Coronavirus - let's keep this in perspective w... - CLL Support

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Coronavirus - let's keep this in perspective while LIVING with CLL

AussieNeil profile image
AussieNeilAdministrator
34 Replies

While there is no denying that our community is at significant risk from the coronavirus Covid-19 due to our age and compromised immunity, we have regularly been provided with good advice through this community on how to avoid infections and look after our health. That immediately puts us in a much better position than those that blithely trust in their immune system without taking the precautions that many of us have adopted as a way of life.

The accompanying graph puts the death rate from coronavirus into perspective compared to the risks from other illnesses in our communities. Note that the much higher death rates for many of these illnesses than covid-19, can be reduced by the greater use of vaccinations, yet collectively we fail to do this.

informationisbeautiful.net/...

Here's another good site that summarises information about covid-19

worldometers.info/coronavir...

The Confirmed Cases and Deaths by Country, Territory, or Conveyance table in this section worldometers.info/coronavir... is very interesting, particularly the final column, which shows the number of cases per million population. Italy has the highest figure of 350 cases per million, or about 1 in 3,000 people. The USA has 8.6 per million, or about 1 in 100,000 people. Now obviously there are hot spots as well as places where 10s or 100's of thousands of people pass through every day. If you can't avoid those places, washing your hands and avoiding touching your mouth, nose and eyes will greatly reduce your risk of infection.

For comparison, Percentage of Influenza-related burden by age group, 2018-2019 Influenza Season in the USA

Age range, Symptomatic Illnesses, Deaths

5-17 years 21.6 0.6

18-49 years 33.5 7.2

50-64 years 26.0 16.6

65 and older 8.7 74.8

A few of us have observed how social media is largely responsible for panic behaviour. The Information is beautiful site includes a graphic illustrating this, per the table below:

Mentions in the media

HIV 69.5 million

SARS 66.3 million

MERS 33.1 million

Ebola 16.2 million

Covid-19 2.1 Billion

Which leads into Important ADVICE FOR YOUR MENTAL HEALTH FROM WHO

"Minimize watching, reading or listening to news that causes you to feel anxious or distressed; seek information only from trusted sources and mainly to take practical steps to prepare your plans and protect yourself and loved ones. Seek information updates at specific times during the day, once or twice. The sudden and near-constant stream of news reports about an outbreak can cause anyone to feel worried" WHO: Mental Health and Psychosocial Considerations During COVID-19 Outbreak who.int/docs/default-source...

To keep informed of current coronavirus developments, select the following link and select 'Save' below that post, not this one:

healthunlocked.com/cllsuppo... CLL Cure Hero doctor John Byrd's advice is specifically appropriate to us all.

June 2020 update

I couldn't find an update to the accompanying graphic, but as we have seen, there has been a huge variation by country in the percentage of deaths per million population caused by SARS-CoV-2, with governments trying desperately to balance associated economic and mental health costs. Hopefully we can all learn from sharing gathered data on how to live reasonably safely with this threat to our health, which sadly is not going away soon.

mdedge.com/infectiousdiseas...

I'm maintaining a CLL related COVID-19 FAQ and updates post here:

healthunlocked.com/cllsuppo...

Neil

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AussieNeil
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34 Replies
Zia2 profile image
Zia2

It has really started to spread this week in the US. So we know it’ll get worse before it gets better and for those of us that still work, especially at schools or with or as health professionals it’s worrisome for sure. The US isn’t prepared and doesn’t have enough tests yet so I’m so thankful my town has basically shut down for a couple of weeks to see how it unfolds here and to minimize it as much as possible.

cajunjeff profile image
cajunjeff

I think this is the link to Dr Byrd. His comment that “most” of us will get covid is beyond alarming to me. Does he mean over 150 millions Americans will be infected?

That’s part of the covid thing I don’t get. The confirmed numbers in China and Italy are big, but just a tiny percentage of their populations, even if you assume the cases are underreported by a factor of ten. And it’s peaked in China I think.

So will it be millions of us or a few hundred thousand. In the US three hundred thousand cases, as scary as that sounds, is .001 of the population. 3 million cases in the US would be less than one percent. On the bad side, the mortality rate in Italy is alarmingly high. Were the numbers from China valid?

