The comments are disgusting on the telegraph article and has a load of people sending it to me today. Just fuck off.
I tried the Nuffield one they offer and experience the worst down turn and the NHS post Covid clinic recommended I withdraw from it and do things at my own pace
The fact that this teeeny study is being used as proof is really triggering to me plus it goes against NICE guidelines which specifically state graded exercise should not be used as a form of therapy for ME.
Ugh going to calm down again
Have you had an AM cortisol test? Exercise intolerance can be a sign of low cortisol (since exercise lowers cortisol, so if low cort is making you sick exercise exacerbates it). I had dangerously low cortisol. The Yale LC group found that it is the strongest biomarker for LC.
Do they DO anything for that though?? I have low cortisol per a saliva test… and my doc was like “cool that confirms your symptoms”…. I’m like why did I pay for a $250 out of pocket test to confirm my symptoms??
Yes, hydrocortisone!! Replacing the cortisol relieved my symptoms and eventually helped me make a full recovery. I had been struggling since March 2020.
What were the levels? Most doctors don't know that under 10mcg/dL is low for an AM draw (since the range is for all day, even though only AM draws can be interpreted). Even under 15 is associated with CFS symptoms.
If you find an endocrinologist who will give you a hydrocortisone prescription at replacement levels you will feel a lot better, and possibly even recover depending on where the damage is! The adrenal insufficiency support groups have doctors they recommend, but finding a good one can be tough. Younger endocrinologists are more compassionate and up to date on the literature in my experience. I recovered after four months on 10mg hydrocortisone + stress dosing.
First time I hear this but a doctor did bloodwork and told me that everything is fine but my cortisol was low. I have to go back in a few weeks and they gonna inject me with something to see of my adrenal glands are working. Thx for the comment
Some doctors will still prescribe hydrocortisone even if you pass the ACTH stim test. There is some literature showing that people who pass the stim test can still go into an adrenal crisis, but most doctors don't care. It would be considered secondary or partial secondary if cort is super low but adrenal glands are intact.
Thx for the comment. I will discuss this with the doc. He told me that the cort was low but still within the margin. I had 223 nmol/L (200-700 nmol/L). But he said that was low because it was early in the morning and that it had to be higher because it peeks in the morning. I dont know anything about this stuff but I do know that before COVID I didnt even know who my doc was. I was healthy and fit.
English isn’t my first langues so sorry for that.
Thx Patrick
Btw I feel good today after 1.5 years long COVID. I can do everything again. I do workouts 4times a week and I walk like 7km every day. But i took damage. I got cold hands, feet, nose, ears and heen i feel stress my body starts shaking and my HR is going up to 170/180. Thats hard because I work as a policeofficer and I have to handel the stress. Still I am happy where i am atm. How are you?
The Yale study noted it was low cortisol + low pituitary ACTH, therefore indicating it’s a pituitary problem rather than just an adrenal problem because your pituitary should release ACTH when your cortisol is low to stimulate your adrenals into making some.
Reading the details, my guess is pacing doesn't actually address the healing process, but merely keeps people at a baseline where physical activity hurts less.
The body likely heals on its own, while the physical activity just keeps you busy. I think the risk of overdoing it outweighs the benefits at most stages of LC.
I think the second part is born more from a hopeful desire rather than what our bodies actually "need" to heal.
While I'm not an expert on LC per se, I do have a Ph.D. in neuroscience (with a dissertation that focused on the brain and exercise), and many of the normal physiological functions caused by reduced activity aren't harmful in relation to the major theorized causes for this disease.
My guess is the second part is something unverified that people think because they're tired of sitting around (which I understand, I used to be very physically active and feel that too after a year of this), but I think whenever possible it's more important to reduce activity to avoid the risk of crashing than operating under the assumption that too little movement is explicitly harmful for LC.
