Long Covid
- Thread starter zahir
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ska invita
back on the other side
How is everyone doing in Urbans Long Crew? I hope things are better...
Im happy to say that (after 8 months) my life is back to normal in terms of what I do: full time work, exercise, socialising....though symptoms remain, particularly restricted breathing and also some leg aches. My general attitude is to just ignore as much as possible (occasional fade out, head in hands moment though) and try and plough on. Exercise is my particular focus and creates noticeable improvements, but its hard to maintain, especially as work + commuting is deeply exhausting. As ever its about finding balance, though especially whilst its "summer" Im really trying to take advantage of late sunset to get out after work for exercise - its a hassle, its counterintuitive, but its having positive effects.
Im happy to say that (after 8 months) my life is back to normal in terms of what I do: full time work, exercise, socialising....though symptoms remain, particularly restricted breathing and also some leg aches. My general attitude is to just ignore as much as possible (occasional fade out, head in hands moment though) and try and plough on. Exercise is my particular focus and creates noticeable improvements, but its hard to maintain, especially as work + commuting is deeply exhausting. As ever its about finding balance, though especially whilst its "summer" Im really trying to take advantage of late sunset to get out after work for exercise - its a hassle, its counterintuitive, but its having positive effects.
Oula
Voice of a Goddess Giant
My hands are less painful in general (although have been bad this week) but the fatigue is getting to me. Especially as school holidays means camping (I knew that would knock me out for a while and it did) and doing stuff with the kids, which is being exhausting.
I had a telephone assessment for free counselling which decided that the best thing for me would be a self-directed, online CBT programme developed especially for Long Covid so I'll be interested to see what that involves. I'm still awaiting my X ray.
Overall, it's improving and I'm coping better with it but it is still frustrating. Finding it hard to adjust to being too exhausted or in too much pain to do things that I want/need to do and getting used to cancelling and explaining to people.
Finding this thread a useful read as while I’m fairly sure I haven’t had covid, I am experiencing some similar things to long covid symptoms currently, so the techniques and discussions are of use to me.
Best wishes to all on here. I can certainly relate to a lot of what you’re going through.
Best wishes to all on here. I can certainly relate to a lot of what you’re going through.
This is quite a good extended article on long covid.
www.theatlantic.com
Long-Haulers Are Fighting for Their Future
Many people with long COVID feel that science is failing them. Neglecting them could make the pandemic even worse.
The risks of long covid after getting vaccinated.
edition.cnn.com
Being fully vaccinated reduces odds of long-term Covid-19 symptoms by half, UK study suggests | CNN
A new study of breakthrough Covid-19 infections finds that vaccines not only reduce the risk of severe disease and hospitalization, but can lower the odds of having long-term Covid-19 symptoms too.
David Clapson
Well-Known Member
The strong hint towards the end is that Long Covid is probably ME/CFS. I wonder whether people with ME/CFS are more susceptible to ME/CFS, and what it's like to get Long Covid if you already have ME/CFS? I also wonder whether the ME/CFS recovery regime which I follow could help those with Long Covid? I won't say any more because the worst thing about illnesses which the NHS doesn't treat is the online bullshit written by non-doctors.This is quite a good extended article on long covid.
Long-Haulers Are Fighting for Their Future
Many people with long COVID feel that science is failing them. Neglecting them could make the pandemic even worse.
ska invita
back on the other side
what is your regime? it doesn't hurt to know it
David Clapson
Well-Known Member
Went to a private doctor who's a member of Practitioners They've all left the NHS to focus on nutritional and environmental medicine. There's a big emphasis on illness prevention through diet. For people who think they may have ME they use the Mitochondrial Function Test. Treatment varies. In my case it's dietary advice, supplements, exercise advice and lifestyle stuff. It's all controversial Independent researchers determine mitochondrial test is unreliable and should not be used as test in ME/CFS | 09 August 2019 | The ME Association There's no consensus on diagnosis and treatment of ME. The NHS offers nothing. What they used to offer (CBT and GET) has been withdrawn. So if you want to go private it's at your own risk. Do nothing or take a chance and try not to provoke a relapse.
Sasaferrato
Super Refuser!
