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.

@hicopd

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.

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I have a loved one who has been at Stanford’s CFS clinic since 2016.

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@npinner04

I agree with everything both of you said. Especially how it affects not only you but everything around you. Friends, family, work and anything else you did in life. It’s definitely a life changer!

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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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@misslauren

I developed hypertension that can not be controlled by any medication. I never had high blood pressure in my life until I got long covid .I have low grade fevers every day up to 100.7. I also have chronic fatigue . I have short term memory loss. I had extreme weight loss. I weigh 107 pounds . When I got LC I lost 30lbs and I was not over weight. So I went down to 100lbs. I have gained 7 pounds in 2years.

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1 dropped from 220 to 150. Not good. I either forgot to eat or felt too tired and didn’t care enough to go to the kitchen. I set timers on my phone to eat

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@donnie46

You are the HERO of millions of us who became ill with Covid!!! The list of symptoms is as long as there are people affected. If possible, your mentioning what Is obvious to many of us but is often unknown to doctors and those unaffected…namely the sadness, isolation, lack of answers and lack of definitive helpful treatment. Many of us are treated as lab animals because care givers also either never heard of Covid or will not admit they simply do not know what might be helpful. Hopefully, at least one medical professional is documenting wold-wide findings to provide answers and treatments for the next generation…if not sooner. Those of us senior citizens are unlikely to see a true cure, but we are hopeful for the those who follow. Our lives have been altered beyond description. May you get MORE than “five seconds!”

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Thanks. All of us are heroes for raising our voices. If just one person hears us and asks their doctor if the have long Covid, and if that one doctor helps the person, we’ve all done something good in this crazy world.

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@janeaddams

Thanks, ericy210 for being our spokesperson. It'll take a lot of energy and I hope you're getting some rest to prepare. I agree with all the other comments and would add this: From what I've learned (since dx in 2023), one of the hardest parts is the gaslighting and lack of understanding, not just from doctors(!) but from close friends and family. Many people just don't get it and say stuff like "You LOOK good, so how can you STILL be sick? Maybe you need some lavender aromatherapy cuz that works for me ..." etc. etc. Much more information needs to be blasted to the general public since we can't be explaining this over and over... it takes too much energy. I'll be watching all week and thanks for taking this on for the rest of us! (Bottom line: More publicity, please!)

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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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@donnie46

You continue to be a SHINING STAR in the on-going battle to find answers, raise more awareness and acknowledging this unique illness unlike any we’ve experienced.
MANY “likes, helpful and hugs” to you for asking for input. You deserve a round of applause and a standing “O.” ‘Nuff said!!! (Donnie46)

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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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@rinadbq

I think a look at healthcare workers, I am/was an ER nurse, that were infected and now have long covid would be helpful. We stepped up, walked directly into harms way and saved lives when the entire world was shut down and the same world has forgotten us. I got sick in 2020, lost the 40-year career I love and feel just tossed aside.

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Thank you for 40 years of caring for people. I hope karma gives you some relief

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@saraheigen

We need a voice for us! There are too many of us with no answers, no hope of getting better. We feel this way because we hear nothing on any research or progress to help us. This list of symptoms are so long & diverse where do we all begin. There begins to be a feeling of hopelessness without a voice & no one to hear us!!

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All of us have a voice. Tell your friends, paste online, create a bumper sticker, or suggest looking at the nice CDC overview.
https://www.cdc.gov/covid/long-term-effects/index.html

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@sarahschlagal

Cannot agree more with all of these posts. Not that it makes any difference to me at this point, hopefully, many will think twice about getting the vaccinations. Yes, for many, it probably was a beneficial choice. HOWEVER,I have been afflicted with the negative repercussions from, 'the jab'.
Weakness, FATIGUE 24/7, brain fog, GI upset, DIZZINESS, muscle cramps, impaired balance,....and THIS list is just the beginning.
Be very judicious about your health.

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Your last point is strong. Everyone should keep in mind how precious health is. You never know when something may happen, take good care of yourself.

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@rinadbq

I live in Chicago as well if you would like to talk

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If this is directed to me, direct message me. Just having regular talk about the weather with someone who understands us is nice. Especially if one person loses their train of thought or makes a mistake. It’s okay

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