'Long covid' being deliberately vaguely defined

[JuneSummer]

It seems like you can't turn on the TV or open a newspaper at the moment without hearing about 'long covid'. So I decided to look at how it is actually being defined.

Christina Pagel (another who is not a virologist or medically qualified but is never out of the media), has defined it on Twitter as any DC with 'symptoms' after 4 weeks. She then used this definition to say '5-10% of DC with covid get long covid'.

But what are these symptoms- tummy pain, headaches and fatigue. Surely these are all extremely common ailments for DC and adults. Yet anyone who gets covid and has one of these symptoms later is now said to have 'long covid'.

I don't doubt that there are a (very small) number of people who do end up with long term side effects. But it seems to me that 'long covid' is actually now being used to drive up fear and justify the continuation of restrictions.

twitter.com/chrischirp/status/1369731297871007757

@Athinginitself

There are some seriously weird comments on this thread. Its not surprising that after a bad virus of which a huge number of people have been affected with around the same time some attention is being given to people struggling with symptoms months after and it's not just random symptoms its symptoms that are v familiar in post viral illness and CFS/ME + some more specific symptoms such as chest pain, breathlessnesss, heart issues etc. I dont think it's being used as a tool to keep people frightened, what are the media meant to do just ignore it's an issue. Most people have a mild illness and recover fine as they would with flu and other viral illnesses some people dont. Its shit if you are one of those people as there is v little that can practically be done about a lot of the symptoms. I've been referred to a long covid clinic after a year of chest pain, breathlessness, crippling fatigue etc, but I've lived with ME for 20 plus years which I developed after glandular fever so know realistically its about learning to manage it rather than having any expectations that theres going to be a fix.

There's some other weird stuff with covid too - it's normal for people who've had a bad viral illness to suffer ongoing issues. It's unheard of for people who were asymptomatic to start suffering issues (some serious) months after the infection has gone!

I don't know many who've had covid, but a friend in her early 30's got it - the infection was only picked up because she was in hospital for a kidney infection - she had no covid symptoms. Then a month later, hypoxia to the extent she couldn't climb stairs without becoming seriously out of breath. She spent a month sleeping upright (medical advice) and was terrified she'd die in the night. 2 months on and she's much improved thankfully.

It just shows how much we don't yet know about this novel virus.

People don’t understand what fatigue is. You cannot ‘push through it’.

Yes, it's normal to get the odd headache or aches and pains in general. But it isn't, and shouldn't, be normal to have them every day.

I've had post viral issues before - from pneumonia where is took me several months to feel fully better.

4 months on from Covid it's similar, though currently a bit more noticeable. I'm constantly tired. I get out of breath very easily and have chest tightness with some pains daily. I have 'brain fog' issues - to do lists and organiser charts alongside my diary are necessary! I'm also very emotional (but it has been a bad past 13 months which doesn't help) and seem to be getting periods of feeling hot and bothered, more easily stressed, etc. I already have arthritis so aches and pains and some of the fatigue may be down to that too. But the massive flare up of it all following Covid was also very much a factor.

I've also now got big blood pressure issues despite never having issues before - my medication means it's checked every 3 months and has been for over a decade. Never had an issue until I got Covid. It's now only just reaching normal levels after 4 months and that's down to the two different tablets I am taking to stabilise it.

It's not just feeling a bit dodgy for a week after having a big. This is 4+ months on and quite likely for the blood pressure it will be for life.

@Tootsey11

I'm 45. Cv in March 2020.

A year later I have daily chest pain, burning in my back and chest, the worst fatigue, headaches and sore throat, significant shortness of breath, one flight of stairs knackers me. I'm only able to do 50% of my pre covid work.

This is not a nice way to live.

I am sorry that you are still feeling so ill, but you are one of the first who will enable medics to get a better picture of the long term effects. It is still too early to be able to get a true picture of what is happening on a population level.

Another covid denial thread...

The NHS is preparing for hundreds of thousands of long covid sufferers. It is a real issue, it is going to be a really expensive cost burden for years to come. www.theguardian.com/society/2021/mar/05/nhs-long-covid-patients-after-pandemic

Well done Boris Johnson and your Conservative chums - not only have we the highest death rate, we'll also have very high numbers of long term sick!

I had glandular fever I was bedridden for 5 months after it, was 18 months before I could return to my full time office job.

So, I'm somewhat sceptical about the long covid being vastly different to typical post viral fatigue syndrome.

Also, I get daily stomach aches that this far has eluded medical science to work out why I get it.

So, I'm somewhat sceptical about the long covid being vastly different to typical post viral fatigue syndrome.

