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While long Covid is an encompassing term, there is symptom overlap between long COVID and ME/CFS. Around 50% of people with long COVID meet the criteria for a d

While long Covid is an encompassing term, there is symptom overlap between long COVID and ME/CFS. Around 50% of people with long COVID meet the criteria for a diagnosis of ME/CFS. https://www.nature.com/articles/s41577-023-00904-7 https://www.nature.com/articles/s41577-023-00904-7 https://www.nature.com/articles/s41579-022-00846-2 https://www.nature.com/articles/s41579-022-00846-2 https://www.frontiersin.org/articles/10.3389/fneur.2023.1090747/full https://www.frontiersin.org/articles/10.3389/fneur.2023.1090... Mild ME/CFS is usually associated with around 50% reduction in daily functioning. Moderate will usually lead to people being housebound and intermittently bed-bound. Severe and very severe are associated with a level of suffering that is hard to imagine possible. An example of someone becoming severe is PhysicsGirl - Dianna Cowern. https://youtu.be/vydgkCCXbTA https://youtu.be/vydgkCCXbTA The associated severe dysautonomia means that people are unable to sit or stand and often they can not eat or digest. They may require intravenous nutrition. Regrettably there are cases where the disease has not been treated appropriately and young people have died as a result. A recent example is Maeve Boothby-O'Neill and her father Sean O'Neill wrote in The Times with an interview with Maeve's Mother by Dr David Tuller. https://www.thetimes.co.uk/article/my-daughter-couldnt-be-saved-but-theres-hope-for-other-me-patients-j7lbgg68k https://www.thetimes.co.uk/article/my-daughter-couldnt-be-sa... https://www.codastory.com/waronscience/chronic-fatigue-syndrome-long-covid-unexplained-symptoms/ https://www.codastory.com/waronscience/chronic-fatigue-syndr...

haldujai 3y ago
Brandon describes slowly improving over ~1.5 years up to April 2023 when he was walking ~0.9 miles/day which so far is concordant with ME/CFS but where it gets discordant is that he progressed to multi-organ failure and death within 3 months. I'm not questioning whether he suffered from ME/CFS but mortality is not reported in the Stanford data or what I've heard described of the syndrome. It's hard to wrap my head around ME/CFS as he has described it being causative of organ failure. Did something happen? Is this a consequence of the therapeutic he tried? Organ failure in a 37 year old without a history of end-organ dysfunction or acutely inciting event like a toxicity is incredibly unusual.
- quenched 3y ago
  I agree it's hard to speculate: perhaps malnutrition and cardiac failure; maybe sepsis. Here are some relevant links — Life-Threatening Malnutrition in Very Severe ME/CFS (2021) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8070213/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8070213/ Caring for the Patient with Severe or Very Severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (2021) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8544443/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8544443/ There are not many mortality studies and few ME patients have had comprehensive autopsies — Mortality in patients with myalgic encephalomyelitis and chronic fatigue syndrome (2016) https://www.tandfonline.com/doi/full/10.1080/21641846.2016.1236588 https://www.tandfonline.com/doi/full/10.1080/21641846.2016.1... Causes of Death Among Patients With Chronic Fatigue Syndrome (2007) https://www.tandfonline.com/doi/abs/10.1080/07399330600803766 https://www.tandfonline.com/doi/abs/10.1080/0739933060080376... Somewhat harrowing reading is Whitney Dafoe's account of becoming extremely severe — Extremely Severe ME/CFS—A Personal Account (2021) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8145314/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8145314/

haldujai 3y ago

Brandon describes slowly improving over ~1.5 years up to April 2023 when he was walking ~0.9 miles/day which so far is concordant with ME/CFS but where it gets discordant is that he progressed to multi-organ failure and death within 3 months. I'm not questioning whether he suffered from ME/CFS but mortality is not reported in the Stanford data or what I've heard described of the syndrome. It's hard to wrap my head around ME/CFS as he has described it being causative of organ failure. Did something happen? Is this a consequence of the therapeutic he tried? Organ failure in a 37 year old without a history of end-organ dysfunction or acutely inciting event like a toxicity is incredibly unusual.

quenched 3y ago
I agree it's hard to speculate: perhaps malnutrition and cardiac failure; maybe sepsis. Here are some relevant links — Life-Threatening Malnutrition in Very Severe ME/CFS (2021) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8070213/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8070213/ Caring for the Patient with Severe or Very Severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (2021) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8544443/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8544443/ There are not many mortality studies and few ME patients have had comprehensive autopsies — Mortality in patients with myalgic encephalomyelitis and chronic fatigue syndrome (2016) https://www.tandfonline.com/doi/full/10.1080/21641846.2016.1236588 https://www.tandfonline.com/doi/full/10.1080/21641846.2016.1... Causes of Death Among Patients With Chronic Fatigue Syndrome (2007) https://www.tandfonline.com/doi/abs/10.1080/07399330600803766 https://www.tandfonline.com/doi/abs/10.1080/0739933060080376... Somewhat harrowing reading is Whitney Dafoe's account of becoming extremely severe — Extremely Severe ME/CFS—A Personal Account (2021) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8145314/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8145314/