It’s basically a continuation of what we see at one year.”
The Nature Medicine paper noted that the covid survivors tracked in the analysis are not entirely representative of who is most likely to develop long covid. Because the patients in the study are veterans, the group is older than typical, and nine out of 10 are men, while women account for more than half of long-covid patients in the general population.
Topol pointed out that because the study included only patients infected in 2020 — which allowed a two-year time span to follow them — they had the virus before coronavirus vaccines were widely available and before antiviral treatments such as Paxlovid had been developed. That also was a period before people tended to have built up immune defenses from one or more covid infections.
“The whole landscape has evolved,” Topol said. Compared with people infected later in the pandemic, those in the study were “a defenseless population.”
Al-Aly said he and co-authors are working on a three-year analysis and plan to assess the same patients five years and a decade after they first developed covid.
“Obviously, we can’t predict the future,” said Akiko Iwasaki, an immunologist at the Yale School of Medicine who researches long covid. But she noted that omicron — a coronavirus variant that has spawned subvariants and dominated since late 2021 — is known to cause long covid. “We would expect some sort of parallel” with the study’s findings, she said. “It’s not a different virus, even though it’s a variant.”
Covid is not the only viral outbreak that has produced long-term aftereffects. Topol noted that people who survived the 1918 influenza pandemic had an elevated risk of developing Parkinson’s disease years later, while some people who had polio in the first half of the 20th century developed a constellation of symptoms known as post-polio syndrome decades afterward.
<snip>
Slightly more than 1 million people in the United States have died of covid, according to the Centers for Disease Control and Prevention.
The WHO reports more than 103 million confirmed cases in this country.
@danai@academicchatter I wonder if some of it is because people feel fewer of their followers here will be interested. I was part of quite a wide academic (qualitative social science) community over there - and even there I always had a slight concern that people who came for the cats or the UK politics might have been completely baffled by the academic stuff. But since you ask, here's a recent paper on experiences of #LongCovid 😀 https://www.sciencedirect.com/science/article/pii/S266732152200169X
Hi, I'm a science & tech nerd turned science fiction & fantasy author. My first novel (Machinehood - near future AI) was published last year, and my next one (Meru - far future space opera) comes out in Feb.
For the past 5 years, I co-edited Escape Pod, a weekly #scifi podcast. I retired because I've had #LongCovid for almost 2 years, now most likely #mecfs
Really like being here and connecting with friends who didn't show up as often on the bird site.