I think it's shitty that it took A PANDEMIC for research like this to be done.
But besides that I think that it's really exciting. Like... We know more now than we did a year, a decade, etc ago. And the timeline just appears to be speeding up.
It makes me hopeful that actual progress might be made towards (at the very least) and explanation if not some treatment.
Can I just say I’m sorry? Like really fucking sorry.
When I was a kid my best friends mom had (and still has) CFS. Because it was such an unknown disease, AND if you looked it up some sources would say it was fake, AND because she was overweight (yes I thought the whole “just exercise thing” would help her), I believed it was either fake, or the fault of poor health habits. I never said I thought it was fake out loud, just thought it.
All these years later and me and my family are reaping what we’ve sown. I’ve since reconnected with my childhood friend, and therefore his mom by proxy. Her and I talk about CFS when we see eachother. It kills me to think that I was one of the people who cause us so much pain and distress because of ignorance. I’m sorry that CFS is only getting attention because of people like me who got sick from Covid. At least there’s a chance that we’ll all get some relief in the next few years.
I saw a meme today that said, “People will literally treat you like an outcast when you're chronically ill then go straight to you for support when they experience a health issue themselves.”
Many of us have been less than accepting of others due to our lack of understanding. Now, I always assume I don’t know what someone else is experiencing, and I give them the benefit of the doubt.
Yes, I both resent and admire the sense of entitlement that LCers have, because their illness is REAL and they DESERVE! an effective treatment. And I'm grateful for it because it has led to all this research, but pissed off by how invalidating many (though not all) LCers have been to CFSers over the last few years.
Now that many LCers are starting to realize that they are actually part of our community, the dynamics are changing and we are seeing less negative judgment of CFS or outright ignoring of our existence. And we are seeing it in research, too. Over the last few months, I've seen more articles than ever talking about how we can and should advance ME/CFS research now.
At the end of the day, all we can do is keep moving forward. So welcome. Don't worry if you misjudged someone in the past. Raise your voice to advocate for all of us now (unless it gives you PEM). This is a hard illness to live with and can be very isolating, so I really appreciate any solidarity with and membership in our community.
when I was a kid somebody told me CFS is fake. We accept that explanation because it’s the path of least resistance, less scary, and because we get to think highly of ourselves for being superior. I think the dismissal of CFS happens quickly and on a subconscious level. Therefore I don’t think you can blame yourself for being one of those people. Doctors don’t have the same excuse though
Don't feel too bad. You didn't know any better. Don't internalise that kind of guilt. It won't help anyone going forward. You didn't know any better. Now you do, and armed with that knowledge you are doing things differently than you did before. That's really all we can hope for. For people like you to accept that what is unknown does still exist.
I'm glad you're getting to talk to your mum again.
Tbh me/cfs research was picking up in the 2010s before the pandemic. Yes the pandemic has made it even faster, and yes it's shitty this research wasn't happening 50 years ago. But let's be glad it's happening now.
Patient: "I'm here to hopefully try the newly developed long-COVID treatment. I've had CFS for twenty years."
Doctor: "Oh. When did you have COVID?"
Patient: "I haven't had COVID, but thought that this new treatment might help?"
Doctor: "Have you tried to exercise more, or maybe a sleep study? You might just be depressed."
Yeah and this is why I had my rheumatologist include “long-covid” on my chart. I’ve had ME/CFS for 7.5 years, but did get Covid once and have felt worse since. So just added it in case if it’s “only” available to long covid…
Half of the research is just recycled MECFS research. Especially the studies finding out about EBV reactivation.
The actual new and novel stuff, exciting.
Considering long covid is just CFS (a post-viral syndrome) with a definitive cause, I look forward to new treatment options. Frustrates me that it's called something else and it took this much to get more research though.
That’s not JUST what it is. I now have MCAD, activated EDS, Dysautonomia, mitral valve leak, enlarged thymus, 14 thyroid nodules, tons more stuff AND I have CFS/ME
For perspective, hiv research got 7 billion this year from the us gov.
