'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

Dont be so ridiculous!
Most people usually dont feel rough for months after flu. (Maybe a bit of a cough.)

Its hardy surprising that people still feel ill after covid. It is actually damaging heart lung kidneys, brains.

Trying to scare people would be talking about the possible MS or parkinsons etc.

Lots of previously hospitalised and released then die later.
Or about finding 8 all monkeys had lewy bodies in their brains after covid.

And china were talking about all this organ damage from the start.

Considering people with ME/CFS have pretty much been ignored by medics and research for decades, I doubt long covid would be used as a reason to keep restrictions.

For what its worth, long covid sounds very similar to ME, and as a sufferer I find the huge reaction to long covid a massive slap in the face. I don't want to be unsympathetic to those suffering it, believe me I know how hard it is, but after 12 years of zero support you become rather negative about it.

I find it interesting that if someone develops a condition after Covid, it always seems to be "long Covid", whereas if someone develops a condition after a vaccine, it is very properly pointed out that a certain number of people develop any given condition at any time and we should wait to see whether there is any statistical significance to this event.

I do think it could do with a more specific definition. If it’s ‘still some kind of symptoms after 4 weeks’ then I had ‘long Covid’ myself, but mine were fairly mild symptoms that really weren’t comparable to someone who’s still dealing with fever and exhaustion two months later.

I agree - I absolutely believe that long covid occurs and is awful for many of the people who suffer it; I also believe that it's really unhelpful to count people who still have a cough five weeks on as suffering from long covid (as the definition used by the ONS did). If we want to actually find out the prevalence of long covid, which is a really important thing to know, inflating the numbers isn't helpful.

@Sulusu

Considering people with ME/CFS have pretty much been ignored by medics and research for decades, I doubt long covid would be used as a reason to keep restrictions.

For what its worth, long covid sounds very similar to ME, and as a sufferer I find the huge reaction to long covid a massive slap in the face. I don't want to be unsympathetic to those suffering it, believe me I know how hard it is, but after 12 years of zero support you become rather negative about it.

Agree with this completely. Similar to people who have suffered with post viral fatigue syndrome after glandular fever. All completely ignored and just told its psychological. I say this as someone who is suffering from recurrent chest infections after having Covid. It’s not a new thing.

The definition is after 12 weeks according to NICE and the RCGP

www.nice.org.uk/guidance/ng188/documents/final-scope

What happened to the “long Covid clinics” being set up?

Vague because we don't really know yet.

"justify the continuation of restrictions" is code for "It's a trick by the government" and is usually followed by some claim about Bill Gates/5G No reasonable person thinks restrictions to save lives are evil.

I had glandular fever at 21 and then was diagnosed with post viral fatigue and fibromyalgia. I have MS which showed up on a scan when I was 25....

Long-covid IS an umbrella term because the condition isn't at well understood.

It's conditions that LAST post infection -some of these at least are caused by organ damage caused by the virus and they mostly repair over time, although for things where the sense of smell has been changed - that may be permanent, we just don't know yet.

Also conditions that don't show until long after the virus is gone - these are believed to be caused by the immune system - nobody know how long they'll last for.

The conditions range in severity from being problematic to life-changing - a significant number sadly fall into the latter group.

The OP puts down fatigue as though it's nothing to worry about - many people have had to give up their careers already because of this.

It's sad to see that a year into this epidemic, there are still people as selfish and ignorant as the OP trying to diminish the damage covid has caused.

The NICE guidelines are quite clear

www.nice.org.uk/guidance/ng188/chapter/1-Identifying-people-with-ongoing-symptomatic-COVID-19-or-post-COVID-19-syndrome

www.nice.org.uk/guidance/ng188/chapter/Common-symptoms-of-ongoing-symptomatic-COVID-19-and-post-COVID-19-syndrome

They define as:

ongoing symptomatic COVID-19 if people present with symptoms 4 to 12 weeks after the start of acute COVID‑19 or

post-COVID-19 syndrome if the person's symptoms have not resolved 12 weeks after the start of acute COVID‑19.

Long Covid is a term patients use which is why it is commonly talked about.

There are lots of people impacted by this virus in so many different ways, people with long term lung damage, heart muscle damage, nerve damage, eye damage, change in immune function (found by blood tests), hearing loss, blood clotting complications for example which is all measurable with scans, tests etc... Many of these people were never in hospital. Then there is the post viral fatigue which is affecting many too seen also with other viral infections.

If talking about this highlights these issues, helps get these people specific healthcare for their recovery and makes people aware that even if you are not in one of the most at risk groups that you could still suffer longer term impacts of Covid then it should be spoken about. This will mean people will know what to look out for and know how to seek support if they are still struggling with symptoms a while after the infection.

I hope that it also means people with chronic fatigue and M.E. will receive more support in the future as they have so often been gaslighted and ignored.

It is a very small number of children and there are children who suffer with post-viral fatigue, chronic fatigue and M.E. following other viral illnesses. Children are now back in school because the risk is not thought to be worse than the benefits for children.

