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Here’s my conspiracy theory for the day - hydroxychloroquine


Ginevra
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I don't see a lot of people not wanting to even test it or dismissing it right off the bat.  Most of what I'm seeing is saying "slow down, we're doing trials, it's too early to tell".    I feel like the constant caution is a backlash to doctors self-prescribing or people stocking up or taking it when there's no reason.  There's a lot of risk to self-medicating for an unknown virus with a drug with some heavy side effects.   

I mean, once trials are going it may come out that it does work as a prophylactic but if you are a certain age, or have a certain disorder, or are on certain medications, or.......  you shouldn't take it.  This is the information that trials are trying to determine, as well as does it actually work or not.

And trials ARE happening in the US.   Multiple ones have been mentioned right in this thread so saying that nobody is studying it here due to the politicization, is factually false. 

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9 minutes ago, happysmileylady said:

I didn't say nobody was studying it?   I have said the politics have made some of the science difficult, and shared an NPR article discussing how some trials are having trouble finding participants.

 

That's the reality for most clinical trials.

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Yep, there a lot involved with a trial.   Often you can't just take anyone who shows up, they need to fit certain criteria.   It's part of the reason trials can take so long.   Some you have to wait for a person with the right condition to show up and be willing to enter the trial.  Other times you need to be ready to react in acute situations (I had a non-lab/non-medical job working on a medication for acute ischemic stroke that had to be administered within 3 hours).  People often don't want to be guinea pigs for an unproven medication, especially if it's either a preventative or there are other treatments available (and there's a whole set of guidelines how trials need to be conducted for any condition with an existing therapy).     

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I have to admit that it is strange to me that a cheap, widely used drug with a good safety profile has become So Dangerous and also a huge opportunity for evil pharma to profit.

I think more likely is Quill's original post. Kind of like masks...if this works prophylacticly, we don't want people hoarding it so that no one can get it if we need to use it on a more widespread level.

Also, only tangentially related, but I'm pretty sure that fish tank cleaner lady poisoned her husband on purpose.

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2 hours ago, happysmileylady said:

I am not quick to assume it works great.  What I am saying is that I wish people and the media wouldn't generally be so quick to try to prove it DOESN'T work, when the information we have currently isn't really addressing the real questions.  And I am saying that I really wish that 'because Trump likes it' wasn't the reason behind the media dismissal, but I absolutely believe that's what is going on.

 

And I really wish Trump would leave drug advice to medical professionals and scientists. Things could have just proceeded with it as they are in other countries if he hadn’t been his usual irresponsible self. Sure, the media around it has been bad and they share blame. But it didn’t start with the media.

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1 hour ago, happysmileylady said:

You guys really don't think there's any media influence or bias involved or that HCQ has become political at all?

Yes, of course, I don’t deny any of that. But who do you think started the problem and is most responsible for the problem?

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1 minute ago, EmseB said:

Then you know they had volunteers lined up before the news cycle hit?

I am much more familiar with clinical trials than I ever wanted to be due to my DH's health issues. What the article details is nothing unusual for any clinical trial. I belong to a message board for others with his type of cancer, and there is always talk about various trials and issues surrounding the drug(s) being tested. And that often changes people's minds about whether or not they want to participate. Granted this is a slightly larger scale, but . . . not new at all.

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1 minute ago, happysmileylady said:

When you say this, what is it you are referring to?  the virus?  HCQ science struggles?  I think there might be a couple of ideas bouncing around in the thread and I just want to make sure I understand what you mean

That either the media or Trump are 100% responsible for the distrust and mess surrounding this drug. They are both the problem.

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24 minutes ago, Arctic Mama said:

The news media.  100%.  They have done an absolutely shameful job as a whole during this whole administration, but this is a new low.  There are a few who think for themselves and maintain some integrity but it is absolutely a minority.  The intellectual honesty and actual reporting seems to be running around 25% these days.

I watch no news and pay for very few sources of it.  The vast majority have lost all credibility when it became about cartoonish caricatures for political points and propping up narratives to the detriment of the actual people involved and the facts on the ground truth.  They’re running a script in their heads and discarding all data that causes cognitive dissonance, rather than taking the best arguments they see against a favored plot and seeing if they hold water or are compelling, or a better fit to the data.  And I’m not singling out one side in this either, it happens both ways, though not in equal measure.

Whatever Trump does or doesn’t do he will answer for at the ballot box.  The media, however, are essentially unaccountable for their slander, agendas, and manipulation of data to fit the preferred narrative. That is absolutely worse.

Well I obviously disagree. I have to say I continue to be amazed that so many people will daily accept behavior from their president that I highly doubt they would tolerate from their children. Bullying, off the charts lying, not taking responsibility for or admitting mistakes,  etc. The immaturity would of course be more tolerated in children. And I don’t think he will necessarily answer for it at the ballot box. First, because he could easily lose the popular vote and win the election again. And second, because some believe the ends justify the means and for others, his behavior reflects their values and morals. I actually fully expect him to be re-elected. We’ve sunk that low in this country. I actually think he’s right that he could shoot someone in broad daylight and still have lots of support. 

And nobody would ever need to partake in any media to see his abysmal character. No slander, agenda, or manipulation needed. It’s on full display on his twitter feed.
 

