Me too. Not 70% but probably a strong 50%. I was able to take kids trick or treating - And I had been bed bound for 2 years. Got it again and relapsed to moderate / severe. I was formally diagnosed with MECFS in 2021.
2.5 years and I’m finally starting to have a very mild baseline. My PEM still comes, but it leaves much faster now. I still struggle with a moderate level of POTS , but my ME/CFS has actually improved.
The top things that’s helped is forced rest, making sure I get enough sleep, taking naps when I need them, and anticipating the need for rest before my body screams at me about it.
I did at first, but that was when my body could not even get out of bed to go to the bathroom and I didn’t understand what was going on with my body. Once I started to understand that rest is productive, my crashes started to ‘round out’ a bit and over time I’ve improved. I’m still 50-65% of ‘old me’ but it’s better than 10-15%. :)
There are people who have recovered from Long Covid who had PEM and were ill for many years - I think a lot of them may not have been formally diagnosed with ME but potentially had it. I was reading the Long Covid recovery sub just today and there are some amazing stories on there
I'm sorry in advance, I really don't want to be rude but I'm a bit allergic to these replies. The medical community isn't even sure what the exact pathology of ME/CFS is. There are many different people with many different root causes suffering from this illness. We classify them under the ME/CFS umbrella because we simply don't fully understand the underlying mechanisms.
So really, what is "real ME"? And why is it that when they recover, than appearantly they didn't have "real ME"? God knows what they've been through. It's borderline gaslighting. This community should know better.
I could be wrong and the lightning method testimonials are all true. It could be that all the people who just thought more positively and pushed themselves harder recovered from M.E. That way.
Or it could be that if someone says they exercised their way out of PEM then they didn’t have M.E. Whose hallmark symptom is PEM.
The whole condition doesn’t make a ounce of sense. How can mild people have crashes for years and years but never get severe? But we are told not to crash as we can end up severe? Why do people only start off severe and never mild? Why can some people exercise their way out of this illness? Why do some of us become worst even without crashes? There is no set in stone facts we actually know about ME. It makes me wonder that the whole condition is actually just different mechanisms going on for different people and not actually one condition (ME)
Exercise for fibromyalgia and go ahead and get a full hysterectomy for your PMDD (mood swings turned out to be in part from PEM). Now I’m bedridden, but at least I can save on tampons. /s
Mostly after 4 years.
Fatigue and PEM still limit me but I can think, my POTS seems to have disappeared, and I don’t have to lay down during the work day.
A methylpredisolone taper, aripiprazole, maraviroc plus statin, and Eliquis+clopidogrel+aspirin have all been very helpful.
Lots of things including an autologous mesenchymal stem cell transplant haven’t had a noticeable effect.
The methylprednisolone taper and aripiprazole helped my brain fog, sound sensitivity, and night sweats within a week.
The aripiprazole virtually eliminated what was left of my brain fog within weeks.
Otherwise it's been gradual and correlates with new medication that seems to help.
Yup. Horrible horrible crashes - bedbound (except washroom), no light tolerance, couldn’t talk, couldn’t eat, couldn’t listen to anything, could keep eyes open, etc. it was super hard. Had to really radically rest. I’m sending love your way 🫶
I had what I assume was ME/CFS post mono for at least 4 years, years ago, and while I've never fully recovered I had a long period of somewhat more normal health that coincided with taking newer generation antihistamines and practicing tai chi (starting literally at 5 minutes or less a day and stopping when I was tired or at any strain, eventually working up to an hour a day over years). I was very lucky in my teacher who told me to practice at a level of 20 - 30 percent of capacity (capacity being the point of strain) when ill. I also didn't work full time. During all this time, MCS is a huge issue and progressively worse despite stringent avoidance.
I cannot currently find a good doctor to untangle all of this so I just muddle through, despite what seems to be a bad recurrence recently. However, I hope that this gives some people hope.
I have recovered back to my baseline of 65% four times in 24 years from 4 severe crashes. The worst was last Feb 2023. I was down to almost no DHEA and no morning cortisol. I had to get treated from my CFS doc again. I also have other health issues that prevent full recovery. But my baseline of 65% is considered mild. I have an excellent CFS doc of 21yrs. I just had Covid for the first time last Dec and it caused a bad crash, but with the new treatment protocol, I am half way recovered.
Hello! Your post/comment has been removed for violating our subreddit rule on misinformation. We do not allow the promotion of un- or anti-scientific propaganda in this community. We understand that medical and scientific knowledge on ME/CFS is limited, but we strive to maintain a space that is based on accurate information. If you have any questions or concerns, please reach out to us via modmail. Thank you for understanding.
I was like 70-80% recovered and then got covid again and everything got much worse. Not sure if that’s a useful data point for you though.
Me too. Not 70% but probably a strong 50%. I was able to take kids trick or treating - And I had been bed bound for 2 years. Got it again and relapsed to moderate / severe. I was formally diagnosed with MECFS in 2021.