I haven't looked at ME/CFS in any detail, but is seems that although its existence isn't disputed,there is no consensus on treatment. If treatments developed for Long Covid also help with ME/CFS that really would be a bonus.
wemakeyousoundb
hopefully not gimboid
considering new NICE guidelines were due for ME/CFS but this has been delayed and people have resigned from NICE over it I can see this taling a while.
David Clapson
Well-Known Member
There's been a sort of war about exercise, or GET (graded exercise therapy). You daren't mention that it might work for some patients. It's the key to my future, if I can get it right, but it wouldn't benefit me if it wasn't prefaced by the non-NHS diet and supplements and advice and understanding. And I wouldn't know how to manage it if I hadn't learned by mismanaging it and provoking relapses. It's been a very, very long saga. I restarted exercise a few weeks ago after doing almost none for 9 years. I treated myself to an Ultimate Bicycle, which is now a sort of emotional crutch. I'm obsessed with it. It's Olympic standard. I have an Emotional Support Bicycle. And an Emotional Support Cat. Soon I will combine them. The cat doesn't know yet.
If I said on twitter that I believe exercise is the key to my recovery I'd get some very bitter replies. I'd be accused of just trolling and faking everything, or having a completely different illlness and zero understanding of ME. And it's true that I can't be certain that it will work this time around. But it's the only thing I can try. The official line from the NHS is that I'll probably never recover. They say I'll just continue to decline as I get older. If I tell an NHS doc that I'm having private treatment, there's just a long silence. They can't encourage me and they seem to think it's better not to discourage me, probably because I might complain.
There's also been a war about CBT. It's administered by psychiatrists. All the doctors at the ME clinic at the Maudsley used to be psychiatrists. A lot of patients have been given the impression that the NHS believes ME is 'all in your head'. And a lot of the docs have believed that. They bought into the idea that patients can be coached with CBT to manage their condition better and pace themselves and build up their exercise programme and get better. Maybe. This has driven many patients to despair. You drag yourself to the leading specialist clinic, after battling for an appointment, and all that happens is that you see a psychiatrist and are given a widely discredited little book to read, about pacing yourself. Simon Wessely, head of the Maudsley clinic, has had death threats. And now the exercise advice and the CBT and the little book have been officially de-endorsed, so after 60 years of experience of ME, the NHS is back to nothing, with no treatment.
And now there might be hundreds of thousands of people with Long Covid who are going to be thrown into this swamp. It will take them years to accept just how little they will be helped. I am so desperate to pedal my way out of this limbo while I still have the chance of a few years of an active life.
If I said on twitter that I believe exercise is the key to my recovery I'd get some very bitter replies. I'd be accused of just trolling and faking everything, or having a completely different illlness and zero understanding of ME. And it's true that I can't be certain that it will work this time around. But it's the only thing I can try. The official line from the NHS is that I'll probably never recover. They say I'll just continue to decline as I get older. If I tell an NHS doc that I'm having private treatment, there's just a long silence. They can't encourage me and they seem to think it's better not to discourage me, probably because I might complain.
There's also been a war about CBT. It's administered by psychiatrists. All the doctors at the ME clinic at the Maudsley used to be psychiatrists. A lot of patients have been given the impression that the NHS believes ME is 'all in your head'. And a lot of the docs have believed that. They bought into the idea that patients can be coached with CBT to manage their condition better and pace themselves and build up their exercise programme and get better. Maybe. This has driven many patients to despair. You drag yourself to the leading specialist clinic, after battling for an appointment, and all that happens is that you see a psychiatrist and are given a widely discredited little book to read, about pacing yourself. Simon Wessely, head of the Maudsley clinic, has had death threats. And now the exercise advice and the CBT and the little book have been officially de-endorsed, so after 60 years of experience of ME, the NHS is back to nothing, with no treatment.
And now there might be hundreds of thousands of people with Long Covid who are going to be thrown into this swamp. It will take them years to accept just how little they will be helped. I am so desperate to pedal my way out of this limbo while I still have the chance of a few years of an active life.
David Clapson
Well-Known Member
I should also mention that there are a number of other tests which look at food intolerances and imbalances and pollutants and what have you, which some people might think are the province of cranks, the next worst thing to homeopathy. But I instinctively feel that if you're very weak and you want to use exercise to strengthen yourself, you need to find out what things in your diet and your environment might be undermining you. The list of things I eat is quite short now, but as soon as I started on this diet I got a remarkable boost, and actual hope for the future. I started making plans! Needless to say, the NHS has nothing to offer here. NHS nutritionists are straight out of the '70s. 'Just eat a balanced diet'. I think their main task is to prevent malnutrition amongst elderly in-patients.
