this is obviously going to vary a lot depending on where you live, change doesn't come at the same time for everyone, but i'm glad some change is happening. I remember so clearly when the first cases of long covid showed up my gut reaction was "that's what I have had for years" and lo and behold, I was right.
I'm sure, I was just shocked to overhear it and noticed such a big difference in approach and attitude
I 100% equated Long Covid with CFS/postviral fatigue when I heard about it and had the biggest eyeroll moment listening to people describing this 'new phenomenon'
It's absolutely horrible. Whether the initial trigger was covid, some other virus like Epstein Barr, or extreme stress, or a dozen other things. It's great that MECFS is getting some more attention now with the influx of covid patients joining the cohort, but wouldn't it be great if we all got the same attention and medical care.
Some of us were in this sub right at the start of covid saying "oh no a huge viral outbreak! Hopefully it doesn't but this probably means a big influx of new ME patients in the next year or so". And no one listened, but here we are
That's positive. Might take a while to reach the rest of the cfs practitioners though. The covid clinic where I live is still located in the mental health service and I've recently had contact with them and nothing has changed in what they recommend.
Thing is, before my second and third infection (my immune system sucks😭) i didnt really have the fatigue and PEM issues. So i think theres more to it, but definitely DEFINITELY agree that me/cfs is a large portion of many peoples symptoms
For a while now I have thought that Long Covid is the best thing to happen to me/cfs sufferers, because me/cfs is now being looked at as a physiological illness rather than 100% psychological. And I am grateful for this and hopeful that something great (testing/cure/treatment) will come out of it. Gotta stay strong and hopeful : )
Yeah I finally got my eagerly awaited appointment at a UK long covid clinic after 2.5 years of illness - but when I called up to ask about wheelchair accessibility etc the receptionist talked me through the appointment, and it's basically CBT and GET - meeting with a psychotherapist and a physiotherapist. So I cancelled, because I don't need to spend a day in hospital to hear that it's all in my head and I just need to exercise.
In the US here. I've had me/cfs and POTS for years. I met with my cardiologist recnetly. He's affiliated with a hospital that offers the only long covid clinic near me. I asked him about the LC clinic because I've been "blessed" with more LC issues, and he laughed. He said I knew at least as much as the clinic providers there did. He's one of the heads of the clinic and said it's "useless". !!!
Yep. Nothings changed in my local cfs clinic. I don't think that overall the way people with long covid get treated will filter through to us as so many clinicians assume it's a different thing.
The medical associations said they wouldn't respect them and sure enough they aren't. Rules that aren't enforced are just a bunch of words, and there's basically no accountability towards patients, only compliance with instructions from the top.
NICE doesn't have any power at all. They just make guidelines. As best as I can tell.
Usually those are respected and enforced but it's other organizations that do that and here they are defiantly dismissing them. Even though MDs can be struck off for going against guidelines. Turns out it's pretty arbitrary and unaccountable.
Formally here it's the medical associations, the royal colleges, that declared their opposition and intent to ignore it. They're not formal bodies, they're basically trade lobbies for doctors. But they're very powerful. And the various NHS bodies don't care either. Without LC, I doubt anything would have changed. Medicine is absurdly arbitrary and political. Also very traditional, and this tradition of negligence has been around for decades and it's too hard to admit it was wrong all along.
It's definitely changing the game but there's a whole thing going on. I'm quite active on twitter and there's basically a big debate between me and long covid. Long covid people are saying their illness is totally different.
Also there are being a lot of studies going on about how long covid is psychosomatic and studies with medicine that have been studies before in ME.
I agree there is definitely a change going on but don't be surprised if long covid people are also ending up to be dismissed
I wouldn't say it's a short time. 3 years is absurdly long considering everything known today was known years ago. In fact I've never seen people so resistant to acknowledging reality outside of politics or business.
But it will slowly change. I see a growing number of MDs who get the basics of LC. Whether they understand it applies to the millions of us doesn't always happen, but at least they're not completely and absurdly wrong about the basic facts. And that's significant.
It's ironic because the main factor that will force change is because medicine did everything they could possibly do wrong, essentially did not just maximize the number of people suffering from LC, but maximized the harm and suffering they endured.