That’s not to say I don’t think the media shares responsibility, especially for getting him elected. They certainly stir up and keep the cognitive dissonance going and help to fuel the partisan divide.

Edited by Frances
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15 minutes ago, happysmileylady said:

Ok, so since you do have experience, do you believe that the politics involved are common for all trials?  I just mean generally, like is there usually politicking going on with regards to trials, even if we don't always see it so prominently in the news media.

There's definitely politics of a certain type involved in the ones for DH's type of cancer. The type of cancer my DH has makes for a relatively small world. There are about five, ten at the most, oncologists in the U.S. who are considered the top experts. And what any of those oncologists say about a given clinical trial heavily influences patients' decisions on whether or not to participate. Even seemingly offhand comments get dissected for the pros/cons. One of the top experts may be on a video conference and express misgivings about the potential of a certain drug in trial, or another expert may express optimism about that same trial drug in an article. Those comments are discussed and weighed carefully on the board I belong to, although I will say that board skews heavily towards educated, pro-active patients. Now obviously there's a fine line between calling something "politics" and simply in listening to expert opinions. But these doctors do express their opinions regarding different drugs, and I guess that's pretty much the same as "politics."

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I just watched the video I'm going to try and link and I found it really helpful. I have been struggling with some of the things I have seen my friends saying and linking on social media and this video has given me a way to think about it in a much more balanced way. Not sure if this is the exact best thread etc to post it on but hopefully might be interesting to some people. Definitely recommend it even if you don't particularly agree with my view of things! Disclaimer -  I watched until just after he started talking about some of the comments for the audience so I can't vouch for the very end lol.

 

 

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13 minutes ago, happysmileylady said:

Because it discusses a political figure and politics, I will only say that I didn't vote for him, and my opinion on him is mixed.  What I approve or disapprove of with regards to what things he has done probably gets into discussing things that do not belong in this thread.  So, that's all I will say about Trump or those particular politics.

But, in this thread, because of where it is on the board, what I can discuss is the media bias, and for this thread specifically, how it pertains to this particular drug.  I do believe there is media bias against HCQ and I absolutely believe that the bias has little to do with the science and is very much about their bias against the president and their desire to discredit him.  I believe that many outlets have taken on HCQ as some sort of proxy (though not really intentionally or as some sort of true conspiracy.)  It seems like they think that by discrediting HCQ, they are discrediting Trump.  The reverse is true as well, as I do think that in some cases, there is an effort to prove that HCQ is some sort of miracle, just to prove what a great job that the president has done.  

I don’t disagree that the media is not behaving in an unbiased way here. But none of it would ever have started had Trump not irresponsibly touted the drug from early on, before he ever started taking it. He has no medical or scientific training and there was really no good reason for him to talk about it. Do you think he was right in talking about the drug the way he has since the beginning? 
 

And if we’re only allowed to discuss and criticize the media when it comes to politics, but not the president, than I’m not sure we can even have a discussion. 

Edited by Frances
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2 hours ago, happysmileylady said:

You guys really don't think there's any media influence or bias involved or that HCQ has become political at all?

I suppose, in the sense that a political figure promoted it, so those that like him tended to believe him, and those that don't tended to be skeptical of taking his word for it, when medical experts were saying differently. 

2 hours ago, EmseB said:

I have to admit that it is strange to me that a cheap, widely used drug with a good safety profile has become So Dangerous and also a huge opportunity for evil pharma to profit.

 

It seems weird to me that a drug without any proven or even kind of proven record of helping has become the target of so much hype. 

15 minutes ago, happysmileylady said:

 

But, in this thread, because of where it is on the board, what I can discuss is the media bias, and for this thread specifically, how it pertains to this particular drug.  I do believe there is media bias against HCQ and I absolutely believe that the bias has little to do with the science and is very much about their bias against the president and their desire to discredit him. 

One could easily believe the opposite, with the same amount of evidence - that there is bias FOR HCQ, which has very little to do with science and is very much about their bias FOR the president and their desire to support him. 

Given that most medical experts and the limited evidence we have does not support the idea that it is helpful, one might wonder why so many people are convinced it is. 

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13 minutes ago, happysmileylady said:

I saw the the briefing on youtube where he first mentioned it, and honestly, I didn't view that particular briefing as all that dramatic in terms of him "touting" the drug or promoting it.   Maybe I need to rewatch it again because I never got the impression that he was as obsessed with it or as enamored with it as the media seem to be with his opinion of it.  

Well certainly things changed when he said he was taking it, that goes far beyond talking about it. But why talk about it at all when it wasn’t yet thoroughly studied and he has no scientific or medical training? Obviously he must understand the weight his words carry. You don’t think he was being irresponsible at all by talking about it early on and offering his own personal opinion rather than deferring to the experts?

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7 minutes ago, happysmileylady said:

I think he was talking about the drug trials that were getting started.  HCQ wasn't the only trial that he talked about that I can recall, it was just the one he expressed the most hope about (seriously I might have to go back to rewatch it, it was quite a while ago)

Is it irresponsible for a president to express that he is very hopeful that a particular drug trial could work out very well?  I don't know if it is.  (but again, after a month or so, I can't promise my memory on his initial press briefing regarding it is all that great.)

