Long COVID Has Forced a Reckoning for One of Medicine’s Most Neglected Diseases

  1. Been suffering from it since I was ten. I cannot tell you the trauma it's caused me, because it is incalculable. Not just from the condition, but how people treated me. Even after my diagnosis there was no help and little understanding. I'm lucky in that I don't live in an abusive situation, but there are so many of us that do who recieve no help.

  2. Please get an accurate test for Lyme disease and also look into supporting mitochondria. I was diagnosed with chronic fatigue syndrome at one point, turned out to be Lyme disease. When it was exhausting to just dress myself, taking PQQ supplement changed my life.

  3. Me/cfs/long Covid miserable illness. I can attest as I have had to pause my life completely. No treatments available, you’re on your own.

  4. It took decades for migraines to be taken seriously, to the point where people don't equate it to "just a headache, take an aspirin". That's with purported ~10% of the population.

  5. I’m hoping that if nothing else, Long Covid at least puts enough of a spotlight on post-infection/CFS-related stuff that we get some research on it.

  6. An ME/CFS sufferer, Jennifer Brea, made a film called Unrest about her experience that also profiles other heartbreaking cases around the world. I believe it's still on Netflix.

  7. Interestingly her health improved dramatically after she was diagnosed with CCI (Craniocervical instability) and had treatment for it. After she argued that the pandemic would cause many more cases of ME/CFS she ended up catching Covid in the first wave herself and getting Long Covid.

  8. Long Haul Lyme patient here. Went from 21 and full of life to bedridden for years. Ive gotten some small function back but everday is a battle to not kill myself. Being gaslit by the medical community for years is what they’ll have to reckon with.

  9. Same here. I was killing it at life, nothing could stop me, then suddenly I couldn't get out of bed, or go to work, or go to class, couldn't lift my arms or my head most days. I was treated for Lyme as well as babesia and bartonella, and I got quite a bit better. I'm still struggling hard, but not near as hard as before. It was the babesia that was really killing my energy levels. I took a month of anti-malaria medication for that. One of these was also causing a chronic low-level lung infection that had been diagnosed as "exercise-induced asthma" for over a decade. I tried multiple asthma medications whenever I was having an attack, and nothing helped. I would also get bronchitis several times a year, and pneumonia once as well. After the Lyme and such treatments, my asthma is completely cured. Haven't had an attack or shortness of breath since. But the fatigue is constant, at about 50% of what it was when I was really sick. I'm always told "exercise, eat well!" Which I do. I FUCKING DO. IT DOESN'T HELP, GODDAMMIT. ENOUGH WITH THE YOGA SUGGESTIONS.

  10. How did it develop. I just got lyme and the docs basically said "you took the antibiotics you are good" and that was that. I have no idea of im fine or not.

  11. Post treatment Lyme is for sure real, with data and evidence etc. chronic Lyme on the other hand is often neglected because we can’t find any sign of persistent bacterial infection, nor immune markers to signal any persistent infection. Its very mysterious

  12. Fibromyalgia sufferer here: I'm so pleased our illnesses are finally being taken into consideration, but for fuck's sake it shouldn't have taken a global pandemic just to get people to notice we exist.

  13. So totally agree, we'll still be swept under the rug. Maybe we will get answers by proxy considering so many symptoms are similar.

  14. Thank you. I've lost everything due to this disease. Losing my career hurts, losing most of my hobbies hurts more, but the loss of relationships hurts me the most. I'm barely in touch with my family, I have no friends, and I've never had a partner due to this disease. It's hard to socialize when you can't concentrate well enough to write a shopping list.

  15. Ed Yong is such a good science writer, and seems like one of the few who actually LISTEN to patients. Really happy he’s diving further into the ME/CFS side of things.

  16. PoTS is also a chronic illness many people are developing as a result of covid. Here’s hoping that one day somebody with CFS, PoTS, or any other chronic illness can walk into an appointment without being made to feel like their symptoms are nothing more than anxiety.

  17. It has definitely costed the economy lots of money as people who had Covid or have struggled with Covid long (myself included) just get tired more easily. I feel like before the past 2 years I could work at least 2-3 hours more a day than I do now without getting tired. Nowadays I still work but I get tired and stressed out way faster.

  18. A study last year looked at the smell capabilities of people who had been infected with Covid and recovered. A small percentage had lost all or most smell and were aware of it, however a whopping 85% of all the people tested had damaged smell and most were unaware. People only really noticed loosing smell if it was almost completely gone or totally gone, but having 9 out of 10 people with damaged smell is really bad and it shows that almost everyone is being impacted by Covid long term a little bit.

  19. I have had cfs for 20 years I got Covid. I thought my cfs was bad before. Boy was I wrong. 10 mins an hour is about the energy I have to do anything.

  20. I already have chronic fatigue before the pandemic. I haven’t caught covid yet because I’m so scared of it. If I get covid and my fatigue gets WORSE I’m going to go apeshit with what little energy I have left

  21. And yet the CDC still misclassifies Lyme disease, an epidemic they caused in such misclassification... long lasting infections and post-infection illnesses related to inflammation or autoimmunity often share threads with chronic fatigue syndrome or are the underlying cause. Maybe now these thought leaders, who are inept and weak scientists/MDs, will stop being looked at as the end-all-be-all for MDs abroad... probably not, but its a hope we all should have.

  22. Whatever good science these agencies do, it often gets steamrolled by the policy arms of the agency that are beholden to politics, often outside of their domains, whether it aligns with the science or not.

  23. The medical industry wouldnt even acknowledge beta thalassemia had real symptoms until they came up with a five million dollar treatment for those symptoms.

  24. November 2nd, 2020 was the last day I was a normal functioning adult. Since that day I've struggled to stay on my feet for more than 40 minutes without literally starting to shake, completely drained of energy. I've been unable to focus enough to do literally anything.

  25. Did you have post exertional malaise / chronic fatigue stuff from it? Curious if that is commonly resolving for people or if most people recovering from Long Covid are dealing with other symptoms that are not PEM.

  26. Screw CFS. Those of us that have been suffering with congenital Anosmia finally have our moment where people aren't laughing at us and jamming shit under our noses while going, "Can you smell this? Can you smell THIS? Well why the fuck not?!?!"

  27. There’s a great CFS sub here for anyone going through this. Also highly recommend the Health Rising site for research.

  28. most people with me/cfs can't even do a one man job in their salad days of youth, even if they drive, even on a perfect late summer afternoon. I fail to see what your comment has to do with anything.

  29. I have long covid. I had covid the first week of this year and it activated an autoimmune disease. It really sucks and the worse part is that people look at you like you are crazy/lazy.

  30. I work for a workers comp attorney and we have had a few long covid cases at our office. Couple others I know personally have some lingering complaints as well.

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