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Stupidity is a more dangerous enemy of the good than malice. One may protest against evil. Against stupidity, we are defenseless. -Dietrich Bonhoeffer
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ALT A close up of a grey stone building at McMaster University. Ivy crawls across the building, changing color in fall. It appears green, orange, and red. The text reads, “The Sick Times. People with Long COVID demand pause of McMaster University clinical trial. By Simon Spichak. Reporting.”
ALT A petition signed by 1,700 people asks for a pause and independent review of a trial run by McMaster University researchers who want to test the Lightning Process. The Lightning Process is a pseudoscientific mind-body program to try to treat Long COVID that has been accused of exploiting people with Long COVID and related diseases. The trial is designed in part by a Lightning Process practitioner and prescreens participants for motivation using a questionnaire that isn’t validated for Long COVID. There are very few trials and little funding in Canada for Long COVID research, and advocates believe that studying the Lightning Process instead of pathobiological pathways is a waste of funding.
ALT Becky Ancira Robertson @AnciraBecky If HIV casted a lil wider net then they would have identified that it was not a ‘gay disease’ that you can only get through ‘gay sex.’ Although we can’t calculate an exact number of lives lost specifically because early HIV surveillance focused almost exclusively on gay men & this narrow framing delayed recognition of heterosexual, pediatric, transfusion-related, & global African epidemics, contributing to millions of preventable deaths. They pigeonholed the disease.
ALT yr buskined mistress & yr warrior love @rhymeswithvery Can somebody tell me by whom it was decided & when that PEM would be decoupled from ME, given to LC--& LC alone--& the ME differential & dx binned? Why? Why now? And where TF will it stop? And who TF will decide *that*?
ALT Support @patientled Clinicians and Researchers Long COVID and ME/CFS organizations ● American Academy of Physical Medicine and Rehabilitation ● ME/CFS Clinician Coalition ● Dr. David Putrino, Icahn School of Medicine at Mount Sinai ● Dr. Eric Topol, Scripps Research ● Dr. Ziyad Al-Aly, VA Saint Louis Health Care System ● Dr. Leonard Jason, DePaul University ● Dr. Steve Deeks, UCSF ● Dr. Michael Peluso, UCSF ● Dr. Monica Verduzco-Gutierrez, UT Health San Antonio ● Dr. Susan Levine ● Dr. Emily Pfaff, UNC Chapel Hill ● TODD DAVENPORT ● RECOVER PIs, including: ○ Dr. Tiffany Walker, Emory University ○ Dr. Sarah Jolley, University of Colorado ● Long COVID Alliance ● Solve ME ● #MEAction ● Body Politic ● Strategies for High Impact ● Long COVID Justice ● COVID-19 Longhauler Advocacy Project ● Open Medicine Foundation ● Massachusetts ME/CFS & FM Association ● PandoraOrg ● Pandemic Patients ● COVID-19 Health and Safety Taskforce ● The Long COVID Trials Initiative
ALT Members of the Coalition include: Dr. Lucinda Bateman – Internal Medicine, UT Dr. Alison Bested – Hematological Pathology, FL Dr. Hector Bonilla – Internal Med, Infectious Disease, CA Dr. Bela Chheda – Internal Med, Infectious Disease, CA Dr. Jennifer Curtin – Internal Medicine, CA Dr. Tania Dempsey – Internal Medicine, NY Dr. Theresa Dowell – Family Nurse Practitioner, AZ Dr. Donna Felsenstein – Infectious Disease, MA Dr. Stephanie Grach – Internal Medicine, MN Dr. David Kaufman – Internal Medicine, CA Dr. Nancy Klimas – Immunology, FL Dr. Anthony Komaroff – Internal Medicine, MA Dr. Charles Lapp – Internal Medicine, Pediatrics, NC Dr. Susan Levine – Infectious Disease, NY Dr. Benjamin Natelson – Neurology, NY Dr. Daniel Peterson – Internal Medicine, NV Dr. Richard Podell – Internal Medicine, NJ Dr. Irma Rey – Internal & Environmental Medicine, FL Dr. Ilene Ruhoy – Neurology, NY Dr. Maria Vera-Nunez – Internal & Integrative Med, SC Dr. Brayden Yellman – Rheumatolog
ALT From Dr. Tiffany Walker, Clinician & PI at Grady Post COVID Clinic “Post exertional malaise is a very prevalent and distinctive feature of Long COVID and other post-infectious illness that has been wellcharacterized in the literature… identification and tracking of PEM advances our understanding of Long COVID natural history and symptom trends. Additionally, documentation of PEM in the medical record facilitates improved large EHR-based retrospective cohort data and simulated real-world data clinical trials, by more accurately reflecting dominant symptoms experienced by Long COVID patients.”