How many people get glandular fever in a single year?

Hundreds of doctors and research academics are speaking out about long covid. Their expertise should not be dismissed by people with only anecdotal experience and no wider knowledge.

Coverscan (clinical study) has a number of interesting webinars regarding long Covid here:
coverscan.com/

I participated in the clinical study last summer - they did MRI scans of our internal organs and many people with long Covid have organ damage which shows up on the MRIs. Others don't but do continue to have many ongoing symptoms, not just fatigue.

@notrub

This scientist says the proportion of DC with covid who suffer the after effects referred to as 'long covid' in my initial link is in fact no higher than the prevalence in the general population.

I.e. a DC who has had covid is no more likely to suffer 'fatigue' or a sore stomach than any other DC. He says there is no evidence these 'long covid' effects are actually caused by covid at all.

He suspects the fuss about long covid in DC is in fact about trying to keep schools closed.

twitter.com/mabsoud/status/1369889594246893568

And neither he nor I are covid deniers. I just don't believe 'long covid' can justify continuing restrictions that themselves do enormous harm to health.

And neither he nor I are covid deniers well yes you are, because you both are arguing against the mainstream scientific position.

Youa re entitled to hold that view, but you are arguing against the scientific consensus.

Aren’t they also symptoms of stress?

You can push through fatigue, I completely disagree. On two counts. I had significant fatigue with glandular fever. It was awful. But I got 9 A’s & 2 B’s at GCSE while suffering from it. I’d walk to school & need to go sit in an empty classroom sometimes to recover. I’d feel faint & breathless & exhausted from a 10/14 minute walk downhill. My school were fab & I was given extra time & support. I’d finish lessons early with a friend so I could walk slowly to my next class. I was given additional breaks. And sometimes I did stay at home. On a weekend, I’d get dropped at the cinema, I’d sit & watch a film & go home to bed afterwards shattered. My symptoms were up & down as the year progressed.

You can get through it if you really have too. As a teen, I had a really strong & bullish mind and I was ademant I wasn’t going to let this illness ruin my life.

And secondly. Any new parent. No-one has experienced exhaustion & fatigue like a breastfeeding mum with a newborn. You get by on an hours sleep, sometimes none. For weeks & months on end. Yet you get up & you care for your child. You meet friends. You carry on. I’ve been near the point of absolute collapse with my second child. 1-2 hours sleep a night & then chasing after a toddler all day. I think that exhaustion & fatigue is worse than the glandular fever if I’m honest. It’s hell on earth at times.

Fatigue isn’t easy but if you really want too or need too, you get through it. I’m not sure ‘fatigue’ exists in poor countries where if you don’t go work, you & your kids don’t eat. I’m sure they are beyond exhausted to a level we can’t comprehend in the rich western world but they have no choice but to carry on..

it's quite rude to be comparing 2 completely different illnesses.
Yes some people are fatigued after covid. But that isnt even the main issue.
Ive had glandular fever. I had it badly
and lost a couple of stone (i was even too light to give blood). I sat some of my finals but only half. I couldnt even watch a whole tv programme. It did take a year to feel better and the glands to go down and i caught all colds going that year. (The dean at uni said i should have repeated the year rather than push through as even in 2000 they knew that could cause issues with exhaustion). I got better though. I never thought i would die but the sore throat was killer and couldnt even swallow painkillers.
Anyway i think i got covid in april.
I did think I was going to die. Of suffocation and there was no medical help available. I couldnt breathe for months. It did gradually improve but i do have new 'allergies'.
But i then got muscle twitches and numb hands. Which could be MS/maybe parkinsons. And insomnia. I was sleeping maybe 4h.
My kids had a cough for over 6w each. And now dc1 says her throat hurts when she runs. So that may well be asthma. Which she didnt have before. They also had a few nose bleeds which neither had previously but that could be anything.
My dp seems to have reflux maybe as he clears his throat a lot now.
Now several of these things could result in earlier death (asthma/reflux can cause cancers i think). That is without any other damage.
Neither i nor kids are overweight and i was only 40.
There are thousands on the long haul groups and virtually no comments about just fatigue.
Its
Headaches that they are getting every day
Diarrhoea constantly
Tinnitus
Breathlessness going up stairs (including marathon runners/fit people).
Muscle twitching so sent for brain mri/spine to rule out ms.
New high bp
Thyroid issues or worsening of condition
T1 diabetes (again serious and can kill)

I do think because there has been no gp service there will be people who actually have something else who think it was covid.