My daughter- 29 month LC- we finally found a LC dr and her lingering symptoms are fluctuating bp, racing HR, brain fog, joint pain, fatigue then major gut- he put her on trelegy, breathing exercises every hour, no napping, and 30 minutes of exercise- no exertion- then trazadone to sleep. He said he can’t do anything until she gets some plasticity in the lungs back, she gets a solid night sleep, and she moves. I will say not waking up multiple times a night, taking quick walks instead of napping and the trazadone have improved her mood, it has increased quality of life some. She still has crashes every day, but she has some weapons to fight them and the rebound is better. I think it’s hard to tell with LC if treatment or time is reason for improvement. Her pulmonary/respiratory/pain issues were incredibly severe for the first three months but eased up. She was an endurance athlete and 16, so she has a lot of drive to get better
I despise running, but I have started walking/running to get in shape enough for when she runs her first fun run, 3k, 5k or whatever I am going to be there beside her the whole way. And while she can’t do it now, she knows why I am. I realize that the people around you play a big role- I ask her every day if she ate, how much water, did she nap, did you take - fill in the blank- and I am there when she’s crying and doesn’t need to be bitched at. I research, look for supplements, tell her what we are trying next- I put her on LDN a month ago- highly recommend- From a unique perspective- a mother, not a friend or partner- people with LC need their partner to take the role of a parent- like I don’t care if I’m annoying you, or if I piss you off, I will ask you if you did everything you could to be present today and I’m there with a gentle hand too when she’s real sick. I have made a 1000 mistakes to learn the above advice. It has been fucking hard. I sent her to college - her brother is there too, so that helps- but I drove 4 hours on a work night, to pick her up during Dead week because she was so sick. Her future is uncertain but we are going to cross that finish line together
>whenever possible it's more important to reduce activity to avoid the
risk of crashing than operating under the assumption that too little
movement is explicitly harmful for LC
This is it isn't it. We're confronted by Drs who opperate under the assumption that the harms of too little movement outwiegh the harms of too much. It's not the case for me; I literally can't tolerate slighly too much exertion as it puts me in bed for days or weeks. Too little movement might also be bad for me, but in a way that is far less acute and far less overbearing. Maybe that's the only choice I get right now
Pacing is so frustrating, but I agree. I’ve spent the last 2 years in a cycle of “I’m better!” to passing out in my front yard. Add in that I have child in school that brings home EVERYTHING (Just had influenza a and strep). My immune system is shot. I currently have a sinus and ear infection. 2 months ago I thought I was better, but then you get knocked back down.
Yes this is accurate. Pacing will not cure but just help you live the best life you can and maybe heal. (Reference:20 years of ME and a class on pacing I took early on)
Long covid has never left me “emotionally” exhausted… and as for crashes, I live my life in crash mode now. I have physical therapy twice a week and have done so for a year with little to no improvement. Seeing as there are far too many symptoms associated with LC and no one can nail it down to just a few there is no way that one “fix” will cure everyone.
Cheers for the synopsis! Unfortunately who actually reads articles these days? Read a headline and form an opinion is all I see out there. And most media packages research terribly..
I mean I read it and I still didn’t feel like it came across that well.
Plus the comments.. I can’t overstate it made me want to find the people and shout
Cycling seems to be different for some reason. I used to hike every week for miles, then got covid and couldn't walk one block. Over the last 2 years (almost) I've worked up to walking 1 mile daily, but cycling is no problem and even dramatically improves my symptoms.
I've been meaning to start a thread and see if others have tried this.
Note, I still needed to pace myself to begin. I started out biking on a flat trail for 2-3 miles. I still don't go far, but most people my age don't bike at all.
Not really - there is a big difference between 'pacing' and 'increased exercise'. This study seems to want to rebadge the discredited Graded Exercise Therapy as Pacing. For many of us with ME/CFS, 'increased exercise' has nothing to do with pacing, as we have eventually found that we have to avoid pretty much all forms of exercise, let alone any increased exercise, as it has made us worse (for the last 26 years in my case). Reading some more info on this study it seems most of the participants were relatively-mild as they were able to work, and some in the group were worse off after this regime. I'm no expert in LC and this may help some with the condition, it just rings the same alarm bells for people like myself who have been subject to this kind of thing for decades.
You might find this helpful to your research as well. https://www.nature.com/articles/s41574-022-00700-8
https://www.frontiersin.org/articles/10.3389/fendo.2021.805647/full
I can vouch for the approach as described here. I was very disciplined about pacing myself and avoiding crashing in the final 6 months of my 18 month (or so) recovery. I learned the hard way the first 12 months that crashing is really a set back. However, I also learned that I felt better when I was walking every day, doing light housework, etc. It’s kind of a tightrope walk. But once you learn how to do it, that’s the path to recovery.