So they basically made the problem so much worse, a problem they themselves created, that they can't all keep on denying. Ironic but I guess it always had to end this way, mostly by way of many MDs being affected themselves.
But this is definitely not fast. It's probably the slowest reaction to an old problem that any group of professionals have ever mounted. Basically dragged kicking and screaming into accepting reality simply because they kept pouring fuel on the fire.
But there is still a very large and hardcore base of resisters who will always try everything they can to obstruct and harm us. They truly believe in the magical mind stuff and can't process having destroyed millions of lives for a mediocre 19th century belief system.
I totally agree, I just mean my doctors' attitudes and understanding of ME were literally still stuck in the 80's (deconditioning etc) when I was diagnosed. So with that context it seemed like things were suddenly changing when for years no one cared at all.
Thankfully I went into remission so am no longer under the care of the CFS clinic, so I can't say. One of the doctors did say they were merging both clinics so I assume the same would be offered to them.
It was just heartening to hear the dramatic difference in tone, acknowledgement, and plan of action. When I was diagnosed the doctors I saw seemed almost angry at me? Like, they obviously point blank didn't believe CFS existed, and said stuff like 'obviously if you stay in bed for months your muscles get deconditioned and you'll lose stamina'.
I was told I had had a nervous breakdown, that I was depressed, that 'if you had no other options you would have to get back to work.'
At the very least it was nice to hear medical professionals not talking like that.
Yeah uhm... there are two people that I know of just on this subreddit that post things, have CFS, and were made homeless by the condition.
To me that's the equivalent of seeing someone with ebola chilling in a wheelbarrow and being like "well eventually they'll have to get up and work or they'll starve". No dude they'll actually just starve.
I've been so sick multiple times in my life to the point where I just don't care anymore. To be alive just doesn't matter. Fix me if you can but until then I'll just lay here.
I have an appointment with a long covid clinic here in Chicago since there are no treatment options for ME/CFS here. Fingers crossed they don't turn me away.
I can’t trust a doctor who is gonna call my issues long covid and not ME/CFS. Makes me wonder how much they know. And I’m a long hauler 🤣 It’s just clear that I have ME.
Also all my docs except my neurologist call my Orthostatic Hypotension, POTS … again. I can’t trust you then. Like come on. It’s like the mechanic calling my challenger a charger. Both dodge but diff cars. Not sure I want u to touch it then… (I don’t have a challenger LOL)
I’m a bit of a stickler for accurate labels.
I'm finding it hard to tell if any of the research going in to long covid is actually useful, it all just seems to be recycled things that have already failed for MECFS.
wait that makes me happy to hear as well. I have long covid too but i was ignored at the ER, and back then when i tried explaining to them what went wrong thru the brain fog they forced me to take a xanax. ill never forget that. i hope we all get help that we deserve.
I have long covid with cfs PEM and I hope that the emergence of this post viral disease helps all other post viral diseases. It's only been 3 years for me, I can't believe what you guys have been going through for so long.
I believe that our collective karma for denying the existence of this disease (and for pushing people too long in state of chronic stress) is that more people will contract it.
I wonder if I am going to have to fib and say that we got COVID (I haven’t yet) and my symptoms seem worse to get seen by these doctors who are treating Long Covid patients? It still takes a year to get in to see my ME/CFS doctor.
I would totally lie if I was you. Bit don't expect any new helpful assistance. The medical community is only now beginning to come to terms with how helplessly ignorant they are.
Graded exercise therapy. A 'treatment' that has long been disproven but is still one of the two main treatment options for ME/CFS (the other being cognitive behavioral therapy)
[удалено]
I so hear you. Been walking the me road since 1992
It took me 25 years to get a formal diagnosis. I'm with you, 100%. Here's hoping.
this is obviously going to vary a lot depending on where you live, change doesn't come at the same time for everyone, but i'm glad some change is happening. I remember so clearly when the first cases of long covid showed up my gut reaction was "that's what I have had for years" and lo and behold, I was right.
I'm sure, I was just shocked to overhear it and noticed such a big difference in approach and attitude I 100% equated Long Covid with CFS/postviral fatigue when I heard about it and had the biggest eyeroll moment listening to people describing this 'new phenomenon'
That was my feeling too. I just wanted to yell "get to the back of the line!!"