I get confused as to why they project half of us will be infected when the rate in the other supposed hotbed countries is low as a percentage number.

Until someone explains it to me better, I am assuming Byrd is right that many of us might get covid and I am taking more extreme measures than I originally planned. I have cancelled all my travel for the month and am considering working remotely.

That’s a hardship for me staying at home. But if my father took take a few years to go fight in WW2 in Europe, I can survive a few weeks on my sofa. Maybe self quarantining is not so much a hardship after all. Tomorrow I am cooking a supply of my three pepper chili and a big batch of veggie soup to freeze. It’s almost a buying panic here with the shelves emptying. I am preparing for the worst, hoping for the best.

cllsociety.org/2020/03/cll-...

Jm954 profile image
Jm954Administrator in reply to cajunjeff

The thing is that once the initial phase of infection in a country is over, most people who get infected are not tested, only those very sick in hospital, and so the reported numbers look low. (oxford comma in there just for you Jeff!).

This virus spreads easily, can be spread by asymptomatic individuals, lives quite a while on some surfaces common in public places and is very contageous. All those chracteristics makes it so hard to avoid and consequently for 'at risk groups' potentially highly dangerous.

I think we will need to self isolate for many months before wave of pandemic is over and then there may be a second wave :( . For me self isolating doesn't mean never leaving the house but does mean not going to social events, avoiding busy times at the shops, no public transport and probably sleeping on my own.

Let's try to stay safe

Jackie

clladytime profile image
clladytime in reply to Jm954

What do you think about going to a restaurant? I have only been out to the supermarkets a few times and am getting cabin fever being at home. Most eateries state they are doing extra measures to assure cleanliness and safety. Mental health is important too.

Jm954 profile image
Jm954Administrator in reply to clladytime

I would go at a time that I knew it to be very quiet, which might be all the time from now on!

Just remember to keep washing those hands and keep then away from your face!

starsafta profile image
starsafta in reply to clladytime

In Massachusetts, the governor declared today that no restaurants can provide seated eating. However, to help the restaurants not go totally broke, and people who want a purchased meal, food orders can be picked up to be eaten at home. This makes great sense to me.

Personally, I am in self-isolation. I made a huge quantity of lentil-rice-mushroom-carrot-coconut-curry soup yesterday that should last weeks (some packed away in freezer).

Also have ingredients to make lots of Thai stir-fry with fennel root-baby bok choy-yams-onions-mushrooms-tofu-carrots, which I can alternate with the soup.

For another lighter alternative, I have ingredients for delicious miso soup: chickpea miso-nori-enoki mushrooms-tofu-collard greens.

Just made a chia pudding with hemp milk and orange juice, dried cherries, sunflowers, just for fun.

Met with clients over FaceTime this morning instead of in person.

The only downside is that I can't see my grandchildren. However, I'd rather be around for their future milestones and accomplishments, so a little deprivation now can be managed. Til then, there is FaceTime.

I had already made this decision. Dr. Byrd's article was a clincher.

May we all stay healthy!

Justasheet1 profile image
Justasheet1 in reply to starsafta

Star,

Can I get some of your soup to go? You made me hungry.

Jeff

starsafta profile image
starsafta in reply to Justasheet1

Sure, I'll leave some in a bag on my doorstep. Come right over and pick it up.

Justasheet1 profile image
Justasheet1 in reply to starsafta

🎉🎉🎉🎉🎉🎉

cajunjeff profile image
cajunjeff in reply to Jm954

Missed the Oxford comma in the last paragraph Jackie. Just saying. I know you and I differ on the Oxford comma, but in these trying times we need to try to put fundamental comma differences like this on hold and work together. 😛

I don’t disagree with anything you wrote. But I am no less confused over dire predictions that say half of our country’s populations will be infected (I think Merkel said 2/3 of Germany will get covid) when the actual infection rates are way, way less. China has over a billion people and a very tiny fraction of that infected. Italy is hard hit and at less than one percent.