I think we will just have to agree to disagree. Personally, I think the casual way he talks and tweets about many scientific things is generally uninformed and irresponsible. And when lives and health are at stake, I think it goes beyond annoying. But then again I’m likely biased because my husband has two science doctorates and is a healthcare professional  and I have a grad degree in statistics. So it probably bothers me more than most.

Edited by Frances
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I've actually watched many of the ZdoggMD videos.  He does offer an interesting balanced perspective on some things.   He is also another source (like everyone) trying to produce click bait and selectively ignores data at times too so YMMV.  

I think people are giving the media too much credit.  If the story next week were this drug were great and it was being with held or hoarded or data suppressed somewhere, someone would love to break that story and that would be the new click bait.   The media's job is to generate interest in current events which in turn generates revenue.  I am local to the U of MN study and am alum.  I know health care professionals participating.  There is nothing political about that study.  That's how it is supposed to work.  If something shows very encouraging promise during a study, it can move to compassionate use.  We are not there with this drug.  I personally have no feelings whether it is positive or negative.  The data I've seen reported from decent sources looks trending negative.  And I've scoured all over looking for other data.  No one has posted any other studies here. It doesn't exist as far as I can tell.  

Why should a politician be talking about any one particular drug?  That is just irresponsible.  It wouldn't be in the media if the wording had been "Doctors have been seeing some promising data with existing drugs and I'm optimistic our scientists will continue to continue to learn to fight this virus ...."  The media does stuff in response to what a world leader says.   That's not surprising.  Media consumers should take a measured response to consumption.  So yes, it's been over covered obnoxiously so in some cases.  But to expect a world leader to just be able to run his mouth and not have the media question it or take it seriously isn't the best idea either.  

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34 minutes ago, Arctic Mama said:

 

And yet these things aren’t even being discussed in some outlets and print. Like, not at all.  It’s completely unreported. 

Have people read, watched, or listened to everything from all media outlets to determine this? I only read news, but given the combination I read, I’ve certainly heard stuff positive, negative, neutral, yet to be determined, anecdotes, studies, trials, etc. about it. If you asked me, I don’t think that off the top of my head I could now remember where I read what. I would have to go back and do an extensive review of my major print sources. 

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39 minutes ago, FuzzyCatz said:

I've actually watched many of the ZdoggMD videos.  He does offer an interesting balanced perspective on some things.   He is also another source (like everyone) trying to produce click bait and selectively ignores data at times too so YMMV.  

I'm definitely not saying he's fantastic and watch all his videos. I'm just saying that this one helped me to stop and think more about where other people are coming from. I needed to remind myself that those that I disagree with are good people, at least I always thought they were before, and want the best for their families. It didn't make me agree with them anymore but I think I will try and listen more closely to what they are saying and hopefully understand where they are coming from. He doesn't really discuss data much at all in this particular video.

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1 hour ago, happysmileylady said:

I saw the the briefing on youtube where he first mentioned it, and honestly, I didn't view that particular briefing as all that dramatic in terms of him "touting" the drug or promoting it.   Maybe I need to rewatch it again because I never got the impression that he was as obsessed with it or as enamored with it as the media seem to be with his opinion of it.  

Agreed. That is what is interesting to me in the whole backlash again HCQ. He really did not speak strongly in favor of using the drug or tout it as a miracle cure. He mentioned it as a possibility that was being researched, in what appeared to be an attempt to inject some optimism into the discussion. Which is really fine/appropriate for a non-physician to do. And people lost their minds over it.

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58 minutes ago, Frances said:

I think we will just have to agree to disagree. Personally, I think the casual way he talks and tweets about many scientific things is generally uninformed and irresponsible. And when lives and health are at stake, I think it goes beyond annoying. But then again I’m likely biased because my husband has two science doctorates and is a healthcare professional  and I have a grad degree in statistics. So it probably bothers me more than most.

Likely it is more because you are politically inclined to dislike him than because of your and your husband's degrees :-) But, granted, he is obnoxious and clearly a narcissist, and not a scientist.

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3 minutes ago, GoodGrief1 said:

Likely it is more because you are politically inclined to dislike him than because of your and your husband's degrees 🙂 But, granted, he is obnoxious and clearly a narcissist, and not a scientist.

It’s probably both since I think most people are likely more sensitive in areas where they have devoted lots of time and effort to attaining expertise. And although you are right that I disagree with much of his politics, my biggest issues with him are his temperament, character, and psychological make-up and the fact that someone like him, regardless of party or politics, is our president. I think it’s shameful and dangerous.

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18 minutes ago, GoodGrief1 said:

Agreed. That is what is interesting to me in the whole backlash again HCQ. He really did not speak strongly in favor of using the drug or tout it as a miracle cure. He mentioned it as a possibility that was being researched, in what appeared to be an attempt to inject some optimism into the discussion. Which is really fine/appropriate for a non-physician to do. And people lost their minds over it.

I don't watch main stream news - no tv. Did they really lose their minds over it? My more right leaning friends have been saying it's a cure from the get go and can't understand why everyone isn't using it, this is from before I was able to see any trials other than the one in France. So I kind of wonder if they really lost their minds and didn't use it or could some of it be they were waiting for results or evidence?

