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NIH: Trying To Make Sense of Long COVID Syndrome


Senior Member
East Coast USA

Full text at https://directorsblog.nih.gov/2021/01/19/trying-to-make-sense-of-long-covid-syndrome/

Note there's an on-going UCL London survey and they're looking for participants [see last paragraph in Dr. Collins' blog].


Senior Member
Dr. Collins was mentioned a few times in Dr. Ron Davis's book about Whitney.

My neurological illnesses (that I've had surgery for) are still referred to as Syndromes (which is basically just a collection of symptoms). How long does it take for that word to be dropped. It has a name and is frustrating that Syndrome is still used today. This doesn't help funding, although COVID certainly will.

It's good that neurological causes are now known, though, b/c some of the symptoms of ME fit into both categories. Unfortunately, in my case, I had ME both before and after surgery. Retrospect is so helpful.
Yours, Lenora.
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Senior Member
Many of the earliest COVID ‘long-haulers’ still suffer; Seattle researchers are trying to figure out

Many of the earliest COVID ‘long-haulers’ still suffer; Seattle researchers are trying to figure out why

Kelly Hickman knows exactly how she got the novel coronavirus: Attending a friend’s wedding in early March, just before scattered outbreaks around the globe coalesced into a pandemic.

What the 37-year-old Seattle woman doesn’t know is when — or if — her life will get back to normal.

Though her initial infection was mild enough that she kept working from home, Hickman soon found herself plunged into a cycle of crushing fatigue and brain fog so impenetrable she couldn’t read a book or follow the plot of a movie. Her skin felt like it was on fire. She had to quit her job and for months could barely get out of bed....
“Is this chronic? Is this my life now?” she asked. “I don’t know and the doctors don’t know.”

“Long-haulers” is one of the terms used to describe people like Hickman, for whom COVID-19 is far more than a passing disease.

Many have been slammed with symptoms that persist long after their bodies have cleared the virus and disrupt a bewildering array of body systems: The lungs, of course, but also the heart, kidneys, digestive tract, brain and nervous system.

While protracted recoveries are common among the sickest, most vulnerable patients, the long-hauler ranks are also filled with younger people with no underlying medical problems and who were never hospitalized.

...UW researchers are part of a national study called INSPIRE that will follow nearly 5,000 post-COVID patients over two years....

....Researchers at Seattle’s Institute for Systems Biology are devising blood tests to detect viral fragments or residual pockets of infection that might be responsible for the chronic inflammation that plagues many long-haulers.

And Himmelfarb, the UW kidney specialist, is approaching the problem from a fundamental level.

In laboratory studies, he and his colleagues are using something called organoids — masses of lab-grown tissue that resemble human kidneys — to determine whether the novel coronavirus directly infects kidney cells...
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Senior Member
Hello @Eccoclimber.....It's sad to read that people are suffering from Long-Haulers, ME, CFS/FM whatever you want to call it and so little is being done.

We've had three family members, a daughter in CA, and my other daughter and granddaughter who have had the virus (I'll say the first virus, so it doesn't get confusing). Our granddaughter was in college and didn't even know she had it, the one in CA lost her smell and taste and the same thing happened to our daughter here except she also had nasal problems. She was extremely tired and it took her about 2 wks. to get over it. I encouraged both of our daughters to spend time in bed and definitely to hit the sheets as soon as they were fatigued. Thus far, we've had no fallout. Interesting to note that both of our daughters feel they picked the virus up at the grocery store. I see warnings about grocery stores are now on the News.

I, of course, have been quite nervous about them having the virus. Their children (4) are all fine, and their husbands. What makes the difference? The big question for our times? I hope you manage to stay virus free until you're able to be immunized. Yours, Lenora.


Senior Member
@lenora Thanks for your wishes and pray that all will be well with you and your family as well !

In relationship to smell/taste affecting members of your family:

Two articles recently appeared in ACS Chemical Neuroscience that need attention.(1,2) The article published by Bilinska et al. indicated that sustentacular cells are responsible for Severe Acute Respiratory Syndrome (SARS)-like Coronavirus (SARS-CoV-2) entry and related smell impairment.(1) Bilinska et al. also reported that non-neuronal cells of the olfactory epithelium (OE) are more likely to be the entry point of SARS-CoV-2 virus rather than olfactory receptor neurons (ORNs).(1) In the second report, Butowt and Bilinska highlighted the need for OE-oriented experimental studies to clarify various points related to SARS-CoV-2 virus and the continuous need for clinical data related to SARS-CoV-2 and related smell loss.(2)

Brann et al. reported that direct involvement of olfactory sensory neurons (OSNs) may not occur in SARS-CoV-2 infection since OSNs did not express ACE2.