I am taking precautions as if infections will be widespread. I assume the numbers are grossly underreported. I just hope it’s nothing close to half our population. At the current mortality rate, if half the US gets infected, over 5 million people will die. That’s apocalyptic. There would be mass chaos.

Jm954 profile image
Jm954Administrator in reply to cajunjeff

I agree Jeff.

I’m preparing for the worst and taking appropriate precautions but hoping for the best, like lots of others.

Stay safe x

Jm954 profile image
Jm954Administrator in reply to cajunjeff

Helpful information here:

lls.org/blog/helping-blood-...

Jackie

Jonquiljo profile image
Jonquiljo

Well, I can say that in the USA the number of cases is so low because our testing is horrendous. We hardly test people at all - perhaps one of the worst among developed nations. If you don't test for coronavirus, you will not find confirmed cases. And that is exactly what is happening here - our cases of coronavirus are very low per capita - but the testing per capita is equally low. It's about politics and incompetence, but the phenomenon is real. Eventually the individual states and institutions are developing their own tests and the confirmed cases will jump considerably. This will be really catching up on a "backlog" of testing. An enormous backlog.

To me, Dr. Byrd's letter made sense in that he is trying to "flatten the curve" - i.e. - prevent all our health systems from being overwhelmed by too many infected people all at once. This is what has happened in Italy, and it is causing the standard of medical care to drop dramatically - simply because (for many reasons) their Healthcare system cannot handle the load. This is to keep susceptible people out of circulation and in contact with others who may give them the virus. So it is best if we all get lazy and become couch potatoes for a few weeks or even months.

I am a firm believer that having CLL does not immediately put us in the worst possible condition to deal with coronavirus. The fact is that we do not know. For instance, Dr Byrd said that , "Additionally, this is an entirely new virus that their immune system did not see prior to developing the impairment from CLL so we are not protected by our “older” antibodies as we are against many childhood illnesses."

The simple fact is that no one alive has an immune system that has "seen" the virus. That is why it is termed "novel." Also, Dr. Byrd pretty much said that little to nothing is known about CLL and COVID -19 when he wrote, "As we have talked in the past concerning therapy for CLL itself, delaying exposure could mean there will be something better known for prevention and treatment of COVID-19. It is also possible that we will find out the risk to CLL patients is less in the upcoming months. " (emphasis added).

Unfortunately it is easier to focus on the grave points made in the letter and ignore the ones I have pointed out above. That is human nature. The fact is that we do not know. It is best to stay away from most contact that can infect us until we do - but some contact is unavoidable.

Thanks, Neil for mentioning the advice for many of us to stay away from the media circus this viral pandemic has generated. It is virtually impossible to avoid, though we can limit it as much as we can. I know the USA media is fueled by political nonsense associated with it, and I expect that other countries are dealing with this too. I personally have made a conscious decision to limit my time reading or watching the news, and choosing mindless entertainment instead.

Finally, I will again reiterate my feeling that the mortality numbers from China and Italy may not be representative of the world as a whole. Looking at it scientifically, China is a large industrialized country with a great deal of cigarette smoking and industrial pollution. Even the percentage of physicians who smoke is in the 40+ percent range. Ironically, the largest mortality rates are from Wuhan (the epicenter of the outbreak) - while the rest of China is often as low as a 0.8% mortality rate. Sorry, but this makes me wonder if any of their data is valid at all. And again, you can only calculate mortality rates if you know the total rates of infection. It is highly suspected that many countries are not seeing (and hence reporting) the mild or minor cases - which may be a large percentage of the total. If all the (asymptomatic or minor) cases were counted, the total mortality rate could drop considerably.

Keeping this in perspective - the pandemic is a major event in our lifetimes. So yes, there is reason to be concerned or even scared. On the other hand, I think that if we follow our various country's advice or "rules", we have a chance of escaping this relatively unscathed.

AussieNeil profile image
AussieNeilAdministrator in reply to Jonquiljo

I share your concerns regarding the lack of testing in your country, which probably means the novel coronavirus is considerably more established than appreciated. That brings with it the risk of pandemic management decisions being poorly made due to incorrect data. At least the FDA has now approved a 10x faster test: bloomberg.com/news/articles...