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Quote

It seems weird to me that a drug without any proven or even kind of proven record of helping has become the target of so much hype. 

 

This is an example of an article on chloroquine for SARS1 — without extreme current political football.

 Iirc, Hydroxychloroquine was found to be as good or better with way lower risk (though not none! )

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1232869/

Please remember that early in SARS2, and still to a significant degree now, we were depending on what we knew from SARS1 (and MERS etc.) research since the SARS1 epidemics to make educated decisions.  

For example, There had not been studies on SARS2, so we looked to what was known about cleaners that could deactivate SARS1, for example.  That was also true for guessing about transmission (unfortunately turned out wrong as SARS2 is apparently more easily transmissible by breathing air with it than SARS1. That was also true for assumptions about time of infectiousness and likelihood of Asymptomatic carriers (also turned out wrong)

And afaik it is a right thing to do that at start of new virus epidemic (and we really are even now near start with more research probably happening on it faster than ever before in human history for dealing with an epidemic). 

Possibly more later.

Back after interruption 

 

Thus also for medications that already exist, and in many parts of world are inexpensive (I have seen reports that HCQ is only around $5for a month supply to use I think daily for malaria prophylaxis in many parts of world— USA medicines of course get price way jacked up), does make sense to be given a good chance of to see if it will work.  

(And just personally, irl real people I have heard enough good reports to personally consider it a good prospect if taken early enough (not magic bullet cure, I haven’t seen **any** magic bullet cure, and do not expect even a vaccine to do better than reduction, but maybe it is a help.  ) 

 

The hype, I cannot help. 

 

If it were kept quiet and turned out good and that had not been revealed that a relatively low cost medicine was beneficial, people would be hugely upset. That would be just as bad as making a mistake to reveal something that turns out maybe not to be as good as hoped — about which many people are upset about that now.

 

Many People are going to be upset regardless.

 

 

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4 minutes ago, Arctic Mama said:

I skim headlines of many sources and tickers, every few days.  Some of my favorite sources are also good aggregators, so that helps too 🙂

I guess I’m still confused about how this allows you to determine that some outlets have reported nothing positive at all about the drug, unless you read every article (not just skim headlines) and have a photographic memory (one of my coworkers does and it is amazing to behold). Or are you saying that some of your sources are saying this? Just out of curiosity, I did a search for the drug in one of my sources, the main newspaper in our state. I only recalled reading about half the articles in which it was mentioned. Then again, I know my memory is not what it used to be. 😜

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10 hours ago, happysmileylady said:

I think he was talking about the drug trials that were getting started.  HCQ wasn't the only trial that he talked about that I can recall, it was just the one he expressed the most hope about (seriously I might have to go back to rewatch it, it was quite a while ago)

Is it irresponsible for a president to express that he is very hopeful that a particular drug trial could work out very well?  I don't know if it is.  (but again, after a month or so, I can't promise my memory on his initial press briefing regarding it is all that great.)

 

9 hours ago, GoodGrief1 said:

Agreed. That is what is interesting to me in the whole backlash again HCQ. He really did not speak strongly in favor of using the drug or tout it as a miracle cure. He mentioned it as a possibility that was being researched, in what appeared to be an attempt to inject some optimism into the discussion. Which is really fine/appropriate for a non-physician to do. And people lost their minds over it.

Uh, no, he didn't just mention it casually once or twice as one possibility that was being researched, he repeatedly pushed it in multiple news conferences, speeches, and tweets, saying it was effective and very safe ("what do you have to lose?") and that the administration had bought 30 million doses (actually they were donated) and was distributing it around the country. He said it  was potentially "one of the biggest game-changers in the history of medicine." When Fauci suggested we really needed more clinical trials, he waved Fauci off saying "well, I like it better than he does." At one point he got visibly annoyed that reporters kept asking Fauci about it, and when a reporter tried to address the question to Fauci, he cut off the reporter and said Fauci didn't need to answer that.

The result of the president pushing it, amplified by Fox News and other right-wing outlets, was that so many people started hoarding it those who rely on it for other illnesses could not fill their prescriptions. Doctors were writing prescriptions for hundreds of pills for themselves, their families, and friends, and eBay sellers were selling mislabeled aquarium cleaner for hundreds of dollars. There are genuine concerns with prescribing a drug that can cause serious heart problems to treat a disease that can also cause serious heart problems, as well as lots of other unknowns. There's a reason so many drugs carry warnings of contraindications — and those were discovered through clinical trials, not people randomly experimenting on patients without genuinely informed consent. 

When the VA study was released by the FDA recently, showing negative results, Trump called it a fake study and a "Trump enemy statement." Because apparently if science doesn't agree with Trump, then the science is not only wrong, it was purposely falsified by his enemies to make him look bad. Most people can see that pretty clearly as the sign of a narcissist, but apparently some people buy it.

 

Edited by Corraleno
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The moral of The Boy Who Cried Wolf applies: when a person has repeatedly demonstrated a disregard for facts and a tendency to lie openly and loudly that person will have no credibility should they happen one day to tell the truth. Anything that comes out of such a person's mouth is going to be suspect.

