Ivermectin! I think that given the dilemma posed by CLL with regards to compromised immunity, I think we need to be open this option in light of the paper I have linked below and in the absence of any suitable alternative. If there are others that have recovered because of this drug, I want an unimpeded
opportunity to try it. Why should anyone object to that? It’s my life and so it should be my decision to make. As you can tell, I really am not swayed by controversy but rather by objective science and frankly, the testimonials of those who have made this choice. And I am a bit cynical: The vaccines would never have been granted emergency use authorization if there were an effective treatment. Emergency Use Authorization stipulates this. In other words, an effective treatment would have cost the vaccine makers billions of dollars. Just telling it like it is.
I think whether we are considering ivermectin or any other treatment that earns its manufacturer more billions, even if there is evidence of effectiveness, it is important to pay attention to some details. When does it work - can it serve as a prophylactic? Is it effective only at onset of symptoms? Can it be effective if symptoms are severe? And what does “effectiveness” mean: Here the bottom line has to be either to halt progression to severe disease or reduction in mortality if you have already crossed the severity threshold. What’s the “effective” dosage? Does it work alone (mono therapy) or must it be combined with other things such as antibiotics or dexamethasone or Vitamin D or zinc or whatever? Are there contraindications? All these questions should be carefully answered assuming you have the luxury of time.
BTW, if we make treatments that are “effective” (based on rigorous evidence or at least that are “allowed” to be subject to such scrutiny) readily available, the number of cases that become severe should be greatly diminished. Doing so is key. So for example, the pill intended to treat COVID made by Pfizer is currently in a Phase 2/3 trial. And it is intended for use in cases that don’t require hospitalization. Unless I am deplorably unaware, it is rare for someone to require immediate hospitalization at onset of symptoms. If that is accurate, then the treatment that is effective at an early stage had better (!) be made easily available at that early stage. I hope I speak the obvious! Nevertheless, it does not mean it will play out that way. Time will tell.
Cheers!
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Luap001
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Are you aware that the primary conclusion of this paper from April 22nd this year has been totally discredited by the withdrawal of the largest fabricated ivermectin trial in Egypt, which claimed massive improvements but which was never peer reviewed and was withdrawn in mid July?
Meta-analyses based on 18 randomized controlled treatment trials of ivermectin in COVID-19 have found large, statistically significant reductions in mortality, time to clinical recovery, and time to viral clearance.
Several meta-analyses have since been redone since the withdrawal of that fabricated study and they all show no statistical benefit from using ivermectin when just that one fabricated trial is removed from the meta-analyses.
I was unaware so thanks for the link. I do remember hearing something about a terminated Egyptian study but I never followed up. It looks like the Oxford study is still on (is that still the case?) I would trust that to be definitive. I would not reach any conclusions either way at this point based on what happened in Egypt.
It is truly hard to know what to believe. Here in The US, Dr Fauci has been very inconsistent and contradictory. We had Lancet withdraw an anti-hydrochloroquine paper because it was fraudulent. Remember that? I wonder if any reputable and trustworthy evaluation has been or could be carried out to evaluate its possible benefit in conjunction with azithromycin and zinc. And recently, JAMA Peds had to withdraw a paper dealing with masks and children. How disappointing this all is!
And now there are reports that the vaccines and antibody therapies and even natural immunity derived from recovery against prior variants are all ineffective against the new Mu variant. Who knows if those reports are accurate? We need transparency but it is uncertain if that will be forthcoming. It’s a sad state of affairs. It is in fact these reports that renewed my interest in ivermectin.
The Oxford PRINCIPLE study indeed should provide a definitive result. Unfortunately, even if they confirm no advantage with ivermectin, I doubt this will ever go away.
Be careful about claims of Dr Fauci being inconsistent and contradictory. Science can't give us perfect answers, but iteratively gets closer to the truth, which sometimes requires a reversal of previous, in good faith, advice. Unchanging advice can be a sign of incorrect advice, particularly in something as fast developing as our knowledge of a new virus. This is a significant part of the problem; when we are trying to save lives, papers get published without the delays from peer reviewing, so fraudulent papers like the Egyptian study can corrupt the process by which science advances.
Fauci admitted that he stated early on that you don't need masks in order to preserve masks for health care workers. He lied and his credibility is suspect. He also wrote 20 years ago that a risk of pandemic may be worth it to learn more about viruses. He is one voice who has been in charge for like 30 years. No one person should afforded such regard as the ultimate authority on covid. Gain of function research is in my opinion fraught with danger.
