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

Posted by ericy210 @ericy210, Mar 2 12:37pm

NBC Chicago is doing some segments recognizing the five year “anniversary” of Covid. One segment is on long Covid. The Principal Director of the RECOVER studies Dr. Nirav Shah will speak of his research and I was asked to be interviewed as a participant.

I’m going and will publicly disclose my medical issues to bring awareness to long covid. Are there short comments I should consider mentioning about life with long Covid?

They will probably edit it down to fit their story, but I’d like to answer questions with all your long Covid experiences in mind.

I speak again with the PR person tomorrow for more info.

Thanks.

Interested in more discussions like this? Go to the Post-COVID Recovery & COVID-19 Support Group.

ericy210 | @ericy210 | 6 days ago
In reply to @boo6 "Living with excessive mucus everyday. I can't cough it up and have gone to an ENT,..." + (show)
@boo6

Living with excessive mucus everyday. I can't cough it up and have gone to an ENT, gastrologist and several tests with no answers. Diagnosed as LPR but last test showed moderate acid reflux. At night mucus thickens and spend hours trying to loosen. It's been 3 1/2 years (after my 2nd covid vaccine) NO one has given me an answer or interested. I am lost. Diet, allergy meds no help....not sure what my next step is so disgusted!! We need help!!

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That thick mucous you can scoop out with your hands is bad. I ended up prescribed an inhaler that gave me a little relief in the coughing I had because of it. Maybe ask your doctor.

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ericy210 | @ericy210 | 6 days ago
In reply to @et09 "I agree that we need help! Everyone encouraged us to talk to doctors but when I..." + (show)
@et09

I agree that we need help! Everyone encouraged us to talk to doctors but when I tried to have conversation I could tell they were “programmed “ with their statements or didn’t really reply at all!!

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I have gone to doctors with material like Mayo Clinic long Covid resource print outs to xplain or for them to review. Sometimes they’re either a general practicioner not into the latest news or someone so specialized they don’t know systemic impacts of long Covid. I’ve seen them find informational helpful and gotten referrals.

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1 reply
ericy210 | @ericy210 | 6 days ago
In reply to @jewel2020 "This doctor’s quote below spoke to me. The things I’d like people to know about LC..." + (show)
@jewel2020

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/

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Thank you. I been in in REVOVER-VITAL and RECOVER-ENERGIZE and am looking at RECOVER-PACING. don’t know I’ll get in or get a placebo, but least it creates data. If I got into LC, I’d probably have to find a way to get to TN!

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ericy210 | @ericy210 | 6 days ago
In reply to @friedrich "To jewel2020 — Thank you for your comment about the upcoming clinical trial of baricitinib. It..." + (show)
@friedrich

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

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Clinicaltrials.gov is the NIH website showing what research is recruiting and where

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npinner04 | @npinner04 | 6 days ago
In reply to @ericy210 "This is the hardest part for me. Nobody understands what it’s like. The more I try..." + (show)
@ericy210

This is the hardest part for me. Nobody understands what it’s like. The more I try to explain, I feel like I get myself confused doing so, and I feel like some people just think I’m dumb. Or my fog does make me ramble on I and I feel I should shut my mouth

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I get it, that’s why I don’t explain anymore and when people ask me how am I doing I always reply with ok or fine knowing that I am not. If the person is importantly enough to me I send them info on long covid so they will have a better or somewhat better understanding of what it’s like for me now. I always say I would rather have Covid again than go through this😢😞

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donnie46 | @donnie46 | 6 days ago
In reply to @ericy210 "Thank you. We can all be stars if we raise awareness of long Covid and discover..." + (show)
@ericy210

Thank you. We can all be stars if we raise awareness of long Covid and discover solutions. Just because a star is hidden in a cloud of brain fog doesn’t mean it’s not shining bright!
We are not diminished people.

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Your words and attitude are inspirational. I had Covid pneumonia in 2019….obviously VERY early in the process. From then to very recently I lived without this wonderful on-line community that understands, does not judge, offers encouragement, provides experienced advice and kindness to strangers. It is beyond WONDERFUL to feel understood unlike the attitude of many doctors who never had Covid and all it entails.
Ericy210, please know you are VERY deserving of the round of applause, the “standing *O* and title of “Hero” because you are are willing to speak for us even though you are burdened by ailments only Covid patients understand. From you in Illinois to me in Massachusetts, the miles are insignificant compared to
the invaluable treasure of understanding you offer to us all. PLEASE keep us posted!!!

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hicopd | @hicopd | 6 days ago

My PT has long covid. She used to be able to jog for long distances with no problems. Now she can’t run at all and can barely walk her dogs due to her long covid. She has brain fog and other issues as well and has none of the stamina she used to have.

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janeaddams | @janeaddams | 5 days ago
In reply to @ericy210 "I have gone to doctors with material like Mayo Clinic long Covid resource print outs to..." + (show)
@ericy210

I have gone to doctors with material like Mayo Clinic long Covid resource print outs to xplain or for them to review. Sometimes they’re either a general practicioner not into the latest news or someone so specialized they don’t know systemic impacts of long Covid. I’ve seen them find informational helpful and gotten referrals.

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A bit of a role reversal… but whatever works. The smart doctors are open to new learning from us… but sadly it seems that many of them take the attitude that they already learned everything in med school. Thanks for all you’ve doing for the cause🙏

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janeaddams | @janeaddams | 5 days ago
In reply to @ericy210 "It’s a horrible invisible disease. I feel like someone with COPD who people get upset with..." + (show)
@ericy210

It’s a horrible invisible disease. I feel like someone with COPD who people get upset with because the park in handicap parking and have authorization to do so. The COPD person legit can’t walk as far as others, but they may look great to people.

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Yup… I never thought I’d hate it when people say “You look so good!”… but here we are🤣

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hicopd | @hicopd | 5 days ago

Oh yes, so many of us with invisible conditions “look so good.” Heck, just because our body malfunctions doesn’t mean we are UGLY! It’s so odd the folks equate looks with health.

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