
Coronavirus doctor's diary: Why are people remaining ill for so long? - open-source-ux
https://www.bbc.co.uk/news/stories-53368768
======
StevenWaterman
My wife got covid in march. She wasn't hospitalised, but we did have to call
an ambulance multiple times. She 'recovered' and was fine for about a week
before developing most of these symptoms.

The most infuriating part is how little help there is from medical
professionals. She's now 4 months in with what can only be seen as a chronic
health problem, but the only medical advice doctors will give her is to rest.

After she recovered and came down with the post-covid symptoms, we went to a
doctor whose best guess was that she had somehow got another viral infection
(despite not leaving the house). My only hope is that as these symptoms become
more widespread and well-known, long-term support is made available.

It's incredibly frustrating that we've known about these issues for a couple
of months (and so have many others, old.reddit.com/r/covid19positive was full
of similar stories in march). Meanwhile it seems like medical professionals
are only just starting to consider that it can affect you for more than a
couple of weeks.

~~~
script3r
You should research Chronic Fatigue Syndrome / Myalgic encephalomyelitis.

The medical community, from my experience, does not handle this type of
diagnosis well.

I’ve experienced post-viral fatigue symptoms that lasted well over 8 months,
and almost all doctors I visited (ranging from primary care to neurologists)
suggested simply rest and/or believed it was depression related (even though I
have never suffered from depression before).

I hope your wife gets better. Remission from these symptoms is possible, but
sadly, I don’t think you’ll get more information out of the doctors.

~~~
hh3k0
> The medical community, from my experience, does not handle this type of
> diagnosis well.

I've read some time ago that Stanford scientists developed a blood test. It'll
be harder for docs to ignore once there's a proper diagnostic tool.

~~~
rtp
Yeah, in its initial study, the nanoneedle had a 100% specificity and
selectivity, and according to Ron Davis - main author - the results have held
up as they've increased the number of tested people. That said it might also
give a positive result for other illnesses. Hopefully a follow-up will be
published soon.

~~~
dm319
Be wary of anything that claims a 100% sensitivity and specificity. It usually
indicates the wrong gold standard or poor methods.

------
satysin
I had COVID end of February/early March. Thankfully I didn't need hospital
treatment, in fact at the time I didn't even know it _was_ COVID. It was only
recently I got it confirmed.

However several months on I still notice the effects from it. Mostly regular
fatigue and almost daily shortness of breath.

Last night I was laying in bed going to sleep and got quite panicked as it
feels like I am not getting enough air in each breath. I have moment like this
almost daily and it is extremely unsettling and worrying.

I am in my mid-thirties and generally quite healthy. A bit overweight but
before COVID I didn't get out of breath going up the stairs. I didn't find
myself needing to lie down on the sofa from exhaustion. I am still able to run
but no where near as long as I could just a few months ago. Putting it bluntly
it is fucking scary.

I am very fortunate that two good friends of mine are doctors (a cardiologist
and her husband a microbiologist) and they have been kind enough to check on
me weekly with some basic lung function tests and blood work but they are
seeing these kinds of issues with many recovered COVID patients.

~~~
garganzol
Does your daily routine include a bit of exercising or/and walking? What's
your daily walking distances?

I am asking because some post-pneumonia (non-COVID) patients tend to have
temporary shortage of breath/fatigue syndromes. And a good way to get rid of
them is to get some elementary body movements like relaxed walking among tree
alleys. Nothing crazy, just comfortable stress-less motion.

It helps to clear up the lungs and balance the immune response.

I wonder if this information can be of any help in your situation.

~~~
satysin
I have a 7yo son so we go out pretty much every day to the park. I haven't
tracked anything but ballparking it from the distance and how long we are out
I probably walk around 2-3 miles a day. Some of that will be a light jog while
kicking a ball around or catching frisbee.

I have had a few gentle runs as well for 5-7 miles but as previously mentioned
they are exhausting me right now and exacerbating my anxiety about the impact
COVID has had to my body so I have cut them out for the most part and sticking
to gentler exercise with my son.

I am hoping all of this is made worse by the added stress of life right now. I
am on holiday for the next few weeks so looking forward to a change of scenery
and less day to day responsibilities.

------
zby
OK - but what are the stats here? Worldometer shows that there are more than 8
million Covid survivors, how many of them have the prolonged symptoms? 8
million is really many people - so I would not be surprised if there are a few
strange stories
([https://www.gwern.net/Littlewood](https://www.gwern.net/Littlewood) as
always).

~~~
Al-Khwarizmi
The post has a figure with rather scary stats. Although I suppose it comes
from a followup of severe cases, not from a random sample of cases? Otherwise
it's really, _really_ scary.

