I thought it might be useful to give a close friends personal experience of covid19, in the context of discussions of anecdotal evidence.
David is in his mid 40s and obese. He has been a heavy smoker and drinker. He lives in the UK and has been in self isolation. I have pasted his WhatsApp conversation
"There is no testing available so we will never actually know. I was initially sceptical, but I do have/have had virtually every symptom. Tight chest, persistent cough, fever and what finally clinched it loss of smell. My main problem is that my lungs are only taking a small amount of air. So, when I am still I am relatively fine, but the moment I move I cough and then can't breathe and turning blue is not a good look 🤣..."
Then, 3 days later
"I have turned a corner today, feeling significantly better than yesterday. I feel like I have made it 😀"
The 2nd comment was day 6 after the onset of the serious phase (turning blue, struggling to breath).
Suppose on day 5 someone administered hydroxchloroquine. They would report, accurately and honestly, that within a day of administration David experienced a sudden and dramatic improvement.
Anecdotal.
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WinnieThePoo
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I have heard similar stories for months related to covid-19. People get under the weather, get better, feel bad again, feel great, then suddenly can't breath. Waves of symptoms that come and go for weeks until it succumbs you with overblown immune response. It lays low insidiously and catches you off guard.
I understood his point. However, if a person is about to die, and the Drs felt the patient may succumb, then I think trying the combo medications with a long track record of the well understood safety profiles even for the seriously immune compromised should be justified, especially because there are no current alternatives.
Unless the drug kills you, when you might have pulled through without it. There is significant concern about QT prolongation.
And the danger is, apart from killing people who might otherwise have survived, without proof of the drugs efficacy, you opt for it being an attractive "easy fix" solution to a git of a problem. Particularly if you are inclined to populism and easy fixes, to bail you out of responsibility for lack of action. So you back off social distancing and the like, and rely on a sure fire 100% cure that major experts in the field are in denial about for ( insert your preferred conspiracy theory here). And tens of thousands die as a result when it doesn't work.
"I can see where they’re coming from: if you haven’t done this stuff, you can look at a report of people responding to such a treatment and figure that the answer is here – right here, and anyone who doesn’t see it must have some ulterior motives in ignoring what’s in front of their face. But that’s not how it works.
It’s weird and startling, though, if you haven’t had the opportunity to go back through clinical research (and even patient treatment) and seen how many things looked like they worked and really didn’t. It happens again and again. Alzheimer’s drugs, obesity drugs, cardiovascular drugs, osteoporosis drugs: over and over there have been what looked like positive results that evaporated on closer inspection. After you’ve experienced this a few times, you take the lesson to heart that the only way to be sure about these things is to run sufficiently powered controlled trials. No short cuts, no gut feelings – just data."
you could add Parkinsons disease to that list of drugs that looked like they worked and really didnt. Isradipine as one recent example
Absolutely! High dose aspirin could well be an example of the remedy being more dangerous than the disease during the Spanish Flu pandemic academic.oup.com/cid/articl...
You make great points and normally I'd agree with you wholeheartedly. I'm also afraid of the potential misuse and complacency in result of the emergency approval.
However I see it this way - if I'm stranded on an island with no other recourse than using Cipro, a fluoroquinolone class of horrible drugs that I (and many) have experienced terrible complications with, I'd take it if that's the only drug I have available to treat a sepsis that may kill me otherwise. I'd see it as a deal with the devil in the face of crisis. However, in this situation the drug happens to have relatively much lower side effects, so I'm for it especially given so many anecdotal reports and efficacy noticed by many international Drs.
First -I don't dismiss the idea that this drug might help. And that the nature of covid 19 means we want an answer today - not in 6 years. At present, the results of a European clinical trial called ‘Discovery’ are expected by the weekend on four treatments one including hydroxychloroquine.
I take the basic point. If I were in a critical condition - "with nothing to lose" - then why not try something which is reported to work, even though untested?
How do I know when I have reached that point? What if I were about to turn the corner and the miracle drug stops my heart? How many times has that happened?
The (small) studies since the original Marseilles one have found the drugs used in Marseilles have no effect and that there are significant QT prolongation issues. (OK - no combination zinc treatment, but a direct reversal of the results from the experiment in Marseilles which generated the original interest)
Many anecdotal reports by international doctors are just that. (And I'm not sure how many is "many" - could you list them?) Doctors are trying a variety of approaches. But there is no clear evidence, not even an unsubstantiated claim, that any of the centres worst affected by the epidemic, like New York, have a treatment option which is changing the course of the epidemic.
At this stage, (and stuff sure happens fast), there appears to be a consensus only that the problem is managed by reducing the rate of infections, whether by strict test and trace, or by "lockdowns" and social distancing - not by letting it spread and treating it with miracle drugs. And the sooner action is taken, and the better that action is enforced, the sooner the curve starts to flatten.