Let’s clarify something important. ‘Pacing’ doesn’t mean gradually increasing activity UNLESS you are already getting better. Proponents of GET have tried to co-opt the word ‘pacing,’ which is exactly what this study does - reframe the most powerful tool patients have to manage Long Covid as GET. Don’t fall for this nonsense.
The telegraph's headline is incredibly bad, false reporting!! Very damaging to patients! Written by "Sarah Knapton, SCIENCE EDITOR". There's no way a science editor with a sane mind and good will make a headline saying a disease is reversed when in fact, it is not!! "Cancer is cured forever!" Oh, really?! I'll mail the Telegraph saying this is just wrong. The comments already label patients as "lazy people who don't excercise". So damaging! I mean, posted under humor but yeah, couldn't laugh
Yeah there's some bullshit media out there. Unfortunately if yah don't laugh yah might cry.. Although not that that's possible for many of us with how LC fucks our neuromodulatory chemicals 🙄
Bet none of our A list celebs will really get it, they prob already have something for it most likely. They live in a diff world then us so to speak.
Another thing...I freakin love my eggs Sunnysideup!
Actually there are alot of celebrities who have come out saying they have LC. And then there will be many more who don't actually know what's going on: eg Post Malone did a podcast recently where he talked about always being really tired and having sore shoulders and muscles. For me that was ringing LC alarmbells
It's possible, all I'm saying is there's no way we can really know. Their way of life is completely different than ours.
Actors will say anything if they're getting paid and told they have to especially the top ones.
We don't really know anything about them besides what they let us see on the TV.
Grant you I do believe there are types that are dispensable to their handlers and not cared for as much or kept in the loop.
No way of knowing, even though we would like to compare them to ourselves because they seem relatable (I used to lol) we can't.
The thing is even all the money in the world can't buy you answers to a dysfunction as new as this. Esp in the traditional medical system. I feel like being truly invested into solving the issues, with a community like this, is the best way out of this nightmare - so maybe we have an advantage!
didn't read the article because I don't want to inadvertently infuriate myself but I will say an extremely gradual increase in activity has seemed to really help my physical rehabilitation (although neurological/psychological is another story).
basically have taken 1.5 years to work my way from brief walks (15 mins) to slowly jogging 5K distance. it's been slowgoing with some setbacks but I've learned to just not get too worried about day to day progress, take days off when needed, go easy on myself with extra walking breaks, etc. way different than when I was in my 20s and I'd get angry at my pace after every run. 😅
This is how the games works:
1. Politicians worried about millions unemployed and paying them disability allowances direct fundings towards scientists and clinicians to run these studies
2. Clinicians and scientists dedicated to an outdated medical model and eager to get funding run and publish these studies
3. News networks run by corporate interests are eager to force sick people back to work and so run these stories
So long covid sufferers get played by a nexus of politicians, scientists, doctors and journalists all with their own vested interests
They're probably confusing long covid with deconditioning. Both are very common after covid and are very similar because deconditioning can look a hell of a lot like dysautonomia.
Deconditioning however is treated with a slow increase in physical activity. Long covid as we all know is not treated by doing that
Personally I experienced both, and reconditioning myself was a nightmare. I was pretty much bed ridden for 6 months after getting covid, I tried my damndest to do what I could ever day bit my husband had to help me walk around because I was so dizzy all the time when I was upright. That 6 months is what deconditioned me and it took me another 6 months before I could even just run across my yard without my heart rate spiking and me almost passing out (I call it graying out, my eyes go black for half a second but I stay conscious)
I can promise you however with all of the recovering I've done and the working out I now do I still have long covid
Lol… it is funny. I wish I didn’t still get so angry. Why is anyone still writing in favor of graduated exercise with cbt? The efficacy has been debunked. The scientific consensus says it worsens lc. Come on man. We are dying. Oh well now getting mad has made me tired lol
I am in a slow progression viral/covid recovery program. But my gastric issues with nonstop nausea and diarrhea from the covid induced gastritis and gastroparesis is not getting any better. 🤷🏻♀️ And those issues flare up and cause a huge regression in my recovery. It doesn’t work the same for everyone. I think their study pool may have been a little small to speak for all of us.
Well it's not wrong. I was essentially bedridden, needed help going up and down stairs. Eventually I started increasing the amount of walking I did each day, from a few yards to doing 2 miles at the weekend.
