The Patient-Doctor Partnership: Optimally Treating People with Long Covid and MECFS Across the U.S.

Solve welcomes three medical providers who will share their experience with treating Long Covid, ME/CFS, POTS, and dysautonomia patients across rural, urban, and suburban settings. Dr. Melanie Hoppers (co-founder and Chief Medical Officer at Physicians Quality Care, in Jackson, TN), Dr. William Pittman (co-director of the UCLA Long COVID Program), and Dr. Tiffany Walker (Principal Investigator for the Post-COVID Clinic Grady Hospital, Emory University School of Medicine) will share how integrating a broader understanding of associated post-infection diseases has informed their care, and offer insights into how patients and caregivers can best work together to create an optimal treatment experience.
This event is funded in part by an educational grant from Novavax.

[@slovokia]

@18:15 - Very important information.

[@slovokia]

One thing is clear: even if scientists determine the causes ME/CFS and develop treatments for it, it will be a very long time before a ME/CFS patient can go to a teaching hospital and quickly get competent and compassionate care. Most physicians do not care about this illness, do not take it seriously and have no interest in treating this patient community. Science will not change that reality, we need to figure out how to change how physicians are trained and socialized. Physicians attitudes towards illnesses are not formed primarily from scientific data.

[@thewonderinggentile]

My CFS/PMDD case went full blown by Jan 2021 after showing symptoms from at least 2018. I opted out of all vaccines a little bit before 2018 & then 2020 hit. I especially avoided covid vax due to the already tough, tough time I was having. We couldn't figure out if I was dealing the autoimmune issues at the core (hence tot the docs point why i was extra hesitate). Medicine can be great, but it can also make things worse. Since 2021 being back on pharmaceuticals, I've had at least 5 give me a hard time (SSRIS, NDRIS, Anti-pyschs, ADHD). Not surprised under this conditions much less that when I was young I had adverse reactions to meds due to med overdosing & generalized mismatching. The healthcare community needs to be honest that treatments aren't one-size fits all & for particular cases like ours you can really have 'burning house' syndrome on a different level if we're not careful.

[@ShadowMan66]

Have you tried medicinal cannabis oil? It relaxes you and also helps sleep and mood!

[@ShadowMan66]

The worst advice my 50 year old sister as a severe 30 year sufferer of ME/CFS but otherwise well and on no meds got was that her Dr reassured her that a Covid shot would not impact on her disease. Five days after her first Pfizer shot in 2021 she developed a full blown relapse of her worst ME/CFS symptoms since 1993. She was told she was just anxious but was found to have severe peripheral neuropathy, POTS, and rapid onset high blood pressure. She is still crippled and has to have home help 4 days a week. She wishes she never took her GP's advice now!

[@slovokia]

One thing you learn with ME/CFS is that physicians don’t really know what will happen to us if we take a given medication. There is no systematic effort to collect and track the response that ME patients have to medications / vaccines etc. Given that the medical profession has ignored ME/CFS so systematically over the years, if a vaccine caused 0.5% of recipients to get ME/CFS we would never know it because most physicians would never report it.

[@ShadowMan66]

@@slovokia My sister got sick in 1993 after 4 chest infections and then Epstein Barr virus. She went from a sporting, outdoors, happy confident young woman to a wreck within months. Now she still only has 5 good hours a day tops. Most Drs we have seen (with me as her advocate) have always been dismissive and labeled anxiety even when she had major symptoms like temperature, swollen glands, POTS, Autonomic instability and immune dysfunctions. To have recommended her this shot was insane but Drs were told for almost ALL conditions it was safe! They were totally captured by Big Pharma and the authorities so were scared to recommend anything else let alone an exemption! More pain and hurt thrown at those who had already been smeared and rubbished as having yuppie flu in the 1980/90s. Now she is called an anti-vaxxer for telling people she was vaccine injured!?? Yet she HAD the first one!

[@slovokia]

@@ShadowMan66It’s unfortunate but ME/CFS patients and their caregivers are on their own. Most of the medical community has no interest in us and doesn’t want to listen and learn from us. There needs to be a cultural shift in medical training to improve this situation. I suspect that that change will need to be forced on the medical community somehow.

[@ShadowMan66]

@@slovokia Much love and best wishes to you.🌻 Drs say that now Long-Covid is similar to ME/CFS there may be advances in care for people suffering but I remain skeptical! Is long covid a post-viral condition like ME/CFS or is it damage from the vaccines? Long Covid 'seems' to resolve after a short time whereas ME/CFS can last for decades or lifetime. Much doubt as to where Long Covid will end up?

[@shawnaford5540]

I am interested in the app. What is it called?

[@SolveME]

Solve Together. Learn more here: solvecfs.org/research/solve-together/

[@vaughnodonnell609]

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