But look at the mentions of how bad a few feel after the vax and think how bad some must feel when they have fevers for months/headaches/cant breathe.
I honestly think most people would take the cfs over some very concerning other symptoms.
I couldnt even read to dc2 because i couldnt finish sentences without having to breathe several times.
People had long term effects from sars 1 so it's not unexpected.
Some were cfs/hip joint issues and i think fibromyalgia.
And we know viruses can trigger both parkinsons and ms. And hand foot and mouth can trigger t1 diabetes. 1919 flu caused parkinsonism.
There is a real risk of people's lives being shortened and a lot of this isnt older people.

Anyway lets just hope they find some treatments.

There may well be different categories.
Say
Post covid fatigue
Post covid neurological
Cardiac
Resporatory

But i dont think most people would have noticed an extra headache etc so it is ongoing issues not one offs.
And i believe people when they say their kids cant run now.

@ChameleonClara it’s actually estimated 90 - 95% of the population have had an Epstein-Barr Virus Infection (which causes Glandular Fever) although clearly the numbers becoming ill are nothing like that. It’s thought to mainly be picked up in childhood or older teenage years - early 20’s. Studies show the virus can lay dormant and ‘flare up’ at times of extreme stress. It is also linked with certain cancers and Guillam-Barre Syndrome. Then of course there’s the PVF/ CFS and MS.

@HolmeH

You can push through fatigue, I completely disagree. On two counts. I had significant fatigue with glandular fever. It was awful. But I got 9 A’s & 2 B’s at GCSE while suffering from it. I’d walk to school & need to go sit in an empty classroom sometimes to recover. I’d feel faint & breathless & exhausted from a 10/14 minute walk downhill. My school were fab & I was given extra time & support. I’d finish lessons early with a friend so I could walk slowly to my next class. I was given additional breaks. And sometimes I did stay at home. On a weekend, I’d get dropped at the cinema, I’d sit & watch a film & go home to bed afterwards shattered. My symptoms were up & down as the year progressed.

You can get through it if you really have too. As a teen, I had a really strong & bullish mind and I was ademant I wasn’t going to let this illness ruin my life.

And secondly. Any new parent. No-one has experienced exhaustion & fatigue like a breastfeeding mum with a newborn. You get by on an hours sleep, sometimes none. For weeks & months on end. Yet you get up & you care for your child. You meet friends. You carry on. I’ve been near the point of absolute collapse with my second child. 1-2 hours sleep a night & then chasing after a toddler all day. I think that exhaustion & fatigue is worse than the glandular fever if I’m honest. It’s hell on earth at times.

Fatigue isn’t easy but if you really want too or need too, you get through it. I’m not sure ‘fatigue’ exists in poor countries where if you don’t go work, you & your kids don’t eat. I’m sure they are beyond exhausted to a level we can’t comprehend in the rich western world but they have no choice but to carry on..

"Pushing through" fatigue goes against all medical and scientific advice around fatigue management. And the fatigue you get as a parent of a newborn with zero sleep is not the same as post viral fatigue, or that caused by a brain injury or neurological condition. In long covid it's recognised that if people overdo it, they'll get get a resurgence of their symptoms. In ME, if you "push" yourself on a "good" day, you'll pay for it the next, or the one after that. It doesn't mean that people with chronic fatigue should be sedentary or bedridden, but you have to increase your activity gradually or you'll pay for it. Its called "boom and bust" for a reason.

One problem is that it’s an umbrella term. There’ll be people from both ends of the spectrum; from the person who had severe double pneumonia and has been left with permanent fibrosis (scarring of the lungs) to the person who barely had any symptoms but tested positive and is still experiencing fatigue. One is easy to diagnose and quantify and one is not. That’s absolutely not to say that it isn’t valid or real but it’s less easy to measure.

My GP diagnosed post viral fatigue, I had covid in October, it was at least 4 months before I felt like I was over it. In January there were still days when I needed to go to bed for an hour in the afternoon or that by 3pm I needed to finish work and lie down, luckily I'm WFH and my boss is brilliant.

@HolmeH

You can push through fatigue, I completely disagree. On two counts. I had significant fatigue with glandular fever. It was awful. But I got 9 A’s & 2 B’s at GCSE while suffering from it. I’d walk to school & need to go sit in an empty classroom sometimes to recover. I’d feel faint & breathless & exhausted from a 10/14 minute walk downhill. My school were fab & I was given extra time & support. I’d finish lessons early with a friend so I could walk slowly to my next class. I was given additional breaks. And sometimes I did stay at home. On a weekend, I’d get dropped at the cinema, I’d sit & watch a film & go home to bed afterwards shattered. My symptoms were up & down as the year progressed.