~~~
zby
Ah - yeah - I though the graph was about patients who report persistent
symptoms not the whole population. If indeed 60% of all Covid patients have
fatigue and 40% breathlessness after more than 60 days - than it is scary
indeed. But we don't know how the 143 patients where found - are they random
people with Covid or are they only hospitalized Covid patients? With 8
millions we should really have better stats.

~~~
r721
Quote from another story (by Der Spiegel):

>Long-term* symptoms reported by COVID-19 patients

>47% general fatigue

>24% prolonged respiratory problems

>*longer than 30 days; analysis of a study of COVID-19 symptoms from King's
College London;

>8,065 people who tested positive, of whom 857 had long-term symptoms

[https://www.spiegel.de/international/world/covid-19-many-
peo...](https://www.spiegel.de/international/world/covid-19-many-people-stay-
sick-after-recovering-from-coronavirus-a-d814c20b-fb3d-47b1-bd2b-d6fd65e0ef33)

~~~
zby
OK - that would be compatible with the theory that the original article were
about those who had long-term symptoms. Journalism is a mess. But the 10% is
still scary.

~~~
saalweachter
The good news is that we have no idea at this point how long-term long-term
will end up being; maybe they go away in six months or a year. Of course,
that's also the bad news -- maybe they don't.

~~~
lemming
From the article:

 _We know from studies of patients who had Sars - one of the family of
coronaviruses - back in the 2003 epidemic, that almost half of survivors went
on to have chronic fatigue or other long-lasting symptoms. So it should not be
a surprise that this cunning descendant, Sars-CoV2, should have a similar
inheritance._

That doesn't sound good.

------
sradman
> We don't yet understand why these patients are having such long-term
> problems.

ACE2 receptors are found in the Type II pneumocytes [1] of the lung alveoli.
These cells produce the pulmonary surfactant that changes the surface tension
which, among other things, controls how hard it is to breath in/out.

I'd be surprised if these damaged/destroyed cells were fully regenerated. The
question I have, is whether the breathlessness is due to the sensation of
extra muscular effort required to breathe or a measurable lower SpO2?

Long term, I wonder if COVID-19 related pneumonia will increase the incidence
of lung cancer as these individuals age.

[1]
[https://en.wikipedia.org/wiki/Pulmonary_alveolus#Type_II_cel...](https://en.wikipedia.org/wiki/Pulmonary_alveolus#Type_II_cells)

~~~
qrbLPHiKpiux
The Pentagon sent a memo to all military physicians. COVID survivors
permanently disqualified from ever joining the military.

What do they know that we don't?

[https://www.militarytimes.com/news/your-
military/2020/05/06/...](https://www.militarytimes.com/news/your-
military/2020/05/06/coronavirus-survivors-banned-from-joining-the-military/)

There's been an edit since I last seen it, here's the updated guidance:
[https://www.militarytimes.com/news/your-
military/2020/05/21/...](https://www.militarytimes.com/news/your-
military/2020/05/21/the-ban-on-covid-19-survivors-joining-up-has-lifted-but-
some-cases-could-still-be-denied/)

~~~
dragonwriter
> What do they know that we don't?

They know exactly what we know: there are a variety of apparent delayed
effects, some quite serious, and isn’t clear what the whole set is and how
long they take to manifest.

This is a policy based in precautionary cognizance of ignorance, not some
special detailed occult knowledge.

Once we have a better idea, the policy will be reviewed and probably
eliminated or narrowed to focus on specific issues of concern.

~~~
gremlinsinc
It'll be interesting to see if the NBA starts back up, if some of the players
who had COVID have issues just making laps up/down the courts. I wonder if the
'weaker' or 'long-term effected' players might take sabbaticals or sit-out a
season or two or retire altogether.

------
kesor
The more important question is why people are being sick for so many years
with "modern medicine" doing absolutely nothing to get them out of their
sickness state. Diabetes type II, heart problems, autoimmune problems, all
these chronic diseases plaguing most of the human population on planet earth
for the last several hundred years (when "modern" medicine existed) and none
of them going away.

Covid mostly takes the people who are already sick, and kills them. Would be
nice to figure out how to not have so many people sick in the first place.

~~~
lm28469
> them out of their sickness state. Diabetes type II, heart problems,
> autoimmune problems, all these chronic diseases plaguing most of the human
> population

You mean all these diseases that are almost exclusively due to lifestyle, ie.
lack of physical activity, poor diet choices, &c. ?

