Brain fog, fatigue, nervous system abnormalities, headaches, and body aches. It's time these complaints were taken seriously. Psychosomatic? Novel research on long-COVID gives us another explanation.
"Chronic fatigue syndrome (CFS) / myalgic encephalomyelitis (ME)1 is, I think, likely a catch-all diagnosis that includes a vast number of other Post-Acute-Infectious Syndromes (PAISes), which are any long-term chronic symptoms triggered by an initial infection. "
I think that is accurate. Unfortunately, there is a great deal of confusion about what CFS, ME/CFS and ME refers to but I have found it helpful to understand that each of these labels have criteria that selects differing groups of patients. ME/CFS & CFS have more than one criteria attached to those labels. See my article here: https://colleensteckelmeiccinfo.substack.com/p/mecfs-is-an-umbrella-term
Clinical experts wrote a primer to help doctors understand that there is a recognizable disease of myalgic encephalomyelitis seen in multiple outbreaks since at least the 1930s that should be differentiated from the catch all diagnoses of CFS and ME/CFS.
From page ii:
"Our panel strongly recommends that only the name ‘myalgic encephalomyelitis’ be used to identify patients meeting the ICC because a distinctive disease entity should have one name. Patients diagnosed using broader or other criteria for CFS or its hybrids (Oxford, Reeves,
London, Fukuda, CCC, etc.) should be reassessed with the ICC. Those who fulfill the criteria have ME; those who do not would remain in the more encompassing CFS classification."
Unfortunately, the LC label also encompasses a variety of patient groups. We in the ME community have seen how this lumping of patients impedes research progress.
I just found you here, doc, and I will link to your newsletter in my own (which covers LC, ME/CFS, and other health conditions, with info and humor). Thank you for such thorough treatment of the available info on causes/treatments and history too.
I just wanted to point this out:
“I don’t fault patients for being willing to do anything to feel better, but new research into long-COVID might soon allow us to say “I believe you. I don’t know what’s wrong. We’re working on it.”
I urge docs not to wait for the research to utter these words. There’s no reason to wait to validate patients with these symptoms. After being gaslit by docs for the first half of 2020 around my persistent symptoms after COVID, the second half of 2020 had me finding docs who used the above language with me and it did wonders for helping me feel heard and understood. If some docs who could put ego and rigid medical dogma aside in 2020 could utter these words, every single doctor should be able to say them in 2024, given just how much research has already emerged.
Bess, thank you for this extremely interesting and hopeful essay. In 2010 or so, I was diagnosed with fibromyalgia - after years of suffering and multiple doctors who dismissed my symptoms. When there was first talk of long-covid, I identified with it 100% and I knew that there had to be a connection. I had swine-flu in 2008. It is wonderful that research is bringing this info to light and there is hope for CFS/Fibro/Etc sufferers. I look forward to your MRNA vaccine story.
I have dysautonomia. Not from covid but there are many overlapping symptoms so I know people that have long covid. I don't think I would look at it as any sort of gift. Maybe an unexpected side effect is that there's more research but definitely not a gift. So many patients already feel like guinea pigs 😪Many of my drs have pretty much said that the patients are more knowledgeable than they are because so little is known medically so it's on us to be the advocates and educators. It's a tough spot! Have you heard of stat health? They're offering some promising research and I'll be getting one of their devices this spring
I hadn’t heard of it but I just read their site, what a unique use of wearable. I’m a big fan of auto-data collecting! Would love to know if you find it useful
"Chronic fatigue syndrome (CFS) / myalgic encephalomyelitis (ME)1 is, I think, likely a catch-all diagnosis that includes a vast number of other Post-Acute-Infectious Syndromes (PAISes), which are any long-term chronic symptoms triggered by an initial infection. "
I think that is accurate. Unfortunately, there is a great deal of confusion about what CFS, ME/CFS and ME refers to but I have found it helpful to understand that each of these labels have criteria that selects differing groups of patients. ME/CFS & CFS have more than one criteria attached to those labels. See my article here: https://colleensteckelmeiccinfo.substack.com/p/mecfs-is-an-umbrella-term
Clinical experts wrote a primer to help doctors understand that there is a recognizable disease of myalgic encephalomyelitis seen in multiple outbreaks since at least the 1930s that should be differentiated from the catch all diagnoses of CFS and ME/CFS.
From page ii:
"Our panel strongly recommends that only the name ‘myalgic encephalomyelitis’ be used to identify patients meeting the ICC because a distinctive disease entity should have one name. Patients diagnosed using broader or other criteria for CFS or its hybrids (Oxford, Reeves,
London, Fukuda, CCC, etc.) should be reassessed with the ICC. Those who fulfill the criteria have ME; those who do not would remain in the more encompassing CFS classification."
Here is a link to that International Consensus primer: https://drive.google.com/file/d/1A0Bvtl4xRUkP3fEJSGMujdPaqQ1-QCIE/view
Unfortunately, the LC label also encompasses a variety of patient groups. We in the ME community have seen how this lumping of patients impedes research progress.
I just found you here, doc, and I will link to your newsletter in my own (which covers LC, ME/CFS, and other health conditions, with info and humor). Thank you for such thorough treatment of the available info on causes/treatments and history too.
I just wanted to point this out:
“I don’t fault patients for being willing to do anything to feel better, but new research into long-COVID might soon allow us to say “I believe you. I don’t know what’s wrong. We’re working on it.”
I urge docs not to wait for the research to utter these words. There’s no reason to wait to validate patients with these symptoms. After being gaslit by docs for the first half of 2020 around my persistent symptoms after COVID, the second half of 2020 had me finding docs who used the above language with me and it did wonders for helping me feel heard and understood. If some docs who could put ego and rigid medical dogma aside in 2020 could utter these words, every single doctor should be able to say them in 2024, given just how much research has already emerged.
Bess, thank you for this extremely interesting and hopeful essay. In 2010 or so, I was diagnosed with fibromyalgia - after years of suffering and multiple doctors who dismissed my symptoms. When there was first talk of long-covid, I identified with it 100% and I knew that there had to be a connection. I had swine-flu in 2008. It is wonderful that research is bringing this info to light and there is hope for CFS/Fibro/Etc sufferers. I look forward to your MRNA vaccine story.
Yes! I'll be curious to see how it goes
As a long covid sufferer, thanks for this well laid out article!
I hope some good treatments are available to you soon!
I have dysautonomia. Not from covid but there are many overlapping symptoms so I know people that have long covid. I don't think I would look at it as any sort of gift. Maybe an unexpected side effect is that there's more research but definitely not a gift. So many patients already feel like guinea pigs 😪Many of my drs have pretty much said that the patients are more knowledgeable than they are because so little is known medically so it's on us to be the advocates and educators. It's a tough spot! Have you heard of stat health? They're offering some promising research and I'll be getting one of their devices this spring
I hadn’t heard of it but I just read their site, what a unique use of wearable. I’m a big fan of auto-data collecting! Would love to know if you find it useful