Of course it's different for everyone..the range of intolerances to foods and other things is absolutely vast. When you're well, you can shrug these things off. Eat too much chocolate or mashed potato or whatever, cause your blood sugar level to crash, well...just have another coffee and carry on. But if you've got ME (or maybe Long Covid?) you need to address these little weaknesses first before you start the long march into the sunlit uplands! I even bought a really fancy air purifier to protect me from traffic pollution. But I live on the third floor...the fumes don't seem to get this high. Never mind. But what I meant to say is that if you're at ground floor level in London it might be something to consider? You're welcome to borrow my machine for a few days to see whether it leaps into action.
If you're curious about this stuff, have a read of Dr Sarah Myhill's site. DoctorMyhill She's a bit of a fanatic. No box is left unticked. But if you have ME you can't get an appointment with her because she's all booked up into the future, forever. So maybe she's doing something right! She's very brave, always getting published, her head always well above the parapet. So she gets attacked from all directions. If I had a time machine I'd go forward 100 years to find out who's right. By then ME should have an accurate name. ME is wrong - it stands for Myalgic Encephalomyelitis, which means lack of blood flow to the brain or something. That's what some people thought it was for a while. But it was debunked. So then the illness had no name, which made it hard to get a sick note or statutory sickness pay or make an insurance claim. So the royal colleges of physicians got together and issued a joint edict, saying it's a real disease and we shall call it Chronic Fatigue Syndrome. Which just means you're tired for a long time and nobody knows why. Privately the medics call this sort of thing a 'rubbish bin diagnosis'. It means 'we don't know what's wrong with you, but if you insist on being ill, have this label. Next patient please'. There's also been a movement to replace CFS with SEID, or Systemic Exertional Intolerance Disease. Yeah, thanks for that, it's a big help. I expect some poeple like it because it's got Disease in it. It sounds more like a real thing. Probably an American idea. I couldn't give a fuck any more.
Brainaddict
slight system overdrive
My experience on exercise and my post-viral fatigue is that one can increase exercise in proportion to the energy you feel, but that using exercise to push your energy envelope doesn't work. In other words I think it's definitely good to try and increase exercise (this has never been a problem for me btw - I hate doing nothing, I love being active, I love cycling), but that the helpful way to think of it flowing is: energy increase->more exercise NOT more exercise->energy increase. So I suspect it's better to be stuck on an exercise plateau until it feels right to increase it, rather than having set times to increase exercise. But any time you do feel an increase in energy, it is worth increasing your exercise by a small amount. There, I've solved the decades-long GET controversy for you all 
btw I am rubbish at doing this and my most recent relapse was partly due to lack of pacing, and increasing what I was doing by too large an amount. But I think I'm getting my head around what I did wrong.
btw I am rubbish at doing this and my most recent relapse was partly due to lack of pacing, and increasing what I was doing by too large an amount. But I think I'm getting my head around what I did wrong.
wtfftw
melting like a toastie
Yeah. I'd say you've got it. And it's not linear progress.My experience on exercise and my post-viral fatigue is that one can increase exercise in proportion to the energy you feel, but that using exercise to push your energy envelope doesn't work. In other words I think it's definitely good to try and increase exercise (this has never been a problem for me btw - I hate doing nothing, I love being active, I love cycling), but that the helpful way to think of it flowing is: energy increase->more exercise NOT more exercise->energy increase. So I suspect it's better to be stuck on an exercise plateau until it feels right to increase it, rather than having set times to increase exercise. But any time you do feel an increase in energy, it is worth increasing your exercise by a small amount. There, I've solved the decades-long GET controversy for you all
btw I am rubbish at doing this and my most recent relapse was partly due to lack of pacing, and increasing what I was doing by too large an amount. But I think I'm getting my head around what I did wrong.
And thinking of activity rather than exercise. Although severity comes into play there.
Brainaddict
slight system overdrive
Yes, activity rather than 'exercise' is right. Zoom calls or intellectual work can be exhausting too. Also something like hosting an event (as I discovered to my cost) involves being on your feet a lot helping people and you need to think about that physical side of it carefully before committing to things.