People knew 2000 years ago that gluttony and sloth weren't good things, it's
not "modern medicine"'s role to cure our lack of will.

~~~
DangitBobby
I'm interested to know where you got the idea that autoimmune disorders are
due to lifestyle?

~~~
MrRiddle
Please read the site guidelines and refrain from ill intentioned comments.

~~~
jlokier
In my opinion DangitBobby's comment is reasonable and interesting, not ill-
intentioned.

lm28469 quoted a list which includes "autoimmune problems" and linked all of
them to gluttony, sloth and lack of will.

That strikes me as nonsense. To the best of my knowledge, people suffering
with autoimmune problems can't just fix it with a bit of will, and life's hard
enough without people making it worse by telling them their disease is their
own fault.

But regardless of what I think it is perfectly reasonable to question that
link.

~~~
MrRiddle
OP said “almost exclusively” leaving room to exclude autoimmune diseases.

> “ life's hard enough without people making it worse by telling them their
> disease is their own fault”

This is absolute nonsense.

~~~
jlokier
> This is absolute nonsense.

Please refrain from breaking the site guidelines...

------
hatenberg
I had fatigue for about 3 month after a bout with mono (mid 30s). Lost 15 kg,
had to restart running from scratch after running 10k @2 times a week for
years. It was scary, the doctors said there is no treatment just optimising
healthy living and hoping it goes away.

Ever since this started I could not understand the people here on HN arguing
there is no proof that there could be long term effects. Now we have proof of
the opposite and they are out in force marginalising (its just a few people)
to keep their own fears contained.

------
throwaway84774
Something that has been striking about COVID-19 is that it seems to have been
consistently underestimated by experts, especially in western nations. With
the exception of Singapore (which put an Australian in charge of its
response), Asian countries that were hit hard by SARS or MERS responded
swiftly and decisively: Taiwan, Hong Kong, South Korea and China crushed the
virus. Other countries seemed to dither, and react slowly. Australia, which
was the exception, seems poised to squander its gains.

Is it because of limited mortality in the young (which doesn't seem to
translate to limited morbidity)? Is it the fact that "coronavirus" meant
"common cold" to medical experts? Arrogance? Complacency?

To a non-expert, a rapidly spreading novel virus with unknown long-term
effects would be something to be eradicated, but the emphasis from western
governments in particular seems to be reactive and ambivalent and hinging on
the hope of a vaccine.

~~~
kinghtown
I live in Taiwan.

Simple answer is that it’s a cultural difference which has a positive impact
on health. Wearing a mask was normal behaviour before covid so it’s a non
issue to wear one during the peak. There is no one screaming about their
independence being taken away by being “forced” to wear a mask. All the
homeschooler supermom Karens and anti vax types protesting about their right
to choose a mask or whatever looks really really bad over here and Taiwanese
people generally think westerners are retarded in regards to covid.

Also, asians are healthier, slimmer with Well rounded diets (on average.) Tons
of smokers here though. A lot of Taiwanese people are happy homebodies too.

~~~
gremlinsinc
Many westerners think anti-mask westerners are retarded as well, lol. I can't
even imagine how insane we must look to other cultures right now.

------
pgt
(IANAD) I wonder if any of the neurological symptoms like depression and
memory-loss are caused by chronic inflammation following infection. Virus
reservoirs are mentioned in the article. Could it be that there are bits of
broken up, deactivated virus floating around triggering auto-immune
conditions?

~~~
philjohn
They mention that in the article.

The other interesting point is - chest x-ray and sound are both normal, but
someone is still getting breathless which could point to it being more about
vascular involvement in many cases - perhaps the blood vessels that are
responsible for uptake of oxygen from the lungs are inflamed and not working
as effectively.

------
LatteLazy
This should be a huge wake up call for people to look after their health. We
are going to see this sort of pandemic more and more regularly, so it's time
to make those lifestyle changes you've been putting off! Lose that weight, cut
back on the sugar, get some exercise and sleep more.

~~~
paulcole
> We are going to see this sort of pandemic more and more regularly

What is this based on?

~~~
loopz
Eradication of wildlife.

~~~
indymike
Please explain?

~~~
loopz
Deserves much more than that:
[https://duckduckgo.com/?q=virus+pandemic+wildlife+destructio...](https://duckduckgo.com/?q=virus+pandemic+wildlife+destruction)

~~~
paulcole
Yes, I can see how one worldwide pandemic in 100 years leads to the direct
conclusion that worldwide pandemics will happen more and more often.

How often are we talking here?

