Partners and Alliances:
“The hope is that most people who recovered from COVID-19 are going to stay recovered,” Dr. Goldberg said. “But there’s going to be a set of people who have consequences months and years later, either because the problem wasn’t detected or maybe there are late complications of this disease.”
The RECOVER Initiative cohort studies, funded by NIH at nearly $470 million, are addressing a potentially massive, long-term public health problem. The U.S. Centers for Disease Control and Prevention data tracker in October reported that the nation had reached 45 million cases of COVID-19 since the pandemic began. Millions of other cases undoubtedly have gone untested and unreported.
The LCA was co-founded by Solve M.E., the Global Pandemic Coalition and the COVID-19 Longhaulers Advocacy Project. We are over 600 science, post-viral disease and patient advocacy organizations and individuals working together to find answers for Long COVID and post-viral illness.
What is Long COVID? (LCA)
“Long COVID is also known as Post-acute COVID-19 syndrome (PACS), Post Acute Sequelae of COVD-19 (PASC), COVID Long Haulers, or Long-term COVID-19.
These terms describe a collection of lingering symptoms devastating the lives of many COVID-19 survivors. These symptoms persist in an estimated 10–20% of COVID-19 patients, regardless of infection severity, even after the patient no longer tests positive for the virus or antibodies. While recovery times for COVID-19 vary from person to person, Long COVID generally refers to cases where symptoms continue to persist for 90 days or more.
Preliminary reports and data about Long COVID symptoms and patient experiences contain many similarities to other chronic illnesses known to be associated with viral triggers, such as: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), postural orthostatic tachycardia syndrome (POTS), other forms of Dysautonomia, and Mast Cell Activation Syndrome (MCAS), just to name a few. Among patients with medical visits, 68% received a new diagnosis and 38% visited a new specialist who did not treat the patient in the year before the COVID-19 diagnosis.”
Long COVID Alliance Priorities:
- Ensuring meaningful patient participation
- Confronting systemic bias and racism in the Long COVID response
- Advancing health equity initiatives
- Facilitating data harmonization
- Leveraging existing post-viral disease knowledge and infrastructure
- Expediting public-private partnerships
- Creating a platform for thought leaders
- Connecting policy makers with patients and scientists
- Providing expert guidance and resources to media and policy makers
This main site will be focused on resources, current frontline breaking research, free pulmonary rehabilitation, my work with the Long Covid Alliance to build policies to help COVID-19 longhaulers, and how existing medications and clinical trials can help those affected by COVID-19. For the Covid Survivors From Texas community moral support groups, follow the links below:
Texas Facebook Support Groups:
Scroll down for an update on how I am advocating for resources and therapeutics, and please see our COVID-Longhauler page for exhaustive resources to help people through this journey and explain the conundrum of symptoms of Covid-19 that may remain after beating the initial infection.
Physicians, Covid-19 Resources, and Virtual ERs Limited FREE appointments (IVERMECTIN ANTIVIRALS), low cost subscription plan telemed virtual care and more.
Access a Doctor Now Using Below Platforms
http://www.myfreedoctor.com (Only contact them if your situation could be dire right now, they are very overwhelmed) FREE & DONATION BASED
Virtual Urgent Care
Robert Lowery, MD, MS, Boerne, TX
(210) 499-0990, [email protected]
Dr Alberto Mendez (MEXICO NOT TEXAS) https://www.doctoralbertomendez.com/
https://askdrt.weebly.com/ (Texas/Michigan only)
Alieta Eck, MD, Piscataway, NJ
(732) 463-0303, [email protected] (Nationwide)
Jason N. Cox, MD, Alma, GA
Telemend appointments available. Office hours M-F 8a-6p. Weekend and after-hours available for COVID positive patients only. (Nationwide)
Wesley J. Merritt, MD
[email protected] (Oklahoma & Texas)
Audrey Jones, DO
Advantage Health, St. Augustine, TX
(956) 325-3138 (Texas)
Jerry Holubec, DO, Allen, TX
(972) 672-8921, [email protected]
https://youonlyyounger.com/ Kami Owen, APRN, FNP-BC, ENP
You Only Younger, Sugar Land, TX
https://etpmed.com/ East Texas Precision Medicine Kimberly Barbolla, DO, FACOI
East Texas Precision Medicine, Marshall, TX
Mitchell F. Finnie, MD
Shavano Family Practice, San Antonio, TX
/https://myemergencyroom.com/ Rena Sayler, DO, My Emergency Room 24/7
In-person evaluations 24/7/365 in one of our 3 locations—My ER 24/7 in San Marcos and Abilene and My Urgent Care in Boerne,TX. Telemedicine is through the Care Convene for Patients Ap, code DOC247, then start session. Cost is 50$. It is manned as much as possible. We call in Rxs preferentially to Uptown Pharmacy in Dallas who will ship anywhere overnight. Their price is 154$ for two months prophylaxis or full treatment dose. Their number is 214-935-9092.