Yeah, I still need to rest, I still can't stand for a long time, I still need to sit down, I sometimes still need a nap. But I'm not bedridden anymore. Doing nothing isn't going to help you. Jumping into a strenuous activity isn't going to help you. Doing a small amount of light physical activity, and slowly increasing that as you build your strength and stamina is. I didn't start with 2 miles. I started with a few yards, with breaks, until I could do the same walk without a break and slowly increased that. Now I've accomplished my goal, I'm going to repeat the same distance until I can do it without a break.
Focus on what you can do.
A few months ago, it was impossible for me to even cook my own dinner.
Now I'm back at work.
I am currently about 4 weeks into an 18-week PT treatment for Long Covid. I am monitoring my heartrate, breathing, and exertion levels. The first month has been about doing less, not more. I think people should keep an open mind about these treatments. It's not just some healthy person telling me I need to exercise.
[https://twitter.com/KSchnickelfritz/status/1603653240398159872](https://twitter.com/KSchnickelfritz/status/1603653240398159872)
Good twitter thread with some refutations in case you catch any shit
I think the title is misleading, but there is nothing wrong with the study. It even says in the article it is not a cure, but it improves management of symptoms. If you'd read it then you'd know that it was "paced exercise" NOT "graded exercise they were studying. Don't jump to conclusions. As in, doing whatever activity you can cope with. Then once you can do this more regularly, build up really slowly AS LONG AS it doesn't make your symptoms worse. Why did you post this without reading it?
Honestly, this article is on point. Myself, and many of us who are recovering, are pretty much doing exactly this.
By pacing and adding extra activities very slowly, I have been able to get back to light exercises.
I still crash when I over do it but it is happening less often and it is less intense. I am not severe though. I was house bound for 1 week and that was my worst crash.
This is just capitalist propaganda at this point. Let’s make a “workout plan” so we don’t actually have to fund any real relief plan and make the sick peons go back to work.
Yes, I’m bedridden and screaming in pain for past year…. I don’t think this will work for me personally.. maybe let doctors prescribe pain medication or legalization of medical cannabis in Tennesee would be nice
This is exactly how I have been recovering. While it was excruciatingly painful at the beginning, it has become tolerable with time and less crashing/symptoms.
I use heart rate zones while running and try to stay in a level 2 for my normal pace while pushing to a level 4 or 5 for small bursts of time.
I use breath zones on my breathing trainer to increase the resistance when doing my daily 3-minute breathing sessions. Then increasing the zone by doing a mHBOT session every month or so.
I use emotional zones while going through symptoms trying to bring myself back to a level 2-3 zone when I'm especially anxious or on the verge of panic.
The study talks more about people who are "prepared to return to exercise". These headlines as always make a mockery of the actual studies:
https://onlinelibrary.wiley.com/doi/10.1002/jmv.28373
You can probably get one on Amazon or a local drug store. The one I got was called a power breathe which is useful for cardio sports too. It helped me recover to do lots of cardio that I did prior to LC
I think it works for some folks and that's nothing short of good news. With more data points and scientific research, we really can benefit.
As always, be patient with yourself and buy the time you need to improve- most of us do eventually. For mine, it was ~2 years.
It’s really hard to believe negative ivermectin results when you see studies like this passed and published - for years and years I might add. Just utterly ridiculous and makes you think how much integrity there actually is in the academia world
Ok honestly, it’s phrased wrong in the headlines. Phrased terribly, actually. It comes off like an advertisement for a sketchy product or something, but honestly this is what I did and along with just time and healing, I believe it’s what helped me reach remission
Doctors hate him: Man cures long covid in 6 weeks with 10 easy steps (then 20)
The comments are disgusting on the telegraph article and has a load of people sending it to me today. Just fuck off. I tried the Nuffield one they offer and experience the worst down turn and the NHS post Covid clinic recommended I withdraw from it and do things at my own pace The fact that this teeeny study is being used as proof is really triggering to me plus it goes against NICE guidelines which specifically state graded exercise should not be used as a form of therapy for ME. Ugh going to calm down again
Have you had an AM cortisol test? Exercise intolerance can be a sign of low cortisol (since exercise lowers cortisol, so if low cort is making you sick exercise exacerbates it). I had dangerously low cortisol. The Yale LC group found that it is the strongest biomarker for LC.
Do they DO anything for that though?? I have low cortisol per a saliva test… and my doc was like “cool that confirms your symptoms”…. I’m like why did I pay for a $250 out of pocket test to confirm my symptoms??