~~~
loopz
Let's wait and find out after the next 5 sigma event.

~~~
paulcole
OK so another 100 years? Tell it to my cryogenically frozen head.

------
gerbler
My wife likely had covid in March (she was unable to get tested at the time
due to no fever) and experiences similar symptoms described in the article
(breathlessness and fatigue). Interestingly, she had a physical in February
and all blood work was normal. She went for another check-up in June due to
her breathlessness and found that she had hyperthyroidism. Our hypothesis is
that her thyroid problem could have been caused by covid. Mentioning in case
anyone else has observed this pattern.

------
disabled
This is a worthwhile read too, about how COVID-19 is believed to cause a new
type of inflammatory syndrome, in just about everybody:

Coronavirus warning from Italy: Effects of COVID-19 could be worse than first
thought: [https://news.sky.com/story/coronavirus-warning-from-italy-
ef...](https://news.sky.com/story/coronavirus-warning-from-italy-effects-of-
covid-19-could-be-worse-than-first-thought-12027348)

Also:

Older Children Spread the Coronavirus Just as Much as Adults, Large Study
Finds: [http://archive.is/D5wQn](http://archive.is/D5wQn)

(The study of nearly 65,000 people in South Korea suggests that school
reopenings will trigger more outbreaks.)

I understand why people want schools to reopen. I also understand that it is a
place where social services are executed.

But, this is extremely problemsome.

------
rjsw
I have been ill since early March, never bad enough to need to go to hospital.

Have had mono a couple of times and do tend to get post-viral fatigue, this is
different as I still have symptoms of covid19 as well. Sore throat and
conjunctivitis are the main things that affect me, did notice that my sense of
smell improved a couple of weeks ago.

Was pretty fit before this and still did competitive sport in my 50s.

------
hprotagonist
More and more, SARS-CoV-2 is sounding like polio more than any other disease
in our recent history.

------
echelon
There are numerous studies coming out that report immunity against coronavirus
does not last long:

[https://www.cidrap.umn.edu/news-
perspective/2020/06/chinese-...](https://www.cidrap.umn.edu/news-
perspective/2020/06/chinese-study-antibodies-covid-19-patients-fade-quickly)

[https://theconversation.com/immunity-to-covid-19-may-not-
las...](https://theconversation.com/immunity-to-covid-19-may-not-last-this-
threatens-a-vaccine-and-herd-immunity-142556)

> Finally, the researchers measured how long the antibody response lasted.
> This is the most important data. Unfortunately, antibodies levels began
> falling after day 20 and only 17% of patients retained a potent level at day
> 57. Some patients completely lost their antibodies after two months.

It's terrifying to think that our adaptive immune system might not be good at
learning Covid-19. I don't know that this is the case, but our immune system
evolved to fight the things we deal with regularly over many centuries. Just
like HIV, this thing is relatively new on the evolutionary scale.

Perhaps those that remain sick aren't clearing the virus completely? It may be
this in some combination with vascular/organ damage and immune system
depletion.

~~~
matwood
Antibodies may not stay around, but it's hard to know for sure about immunity
without also looking at t-cell response. At least that's my non-biologist
reading of the many articles on this topic.

------
known
Sounds like Cancer symptoms

------
Seb-C
I got sick in march with covid-like symptoms but could not get tested. I have
also experienced being out of breath when climbing stairs or walking. I also
started to worry and attribute other symptoms like headache to this, but then
realized that :

\- I spent 3 months at home without going out much

\- I'm wearing a mask everytime I go out and I noticed that masks make
breating harder

\- I did not move much for 3 months and worked at home. This is significantly
less than my usual 30 minutes of walk + 1h of transports + climbing stairs 4
times a day

\- Only seeing the world through the news has a big negative psychological
effect on me

Now it is just my humble experience. I am certainly not saying that people
does not have symptoms and I only am one dot of incomplete data.

I just want to say that if you got sick and then experienced long terms
effects, please don't forget about the radical life-style changes that you are
experiencing before attributing everything to the virus.