One of the very important facts we still don't know is an accurate fatality rate, in particular for older people with cancer - and realistically we would unfortunately have to anticipate that with CLL it may be higher than for those with other cancers, due to how CLL suppresses our immune system. I would presume that the number of deaths in the USA is less understated than the number of cases, so hopefully the fatality rate is overstated.

One of the points I was trying to make in my post is that currently far, far more people die from the flu, for which we have a vaccine and yet many people don't get that vaccine annually despite that too being a novel illness with a frighteningly high fatality rate in the elderly. That's why the regular reminders here to have these annual flu vaccination AND both pneumonia vaccinations - another set of vaccines also not often done by people, yet pneumonia was the third biggest killer!

Today, the Worldometer site reported 76,615 people who have recovered and who will have protective immunoglobulins for covid-19. Those of us on IgG will benefit from the protective cover from donations from that growing pool of individuals, which as I said earlier, given the lack of testing in the USA, is arguably much larger.

Neil

Jonquiljo profile image
Jonquiljo in reply to AussieNeil

While I read the literature on the subject (sch that it is), I find that the mortality rates vary so enormously that it is next to impossible to really find out what is going on. Data from China seems to be less and less as time goes by. The fact is that the disease - by their numbers - seems to be dramatically slowing down - makes no sense at all!

The lack of testing data in the USA is horrific! I keep looking every day to see if the ability to be tested here has improved - and it seems to be hideously low each time I look. Between our government and news media, we really can't get any accurate assessment as to what the status of COVID-19 is in our country. That just causes people to act in irrational ways - something that is not helpful for our common welfare.

Even worse, older people are afraid to go anywhere unless it is absolutely necessary. I agree with you that getting vaccinations for the flu and pneumonia are definitely in order. But to get these things (if even possible) means going to a pharmacy - a place that tends to have a larger percentage of sick people than most.

Finally, the most lacking thing of all is the fact that there is no collected data for people with CLL and how they fare with COVID-19 infection. CLL patients have such diverse circumstances that my expectation is that some will do OK, whereas others won't. We may all do well. We just don't know. CLL is a cancer, but cancer is literally thousands of diseases. Sure, most people with CLL have some degree of immune-supppression, but how will that affect us if we come down with COVID-19? I think even anecdotal cases will have some usefulness if our physicians would release whatever data they have - when they get it. True, it is not scientific, but most of what I have read that pretends to be scientific is far from it.

Well, if I end up coming down with COVID-19 -- I intend to post as much as possible on how I fare as long as I can post. Who knows, I may end up doing quite well. Scientific - no. But for a non-scientific chronology of life with COVID-19 - Tom Hanks down in your neck of the woods has done more to give a sense of reality to people than all of the politicians and news outlets combined. Sure, he appears to be doing well and may not be representative of most people. (We don't know) But he has shown that testing can be done - rapidly - and that basic patient care can be tolerable. That's more than most of us are hearing. I would feel far safer if I were in Australia right now than I feel in the USA. I doubt I am alone!

lexie profile image
lexie in reply to Jonquiljo

Tom Hanks has one of the high risk factors of being diabetic so it is doubly interesting to see how he does with the virus. And I am not thrilled about how the USA is handling this at all. Everyone can be tested in the USA but there aren't testing kits for even a small percentage. Lip service.

Jonquiljo profile image
Jonquiljo in reply to AussieNeil

To get a good idea of the nonsense and chaos going on in the USA - take a look at cnn.com/ -- and select "U.S. Edition" (somewhere on the page). Try to make any sense out of that!

Canuck901 profile image
Canuck901 in reply to Jonquiljo

The number of cases in the US will be at least 1000 in a few days

The US is unfortunately behind the curve in controlling the Virus.

724 new cases today In the US

worldometers.info/coronavirus/

Justasheet1 profile image
Justasheet1 in reply to Canuck901

Canuck901,

We’d probably be ahead of the curve if we had stopped the cruisers a while ago.

I can’t understand why someone even went. You were one sick person away from purgatory at sea.