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27 minutes ago, Corraleno said:

 

Uh, no, he didn't just mention it casually once or twice as one possibility that was being researched, he repeatedly pushed it in multiple news conferences, speeches, and tweets, saying it was effective and very safe ("what do you have to lose?") and that the administration had bought 30 million doses (actually they were donated) and was distributing it around the country. When Fauci suggested we really needed more clinical trials, he waved Fauci off saying "well, I like it better than he does." At one point he got visibly annoyed that reporters kept asking Fauci about it, and when a reporter tried to address the question to Fauci, he cut off the reporter and said Fauci didn't need to answer that.

I just pulled up his statements from April 6 and this is 100% accurate, including not allowing the press to ask Fauci his opinion. 

And even though I try to mostly read news from the center of the spectrum, and slightly more of my friends share from left of center, I have had as many good reports on the drug as bad ones come across my news feeds. If someone feels that the media has purposely buried any good news of this drug, their sampling of news may not be as broad as they think it is. 

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My main objection to the popularization of this drug is not that the president is promoting it, even though it's possible he's the first person I have actually hated in my life.  My objection is that because of the "popularization" of this medication, without evidence, people who NEED and RELY on this medication for other uses, uses that have been established, are unable to get it.  

I'm essentially agnostic on whether or not it's an effective treatment for covid, and I'd like to see studies done with it given earlier in the disease course.  But my number one fear is the people who need it not being able to get it because of political popularization.  

 

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41 minutes ago, maize said:

The moral of The Boy Who Cried Wolf applies: when a person has repeatedly demonstrated a disregard for facts and a tendency to lie openly and loudly that person will have no credibility should they happen one day to tell the truth. Anything that comes out of such a person's mouth is going to be suspect.

 

Especially in this case when that person has personal and financial ties with the people who produce that drug. I'm gonna be lazy and just link to The Mary Sue here: https://www.themarysue.com/trump-hydroxychloroquine-stocks-and-stakes/

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I think someone may have said this but; we know the drug works against malaria, we know Malaria is a huge killer.  Unless there is an essentially unlimited supply of the stuff without hiking the price up we should not be messing with the supply without proof. 

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22 hours ago, Ktgrok said:

Right, but there is no evidence that it DOES help either, right?  I mean, I dont' have any randomized controlled studies showing that drinking a margarita will make things worse, but I am not going to go on TV and say it is some miracle cure just because I don't have proof it isn't. You need proof it IS helpful, and all we have that I can see is evidence that it may make things worse, not better. 

The new study looks at exactly that, people given it before going on a ventilator, and within 48 hours of diagnosis. It didn't help, and patients were more likely to die with the medication. 

 Ktgrok,  I'm no doctor or researcher, but even I can see holes big enough to drive a Mack truck through in this study.  For crying out loud, they combined the data from HCQ and CQ.  How in the world is that an honest assessment?  Why, oh why, are some of the protocols using it without zinc?  Why are they using it with AZ, which by itself causes QT prolongation and cardiac events?  When you give the two together... 

Eeeeesh!

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19 hours ago, Corraleno said:

When the VA study was released by the FDA recently, showing negative results, Trump called it a fake study and a "Trump enemy statement." Because apparently if science doesn't agree with Trump, then the science is not only wrong, it was purposely falsified by his enemies to make him look bad. Most people can see that pretty clearly as the sign of a narcissist, but apparently some people buy it.

 

I've heard medical doctors who don't have a preference on drug choices and are presenting all the promising medical news regularly, talk about the unfortunate way the VA study was done.  From the clinical data (numerical values) presented for each cohort, it is obvious that the study was grossly flawed, giving the full cocktail only to the sickest patients, ones with bad. bad numbers.  Of course it is ineffective at that point.  

Edited by Halftime Hope
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23 minutes ago, Halftime Hope said:

 Ktgrok,  I'm no doctor or researcher, but even I can see holes big enough to drive a Mack truck through in this study.  For crying out loud, they combined the data from HCQ and CQ.  How in the world is that an honest assessment?  Why, oh why, are some of the protocols using it without zinc?  Why are they using it with AZ, which by itself causes QT prolongation and cardiac events?  When you give the two together... 

Eeeeesh!

I'm not sure which study is being discussed in which thread, but this study separates results into 4 categories: hydroxychloroquine with and without a macrolide (AZ) and chloroquine with and without a macrolide, and they only counted cases in which patients received treatment within 48 hours of diagnosis. The death rates for all four categories, including hydroxychloroquine alone, were higher than the control group. 

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4 hours ago, Pen said:

 

 

 

This is an example of an article on chloroquine for SARS1 — without extreme current political football.

 Iirc, Hydroxychloroquine was found to be as good or better with way lower risk (though not none! )

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1232869/

Please remember that early in SARS2, and still to a significant degree now, we were depending on what we knew from SARS1 (and MERS etc.) research since the SARS1 epidemics to make educated decisions.  

For example, There had not been studies on SARS2, so we looked to what was known about cleaners that could deactivate SARS1, for example.  That was also true for guessing about transmission (unfortunately turned out wrong as SARS2 is apparently more easily transmissible by breathing air with it than SARS1. That was also true for assumptions about time of infectiousness and likelihood of Asymptomatic carriers (also turned out wrong)

And afaik it is a right thing to do that at start of new virus epidemic (and we really are even now near start with more research probably happening on it faster than ever before in human history for dealing with an epidemic). 