Understanding this helped me to rebalance my daily routine and get and feel
better.

~~~
garganzol
Downvotes to your post are unwarranted.

Western medical school tends to think that pulmonary fibrosis is incurable,
despite the fact you have just provided a practical recipe for post-pneumonia
rehabilitation.

Probably what happens is a casual reader just sees a statement that says that
"masks make breating harder" and gives you a downvote without further thought.
This is what I call a comfortable ignorance.

Kudos for finding the practical way out of this situation.

------
chiefalchemist
Keep in mind, the majority of acute cases happen to people with pre-existing
conditions. Deaths have the same profile. Of course there are exceptions.
"Perfectly healthy" people can be hit hard.

The articles, and many similar, consistently fail to mention the pre-existing
conditions of the people in the study.

Editorial: A couple weeks ago I saw a news story about a man who "survived
Covid-19" after 60 days in hospital and 40+ days on a ventilator. They showed
him leaving hospital in a wheelchair. He was easily 275 lbs, perhaps 300 lbs.

You don't put on weight being fed via drip or tube. There's a reason it's
called "morbidly obese." I'm glad he survived. No one deserves to die. I'm not
convinced the virus was his only significant medical issue.

It's time we start being honest about the dangers in the foods we eat and the
lifestyles we lead.

------
dustinmoris
Just to counter some of the negative news, my wife had COVID, she picked it up
at work from her colleagues where the majority of them had COVID, even the
reception staff at their medical practice where she works all got COVID and
when she was at home coughing I also got COVID. We all had mild symptoms,
mostly a cough, fever and loss of smell and taste. We all recovered from it
like from a cold or flu. At no point did anything bad happen. No organ
damages. No lasting health issues. This was in April, so many weeks ago and
we’ve all been super healthy and fit since then. At her work nobody even talks
about it because it’s such a non thing in their eyes. I perform physically
just as good as I did before I got ill. So there’s that, good first hand
experiences which you’ll never hear because it doesn’t fit the current media
narrative. Luckily smart people will look at science and hard statistical
facts rather than individual selected stories. Anxious people will always be
anxious. You can choose to call me a liar or whatever, but Prince Charles had
COVID and recovered from it like from a normal cold, so did the British prime
minister, lots of staff and MPs around him, so did Tom Hanks, Idris Elba, and
literary hundreds of other super famous celebrities from old to young. You
going to call them all liars too? It’s important to stay mentally healthy and
I think people need to stop reading this fear provoking nonsense which really
doesn’t change anything except making people mentally ill. The virus won’t
become more or less dangerous by reading sensationalised news stories which
aim at playing into people’s worst fears. I find it abhorrent.

~~~
lm28469
You're doing exactly what you're criticizing...

Anecdotes are meaningless, yours included, it doesn't matter if it's Idris
Elba or the Queen of England, what matter are stats, and they don't lie, a non
negligible percent of people get real sick and will have lasting effects.

Is it a coincidence that the only first world country that failed at
containing the epidemic tells everyone that "it's not that bad", "not so many
people will die", "there are no side effects", it's a disgrace.

~~~
dustinmoris
> Anecdotes are meaningless, yours included

Agreed, which is why I specifically point out to look at statistical facts and
not individual stories.

> You're doing exactly what you're criticizing

No, because I specifically point out to look at the actual numbers rather than
individual stories ;)

> Is it a coincidence that the only first world country that failed at
> containing the epidemic tells everyone that "it's not that bad", "not so
> many people will die", "there are no side effects", it's a disgrace.

Not sure which country you are talking about. I live in the UK and think
there's many things we could have done better and many things where we
overreacted. I don't think any country has contained the virus, as the virus
cannot be contained. We see small outbreaks everywhere, so it's difficult to
claim that anyone has contained it. For every country which has done X you'll
find another country which hasn't done X and their curves still look
incredibly similar. Take Sweden as an example. We haven't heard any news on
Sweden for a while, which can only mean that they must be doing well now and
looking at their curves they did flatten indeed and their death counts are
drastically going down. So I think anyone who is smart enough not wanting to
embarrass themselves will know to hold back with any premature _clever_
comparisons until a couple years down the line.

~~~
matwood
> Take Sweden as an example. We haven't heard any news on Sweden for a while,
> which can only mean that they must be doing well now and looking at their
> curves they did flatten indeed and their death counts are drastically going
> down.

There's been a lot of news on Sweden.

Last week: [https://www.nytimes.com/2020/07/07/business/sweden-
economy-c...](https://www.nytimes.com/2020/07/07/business/sweden-economy-
coronavirus.html)

Just a couple of days ago: [https://www.cbsnews.com/news/sweden-covid-
coronavirus-deaths...](https://www.cbsnews.com/news/sweden-covid-coronavirus-
deaths-make-sweden-example-of-how-not-to-deal-with-covid-19/)

Daily deaths have gone down, but Sweden remains the 5th worse with overall
deaths per capita in the world. It will be interesting to see how the Swedish
strategy plays out when the summer ends.