ALT yr buskined mistress & yr warrior love @rhymeswithvery Can somebody tell me by whom it was decided & when that PEM would be decoupled from ME, given to LC--& LC alone--& the ME differential & dx binned? Why? Why now? And where TF will it stop? And who TF will decide *that*?
ALT Support @patientled Clinicians and Researchers Long COVID and ME/CFS organizations ● American Academy of Physical Medicine and Rehabilitation ● ME/CFS Clinician Coalition ● Dr. David Putrino, Icahn School of Medicine at Mount Sinai ● Dr. Eric Topol, Scripps Research ● Dr. Ziyad Al-Aly, VA Saint Louis Health Care System ● Dr. Leonard Jason, DePaul University ● Dr. Steve Deeks, UCSF ● Dr. Michael Peluso, UCSF ● Dr. Monica Verduzco-Gutierrez, UT Health San Antonio ● Dr. Susan Levine ● Dr. Emily Pfaff, UNC Chapel Hill ● TODD DAVENPORT ● RECOVER PIs, including: ○ Dr. Tiffany Walker, Emory University ○ Dr. Sarah Jolley, University of Colorado ● Long COVID Alliance ● Solve ME ● #MEAction ● Body Politic ● Strategies for High Impact ● Long COVID Justice ● COVID-19 Longhauler Advocacy Project ● Open Medicine Foundation ● Massachusetts ME/CFS & FM Association ● PandoraOrg ● Pandemic Patients ● COVID-19 Health and Safety Taskforce ● The Long COVID Trials Initiative
ALT Members of the Coalition include: Dr. Lucinda Bateman – Internal Medicine, UT Dr. Alison Bested – Hematological Pathology, FL Dr. Hector Bonilla – Internal Med, Infectious Disease, CA Dr. Bela Chheda – Internal Med, Infectious Disease, CA Dr. Jennifer Curtin – Internal Medicine, CA Dr. Tania Dempsey – Internal Medicine, NY Dr. Theresa Dowell – Family Nurse Practitioner, AZ Dr. Donna Felsenstein – Infectious Disease, MA Dr. Stephanie Grach – Internal Medicine, MN Dr. David Kaufman – Internal Medicine, CA Dr. Nancy Klimas – Immunology, FL Dr. Anthony Komaroff – Internal Medicine, MA Dr. Charles Lapp – Internal Medicine, Pediatrics, NC Dr. Susan Levine – Infectious Disease, NY Dr. Benjamin Natelson – Neurology, NY Dr. Daniel Peterson – Internal Medicine, NV Dr. Richard Podell – Internal Medicine, NJ Dr. Irma Rey – Internal & Environmental Medicine, FL Dr. Ilene Ruhoy – Neurology, NY Dr. Maria Vera-Nunez – Internal & Integrative Med, SC Dr. Brayden Yellman – Rheumatolog
ALT From Dr. Tiffany Walker, Clinician & PI at Grady Post COVID Clinic “Post exertional malaise is a very prevalent and distinctive feature of Long COVID and other post-infectious illness that has been wellcharacterized in the literature… identification and tracking of PEM advances our understanding of Long COVID natural history and symptom trends. Additionally, documentation of PEM in the medical record facilitates improved large EHR-based retrospective cohort data and simulated real-world data clinical trials, by more accurately reflecting dominant symptoms experienced by Long COVID patients.”
ALT Todd Davenport @sunsopeningband Totally happy to be wrong. It's how we learn. 😊 Here's a short list: * Long Covid * MCAS * hEDS * Craniovertebral instabilities * Chronic migraine * Chronic/post-acute Lyme disease * Dysautonomia/POTS * Gulf War Illness * Toxic mold exposure * Vaccine injury * Cancer fatigue 10:24 AM · Mar 7, 2023