Non-neural cell types (e.g., stem cells, TMPRSS2 support cells, and perivascular cells) express ACE2, and they are responsible for related smell impairment.(3)

Brann et al. hypothesized that inflammation, deteriorated signaling, and diffuse architectural damage of the OE may be the mechanisms for smell impairment.

The results are presented in Table 1. Published studies indicated that smell impairment in SAR-CoV-2 recovered early.

At present, no treatment for SARS-CoV-2-related smell impairment exists.

In two studies, some treatments, including nasal saline irrigation, intranasal corticosteroids, systemic corticosteroids, dietary supplements, vitamin A, and olfactory training, on limited number of the subjects were reported.(7,11)

However, no definite conclusion could be made concerning the effect of treatment on recovery rates. Smell loss mostly recovered in a few weeks after the infection and seemed to reduce with time.


Other Research has demonstrated SARS-CoV-2 infection in human tissue samples of olfactory mucosa (the outer layers of tissue in the nose) and its neuronal projections into the central nervous system (CNS), indicating that the virus can exploit the olfactory system to cross into the CNS.


Olfactory transmucosal SARS-CoV-2 invasion as a port of central nervous system entry in individuals with COVID-19

The newly identified severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) causes COVID-19, a pandemic respiratory disease.

Moreover, thromboembolic events throughout the body, including in the CNS, have been described. Given the neurological symptoms observed in a large majority of individuals with COVID-19, SARS-CoV-2 penetrance of the CNS is likely.

By various means, we demonstrate the presence of SARS-CoV-2 RNA and protein in anatomically distinct regions of the nasopharynx and brain.

Furthermore, we describe the morphological changes associated with infection such as thromboembolic ischemic infarction of the CNS and present evidence of SARS-CoV-2 neurotropism.

SARS-CoV-2 can enter the nervous system by crossing the neural–mucosal interface in olfactory mucosa, exploiting the close vicinity of olfactory mucosal, endothelial and nervous tissue, including delicate olfactory and sensory nerve endings.

Subsequently, SARS-CoV-2 appears to follow neuroanatomical structures, penetrating defined neuroanatomical areas including the primary respiratory and cardiovascular control center in the medulla oblongata.


Research on SARSCoV2 is constantly evolving. Some of my goto researchers on Twitter are of the following:

Dr Emma Hodcroft @Firefoxx66 World renown Leading researcher & co-developer on NEXTSTRAIN tracking emerging viruses @ISPMBern SARSCoV2/COVID-19

Virologist Ian M. McKay PhD @MackayIM

Keeping Australia & the world safe with his famous Swiss Cheese Respiratory Pandemic Defense Diagram and his great guide and defense on COVID-19 PCR Testing

Trevor Bedfor @trvrb @FredHutch

Dr. Angela Rasmussen @angie_rasmussen

Dr. Tom Frieden@DrTomFrieden

Eric Feigl-Ding @DrEricDing Epidemiologist

One of the first to sound the alarm on COVID-19 with his infamous "HOLY MOTHER OF GOD" clarion call. Video out of Wahun Province, China showed people suddenly dropping dead in the streets. There is a post on phoenix rising about asymptomatic individuals suddendly having cardiac failure.

There are so many other great researchers out there

NOTE: Remember with UK variant is NOW in U.S. and expected to be the dominate strain by March. Fauci is now recommending double masks or a N-95 respirator.

Stay Safe ! Best, Eco


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Senior Member
Hello @Ecoclimber....Thanks for all the info you sent. I read what you copies & did go read a good part of the Attachment and was shocked to see that there are presently 7 different types of COVID, all capable of infecting anyone. That certainly hasn't been in the news!

Everyone in our family seems (?) to have recovered and my husband had his first Pfizer vaccination and will have a follow-up in about a week. I have an appt. to have whichever vaccine is on hand next weekend. There are no answers as to autoimmune disorders and, as you know, so many other questions. I phoned a friend in Philadelphia who has MS, cancer and a number of other neurological problems.

My problem has been that I can't get any decent answers out of my doctors, or the different info I've read...you name it, it isn't there. Anyway, my friend is at a very good research hospital and her neurologist told her to go ahead and get the vaccine immediately and sooner or later there will be one especially for autoimmune illnesses in people, but probably won't be available for at least 2 or more years. These conditions are more common the older we become. I hope to leave my house at sometime so will go with this advice. I'm surprised that I was able to get an appt. that soon. My cardiologist wanted me to have it asap, so perhaps he had something to do with it.

Anyway, the advice I've heard thus far is that we should go ahead and have the vaccine b/c the virus is killing mainly older people, and the survivors are often left with brain damage as well as a host of other problems. The older you are, the more likely you are to have side-effects. That did it for me! I have autoimmune encephalitis, and that's been one of the big problems. It certainly sent my brain into a tailspin earlier last year. There are so many diverse opinions, but while I'm waiting, I may end up with COVID....definitely not good.

. Thanks for the information and do take care of yourself. Yours Lenora.
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