What were you implying? The plan was always to slow the spread and not overwhelm the capacity of our resources until it goes away on it’s own or there’s a vaccine.

Jeff

Canuck901 profile image
Canuck901 in reply to Justasheet1

Ban on international travel and mandatory quarantine should of been in place a month ago

Justasheet1 profile image
Justasheet1 in reply to Canuck901

And what country did that?

Canuck901 profile image
Canuck901 in reply to Justasheet1

China

Justasheet1 profile image
Justasheet1 in reply to Canuck901

Maybe if they had done that in the beginning, we wouldn’t be having this conversation.

I think everyone is doing the best they can in a free society which they are not part of.

Canuck901 profile image
Canuck901 in reply to Justasheet1

No it’s not enough , listen to the WHO specialist in disease control

twitter.com/jimrichards1010...

ctvnews.ca/health/coronavir...

Justasheet1 profile image
Justasheet1 in reply to Canuck901

I’m not on Twitter and I don’t live in Canada 🇨🇦

Ernest2 profile image
Ernest2

Hi Neil,

Hope you are doing well.

The inline chart in your post is interesting in putting things into perspective. Interesting as time goes on, how much COVID-19 will move up the table, but it does seem to have a long way to go. So many other bigger things in the table that most ignore with world demographics etc.

For the online links interesting to see the countries doing well. Australia seems to be a good place (despite its location near the start of the outbreak), but not sure how much of that is the southern hemisphere location effect?

Also note Japan doing well, but I guess they are good and well practiced at handling this kind of thing.

I think it is key to limit your news intake, particularly in the evening hours to avoid sleep disruption and mental dis-function.

Best wishes,

Ernest

RomildaG profile image
RomildaG

Hi Neil, thanks so much for putting things into perspective. It's easy to get into this panic by keeping news alerts on. I think, while watching stats we should also keep into perspective the number of mild symptoms, and those who have recovered. Psychologically this has helped me cope. Just a quick question, I read that Australia is going into lockdown, is it happening or haven't they decided yet-

Let's all try and look for that silver lining, and there definitely is one (hopefully it will arrive here in Italy soon).

Best wishes and strength

Sharna

AussieNeil profile image
AussieNeilAdministrator in reply to RomildaG

Australia hasn't decided yet about more drastic measures. We do have the advantage of being an island.

Neil

Psmithuk profile image
Psmithuk

I totally agree with not watching, listening or reading to the news if it makes us anxious, as it is not helping us stay safe. A calm attitude is the best way to deal with our - and others - anxieties, and following the basic advice of handwashing etc.

This is a very helpful post, Neil, thank you for putting it into perspective.

wmay13241 profile image
wmay13241

As usual you provided us with great information - thank you.

lexie profile image
lexie

I appreciate this "putting it in perspective" post. It is what I needed this morning.

AussieNeil profile image
AussieNeilAdministrator

The coronavirus looks less deadly than first reported, but it’s definitely not ‘just a flu’

theconversation.com/the-cor...

"On March 3 the World Health Organization stated the death rate was 3.4%. Other widely quoted estimates have put the figure at 3% or 5%. But other sources have estimated it at well under 1%.

:

..an estimated 35 million Americans caught the flu last year, with 34,000 deaths: less than 0.1%. The coronavirus is much deadlier than seasonal flu, particularly for older people, and there is no vaccine.

:

In Australia, 11% of the population are over 70 and are predicted to account for 63% of deaths."

That's why Social Distancing is such a very important means of reducing this figure in developed countries.

healthunlocked.com/cllsuppo....

Neil

RomildaG profile image
RomildaG

Out of curiosity Neil, has the original graph, with Covid-19 being at 70, just under Yellow Fever, changed? Considering what’s happening here in Italy and sadly other EU countries? Just wondering if you have that data.

Thanx

AussieNeil profile image
AussieNeilAdministrator in reply to RomildaG

I haven't checked if the plot has been updated, but you can calculate the figure from the Worldometers site. As the note says on the plot, the number is likely to change. By my calculations, the coronavirus has jumped up one position to just over 150, just below rabies. Keeping that number down will depend on how well social separation is implemented.

Neil

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