Possibly more later.

Back after interruption 

 

Thus also for medications that already exist, and in many parts of world are inexpensive (I have seen reports that HCQ is only around $5for a month supply to use I think daily for malaria prophylaxis in many parts of world— USA medicines of course get price way jacked up), does make sense to be given a good chance of to see if it will work.  

(And just personally, irl real people I have heard enough good reports to personally consider it a good prospect if taken early enough (not magic bullet cure, I haven’t seen **any** magic bullet cure, and do not expect even a vaccine to do better than reduction, but maybe it is a help.  ) 

 

The hype, I cannot help. 

 

If it were kept quiet and turned out good and that had not been revealed that a relatively low cost medicine was beneficial, people would be hugely upset. That would be just as bad as making a mistake to reveal something that turns out maybe not to be as good as hoped — about which many people are upset about that now.

 

Many People are going to be upset regardless.

 

 

 

1 hour ago, Halftime Hope said:

 Ktgrok,  I'm no doctor or researcher, but even I can see holes big enough to drive a Mack truck through in this study.  For crying out loud, they combined the data from HCQ and CQ.  How in the world is that an honest assessment?  Why, oh why, are some of the protocols using it without zinc?  Why are they using it with AZ, which by itself causes QT prolongation and cardiac events?  When you give the two together... 

Eeeeesh!

See below

49 minutes ago, Corraleno said:

I'm not sure which study is being discussed in which thread, but this study separates results into 4 categories: hydroxychloroquine with and without a macrolide (AZ) and chloroquine with and without a macrolide, and they only counted cases in which patients received treatment within 48 hours of diagnosis. The death rates for all four categories, including hydroxychloroquine alone, were higher than the control group. 

Also, no one is saying this is definiteive that it is bad...but we have nothing definitive that it is good! We have a lot of evidence, not perfect, but evidence, pointing to it NOT being good, and NO evidence that I know of (not anectdotes) that say it is good. Yet when I  or others say "we need more research" that's somehow a conspiracy and politically motivated? I cannot for the life of me understand why people think that it DOES work so well, and everyone should take it, etc?? 

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2 hours ago, Halftime Hope said:

I've heard medical doctor who don't have a preference on drug choices and are presenting all the promising medical news regularly, talk about the unfortunate way the VA study was done.  From the clinical data (numerical values) presented for each cohort, it is obvious that the study was grossly flawed, giving the full cocktail only to the sickest patients, ones with bad. bad numbers.  Of course it is ineffective at that point.  

It’s one thing for people, especially experts, to criticize a study. That’s very common and expected and when done by scientists, it is how science advances. I don’t think that is at all the same as our president calling it a fake study and “Trump enemy study”. How is that helpful or productive?

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2 hours ago, Ktgrok said:

 

See below

Also, no one is saying this is definiteive that it is bad...but we have nothing definitive that it is good! We have a lot of evidence, not perfect, but evidence, pointing to it NOT being good, and NO evidence that I know of (not anectdotes) that say it is good. Yet when I  or others say "we need more research" that's somehow a conspiracy and politically motivated? I cannot for the life of me understand why people think that it DOES work so well, and everyone should take it, etc?? 

 

I don’t think everyone should take it.

 I have autoimmunity and could have taken it for that for years, but chose not to.  Maybe that was a mistake? As I read stories of people who cannot get their usual HCQ and are explaining in glowing terms how much better they feel with it, I wonder if I made an error in my life to reject it.  (Btw, If anyone is upset with potus for taking “their” HCQ, consider it my HCQ that I chose not to take for years and am not taking now.)

 I have nothing against the current potus taking it if he thinks it can help, nor people with  CV19 symptoms who want to try it to see if it can help them doing so (without that being difficult).  

I probably will tend to go with nutraceuticals rather than pharmaceuticals, as I have done for years. 

 But I would certainly consider HCQ if I had CV19 symptoms and could get the hcq.   As with vitamin D3, I have no proof that either will work, but sufficient evidence for my own satisfaction that both used at right time and in right way and along with correct cofactors are likely to help, likely to improve outcomes for someone like me, and with potential benefits outweighing risks. 

 

HCQ is not supposed to be something that should be hard or expensive to make enough of. So that it should not be a choice between people who need it for Lupus etc versus people who want to try it for CV19.

Probably there is a problem with sources being overseas, not domestic, and presumably India, China, South Korea etc would be holding on to their own supplies. 

unfortunately making it hard to get may add to runs on it and hoarding  by people who can do so, sort of like a toilet paper situation 

TP seems to be getting available again. I hope HCQ shortages will be fixed soon too. 

 

 

 

Edited by Pen
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38 minutes ago, Pen said:

I have nothing against the current potus taking it if he thinks it can help, nor people with  CV19 symptoms who want to try it to see if it can help them doing so (without that being difficult).  

I probably will tend to go with nutraceuticals rather than pharmaceuticals, as I have done for years. 

 But I would certainly consider HCQ if I had CV19 symptoms and could get the hcq.   As with vitamin D3, I have no proof that either will work, but sufficient evidence for my own satisfaction that both used at right time and in right way and along with correct cofactors are likely to help, likely to improve outcomes for someone like me, and with potential benefits outweighing risks. 