Sasaferrato
Super Refuser!
David Clapson
Thank you for those posts. You have increased my understanding both the illness and the problems with treatment.
Thank you for those posts. You have increased my understanding both the illness and the problems with treatment.
Brainaddict
slight system overdrive
Btw since I've had a bit of a relapse I've restarted some of the stuff I was doing before to manage symptoms. Here's an update on what I'm doing:
Flushing niacin (150mg per day, 100mg with breakfast, 50mg with lunch) - taken for energy, definite benefits felt
Quercetin and Curcumin - natural anti-inflammatories, seem to have some effect though sometimes difficult to tell
Low dose naltrexone (2mg per day atm, taken in the morning) - gives me a burst of energy later in the day
Kefir - in case all this probiotics fashion turns out to be right - no noticeable effect tbh but it can't do me any harm
Mindfulness practice - to help deal with 'secondary suffering' i.e. feeling pissed off about being ill
Resting - with varying degrees of success on different days
Flushing niacin (150mg per day, 100mg with breakfast, 50mg with lunch) - taken for energy, definite benefits felt
Quercetin and Curcumin - natural anti-inflammatories, seem to have some effect though sometimes difficult to tell
Low dose naltrexone (2mg per day atm, taken in the morning) - gives me a burst of energy later in the day
Kefir - in case all this probiotics fashion turns out to be right - no noticeable effect tbh but it can't do me any harm
Mindfulness practice - to help deal with 'secondary suffering' i.e. feeling pissed off about being ill
Resting - with varying degrees of success on different days
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ska invita
back on the other side
re exercise, walking is always a good fall back and can be different lengths - for me at least once i had the energy to do a walk, walking was a form of exercise that doesnt go into heavy aerobic heart pumping zone, which is where the tiredness really kicks inMy experience on exercise and my post-viral fatigue is that one can increase exercise in proportion to the energy you feel, but that using exercise to push your energy envelope doesn't work. In other words I think it's definitely good to try and increase exercise (this has never been a problem for me btw - I hate doing nothing, I love being active, I love cycling), but that the helpful way to think of it flowing is: energy increase->more exercise NOT more exercise->energy increase. So I suspect it's better to be stuck on an exercise plateau until it feels right to increase it, rather than having set times to increase exercise. But any time you do feel an increase in energy, it is worth increasing your exercise by a small amount. There, I've solved the decades-long GET controversy for you all
btw I am rubbish at doing this and my most recent relapse was partly due to lack of pacing, and increasing what I was doing by too large an amount. But I think I'm getting my head around what I did wrong.
re David Clapson talking about food, some of this is true for all people in whatever health - i think it becomes more pronounced with chornic fatigue.... ive got my own funky diet ive arrived at over years, aside from more regular meals it involves a lot of oats, apples, olives and hummous! ive stuck on those as they make me feel good. No added sugars and avoid oily fats Certainly no dairy which gives me respiratory problems. But i wont bore on about my food choices, point being i definitely agree it has a role to play, and thats true for everyone.
elbows
Well-Known Member
Brainaddict
slight system overdrive
Sorry to hear that, I did the same this summer. It's very difficult to carry on going slowly when you are starting to feel better and there's stuff you want to do. I'm hoping I've learned a lesson and won't do it again but the temptations to max out any new energy are very strong.
David Clapson
Well-Known Member
Another Long Covid article. This one's in the Guardian but written by an American. It emphasizes the teaching of self-management to the patient, which I agree with wholeheartedly. The sad irony is that in the case of ME/CFS, the NHS fucked this up with the PACE trial and the subsequent implementation of CBT and GET. I hope patients haven't put off self-management for life.
Post-illness symptoms like long Covid are probably more common than we think | Megan Hosey
Post-illness symptoms like long Covid are probably more common than we think | Megan Hosey
ska invita
back on the other side
So sorry to hear that xx when did you first get ill?
Oula
Voice of a Goddess Giant
With covid? December 2020. It has improved a lot in the past few months so I shouldn't complain. But it's getting to the stage that I think I'm almost over it and then have a set back.
BristolEcho
Well-Known Member
I think it's okay to complain/be frustrated. It's a really frustrating condition with lots of fluctuations and can make you pull your hair out. Hope you are feeling less in pain soon.
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