Mecfs has been described by the people studying it as the most complex disease, a disease that contains almost every other disease process within it. It’s one of medicines final frontiers. And it’s the least prioritized illness when it comes to funding, most research on it is patient funded still.
It’s super fucked up that they’re letting us suffer and change is going to be so gradual and slow. We need a major social movement to get the kind of funding and attention that we need
How much was CFS getting three years ago? I know it's not much in the grand scheme of things. But we're in an infinitely better spot than we were a few years ago.
As of 2016, according to mecfs specialist Nancy Klimas, the US government spends 6x as much money on researching male pattern baldness than they do on researching
ME/CFS.
One year of aids research money = 600 years of cfs research money
The US government spends more on research for MS in one
year than they've ever spent on cfs
research ever, cumulatively.
Until long covid came along the funding stayed about the same. But we are still so, so, underfunded
I'm cautiously hopeful, but I don't believe long Covid research will automatically benefit ME/CFS. That will happen only if people in leadership positions decide to connect the two. It could be that a treatment for LC is found but we never get it because it's only approved for LC. Or it might be something Covid-specific that doesn't help us.
But I try to be optimistic because there is lots of ME/CFS advocacy now.
Sad it took a pandemic to get here, and sad for everyone who has long covid (and of course ME/CFS). But happy something might finally be happening. Nobody should have to live with this horrible illness.
I gave up hope 30 years ago. I have resentment toward medical science that it took a pandemic to even show an interest. But I have no resentment, only empathy, for the people with long Covid.
I have more hope about research, but not sure if it will get to some of us in time. It pains me to see how many more had to get sick for this to be taken seriously
I haven't had covid, but the pandemic is when I started having cfs. So I'm really lucky that I haven't had to be ignored for as long, and am riding the long covid wave in terms of research etc.
I think it's pretty disappointing that it took a pandemic to get this apparent burst of recognition, but it's understandable. In a similar way, I used to not give a single thought for people with depression, and it wasn't until I got it years ago and was like "oh, other people live like this??" so I'm frustrated with myself because I didn't care about this issue until it applied to me, but I can't change how I used to be I can only change myself now. So in the same way, it's frustrating it took a pandemic, but I'll *take it.*
Even though COVID took me back to zero, I am slightly glad to have had it because now I can say I have long COVID instead of an illness most people never heard of.
I'm hopeful about the new research but fear like anything that doctor's can't find a specific biomarker for, or have consistent results with, it may also get dismissed eventually as "in your head".
I got CFS at the beginning of the pandemic. I never tested positive for COVID, but I always say I have long covid. So that they take me seriously. That said, I think they are trying to reinvent the wheel. They are exploring and wasting precious dollars on treatments that have been proven to be worthless at best and detrimental at worse. But they don't look at CFS literature for help. They are "puzzled" by this "new disease"... (and here I'm rolling my eyes, I just can't put emojis, lol)
If they find biomarkers, it changes everything. Biomarkers>Identify Potential Drugs>>Pharma $'s>Trials.
Nothing gets the ball moving faster than locating a drug(s) to make money off of, sadly.
For some reason I don’t get any hope from it. I think it just seems more people are being diagnosed, or self diagnosing, but not coming any steps closer to getting an actual way to diagnose and prove it, for those who need to get things like disability. It’s just harder imo. I can’t wait til a day they find a way we can get diagnosed with a test. I have had high levels of ebv for a long time but that’s not a test for it either
To be honest CFS research is and has always been a pretty tedious and siloed world.
Each week new group claim a breakthrough - some that don't even make physiological sense and others that appear to contradict other groups. I firmly believe that when a definitive etiology is found most groups will be too busy peddling their own theory to notice.
