To anyone out there. I have CFS. Please know that it can be very hard in the first two years. However, many fully recover. Be kind to self. Know that it is 'NOT YOUR FAULT ' Rest, eat, healthy, meditate or listen to soothing music and rest without guilt! Never push yourself. Pace! You are so brave and you can improve. Be the Captain of your care. No one else can understand it as well as you. You've got this. Much love ❤
I don't think if you've read the book Osler's Web or much of anything by David Bell, Paul Cheney or Daniel Peterson, the docs calling in the CDC during the Incline Village epidemic, that you would even consider CFS much of anything besides a made-up diagnosis by the CDC in order to avoid having to spend research money on myalgic encephalomyelitis back when the CDC was under the tutelage of William Reeves. I see it states on my phone your post is from 2 years ago but at any rate, by 10/22, the new ICD code has now been changed to G93.32 and is now inclusive of both long covid as well as MECFS. Unfortunately the CFS addition has continued to stick but as far as the WHO is concerned, myalgic encephalomyelitis has been listed as a neurological illness called ME since 1969. It sounds from what I hear that it is currently thought more folks with post viral fatigue syndromes from covid tend moreso to have some sort of recovery after that vs ME from other viruses and also certain bacterial illnesses as well but has there really even been enough time to determine that for a lot of them? Not really. For folks like me stricken overnight back in 2004, we need to focus on management of what we've got by very judicious pacing which is tedious, noting the number of minutes or hours we're able to tolerate of feet on floor activities, somehow managing to find medical personnel who understand us, and then most of all to keep ourselves educated in order to be able to educate our own physicians who still do not know anything or much now in 2024 about G93.32 plus maintaining a positive attitude by finding things we are in fact able to do while being semi-recumbent for 90% of the day. Really not sure it's a good idea just to give people hope for the sake of doing so if that hope is not even accurate as there are other ways to manage what you are given.
Dr Bateman has done a great presentation as always. I've had ME/CFS for many years and I find her presentations really useful. Long haulers: resting and pacing are vital to managing your illness. It's hard as hell to do consistently, but so important!
Great presentation and info. I try to tell people how not to underestimate long covid but not a lot listen :( Presentation feedback: Just please be careful next time to not use a white background. Most of us have are sensitive to light and eyes feel like burning or can cause a headache/migraine. For bright slides you can't edit easily, try to use bigger fonts or zoom up the pictures/data cause many of us also have blurry vision and details take more time to make out or because (like me) if using a screen dimmer due to the white background, small fonts are hard to read. Thank you!
Did we know at what tissue temperature did SARS COV2 better replicate? At TWiV Nr 659 at min29 Christian Drosten,,escape,, this information.He indicate very low tissue temperature. Did SARS COV2 infection induce persistent infection? Did SARS COV2 infection induce low temperature agglutinine?
To anyone out there. I have CFS.
Please know that it can be very hard in the first two years. However, many fully recover.
Be kind to self. Know that it is 'NOT YOUR FAULT ' Rest, eat, healthy, meditate or listen to soothing music and rest without guilt! Never push yourself. Pace!
You are so brave and you can improve. Be the Captain of your care. No one else can understand it as well as you.
You've got this. Much love ❤
Thank you ❤️🙏❤️
@@jojogurl83021 most welcome 🙏
I don't think if you've read the book Osler's Web or much of anything by David Bell, Paul Cheney or Daniel Peterson, the docs calling in the CDC during the Incline Village epidemic, that you would even consider CFS much of anything besides a made-up diagnosis by the CDC in order to avoid having to spend research money on myalgic encephalomyelitis back when the CDC was under the tutelage of William Reeves. I see it states on my phone your post is from 2 years ago but at any rate, by 10/22, the new ICD code has now been changed to G93.32 and is now inclusive of both long covid as well as MECFS. Unfortunately the CFS addition has continued to stick but as far as the WHO is concerned, myalgic encephalomyelitis has been listed as a neurological illness called ME since 1969. It sounds from what I hear that it is currently thought more folks with post viral fatigue syndromes from covid tend moreso to have some sort of recovery after that vs ME from other viruses and also certain bacterial illnesses as well but has there really even been enough time to determine that for a lot of them? Not really.
For folks like me stricken overnight back in 2004, we need to focus on management of what we've got by very judicious pacing which is tedious, noting the number of minutes or hours we're able to tolerate of feet on floor activities, somehow managing to find medical personnel who understand us, and then most of all to keep ourselves educated in order to be able to educate our own physicians who still do not know anything or much now in 2024 about G93.32 plus maintaining a positive attitude by finding things we are in fact able to do while being semi-recumbent for 90% of the day.
Really not sure it's a good idea just to give people hope for the sake of doing so if that hope is not even accurate as there are other ways to manage what you are given.
Dr Bateman has done a great presentation as always. I've had ME/CFS for many years and I find her presentations really useful. Long haulers: resting and pacing are vital to managing your illness. It's hard as hell to do consistently, but so important!
You need to add inner ear inflammation and dizziness! I’ve been diagnosed with meniers post Covid!
Great presentation and info. I try to tell people how not to underestimate long covid but not a lot listen :(
Presentation feedback: Just please be careful next time to not use a white background. Most of us have are sensitive to light and eyes feel like burning or can cause a headache/migraine. For bright slides you can't edit easily, try to use bigger fonts or zoom up the pictures/data cause many of us also have blurry vision and details take more time to make out or because (like me) if using a screen dimmer due to the white background, small fonts are hard to read. Thank you!
Did we know at what tissue temperature did SARS COV2 better replicate?
At TWiV Nr 659 at min29 Christian Drosten,,escape,, this information.He indicate very low tissue temperature.
Did SARS COV2 infection induce persistent infection?
Did SARS COV2 infection induce low temperature agglutinine?