[Thread]
“An Open Letter to the COVID-19 Long Hauler Community From a Person with ME/CFS” by @CortJohnson
healthrising.org/blog/2020/07/2…
1/n
#longhaulers #LongCovid #covid1in20 #COVIDー19 #COVID19 #COVID #MEcfs #CFS #MyalgicE #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #PwME
“An Open Letter to the COVID-19 Long Hauler Community From a Person with ME/CFS” by @CortJohnson
healthrising.org/blog/2020/07/2…
1/n
#longhaulers #LongCovid #covid1in20 #COVIDー19 #COVID19 #COVID #MEcfs #CFS #MyalgicE #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #PwME
2/n
“The ME/CFS community with its knowledgebase, its research findings, its doctors, advocates and the patients who have been through it all, has much to contribute to the long haulers.”
#LongCovid #COVIDー19 #longneglected #LonghaulersUnite #MyalgicEncephalomyelitis
“The ME/CFS community with its knowledgebase, its research findings, its doctors, advocates and the patients who have been through it all, has much to contribute to the long haulers.”
#LongCovid #COVIDー19 #longneglected #LonghaulersUnite #MyalgicEncephalomyelitis
3/n
“You should know – and may already very well know – that many doctors have reacted to this kind of illness by denying it, by downplaying it, or by calling it psychological.”
#longhaulers #LongCovid #COVIDー19 #COVID19 #COVID #MEcfs #CFS #MyalgicE #ChronicFatigueSyndrome
“You should know – and may already very well know – that many doctors have reacted to this kind of illness by denying it, by downplaying it, or by calling it psychological.”
#longhaulers #LongCovid #COVIDー19 #COVID19 #COVID #MEcfs #CFS #MyalgicE #ChronicFatigueSyndrome
4/n
“You may be shocked – as many of us have been – to find that being a formerly productive, healthy person doesn’t necessarily earn you anything at the doctor’s office – you may still not be believed.”
#longhaulers #LongCovid #COVIDー19 #COVID19 #COVID #MEcfs #CFS #MyalgicE
“You may be shocked – as many of us have been – to find that being a formerly productive, healthy person doesn’t necessarily earn you anything at the doctor’s office – you may still not be believed.”
#longhaulers #LongCovid #COVIDー19 #COVID19 #COVID #MEcfs #CFS #MyalgicE
5/n
“It’s true that some of you – hopefully most – will slowly work your way out of this. For some undetermined number, though, and probably not a small number, the situation may become permanent. Careers will disappear ... (contd.)"
#longhaulers #LongCovid #MEcfs #CFS #MyalgicE
“It’s true that some of you – hopefully most – will slowly work your way out of this. For some undetermined number, though, and probably not a small number, the situation may become permanent. Careers will disappear ... (contd.)"
#longhaulers #LongCovid #MEcfs #CFS #MyalgicE
6/n
(contd.) “… Friends will drop away. Marriages will come under strain. Finances will be problematic, and on top of that you’ll feel crappy or worse most of the time. Your world – already narrowed considerably – will stay that way.”
#longhaulers #LongCovid #MEcfs #CFS #Covid
(contd.) “… Friends will drop away. Marriages will come under strain. Finances will be problematic, and on top of that you’ll feel crappy or worse most of the time. Your world – already narrowed considerably – will stay that way.”
#longhaulers #LongCovid #MEcfs #CFS #Covid
7/n
“Having post-COVID-19 syndrome, or whatever you want to call it, is not like having diabetes/heart disease/asthma. There’s little research infrastructure set up to study you, no medical specialty for you to visit, & hardly any doctors that have experience treating you” contd.
“Having post-COVID-19 syndrome, or whatever you want to call it, is not like having diabetes/heart disease/asthma. There’s little research infrastructure set up to study you, no medical specialty for you to visit, & hardly any doctors that have experience treating you” contd.
8/n
(contd.) “…You’re not embedded in the medical system. That means it’s easy for you to get lost. To get passed on. To get forgotten. When a vaccine turns up in 6 months or so, & the coronavirus is pretty much handled in a year or so, the spotlight will likely be off” (contd.)
(contd.) “…You’re not embedded in the medical system. That means it’s easy for you to get lost. To get passed on. To get forgotten. When a vaccine turns up in 6 months or so, & the coronavirus is pretty much handled in a year or so, the spotlight will likely be off” (contd.)
9/n
(contd.) “…you will no longer be a news item – and the pull from the medical profession to treat you as an afterthought as they go back to studying heart disease, cancer, HIV and diabetes could be strong.”
#longhaulers #LongCovid #COVIDー19 #COVID #MEcfs #CFS #MyalgicE
(contd.) “…you will no longer be a news item – and the pull from the medical profession to treat you as an afterthought as they go back to studying heart disease, cancer, HIV and diabetes could be strong.”
#longhaulers #LongCovid #COVIDー19 #COVID #MEcfs #CFS #MyalgicE
10/n
"The problem is many hospitalized patients may have lung or organ damage which will obscure the disease process occurring in other post COVID-19 pts. If u haven’t been hospitalized but are still ill, u should know the source of your [symptoms] may not be being well studied"
"The problem is many hospitalized patients may have lung or organ damage which will obscure the disease process occurring in other post COVID-19 pts. If u haven’t been hospitalized but are still ill, u should know the source of your [symptoms] may not be being well studied"
11/n
“It’s critical that people who come down with the virus, but who are never hospitalized, and yet still fail to recover on their own – probably the majority of the long haulers – be enrolled in studies as well. For the most part, though, they are being ignored ... (contd.)”
“It’s critical that people who come down with the virus, but who are never hospitalized, and yet still fail to recover on their own – probably the majority of the long haulers – be enrolled in studies as well. For the most part, though, they are being ignored ... (contd.)”
12/n
“(contd.) ... That’s a very dangerous situation given the short shrift traditionally given to those with problems like fatigue, pain, cognitive issues, etc. If you haven’t been hospitalized doctors may think there was never anything really wrong with you.”
#LongCovid #COVID
“(contd.) ... That’s a very dangerous situation given the short shrift traditionally given to those with problems like fatigue, pain, cognitive issues, etc. If you haven’t been hospitalized doctors may think there was never anything really wrong with you.”
#LongCovid #COVID
13/n
"The tragic falls people with ME/CFS & now probably some people w/ COVID-19 are experiencing can only be described as Shakespearean ... We don’t need more decades long stories of people falling ill after an infection & never recovering ... It’s time to figure this thing out"
"The tragic falls people with ME/CFS & now probably some people w/ COVID-19 are experiencing can only be described as Shakespearean ... We don’t need more decades long stories of people falling ill after an infection & never recovering ... It’s time to figure this thing out"