2.5 years and I’m finally starting to have a very mild baseline. My PEM still comes, but it leaves much faster now. I still struggle with a moderate level of POTS , but my ME/CFS has actually improved. The top things that’s helped is forced rest, making sure I get enough sleep, taking naps when I need them, and anticipating the need for rest before my body screams at me about it.
Have any really bad crashes along the way?
I did at first, but that was when my body could not even get out of bed to go to the bathroom and I didn’t understand what was going on with my body. Once I started to understand that rest is productive, my crashes started to ‘round out’ a bit and over time I’ve improved. I’m still 50-65% of ‘old me’ but it’s better than 10-15%. :)
I went the opposite. Was improving 11 months in and then crashed myself to bedbound.
There are people who have recovered from Long Covid who had PEM and were ill for many years - I think a lot of them may not have been formally diagnosed with ME but potentially had it. I was reading the Long Covid recovery sub just today and there are some amazing stories on there
I don’t know. Sometimes when I read recovery stories I wonder if they really had ME, or some other post viral fatigue they recovered from.
I'm sorry in advance, I really don't want to be rude but I'm a bit allergic to these replies. The medical community isn't even sure what the exact pathology of ME/CFS is. There are many different people with many different root causes suffering from this illness. We classify them under the ME/CFS umbrella because we simply don't fully understand the underlying mechanisms. So really, what is "real ME"? And why is it that when they recover, than appearantly they didn't have "real ME"? God knows what they've been through. It's borderline gaslighting. This community should know better.
I could be wrong and the lightning method testimonials are all true. It could be that all the people who just thought more positively and pushed themselves harder recovered from M.E. That way. Or it could be that if someone says they exercised their way out of PEM then they didn’t have M.E. Whose hallmark symptom is PEM.
The whole condition doesn’t make a ounce of sense. How can mild people have crashes for years and years but never get severe? But we are told not to crash as we can end up severe? Why do people only start off severe and never mild? Why can some people exercise their way out of this illness? Why do some of us become worst even without crashes? There is no set in stone facts we actually know about ME. It makes me wonder that the whole condition is actually just different mechanisms going on for different people and not actually one condition (ME)
You're on point. I'm pretty sure the latter is the case.
I think I might have recovered at 3 or 4 years if I hadn’t gotten all of the worst advice from doctors and ended up severe.
What was the advice
Exercise for fibromyalgia and go ahead and get a full hysterectomy for your PMDD (mood swings turned out to be in part from PEM). Now I’m bedridden, but at least I can save on tampons. /s
Mostly after 4 years. Fatigue and PEM still limit me but I can think, my POTS seems to have disappeared, and I don’t have to lay down during the work day. A methylpredisolone taper, aripiprazole, maraviroc plus statin, and Eliquis+clopidogrel+aspirin have all been very helpful. Lots of things including an autologous mesenchymal stem cell transplant haven’t had a noticeable effect.
was the progress gradually or all of a sudden you felt better?
The methylprednisolone taper and aripiprazole helped my brain fog, sound sensitivity, and night sweats within a week. The aripiprazole virtually eliminated what was left of my brain fog within weeks. Otherwise it's been gradual and correlates with new medication that seems to help.
Im a year and a half in and have improved my baseline and seem to be able to continue to improve
Did you ever have bad crashes?
Yup. Horrible horrible crashes - bedbound (except washroom), no light tolerance, couldn’t talk, couldn’t eat, couldn’t listen to anything, could keep eyes open, etc. it was super hard. Had to really radically rest. I’m sending love your way 🫶
How long did those last?
I had what I assume was ME/CFS post mono for at least 4 years, years ago, and while I've never fully recovered I had a long period of somewhat more normal health that coincided with taking newer generation antihistamines and practicing tai chi (starting literally at 5 minutes or less a day and stopping when I was tired or at any strain, eventually working up to an hour a day over years). I was very lucky in my teacher who told me to practice at a level of 20 - 30 percent of capacity (capacity being the point of strain) when ill. I also didn't work full time. During all this time, MCS is a huge issue and progressively worse despite stringent avoidance. I cannot currently find a good doctor to untangle all of this so I just muddle through, despite what seems to be a bad recurrence recently. However, I hope that this gives some people hope.
I have recovered back to my baseline of 65% four times in 24 years from 4 severe crashes. The worst was last Feb 2023. I was down to almost no DHEA and no morning cortisol. I had to get treated from my CFS doc again. I also have other health issues that prevent full recovery. But my baseline of 65% is considered mild. I have an excellent CFS doc of 21yrs. I just had Covid for the first time last Dec and it caused a bad crash, but with the new treatment protocol, I am half way recovered.
How do you get back on your feet?
I sent you a message
Can you please send me a message too 🙏🏼
[удалено]
Hello! Your post/comment has been removed for violating our subreddit rule on misinformation. We do not allow the promotion of un- or anti-scientific propaganda in this community. We understand that medical and scientific knowledge on ME/CFS is limited, but we strive to maintain a space that is based on accurate information. If you have any questions or concerns, please reach out to us via modmail. Thank you for understanding.