Air Care Richard Herrscher, MD
Allergy, Immunology & Respiratory (“AIR”) Care, Plano and Dallas, TX
MONOCLONAL ANTIBODY TREATMENTS https://meds.tdem.texas.gov/?fbclid=IwAR0BR-hb9N64YaBwyhSIixMj5TLQfgc-GBSkyLJ7kEiPaq6OGqoNM9LpUgo
Monoclonal antibody therapeutic treatments are shipped nationwide. Patients should coordinate with their respective physician or care provider before contacting a location to receive treatment. A call center is available to answer questions and provide information related to monoclonal antibody therapeutic treatments at the following phone numbers: 1-877-332-6585 (English Language); 1-877-366-0310 (Spanish Language) CALL TO DETERMINE ACCESS AND AVAILABILITY https://tdem.maps.arcgis.com/apps/webappviewer/index.html?id=993e2c2079f8487cafcec74e00e84991
casirivimab and imdevimab EUA fact sheet for patients_0.pdfDownload
– UPDATED AUGUST 22 2021 –
To get you up to speed a little bit, below is a video from Texas C.A.R.E. Founder and CEO Miranda Erlanson. I beseech the FDA to make a compassionate approval of Leronlimab, antiretroviral and monoclonal antibody treatment. I participated in a clinical trial as one of 56 people in the United States within an experimental arm trial of the drug Leronlimab termed CD15. The Longhauler trial was very successful with greater than 190% reduction in pain and symptoms. Read what VeryWell Health writer Cyra-Lea Drummond reports on Leronlimab, in collaboration with myself and COVID expert virologist Dr. Bruce Patterson: Can Existing Drugs Treat Longhaulers
We are flying by the seat of our pants, meaning new information arrives daily that contradicts a National scientific governmental agency. Our Facebook posts regarding therapeutics and clinical trial drugs are deleted, and the support group is threatened to be closed if we mention taking medicine that our government cannot exploit or become rich off of. Entrenched within this emergent medical condition that is being a dysautonomic longhauler, is a political sickness, wherein the motivations of big pharma, and the pockets of the FDA and more are questioned. What type of society would allow their citizens to suffer a fate and pain cited to be worse than the pain of cancer and chemotherapy combined? When a double blinded clinical trial treatment that has been approved by the FDA can treat this, why would a government sit still and not move forward on a drug they cannot monetize? Double blind data has proven a monoclonal antibody treatment helpful for the CCR5 treatment longhaulers need. Thousands email for the wish list to inquire to be enrolled in the next clinical trial phase. The patients rights handbook states patients have the right to help make decisions with their doctor regarding their medical treatment.
I traveled to Georgia and lived there for three months in order to maintain status in the trial. At the conclusion of the trial in May 2021, some of my symptoms returned, some were permanently resolved; then yet others perplex me for unknown reasons. Body and bone pains, fatigue, dysautonomia, and neurologically provoked vomiting continue to affect me. Don’t get me wrong, the Leronlimab helped remove 18 of 24 symptoms. It gave me back my quality of life and energy to cook and entertain my family and friends. While following the CCR5 and antiviral protocol is helpful for me, working from home is necessary due to my need for rest. I have transitioned to being a virtual tutor and freelance editor. My dream to be a teacher has been adjusted due to my disabilities, but my aim to fundraise and help Texans affected by Covid-19 continues. Visit the Swag page to make a donation or purchase a T-Shirt to benefit the non-profit COVID Survivors From Texas.
Longhauler advocates helped found a rehabilitation and longhauler focused recovery website, working with the NIH to build committees of physicians, patients, scientists, and the learning community. Check out http://www.recover.org! It has also been established that minority groups, Latinos and African-Americans have received even worse treatment than others when it comes to Long Covid, and received emergency care. Illicit drug testing, accusations, and less than humane substandard care has been exposed and our BIPOC sisters advocate and work with the NIH, WHO, and CDC to counteract implicit racism and bias. Liza Fisher, Cynthia Adinig, Miranda Erlanson, and more Long COVID Alliance members team up to portray the disparities to our nation. In some ways, media awareness and scientific journalism has taken over the news outlets. Facebook censoring and deletion has become overbearing, and many have deferred to webinars, Youtube, and the iPhone app Clubhouse which is a modern post-Covid walkie-talkie, where you must be invited by another iPhone user to attend, but there is no censoring. Research panels join with patients to answer questions that explain current research, common conditions, and build patient-led resources. This approach empowers patients and doctor researchers alike.