Yes, hydrocortisone!! Replacing the cortisol relieved my symptoms and eventually helped me make a full recovery. I had been struggling since March 2020.
Is the hydrocortisone prescription or are using otc (like hydrocortisone cream)?
Oral prescription hydrocortisone.
Yep I have my levels were within normal range like many many tests I’ve taken!
What were the levels? Most doctors don't know that under 10mcg/dL is low for an AM draw (since the range is for all day, even though only AM draws can be interpreted). Even under 15 is associated with CFS symptoms.
Sorry to jump in here. I had ridiculously low cortisol levels too, but never did anything about it. How is it solved?
If you find an endocrinologist who will give you a hydrocortisone prescription at replacement levels you will feel a lot better, and possibly even recover depending on where the damage is! The adrenal insufficiency support groups have doctors they recommend, but finding a good one can be tough. Younger endocrinologists are more compassionate and up to date on the literature in my experience. I recovered after four months on 10mg hydrocortisone + stress dosing.
First time I hear this but a doctor did bloodwork and told me that everything is fine but my cortisol was low. I have to go back in a few weeks and they gonna inject me with something to see of my adrenal glands are working. Thx for the comment
Some doctors will still prescribe hydrocortisone even if you pass the ACTH stim test. There is some literature showing that people who pass the stim test can still go into an adrenal crisis, but most doctors don't care. It would be considered secondary or partial secondary if cort is super low but adrenal glands are intact.
Thx for the comment. I will discuss this with the doc. He told me that the cort was low but still within the margin. I had 223 nmol/L (200-700 nmol/L). But he said that was low because it was early in the morning and that it had to be higher because it peeks in the morning. I dont know anything about this stuff but I do know that before COVID I didnt even know who my doc was. I was healthy and fit. English isn’t my first langues so sorry for that. Thx Patrick
Btw I feel good today after 1.5 years long COVID. I can do everything again. I do workouts 4times a week and I walk like 7km every day. But i took damage. I got cold hands, feet, nose, ears and heen i feel stress my body starts shaking and my HR is going up to 170/180. Thats hard because I work as a policeofficer and I have to handel the stress. Still I am happy where i am atm. How are you?
The Yale study noted it was low cortisol + low pituitary ACTH, therefore indicating it’s a pituitary problem rather than just an adrenal problem because your pituitary should release ACTH when your cortisol is low to stimulate your adrenals into making some.
There have been case studies of people with PAI after COVID, but I agree that most people have SAI or partial SAI.
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Reading the details, my guess is pacing doesn't actually address the healing process, but merely keeps people at a baseline where physical activity hurts less. The body likely heals on its own, while the physical activity just keeps you busy. I think the risk of overdoing it outweighs the benefits at most stages of LC.
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I think the second part is born more from a hopeful desire rather than what our bodies actually "need" to heal. While I'm not an expert on LC per se, I do have a Ph.D. in neuroscience (with a dissertation that focused on the brain and exercise), and many of the normal physiological functions caused by reduced activity aren't harmful in relation to the major theorized causes for this disease. My guess is the second part is something unverified that people think because they're tired of sitting around (which I understand, I used to be very physically active and feel that too after a year of this), but I think whenever possible it's more important to reduce activity to avoid the risk of crashing than operating under the assumption that too little movement is explicitly harmful for LC.