When I hear horror stories about all of the really weird stuff that many Covid long haulers go through, it makes me grateful that my covid exposure "only" increased my ME/CFS symptoms from worrying to debilitating, and didn't come with any of the stranger symptoms. Covid is scary stuff.
Especially stuff like permanently ruined sense of smell/taste. Good tasting food is one of the few things I can still genuinely enjoy (even if I have to be careful with my diet, there's plenty of wonderful tasting stuff that's still healthy) and it would be much much harder to keep going if that was taken away.
99% of the research is a waste of time. The 1% that isn't, doesn't pan out in 100% of the cases.
The only valid conclusion is that the people in medical science are fucking stupid. This also coincides with my high school experience in that the smartest people didn't go on to study medicine.
Take for example LDN, which was published about in 2008 (!) by Stanford. Apparently, it does something and there is even a mechanism (involving hormones), but we are now in 2023 and still it's not being prescribed in clinical practice in a place with supposedly a developmental index above 0.9.
LDN apparently can change a person to become autistic, but CFS and fibromyalgia both have comorbidities with autism. So, how can it possibly work? Unless a lot of people don't actually have both.
Also, LDN was "invented" by patient groups, not by the scientists... So, all the great Stanford did was read a bunch of forums, collected some data and did an ANOVA in R. Sure, what a great "scientists". Give me a fucking break.
I think we can better hope for a First Contact and have them cure it, because humanity surely is not going to do it.
I think it's shitty that it took A PANDEMIC for research like this to be done. But besides that I think that it's really exciting. Like... We know more now than we did a year, a decade, etc ago. And the timeline just appears to be speeding up. It makes me hopeful that actual progress might be made towards (at the very least) and explanation if not some treatment.
Can I just say I’m sorry? Like really fucking sorry. When I was a kid my best friends mom had (and still has) CFS. Because it was such an unknown disease, AND if you looked it up some sources would say it was fake, AND because she was overweight (yes I thought the whole “just exercise thing” would help her), I believed it was either fake, or the fault of poor health habits. I never said I thought it was fake out loud, just thought it. All these years later and me and my family are reaping what we’ve sown. I’ve since reconnected with my childhood friend, and therefore his mom by proxy. Her and I talk about CFS when we see eachother. It kills me to think that I was one of the people who cause us so much pain and distress because of ignorance. I’m sorry that CFS is only getting attention because of people like me who got sick from Covid. At least there’s a chance that we’ll all get some relief in the next few years.
I saw a meme today that said, “People will literally treat you like an outcast when you're chronically ill then go straight to you for support when they experience a health issue themselves.” Many of us have been less than accepting of others due to our lack of understanding. Now, I always assume I don’t know what someone else is experiencing, and I give them the benefit of the doubt.
Gonna need that meme fo sho
My bad, it was in fact [a tweet](https://imgur.com/a/RmwnB0n).
Thanks I needed this to send my damn family
Yes, I both resent and admire the sense of entitlement that LCers have, because their illness is REAL and they DESERVE! an effective treatment. And I'm grateful for it because it has led to all this research, but pissed off by how invalidating many (though not all) LCers have been to CFSers over the last few years. Now that many LCers are starting to realize that they are actually part of our community, the dynamics are changing and we are seeing less negative judgment of CFS or outright ignoring of our existence. And we are seeing it in research, too. Over the last few months, I've seen more articles than ever talking about how we can and should advance ME/CFS research now. At the end of the day, all we can do is keep moving forward. So welcome. Don't worry if you misjudged someone in the past. Raise your voice to advocate for all of us now (unless it gives you PEM). This is a hard illness to live with and can be very isolating, so I really appreciate any solidarity with and membership in our community.
when I was a kid somebody told me CFS is fake. We accept that explanation because it’s the path of least resistance, less scary, and because we get to think highly of ourselves for being superior. I think the dismissal of CFS happens quickly and on a subconscious level. Therefore I don’t think you can blame yourself for being one of those people. Doctors don’t have the same excuse though
Don't feel too bad. You didn't know any better. Don't internalise that kind of guilt. It won't help anyone going forward. You didn't know any better. Now you do, and armed with that knowledge you are doing things differently than you did before. That's really all we can hope for. For people like you to accept that what is unknown does still exist. I'm glad you're getting to talk to your mum again.