But what are these symptoms- tummy pain, headaches and fatigue. Surely these are all extremely common ailments for DC and adults.

incidentally, if you get these every day, you seriously need to change your lifestyle - try staying off the cocaine and vodka for a few days. Newsflash for you - most people don't get these every day unless they're ill with something.

Covid is like a soap for the gullible. Every week there’s a new drama for people to get worked up about. Scratch the surface even a tiny bit and 90% of the hype is utter horse shit.

One of my faves was the other week when mysterious brazilian variable sufferer couldn’t be identified because they took a test and didn’t leave their contact details. Haha, as if that’s even possible. They were appealing for anyone who’d not had a result to contact them, which to anyone with a functioning brain cell means the test got lost, just like countless tests have got lost.

I’d like to say they think we’re bloody stupid, but sadly many people are.

Fwiw, those of us on the long covid support group on MN, seem to have had it often up to 12 months.
Or else, the new ones joing the thread, seem to have had it for 3 months or more, before they join.

Covid clinics - some on the Long Covid support group are reporting being given appointments for referral to them.

I suspect we’ll see a fair drop in long covid cases once life resumes as normal. Less time to think about feeling ill, more incentive to push through the fatigue & feeling naff.

Obviously there are serious, long term problems caused by covid. Organ damage etc but the minor fatigue, headache .. I predict we’ll see less reports. Or if people do report, they’ll just carry on with life anyway once there are actually things to enjoy..

I had glandular fever in my teens & it took 12 long months to recover. In that time, I did my GCSE’s & did the usual teenage things. It was bloody exhausting and I often felt dreadful but I wasn’t missing out on the cinema or shopping in town or hanging in the park cos I fancied in the skatepark 😂

It won't be that clearly defined while there is still so much to learn from it. Of the 10 or so people I know who had Covid, two are suffering from ongoing issues but they are different from each other. For one it is now 12 months on and she still suffers from breathlessness and eyesight problems. A scan showed a partially collapsed lung. The other is suffering from heart palpitations and fatigue. It has only seriously been looked into as a condition fairly recently and more will become apparent as further studies are done.

Yes, on the Long Covid support thread, often it is a case of finding yourself with similar symptoms to someone else on there, and not always that similar to another 8.
Long covid is a strange thing.
I sometimes wonder whether it attacks the weakest parts of you, that you already have, if you see what I mean.

@HolmeH

I suspect we’ll see a fair drop in long covid cases once life resumes as normal. Less time to think about feeling ill, more incentive to push through the fatigue & feeling naff.

Obviously there are serious, long term problems caused by covid. Organ damage etc but the minor fatigue, headache .. I predict we’ll see less reports. Or if people do report, they’ll just carry on with life anyway once there are actually things to enjoy..

I had glandular fever in my teens & it took 12 long months to recover. In that time, I did my GCSE’s & did the usual teenage things. It was bloody exhausting and I often felt dreadful but I wasn’t missing out on the cinema or shopping in town or hanging in the park cos I fancied in the skatepark 😂

I had glandular fever in my teens too, and did the things you are talking about. But with Long Covid, the fatigue is often not on a par with that, by any means. Pushing through is not the advice with Long Covid.

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.

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.

@notrub

The link I posted defines any occurrence of a sore stomach or cough etc 4 weeks after a positive covid test as long covid. Even if it is only for one day.

As other scientists have pointed out, many of the ailments being reported as long covid are no more common in covid sufferers than the general population.

Yes, I think there needs to be a clearer distinction made.

The NICE guidelines do say that most symptoms resolve within 12 weeks. They distinguish between people with symptoms that last 4-12 weeks and those with symptoms beyond 12 weeks - ‘post covid syndrome’ but in general usage, ‘long covid’ is used for anyone with symptoms past 4 weeks. These can range from fairly mild right up to people who are struggling with serious illness for months and months. Perhaps ‘long COVID’ should only refer to people with symptoms beyond 12 weeks and ‘ongoing covid’ could be used for 4-12 weeks if most symptoms resolve within that time?

[quote JuneSummer]@notrub

The link I posted defines any occurrence of a sore stomach or cough etc 4 weeks after a positive covid test as long covid. Even if it is only for one day.

As other scientists have pointed out, many of the ailments being reported as long covid are no more common in covid sufferers than the general population.[/quote]

1. It's a survey of children, NOT a scientific study

2. Clearly you haven't read it - just blitzed through to pick out some bits that fit with your preconceived notion that covid isn't a threat to anyone.

3. No scientist has pointed out that the ailments being reported as long covid are no more common in covid sufferers than the general population - at least not with valid statistics. I can't rule out an idiot like Gupta etc claiming that, but it's no more valid than your claim without data to back it up.

Some other quotes you chose to ignore.
Many children has symptoms lasting 10 months or longer
95% of children had at least 4 continuing symptoms!
Only 10% of children had returned to their pre-covid levels of activity, while 21% were unable to enjoy any activity.

So either you can't read, or you're a deceptive covid-denying troll - I'll leave it to others to decide which.

Thank you those who have clarified this, interesting and useful to know.