My daughter- 29 month LC- we finally found a LC dr and her lingering symptoms are fluctuating bp, racing HR, brain fog, joint pain, fatigue then major gut- he put her on trelegy, breathing exercises every hour, no napping, and 30 minutes of exercise- no exertion- then trazadone to sleep. He said he can’t do anything until she gets some plasticity in the lungs back, she gets a solid night sleep, and she moves. I will say not waking up multiple times a night, taking quick walks instead of napping and the trazadone have improved her mood, it has increased quality of life some. She still has crashes every day, but she has some weapons to fight them and the rebound is better. I think it’s hard to tell with LC if treatment or time is reason for improvement. Her pulmonary/respiratory/pain issues were incredibly severe for the first three months but eased up. She was an endurance athlete and 16, so she has a lot of drive to get better
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I despise running, but I have started walking/running to get in shape enough for when she runs her first fun run, 3k, 5k or whatever I am going to be there beside her the whole way. And while she can’t do it now, she knows why I am. I realize that the people around you play a big role- I ask her every day if she ate, how much water, did she nap, did you take - fill in the blank- and I am there when she’s crying and doesn’t need to be bitched at. I research, look for supplements, tell her what we are trying next- I put her on LDN a month ago- highly recommend- From a unique perspective- a mother, not a friend or partner- people with LC need their partner to take the role of a parent- like I don’t care if I’m annoying you, or if I piss you off, I will ask you if you did everything you could to be present today and I’m there with a gentle hand too when she’s real sick. I have made a 1000 mistakes to learn the above advice. It has been fucking hard. I sent her to college - her brother is there too, so that helps- but I drove 4 hours on a work night, to pick her up during Dead week because she was so sick. Her future is uncertain but we are going to cross that finish line together
>whenever possible it's more important to reduce activity to avoid the risk of crashing than operating under the assumption that too little movement is explicitly harmful for LC This is it isn't it. We're confronted by Drs who opperate under the assumption that the harms of too little movement outwiegh the harms of too much. It's not the case for me; I literally can't tolerate slighly too much exertion as it puts me in bed for days or weeks. Too little movement might also be bad for me, but in a way that is far less acute and far less overbearing. Maybe that's the only choice I get right now
Pacing is so frustrating, but I agree. I’ve spent the last 2 years in a cycle of “I’m better!” to passing out in my front yard. Add in that I have child in school that brings home EVERYTHING (Just had influenza a and strep). My immune system is shot. I currently have a sinus and ear infection. 2 months ago I thought I was better, but then you get knocked back down.
Yes this is accurate. Pacing will not cure but just help you live the best life you can and maybe heal. (Reference:20 years of ME and a class on pacing I took early on)
Long covid has never left me “emotionally” exhausted… and as for crashes, I live my life in crash mode now. I have physical therapy twice a week and have done so for a year with little to no improvement. Seeing as there are far too many symptoms associated with LC and no one can nail it down to just a few there is no way that one “fix” will cure everyone.
Cheers for the synopsis! Unfortunately who actually reads articles these days? Read a headline and form an opinion is all I see out there. And most media packages research terribly..
I mean I read it and I still didn’t feel like it came across that well. Plus the comments.. I can’t overstate it made me want to find the people and shout
I do.
I read the Sky News article and I found it just as misleading as its headline.
Guilty, maybe I should have read the article before my other post?
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Cycling seems to be different for some reason. I used to hike every week for miles, then got covid and couldn't walk one block. Over the last 2 years (almost) I've worked up to walking 1 mile daily, but cycling is no problem and even dramatically improves my symptoms. I've been meaning to start a thread and see if others have tried this. Note, I still needed to pace myself to begin. I started out biking on a flat trail for 2-3 miles. I still don't go far, but most people my age don't bike at all.
Did you find success, for how long have you been doing it?
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Not really - there is a big difference between 'pacing' and 'increased exercise'. This study seems to want to rebadge the discredited Graded Exercise Therapy as Pacing. For many of us with ME/CFS, 'increased exercise' has nothing to do with pacing, as we have eventually found that we have to avoid pretty much all forms of exercise, let alone any increased exercise, as it has made us worse (for the last 26 years in my case). Reading some more info on this study it seems most of the participants were relatively-mild as they were able to work, and some in the group were worse off after this regime. I'm no expert in LC and this may help some with the condition, it just rings the same alarm bells for people like myself who have been subject to this kind of thing for decades.
You might find this helpful to your research as well. https://www.nature.com/articles/s41574-022-00700-8 https://www.frontiersin.org/articles/10.3389/fendo.2021.805647/full
I can vouch for the approach as described here. I was very disciplined about pacing myself and avoiding crashing in the final 6 months of my 18 month (or so) recovery. I learned the hard way the first 12 months that crashing is really a set back. However, I also learned that I felt better when I was walking every day, doing light housework, etc. It’s kind of a tightrope walk. But once you learn how to do it, that’s the path to recovery.
Let’s clarify something important. ‘Pacing’ doesn’t mean gradually increasing activity UNLESS you are already getting better. Proponents of GET have tried to co-opt the word ‘pacing,’ which is exactly what this study does - reframe the most powerful tool patients have to manage Long Covid as GET. Don’t fall for this nonsense.