You can get through it if you really have too. As a teen, I had a really strong & bullish mind and I was ademant I wasn’t going to let this illness ruin my life.

And secondly. Any new parent. No-one has experienced exhaustion & fatigue like a breastfeeding mum with a newborn. You get by on an hours sleep, sometimes none. For weeks & months on end. Yet you get up & you care for your child. You meet friends. You carry on. I’ve been near the point of absolute collapse with my second child. 1-2 hours sleep a night & then chasing after a toddler all day. I think that exhaustion & fatigue is worse than the glandular fever if I’m honest. It’s hell on earth at times.

Fatigue isn’t easy but if you really want too or need too, you get through it. I’m not sure ‘fatigue’ exists in poor countries where if you don’t go work, you & your kids don’t eat. I’m sure they are beyond exhausted to a level we can’t comprehend in the rich western world but they have no choice but to carry on..

But having a baby and getting no sleep isnt fatigue in the same way that it is if you have an illness. Its tiredness or exhaustion. I have fatigue so awful at times that I do collapse just by trying to have a shower..even when that's the only thing I have tried to do that day. I faint, I'm unconscious, so I just cant do it. I live my life with fatigue and 'push through' all the time, because its constant (although fluctuates) and I want some kind of life outside of bed, but my life has been totally changed by the experience, I haven't been able to have children, I can only work very part time. Its totally soul destroying. People who say they are fatigued but actually mean "I'm busy" "I have a non sleeping baby", 'work has been hugely stressful" have no idea, those things can change and pass, and you can push through or go to bed early or take a nap and feel better.

[quote cathyandclare]The definition is after 12 weeks according to NICE and the RCGP

www.nice.org.uk/guidance/ng188/documents/final-scope[/quote]
Yes. Thankfully, but perhaps unfortunately because the symptoms can be severe and well seen by medical equipment,
the definition by Nice and the RCGP seems to be spot on.

Thankfully, but unfortunately, those in the medical world, including opticians, can see changes in peoples' bodies.
A person experiencing Long Covid, unfortunately, is not just dealing with extreme fatigue[which a few, and thankfully it is only a tiny number in my experience[in my rl I dont know anyone who thinks this or as even hinted at it, think they can push through!!].

Glandular fever and having a new baby are not what NICE describes.

fwiw, I had to have an ultasound 3 months after having covid. Thankfully, but unfortunately, what I had described to the doctor, the reason could be seen from the ultrasound. What had happened to my body, should not have happened, or been there. Thankfully, I havent had it since.
I am not alone, with bodily changes from Long covid. NICE describes things well.

Until you have fatigue from ME or long covid you have no idea how fucking awful it is. Its not being tired. It's a bit like that exhaustion you have with proper flu (the type were lifted your head can feel.impossible). It's a horrible draining exhaustion where each limb aches and feels heavy. Not a tired feeling you get because you have slept for 4 hours and had to go to work or a baby had kept you awake for the 159TH day in a row. Those make you tired. Post viral makes you fatigued.

And I'm in no way dismissing how awful being tired is with a baby. I've had three!

Totally agree with PP who say you can’t and shouldn’t ‘push through’ fatigue. It’s the worst thing you can do. It took a long time for people suffering with CFS/ME to be taken seriously. After years of research it is now known better and diagnosable. Long COVID is new. It will take years for us to understand it and know how to treat it properly. It will be manageable for some and life changing for others and everything in between.

I know two people who had it. Both 40s. Didn’t get COVID badly but got long COVID. Both very active people. One who has ‘pushed through’ the exhaustion of having three kids whilst working so not work shy. One male who does a lot of physical work usually. Year on she can now run, walk and do yoga again, just, but has to pace herself. The male friend still needs to spend lots of time resting and has been formally diagnosed with ME.

Long COVID is not a scare tactic and is not the reason for lockdown rules continuing. It’s in nobody’s interest to ‘keep us scared’ or ‘keep us locked up’. No good comes from that, for anyone. Oh...except the evil lizards that secretly run the governments of the world and are taking over while we are inside...eek!

Please can those who think that saying long covid has similarities to other post viral issues is dismissive and minimising look to themselves - they are themselves minimising post viral conditions. My relative has half his lung function, cardiac problems and diabetes following a virus several decades ago - the very issues that make him CEV to covid. It will limit his life and cut short his career. In seeing similarities with long covid I am certainly not minimising and it is fucking insulting to say so. Of course the significant number of cases, and perhaps a higher proportion of ongoing problems compared to other viruses, means that long covid is going to have an impact on a larger number of people. And if it means other post viral conditions are taken more seriously then so much the better