There's actually more scientific evidence in favor of D3, and unlike HCQ, there's zero evidence that taking D3 can increase your chances of dying from Covid-19. Did you read the Lancet study I linked above (which is also summarized here)?

In 15,000 patients who had received either HCQ or CQ within 48 hours of diagnosis, HCQ alone led to a 34% increase in deaths and 137% increase in serious heart arrhythmias. When combined with AZ there was a 45% increase in deaths and 411% increase in serious heart arrhythmias. Chloroquine + AZ actually had lower rates of death and arrhythmias than HCQ + AZ, and only slightly higher than HCQ alone. 

This is exactly why the FDA has been insisting that HCQ should only be used within clinical trials!  Maybe it can help under certain conditions in certain populations, but clearly it can also be very detrimental in some conditions and in some populations — and we simply don't know what's what without more research.

For the president and various news outlets to not only promote the indiscriminate use of this drug outside of clinical trials, but to repeatedly frame fact-based FDA warnings about the drug as left-wing propaganda and fake news designed to keep a safe and effective treatment away from the public just to make Trump look bad is beyond irresponsible, it's really reprehensible. 

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1 hour ago, Pen said:

 

I don’t think everyone should take it.

 I have autoimmunity and could have taken it for that for years, but chose not to.  Maybe that was a mistake? As I read stories of people who cannot get their usual HCQ and are explaining in glowing terms how much better they feel with it, I wonder if I made an error in my life to reject it.  (Btw, If anyone is upset with potus for taking “their” HCQ, consider it my HCQ that I chose not to take for years and am not taking now.)

 I have nothing against the current potus taking it if he thinks it can help, nor people with  CV19 symptoms who want to try it to see if it can help them doing so (without that being difficult).  

I probably will tend to go with nutraceuticals rather than pharmaceuticals, as I have done for years. 

 But I would certainly consider HCQ if I had CV19 symptoms and could get the hcq.   As with vitamin D3, I have no proof that either will work, but sufficient evidence for my own satisfaction that both used at right time and in right way and along with correct cofactors are likely to help, likely to improve outcomes for someone like me, and with potential benefits outweighing risks. 

 

HCQ is not supposed to be something that should be hard or expensive to make enough of. So that it should not be a choice between people who need it for Lupus etc versus people who want to try it for CV19.

Probably there is a problem with sources being overseas, not domestic, and presumably India, China, South Korea etc would be holding on to their own supplies. 

unfortunately making it hard to get may add to runs on it and hoarding  by people who can do so, sort of like a toilet paper situation 

TP seems to be getting available again. I hope HCQ shortages will be fixed soon too. 

 

 

 

There have been prepper types hoarding it since February.  (Partly why although I don’t like the president I don’t think he’s solely responsible for any shortages or for anyone taking it inappropriately - people were doing those things before.  He may have made it worse but it was always going to be a problem)

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5 hours ago, Terabith said:

My main objection to the popularization of this drug is not that the president is promoting it, even though it's possible he's the first person I have actually hated in my life.  My objection is that because of the "popularization" of this medication, without evidence, people who NEED and RELY on this medication for other uses, uses that have been established, are unable to get it.

 

This happened immediately after I first saw favorable mention of the use of this drug to mitigate CV, before the Trump quotes.  Kaiser started to just stockpile it, and informed all patients who were already using it that they would not be allowed to get any more, and that even if their doctors prescribed it the prescriptions would not be filled or allowed.  That’s pretty abrupt and heavy handed.  Ugh.

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3 hours ago, Frances said:

It’s one thing for people, especially experts, to criticize a study. That’s very common and expected and when done by scientists, it is how science advances. I don’t think that is at all the same as our president calling it a fake study and “Trump enemy study”. How is that helpful or productive?

 

I'm not addressing anything regarding the President's views or the media's.  I'm trying to stick to medical professionals whose expertise I've grown to trust over time.

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1 hour ago, Ausmumof3 said:

There have been prepper types hoarding it since February.  (Partly why although I don’t like the president I don’t think he’s solely responsible for any shortages or for anyone taking it inappropriately - people were doing those things before.  He may have made it worse but it was always going to be a problem)

 

Sure.

Nearly Anyone who had a smartphone and is capable of using google could have found plenty of articles and studies that showed that Hydroxychloroquine had shown promise for SARS1 as soon as they became aware that this budding pandemic or world health crisis or whatever it was being called back in January was probably a coronavirus thought to be similar to SARS1. 

(Not to mention that China as a large country, and probably other countries as well would have tried to gather supplies of it as soon as they could do so.) 

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This recent poll by Reuters/Ipsos reminded me of some of the things being discussed here regarding the politicizing of things that aren't inherently political (like medications).

Question: How would the following developments impact your interest in taking a coronavirus/COVID19 vaccine, if at all?...President Trump says the vaccine is safe:

More interested: Republicans 26%

No more or no less interested: Democrats 26%; Republicans 51%

Less interested: Democrats 55% 

https://www.ipsos.com/sites/default/files/ct/news/documents/2020-05/writeup_reuters_2020_coronavirus_vaccine_05_21_2020.pdf

There are several other equally interesting responses in this survey. I think it's a regrettable development in our culture that seemingly everything has to be politicized these days.