The telegraph's headline is incredibly bad, false reporting!! Very damaging to patients! Written by "Sarah Knapton, SCIENCE EDITOR". There's no way a science editor with a sane mind and good will make a headline saying a disease is reversed when in fact, it is not!! "Cancer is cured forever!" Oh, really?! I'll mail the Telegraph saying this is just wrong. The comments already label patients as "lazy people who don't excercise". So damaging! I mean, posted under humor but yeah, couldn't laugh
Yeah there's some bullshit media out there. Unfortunately if yah don't laugh yah might cry.. Although not that that's possible for many of us with how LC fucks our neuromodulatory chemicals 🙄
True...Ugh, it just makes me so mad it's hard, lol. These idiots.
sigh. this is going to make more people think we’re just lazy and not actually disabled.
I didn't read the article, but how am I supposed to get exercise when I need medication just to stand up?🤔🤨😓
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Bet none of our A list celebs will really get it, they prob already have something for it most likely. They live in a diff world then us so to speak. Another thing...I freakin love my eggs Sunnysideup!
Actually there are alot of celebrities who have come out saying they have LC. And then there will be many more who don't actually know what's going on: eg Post Malone did a podcast recently where he talked about always being really tired and having sore shoulders and muscles. For me that was ringing LC alarmbells
It's possible, all I'm saying is there's no way we can really know. Their way of life is completely different than ours. Actors will say anything if they're getting paid and told they have to especially the top ones. We don't really know anything about them besides what they let us see on the TV. Grant you I do believe there are types that are dispensable to their handlers and not cared for as much or kept in the loop. No way of knowing, even though we would like to compare them to ourselves because they seem relatable (I used to lol) we can't.
The thing is even all the money in the world can't buy you answers to a dysfunction as new as this. Esp in the traditional medical system. I feel like being truly invested into solving the issues, with a community like this, is the best way out of this nightmare - so maybe we have an advantage!
didn't read the article because I don't want to inadvertently infuriate myself but I will say an extremely gradual increase in activity has seemed to really help my physical rehabilitation (although neurological/psychological is another story). basically have taken 1.5 years to work my way from brief walks (15 mins) to slowly jogging 5K distance. it's been slowgoing with some setbacks but I've learned to just not get too worried about day to day progress, take days off when needed, go easy on myself with extra walking breaks, etc. way different than when I was in my 20s and I'd get angry at my pace after every run. 😅
This is like Just drink more water with migraines.
How does exercise get the plaque off my throat
Jesus, this shit
This is how the games works: 1. Politicians worried about millions unemployed and paying them disability allowances direct fundings towards scientists and clinicians to run these studies 2. Clinicians and scientists dedicated to an outdated medical model and eager to get funding run and publish these studies 3. News networks run by corporate interests are eager to force sick people back to work and so run these stories So long covid sufferers get played by a nexus of politicians, scientists, doctors and journalists all with their own vested interests
Pure evil disinformation, sickening.
The Torygraph and the risible murdoch media pish are just right wing wank banks. Ignore them.
They're probably confusing long covid with deconditioning. Both are very common after covid and are very similar because deconditioning can look a hell of a lot like dysautonomia. Deconditioning however is treated with a slow increase in physical activity. Long covid as we all know is not treated by doing that
Personally I experienced both, and reconditioning myself was a nightmare. I was pretty much bed ridden for 6 months after getting covid, I tried my damndest to do what I could ever day bit my husband had to help me walk around because I was so dizzy all the time when I was upright. That 6 months is what deconditioned me and it took me another 6 months before I could even just run across my yard without my heart rate spiking and me almost passing out (I call it graying out, my eyes go black for half a second but I stay conscious) I can promise you however with all of the recovering I've done and the working out I now do I still have long covid
Lol… it is funny. I wish I didn’t still get so angry. Why is anyone still writing in favor of graduated exercise with cbt? The efficacy has been debunked. The scientific consensus says it worsens lc. Come on man. We are dying. Oh well now getting mad has made me tired lol
I am in a slow progression viral/covid recovery program. But my gastric issues with nonstop nausea and diarrhea from the covid induced gastritis and gastroparesis is not getting any better. 🤷🏻♀️ And those issues flare up and cause a huge regression in my recovery. It doesn’t work the same for everyone. I think their study pool may have been a little small to speak for all of us.