Tbh me/cfs research was picking up in the 2010s before the pandemic. Yes the pandemic has made it even faster, and yes it's shitty this research wasn't happening 50 years ago. But let's be glad it's happening now.
Cures are better than treatments
I'll take literally anything at this point.
Me too - I'll take fucking anything at this point. I do believe treatments will come now post covid.
Your desperation could make you end up worse, we really need to push for a cure though, it would benefit everyone
Patient: "I'm here to hopefully try the newly developed long-COVID treatment. I've had CFS for twenty years." Doctor: "Oh. When did you have COVID?" Patient: "I haven't had COVID, but thought that this new treatment might help?" Doctor: "Have you tried to exercise more, or maybe a sleep study? You might just be depressed."
Yeah and this is why I had my rheumatologist include “long-covid” on my chart. I’ve had ME/CFS for 7.5 years, but did get Covid once and have felt worse since. So just added it in case if it’s “only” available to long covid…
I plan on doing this too if/when I get covid.
In which case I definitely had covid. (haven't yet, hope I won't ever - one weird virus in '01 was plenty, thanks)
So fucking true
Half of the research is just recycled MECFS research. Especially the studies finding out about EBV reactivation. The actual new and novel stuff, exciting.
Considering long covid is just CFS (a post-viral syndrome) with a definitive cause, I look forward to new treatment options. Frustrates me that it's called something else and it took this much to get more research though.
That’s not JUST what it is. I now have MCAD, activated EDS, Dysautonomia, mitral valve leak, enlarged thymus, 14 thyroid nodules, tons more stuff AND I have CFS/ME
Oh my. I'm so sorry
It’s great that there’s more research now but it feels like we are still getting crumbs and it’s just not enough
There's quite a significant overlap between Long Covid and CFS, so it may be helping the CFS community more than you think.
I think long covid is getting crumbs too though ahah
True, but to put things in perspective we have more than double the amount of funding we had just a year ago. Maybe more, actually.
Still crumbs in the world of medical research money
Hundreds of millions isn’t crumbs
For perspective, hiv research got 7 billion this year from the us gov. Mecfs has been described by the people studying it as the most complex disease, a disease that contains almost every other disease process within it. It’s one of medicines final frontiers. And it’s the least prioritized illness when it comes to funding, most research on it is patient funded still. It’s super fucked up that they’re letting us suffer and change is going to be so gradual and slow. We need a major social movement to get the kind of funding and attention that we need
How much was CFS getting three years ago? I know it's not much in the grand scheme of things. But we're in an infinitely better spot than we were a few years ago.
As of 2016, according to mecfs specialist Nancy Klimas, the US government spends 6x as much money on researching male pattern baldness than they do on researching ME/CFS. One year of aids research money = 600 years of cfs research money The US government spends more on research for MS in one year than they've ever spent on cfs research ever, cumulatively. Until long covid came along the funding stayed about the same. But we are still so, so, underfunded
I'm cautiously hopeful, but I don't believe long Covid research will automatically benefit ME/CFS. That will happen only if people in leadership positions decide to connect the two. It could be that a treatment for LC is found but we never get it because it's only approved for LC. Or it might be something Covid-specific that doesn't help us. But I try to be optimistic because there is lots of ME/CFS advocacy now.
Sad it took a pandemic to get here, and sad for everyone who has long covid (and of course ME/CFS). But happy something might finally be happening. Nobody should have to live with this horrible illness.
I gave up hope 30 years ago. I have resentment toward medical science that it took a pandemic to even show an interest. But I have no resentment, only empathy, for the people with long Covid.