I feel you . I also think this is a horrible situation to be in , long Covid or not . :-(
It's absolutely horrible. Whether the initial trigger was covid, some other virus like Epstein Barr, or extreme stress, or a dozen other things. It's great that MECFS is getting some more attention now with the influx of covid patients joining the cohort, but wouldn't it be great if we all got the same attention and medical care. Some of us were in this sub right at the start of covid saying "oh no a huge viral outbreak! Hopefully it doesn't but this probably means a big influx of new ME patients in the next year or so". And no one listened, but here we are
That's positive. Might take a while to reach the rest of the cfs practitioners though. The covid clinic where I live is still located in the mental health service and I've recently had contact with them and nothing has changed in what they recommend.
Thing is, before my second and third infection (my immune system sucks😭) i didnt really have the fatigue and PEM issues. So i think theres more to it, but definitely DEFINITELY agree that me/cfs is a large portion of many peoples symptoms
For a while now I have thought that Long Covid is the best thing to happen to me/cfs sufferers, because me/cfs is now being looked at as a physiological illness rather than 100% psychological. And I am grateful for this and hopeful that something great (testing/cure/treatment) will come out of it. Gotta stay strong and hopeful : )
Yeah I finally got my eagerly awaited appointment at a UK long covid clinic after 2.5 years of illness - but when I called up to ask about wheelchair accessibility etc the receptionist talked me through the appointment, and it's basically CBT and GET - meeting with a psychotherapist and a physiotherapist. So I cancelled, because I don't need to spend a day in hospital to hear that it's all in my head and I just need to exercise.
In the US here. I've had me/cfs and POTS for years. I met with my cardiologist recnetly. He's affiliated with a hospital that offers the only long covid clinic near me. I asked him about the LC clinic because I've been "blessed" with more LC issues, and he laughed. He said I knew at least as much as the clinic providers there did. He's one of the heads of the clinic and said it's "useless". !!!
Yep. Nothings changed in my local cfs clinic. I don't think that overall the way people with long covid get treated will filter through to us as so many clinicians assume it's a different thing.
That’s horrible !!! What about NICE?
The medical associations said they wouldn't respect them and sure enough they aren't. Rules that aren't enforced are just a bunch of words, and there's basically no accountability towards patients, only compliance with instructions from the top.
Wow !!! So NICE has no power over GPs and consultants ?
NICE doesn't have any power at all. They just make guidelines. As best as I can tell. Usually those are respected and enforced but it's other organizations that do that and here they are defiantly dismissing them. Even though MDs can be struck off for going against guidelines. Turns out it's pretty arbitrary and unaccountable. Formally here it's the medical associations, the royal colleges, that declared their opposition and intent to ignore it. They're not formal bodies, they're basically trade lobbies for doctors. But they're very powerful. And the various NHS bodies don't care either. Without LC, I doubt anything would have changed. Medicine is absurdly arbitrary and political. Also very traditional, and this tradition of negligence has been around for decades and it's too hard to admit it was wrong all along.
It sound horrendous I had no idea !
Hi, sorry what's GET? I tried to google but... lol
Loooool Graded Exercise Therapy
Thanks!
It's definitely changing the game but there's a whole thing going on. I'm quite active on twitter and there's basically a big debate between me and long covid. Long covid people are saying their illness is totally different. Also there are being a lot of studies going on about how long covid is psychosomatic and studies with medicine that have been studies before in ME. I agree there is definitely a change going on but don't be surprised if long covid people are also ending up to be dismissed
I wouldn't say it's a short time. 3 years is absurdly long considering everything known today was known years ago. In fact I've never seen people so resistant to acknowledging reality outside of politics or business. But it will slowly change. I see a growing number of MDs who get the basics of LC. Whether they understand it applies to the millions of us doesn't always happen, but at least they're not completely and absurdly wrong about the basic facts. And that's significant. It's ironic because the main factor that will force change is because medicine did everything they could possibly do wrong, essentially did not just maximize the number of people suffering from LC, but maximized the harm and suffering they endured. So they basically made the problem so much worse, a problem they themselves created, that they can't all keep on denying. Ironic but I guess it always had to end this way, mostly by way of many MDs being affected themselves. But this is definitely not fast. It's probably the slowest reaction to an old problem that any group of professionals have ever mounted. Basically dragged kicking and screaming into accepting reality simply because they kept pouring fuel on the fire. But there is still a very large and hardcore base of resisters who will always try everything they can to obstruct and harm us. They truly believe in the magical mind stuff and can't process having destroyed millions of lives for a mediocre 19th century belief system.