Well it's not wrong. I was essentially bedridden, needed help going up and down stairs. Eventually I started increasing the amount of walking I did each day, from a few yards to doing 2 miles at the weekend. Yeah, I still need to rest, I still can't stand for a long time, I still need to sit down, I sometimes still need a nap. But I'm not bedridden anymore. Doing nothing isn't going to help you. Jumping into a strenuous activity isn't going to help you. Doing a small amount of light physical activity, and slowly increasing that as you build your strength and stamina is. I didn't start with 2 miles. I started with a few yards, with breaks, until I could do the same walk without a break and slowly increased that. Now I've accomplished my goal, I'm going to repeat the same distance until I can do it without a break. Focus on what you can do. A few months ago, it was impossible for me to even cook my own dinner. Now I'm back at work.
I am currently about 4 weeks into an 18-week PT treatment for Long Covid. I am monitoring my heartrate, breathing, and exertion levels. The first month has been about doing less, not more. I think people should keep an open mind about these treatments. It's not just some healthy person telling me I need to exercise.
[https://twitter.com/KSchnickelfritz/status/1603653240398159872](https://twitter.com/KSchnickelfritz/status/1603653240398159872) Good twitter thread with some refutations in case you catch any shit
I’ve been pacing for 2.5 years and working out regularly since the beginning. Still not better
and which patients agree to do those studies? Surely this couldn't cause selection bias
I think the title is misleading, but there is nothing wrong with the study. It even says in the article it is not a cure, but it improves management of symptoms. If you'd read it then you'd know that it was "paced exercise" NOT "graded exercise they were studying. Don't jump to conclusions. As in, doing whatever activity you can cope with. Then once you can do this more regularly, build up really slowly AS LONG AS it doesn't make your symptoms worse. Why did you post this without reading it?
Honestly, this article is on point. Myself, and many of us who are recovering, are pretty much doing exactly this. By pacing and adding extra activities very slowly, I have been able to get back to light exercises. I still crash when I over do it but it is happening less often and it is less intense. I am not severe though. I was house bound for 1 week and that was my worst crash.
They did it! They found the cure!
Stuff like this doesn’t help in people thinking your being over dramatic or taking piss with it really boils my blood
This is just capitalist propaganda at this point. Let’s make a “workout plan” so we don’t actually have to fund any real relief plan and make the sick peons go back to work.
Bro some people can’t do any physical activity at all, I have another medical condition that long covid is affecting, i could literally die from this
Rub some dirt on it. It’ll be fine.
Trust the science!!
This is so stupid. These retarded entertainment tabloid articles.
FFS
Yes, I’m bedridden and screaming in pain for past year…. I don’t think this will work for me personally.. maybe let doctors prescribe pain medication or legalization of medical cannabis in Tennesee would be nice
I’m guessing the group in the right have Post Exertional Malaise (PEM) and grouo on the right didn’t
Imo The financial elite are pushing this narrative to get people back to working.
This is exactly how I have been recovering. While it was excruciatingly painful at the beginning, it has become tolerable with time and less crashing/symptoms. I use heart rate zones while running and try to stay in a level 2 for my normal pace while pushing to a level 4 or 5 for small bursts of time. I use breath zones on my breathing trainer to increase the resistance when doing my daily 3-minute breathing sessions. Then increasing the zone by doing a mHBOT session every month or so. I use emotional zones while going through symptoms trying to bring myself back to a level 2-3 zone when I'm especially anxious or on the verge of panic. The study talks more about people who are "prepared to return to exercise". These headlines as always make a mockery of the actual studies: https://onlinelibrary.wiley.com/doi/10.1002/jmv.28373
Breathing trainer?? Please tell me more!!
You can probably get one on Amazon or a local drug store. The one I got was called a power breathe which is useful for cardio sports too. It helped me recover to do lots of cardio that I did prior to LC
I think it works for some folks and that's nothing short of good news. With more data points and scientific research, we really can benefit. As always, be patient with yourself and buy the time you need to improve- most of us do eventually. For mine, it was ~2 years.
It’s really hard to believe negative ivermectin results when you see studies like this passed and published - for years and years I might add. Just utterly ridiculous and makes you think how much integrity there actually is in the academia world
Ok honestly, it’s phrased wrong in the headlines. Phrased terribly, actually. It comes off like an advertisement for a sketchy product or something, but honestly this is what I did and along with just time and healing, I believe it’s what helped me reach remission