I have more hope about research, but not sure if it will get to some of us in time. It pains me to see how many more had to get sick for this to be taken seriously
It frustrates me with how many more people will age or die before research will get to them, myself likely included
I haven't had covid, but the pandemic is when I started having cfs. So I'm really lucky that I haven't had to be ignored for as long, and am riding the long covid wave in terms of research etc. I think it's pretty disappointing that it took a pandemic to get this apparent burst of recognition, but it's understandable. In a similar way, I used to not give a single thought for people with depression, and it wasn't until I got it years ago and was like "oh, other people live like this??" so I'm frustrated with myself because I didn't care about this issue until it applied to me, but I can't change how I used to be I can only change myself now. So in the same way, it's frustrating it took a pandemic, but I'll *take it.*
Hell yeah I’m hopeful! It’s unfortunate it took a pandemic to get us help but I think we’ll have some sort of treatment come out of it.
Even though COVID took me back to zero, I am slightly glad to have had it because now I can say I have long COVID instead of an illness most people never heard of. I'm hopeful about the new research but fear like anything that doctor's can't find a specific biomarker for, or have consistent results with, it may also get dismissed eventually as "in your head".
I got CFS at the beginning of the pandemic. I never tested positive for COVID, but I always say I have long covid. So that they take me seriously. That said, I think they are trying to reinvent the wheel. They are exploring and wasting precious dollars on treatments that have been proven to be worthless at best and detrimental at worse. But they don't look at CFS literature for help. They are "puzzled" by this "new disease"... (and here I'm rolling my eyes, I just can't put emojis, lol)
If they find biomarkers, it changes everything. Biomarkers>Identify Potential Drugs>>Pharma $'s>Trials. Nothing gets the ball moving faster than locating a drug(s) to make money off of, sadly.
For some reason I don’t get any hope from it. I think it just seems more people are being diagnosed, or self diagnosing, but not coming any steps closer to getting an actual way to diagnose and prove it, for those who need to get things like disability. It’s just harder imo. I can’t wait til a day they find a way we can get diagnosed with a test. I have had high levels of ebv for a long time but that’s not a test for it either
To be honest CFS research is and has always been a pretty tedious and siloed world. Each week new group claim a breakthrough - some that don't even make physiological sense and others that appear to contradict other groups. I firmly believe that when a definitive etiology is found most groups will be too busy peddling their own theory to notice.
When I hear horror stories about all of the really weird stuff that many Covid long haulers go through, it makes me grateful that my covid exposure "only" increased my ME/CFS symptoms from worrying to debilitating, and didn't come with any of the stranger symptoms. Covid is scary stuff. Especially stuff like permanently ruined sense of smell/taste. Good tasting food is one of the few things I can still genuinely enjoy (even if I have to be careful with my diet, there's plenty of wonderful tasting stuff that's still healthy) and it would be much much harder to keep going if that was taken away.
I swear, Covid is such a bizarre illness. My infection was mild (wasn’t hospitalized), but it felt really weird. Nothing like the flu.
99% of the research is a waste of time. The 1% that isn't, doesn't pan out in 100% of the cases. The only valid conclusion is that the people in medical science are fucking stupid. This also coincides with my high school experience in that the smartest people didn't go on to study medicine. Take for example LDN, which was published about in 2008 (!) by Stanford. Apparently, it does something and there is even a mechanism (involving hormones), but we are now in 2023 and still it's not being prescribed in clinical practice in a place with supposedly a developmental index above 0.9. LDN apparently can change a person to become autistic, but CFS and fibromyalgia both have comorbidities with autism. So, how can it possibly work? Unless a lot of people don't actually have both. Also, LDN was "invented" by patient groups, not by the scientists... So, all the great Stanford did was read a bunch of forums, collected some data and did an ANOVA in R. Sure, what a great "scientists". Give me a fucking break. I think we can better hope for a First Contact and have them cure it, because humanity surely is not going to do it.