So - since chances are neither of us will be facing your hypothetical dilema - the real issue is does an unproven anecdotal drug provide a distraction strategy for impatient and frustrated leaders hurting from the effects of epidemic control techniques, and get used to justify abandoning the painful lockdowns too soon? Starts to look that way...
Even though that risk tens, maybe hundreds of thousands of avoidable deaths.
As of yesterday there were 16691 deaths in the USA - 1900 of them reported yesterday. Today, at 17.08 BST - so still morning in the western USA, there are 17843 deaths, a further 1152 reported so far today, and the USA might just pass Italy for the most deaths today.
It certainly is a crazy situation we're facing, and that's why such radical options are being considered.
What I see is that S. Korea's strategy is not the economically damaging full lockdown and they have been able to manage with the drug combinations including chloroquine (higher side effects) /hydroxychloroquine (less side effects)/antibiotics as the core of the medical protocols, along with the cooperation/tracking of the citizens. It's a model that's working better than others, and as you acknowledge, the studies have failed to include zinc that detracts from the efficacy pertaining to HCQ.
What alternatives do we have? Could we manage a full lock down until the end of the year or more? It'll be a mayhem before we know it.
That's precisely what I identified as the risk of promoting this anecdotal evidence. It's one thing to suggest an individual in ITU may chose to risk an unproven drug, but another thing altogether to suggest that using that drug to treat patients is a substitute for preventing infection using lockdowns.
South Korea did not control its outbreak , with limited lockdown, achieving a rapid restart of its economy, by letting people get infected and then treating them with hydroxychloroquine . It was the tracking and testing that was the key. And key to that was acting early. With the benefit of experience of SARS and MERS, South Korea acted immediately it detected its first case with vigorous control measures.
China was not as quick off the mark, being first to be infected, and in denial / suppression of information for the first few weeks of January, and not starting its lockdown until 17 deaths had been reported. At that stage they had missed the boat for a South Korean style solution, and imposed a massive serious lockdown until new cases per day were a handful, and deaths near zero. The USA was MUCH later starting, and is far less strict, and is consequently going to suffer many more deaths, and almost certainly not be in a position to safely lift lockdowns for a considerable time. Testing and tracing, antibody tests, and eventually vaccines may all contribute to an end game without lockdown. hydroxychloroquine may contribute some benefit but is no substitute for infection control.
There almost certainly are no "easy fixes". Even president Trump appeared to recognise that last night. When you start to need mass burial temporary graves in New York parks, it brings home the reality of allowing hundreds of thousands of deaths due to weak infection control.
There have definitely been a lot of political fumbling going on contributing to the current state of mess. The most laughable was advising people that wearing a mask is ineffective to deter hoarding under the current short supply. They're still insisting on only testing the symptomatic with significantly delayed test results while it only takes 5 days or less for the vulnerable to die from the time they get infected, evident in the steep rise in the hospitalization and death rates. Even the reported death tolls may be inflated and inaccurate - both political and aid response motives - and I hear through Dr. friends that even gunshot/accident victims are added to the toll.
I see S. Korea "managing" admirably seeing the daily new cases at the steady "dance" stage, but there's no "controlling" this pandemic indefinitely without serious economic repercussions. It's inevitable there will be continuous rise in the total death toll until the majority of the population ultimately get infected sooner or later.
I see farmers with fields of wasted crops, dumping massive amount of milk, etc., because of the dried up distribution channels of the restaurants/hotels supply chains. Within less than a month, there have already been looting and daytime robbery attempts at homes/businesses. We're about to relive the zombie apocalypse movie scenarios if this goes on much longer. I could only imagine the hardship and devastation felt by the people out of jobs seeing no end in sight. This world under globalization closely impact one another and it's challenging if not impossible for most nations today to sustain closed ecosystem for long-term. It's concerning to see countries such as India attempting to hoard the exports/raw materials of hydroxyquinolone.
If you have time, it's worth watching this video of Dr. Zelenko, especially the last few minutes at 38:16 mark and 39:13 (the worst side effects discussion). I believe adapting the strategy of early treatment for the vulnerable may abate the heart troubles that may be related to potassium imbalance in result of a higher dose application under ARDS emergency.
To all who are highly vulnerable, supplement zinc (and D3, C, etc) but don't overdose it (see the below post for detail) since it'll shut down cell receptors. To enhance the absorption, combine Zn with quercetin (through food or supplement) which acts as zinc ionophore analogous to hydroxychloroquine without serious side effects. Continue self imposed lock-down if you can afford to do so until a fully tested safer vaccine becomes available..probably next year.
.. . speaking of anecdotal evidence . . . can you update us as to any anecdotal evidence you have as to the efficacy (or lack thereof) of the experimental monoclonal antibody you are receiving in the Biogen clinical trial?
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Update on hubby
Just diagnosed
caretaker for a companion with Parkinsons
Using B1 therapy