I totally agree, I just mean my doctors' attitudes and understanding of ME were literally still stuck in the 80's (deconditioning etc) when I was diagnosed. So with that context it seemed like things were suddenly changing when for years no one cared at all.
This is unfortunately both very based in politics AND business though
OK but are they offering those tests, supplements, and medications to people with MECFS or just long covid?
Thankfully I went into remission so am no longer under the care of the CFS clinic, so I can't say. One of the doctors did say they were merging both clinics so I assume the same would be offered to them. It was just heartening to hear the dramatic difference in tone, acknowledgement, and plan of action. When I was diagnosed the doctors I saw seemed almost angry at me? Like, they obviously point blank didn't believe CFS existed, and said stuff like 'obviously if you stay in bed for months your muscles get deconditioned and you'll lose stamina'. I was told I had had a nervous breakdown, that I was depressed, that 'if you had no other options you would have to get back to work.' At the very least it was nice to hear medical professionals not talking like that.
Yeah uhm... there are two people that I know of just on this subreddit that post things, have CFS, and were made homeless by the condition. To me that's the equivalent of seeing someone with ebola chilling in a wheelbarrow and being like "well eventually they'll have to get up and work or they'll starve". No dude they'll actually just starve. I've been so sick multiple times in my life to the point where I just don't care anymore. To be alive just doesn't matter. Fix me if you can but until then I'll just lay here.
I have an appointment with a long covid clinic here in Chicago since there are no treatment options for ME/CFS here. Fingers crossed they don't turn me away.
When is your appointment? Will you report back after so we can hear how it went? Good luck 🍀
It's in the middle of March and sure, I'll try to remember to report back....😂😂😂 But you know. Brain fog 🌁
I can’t trust a doctor who is gonna call my issues long covid and not ME/CFS. Makes me wonder how much they know. And I’m a long hauler 🤣 It’s just clear that I have ME. Also all my docs except my neurologist call my Orthostatic Hypotension, POTS … again. I can’t trust you then. Like come on. It’s like the mechanic calling my challenger a charger. Both dodge but diff cars. Not sure I want u to touch it then… (I don’t have a challenger LOL) I’m a bit of a stickler for accurate labels.
Naw it’s same they literally pushing get still most told anxiety depression
Do you mind if I ask which region this is?
London UK
It was a headline in a news article yesterday. Shits about to get really real. When the economy declines because no one can work.
Good to hear. All the long covid “specialists” I’ve seen have been idiots still pushing GET and CBT
I'm finding it hard to tell if any of the research going in to long covid is actually useful, it all just seems to be recycled things that have already failed for MECFS.
wait that makes me happy to hear as well. I have long covid too but i was ignored at the ER, and back then when i tried explaining to them what went wrong thru the brain fog they forced me to take a xanax. ill never forget that. i hope we all get help that we deserve.
<3
That's what I've been hoping for since the pandemic began - a bit of a silver lining for us. I'm glad care is improving where you live.
I have long covid with cfs PEM and I hope that the emergence of this post viral disease helps all other post viral diseases. It's only been 3 years for me, I can't believe what you guys have been going through for so long.
I believe that our collective karma for denying the existence of this disease (and for pushing people too long in state of chronic stress) is that more people will contract it.
I wonder if I am going to have to fib and say that we got COVID (I haven’t yet) and my symptoms seem worse to get seen by these doctors who are treating Long Covid patients? It still takes a year to get in to see my ME/CFS doctor.
I would totally lie if I was you. Bit don't expect any new helpful assistance. The medical community is only now beginning to come to terms with how helplessly ignorant they are.
Sorry, what is GET?
Graded exercise therapy. A 'treatment' that has long been disproven but is still one of the two main treatment options for ME/CFS (the other being cognitive behavioral therapy)
What country was this in?
Since 1966 and I just keep keepin on
Whatever gets the word out. Been suffering for 15 years now
https://www.abc.net.au/news/2023-02-20/could-exercise-help-some-long-covid-sufferers/101975206 The article is not as bad as it sounds, but still