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8 minutes ago, happysmileylady said:

The Lancet analysis, IMO, has a lot of problems.

First.....it wasn't a drug trial.....it was just analysis of a bunch of data.  Which, can certainly be useful, but ultimately isn't really much evidence.  The data came from countries all over the world, and we all know that the accuracy of the data across the world is highly variable.  It also goes all the way back to December 20th......and that's like the most brand newest time we have for this thing.  (though I am going to be honest, it did surprise me that HCQ was being used as far back as 12/20/19.)

Second.....it was only for hospitalized patients.  I think our primary goal in treatment of this....treatment vs cure vs vaccine....is to find a treatment that keeps people out of hospitals.  I mean, ultimately, a cure or vaccine would be great, but since those are pretty much NOT going to happen any time soon (if at all) then the best hope we have is a treatment that keeps people out of the hospital in the first place.  Studying hospitalized people doesn't really advance us toward that goal.

Third....as I said before, within 48 hours of diagnosis simply IS NOT the same as within 48 hours of symptoms.  So again, the analysis really isn't addressing the goals.  It has nothing to do with preventative treatment or early intervention.  Especially when you consider that in many places, it took SO LONG to get test results back, especially in early days.  

 

There is no drug that is without potentially dangerous side effects.  And, the stronger the drug, the more dangerous it can be.  Chemo can be a lifesaver....and is in a lot of places.  It can also kill people.  Anyone with any condition could try a new med and end up with a life threatening allergic reaction.  

 

I get what you are saying but I’m sure you’ll agree that if HCQ proves to be unsuccessful the sooner we know the better, and I also hope that all this attention on HCQ doesn’t interfere with the search for other successful therapies. I don’t think all us armchair researchers speculating are interfering with the search of course, but I hope the whole political furor doesn’t interfere with it either. 

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20 hours ago, Pen said:

 

  As with vitamin D3, I have no proof that either will work, but sufficient evidence for my own satisfaction that both used at right time and in right way and along with correct cofactors are likely to help, likely to improve outcomes for someone like me, and with potential benefits outweighing risks. 

 

What is this evidence? Seriously asking. 

55 minutes ago, happysmileylady said:

The Lancet analysis, IMO, has a lot of problems.

First.....it wasn't a drug trial.....it was just analysis of a bunch of data.  Which, can certainly be useful, but ultimately isn't really much evidence. 

 

Right...but it is the most evidence we have. I mean, does anyone have better evidence to the contrary? If that level of evidence isn't enough, than what are they basing their idea that taking helps on? Because I'm not seeing BETTER evidence that it helps. So you can't say, "well, I think it helps" based on even less evidence, then say this study isn't enough evidence to say it might be dangerous. If that makes any sense, lol. 

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23 hours ago, Halftime Hope said:

 Ktgrok,  I'm no doctor or researcher, but even I can see holes big enough to drive a Mack truck through in this study.  For crying out loud, they combined the data from HCQ and CQ.  How in the world is that an honest assessment?  Why, oh why, are some of the protocols using it without zinc?  Why are they using it with AZ, which by itself causes QT prolongation and cardiac events?  When you give the two together... 

Eeeeesh!

I think it's because you can have a quick study or a good study; not both. 

I think that the evidence is still out on this medication. Some people who have used it (as in prescribing physicians) think it works. Others have said they don't really see a difference or that it does more harm than good. We don't know and I think we should continue studying it along with all the other possibly promising drugs, but that we shouldn't just give it to everyone. 

I took it as an antimalarial (almost 20yrs ago) and it was safe but there were definitely a lot of warnings around it. My doctor said that he only approves it if the risk for malaria is high. I decided not to travel somewhere with a malaria risk with small kids specifically because the risks of the drug. 

 

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6 minutes ago, Ktgrok said:

What is this evidence? Seriously asking. 

Right...but it is the most evidence we have. I mean, does anyone have better evidence to the contrary? If that level of evidence isn't enough, than what are they basing their idea that taking helps on? Because I'm not seeing BETTER evidence that it helps. So you can't say, "well, I think it helps" based on even less evidence, then say this study isn't enough evidence to say it might be dangerous. If that makes any sense, lol. 

 

You mean HCQ, not D, right?

 I don’t have it available.  The only thing I felt strongly enough about to try to convince others of at least initially was the D.

I am not taking HCQ and hope I wont feel I am sick enough to want to ask for it. But it is on my list of things that I would ask for if I had a confirmed case and felt like I was not doing well. 

 

However, I would personally start with Quercitin which I think has potentially similar positive effects to HCQ without the dangers. Along with zinc.  

 

On Quercitin:  I don’t have it now (am only on short break dealing with electric, fridge, freezer, and mouse troubles) but there was an interesting preliminary study that came from possibly Turkey on reasons potentially promising for Quercitin and other more natural food (mostly fruit and vegetable) components .   I might have that or others more related to HVQ saved somewhere and if so I’ll post later (after mice etc.)  Or maybe pm you.  I’m willing to try to answer serious question seriously, but don’t want an unpleasant bunch of human interaction on top of the electric etc troubles. 😊

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