I’m being interviewed by NBC Chicago on long Covid this week. Help

Hello- I am waiting consent for approvals for sharing my NIH-generated data with others. I am following the medical privacy laws, which we are fortunate to have.

FYI- one of my doctors asked me about the latest status of paxlovid. She said a friend was surprised to pay $700. I said I’d look into it. You can see in the news below that certain coverage expired 2/28/2025. There is no political intent in this note. It’s for people to know as they budget accordingly.
https://www.aol.com/does-medicare-cover-paxlovid-120000453.html?guccounter=1
Medicare beneficiaries can receive Paxlovid at no cost through February 28, 2025.
Eligible Medicare beneficiaries can access Paxlovid at no cost until February 28, 2025, through a patient assistance program operated by the manufacturer, Pfizer.
https://www.aol.com/does-medicare-cover-paxlovid-120000453.html?guccounter=1

Has anyone else experienced their hair thinning? In my last 6 month study with Endeavor Health, it was one symptom I was asked about weekly in a 20-minute survey.

I don’t know if my hair is thinning as normal male pattern baldness. I do know a friend that had long Covid and said her pony tail doesn’t seem as thick. She said her hairdressers were chatting about how weird it is that so many women’s hair seems thinner. Now I can understand why that question was in the research- to collect data on if there’s a connection between hair loss/thinning and long Covid. Anyone have a similar hair experience? I’ve never had long hair and have no personal experience.

I had that for years as well. Though not totally gone now, it is massively lessened-I can put full sentences together without having to try to clear my throat. I never found a remedy except, ugh-that awful word, time.

I have been using a cool mist humidifier set up on a barstool at my bedside. It mists about 2feet above my face & helps keep my nose&sinus mucus looser. I can cough& nose blow in morning to easier clear the mucus.

Hi @ericy210. I too have lost about half my below waist hair that Ive had most of my life. My provider verified a lot of us are experiencing this and appears as all else differs from person to person as to the extreme🙃 Hope this helped🌈

Thanks I have used one also but not above my face, I will try moving it.

This doctor’s quote below spoke to me. The things I’d like people to know about LC and don’t see is that…
Other people (friends, colleagues, even some of my professional doctors) cannot see our symptoms outwardly.
Extensive and expensive medical testing often doesn’t show doctors cause for the long list of horrific symptoms.
So we feel misunderstood, often feel unheard and forgotten. And this adds a bit of hopelessness along with the ever present chronic physical and mental pain.
Long covid is a dreadful, and debilitating chronic illness. One with no tests, no medications and no cure.

Dr Ely said:
“Long COVID has joined the ranks of other acute illnesses caused by infection, where the person ends up with a chronic disease state,”
“It is a societal disaster. People look absolutely normal but they’re living in a nightmare and those around them don’t see it.”
- E. Wesley Ely, MD, MPH.

A collaborative group of researchers and doctors, funded by NIH,
are beginning a new trial/study “Reverse LC” at Vanderbilt Health/University Medical Center . The trial is to examine the effect of immunomodulation.
The REVERSE-LC trial will test the hypothesis that six months of baricitinib will improve neurocognitive and physical function in patients with long COVID symptoms.

Ely also said.
“Long COVID turns on a harmful light switch that alters the immune system in a way that causes immense human suffering, and we need to know if we can safely turn off that switch to help people find a pathway to recovery,”

Here is the link:
https://discoveries.vanderbilthealth.com/2025/01/treatment-on-trial-to-reverse-long-covid-effects/

To jewel2020 —

Thank you for your comment about the upcoming clinical trial of baricitinib. It would be used to reverse LC. If I lived near one of the clinical trial sites I’d apply immediately to participate!

You quote remarks from Dr. Ely about longhaulers’ unacknowledged suffering. These remarks show that some physicians are informed about LC and eager to provide the best care available for LC. That is the case with my healthcare providers.

— friedrich

Standord has expanded its chronic fatigue syndrome clinic to be a Long Covid and CFS clinic. I believe it is studying and treating both types of patients as there is significant overlap.

I would not hesitate to participate in this trial if it were close enough to travel!
I am 2+ years in with post covid. I struggle daily with almost every dreadful symptom associated with it.
I do want to say, that I have a competent and caring PCP. She has been SO wonderful treating me with this chronic illness.
I’ve been to every specialist and had all the testing done, with no real outcomes, except inflammatory and autoimmune markers.
I too, believe that physicians are becoming more informed about LC.
I hope that at the governmental level, we will see more appropriate funding for trials and research. As we all hold out hope and look forward to findings that will alleviate symptoms and perhaps, put an end to post covid all together .