I do not think Fauci lied - he took his best guess at the time and then looked at the data and changed his recommendation. Is he perfect? no - but i do consider his opinion and separately research each issue. I have had doctors who have been wrong, bosses who have been wrong, pastors who have been wrong - but that does not make me not listen …
You can listen absolutely but there is a credibility gap with many for Fauci. He is not the sole authority on covid. But his motives re not wearing masks is suspect.
This situation of there being bad science around is nothing new..It has been the case that people sometimes do science badly, make errors in analysis, or that politics, philosophy and religion have influenced scientific interpretation and conclusions for centuries.
What matters more than ever today, is to be very wary of strong conclusions drawn from meta analysis of multiple studies; too often the studies will have designs that makes the statistical meta analysis unreliable, to put it mildly.
I read one particular researcher, ‘Health Nerd’ @gidmk on twitter, looking at multiple ivermectin studies and, one after another, he is finding fantastical flaws.. generously speaking, a lot of wishful thinking. Sadly.
This does not mean that, taking one human size dose of ivermectin might not be very beneficial — that it might resolve unseen/unsuspected parasitic worm infection.. this with considerable healthful benefits.. one more component of achieving good health, alongside optimising nutrition / vitamin status / etc.
But this is not a regular ‘prophylactic’ treatment, it is a brief treatment at standard worm treatment dose.. just as cat/dog owners may take a periodic worm treatment due to their proximity with pets on beds etc.
IMO, the emergency use rule that would have precluded emergency use release of vaccines if an effective treatment were available created a needless conflict. Development of vaccines and treatments should have been promoted equally and the excellent concept of evaluating existing drugs and even nutraceuticals (why not?) known to be safe for applicability to COVID treatment should have been promoted and funded. In this way, the best, most reputable labs could have conducted proper studies early last year and by now we would have at least clarity and perhaps more therapeutic options. And perhaps as a result lives could have been saved.
It seems to me that someone in Egypt was so sure that ivermectin is helpful that he took shortcuts because he wanted to roll it out the sooner the better in order to help people. Of course that is not the correct way to do it but the intention might have been good nevertheless. Having said that, ivermectin seems to be very helpful when the patient starts to take it shortly after infection. That is our experience with it over here. In any case I have not heard of any adverse reactions to it. So the question would be if it cannot harm me but it may be helpful why not take it. If I get infected I will definitely take it.
Why does an investigative reporter not go there to find out first hand what is going on and report on this either way? It might be because it would not be allowed to be published.
That is what those people who I talk to say too. Not to mention several MD's used ivermectin with success here. And they were not hesitant to go on national TV to publish their own experiences. In one of my comments I mentioned the lady MD who treated 180 patients and none of them ended up on oxygen or on a ventilator. Despite a great many of them was in grave condition with double side pneumonia.
It's a shame we can't judge these things without political judgments. We don't have the luxury of waiting for peer reviewed clinical trials when people are dying. The risk of Ivermectin is very low..the risk of covid is very high. If you or your loved one is at risk of dying people will and should try anything that has possible benefit. We make risk benefit decisions every day.
Exactly. There's a risk reward to the vaccines too. They aren't completely safe. There were possible deaths linked to them. There were lots of serious side effects too. But they are still much safer than covid itself.
Egypt is a military dictatorship with a history of bloviating like this - there's absolutely no reason to trust this paper, even if the country has many great doctors and researchers. Fauci is not a liar; the early stuff he got wrong about masks came from the WHO, which made a bad calculation based on the shortage of PPE for medical professionals. The United States then failed to secure enough masks and antigen test kits because of its "made in America" b.s., while meanwhile Germany and other European countries worked with China to get KN95 masks to ensure that they were available to everyone.
Many of the United States' mistakes have nothing to do with Fauci or the CDC, but were rather because of selfish economic policies.
The argument about the billions made by the vaccine manufacturers is not valid at all. If there was a way to treat covid this would be the same manufacturers producing the drugs. And it's very likely that the treatment drugs would be much more expensive than the vaccines. So these guys are actually losing money on account of the vaccines because less people get sick.
Well they are developing treatment drugs so will make money there as well. Yes drug companies are in business for profit but the cynical view of them as greedy monsters putting $ before health is unfair, e.g. the theory that they know the cure for cancer but don't want people to know about it so they can still sell their high priced drugs! So if greed was the primary reason Ibrutinib was created then I hope they stay greedy! The profit motive is the primary reason we enjoy such a high standard of living on many fronts.
There are too many nuances to this. How would you like them to make your annual cost of ibrutinib to $1 million? That'd be great they'd make a lot of profit right? How much can they charge you for something that your life depends on and there is no alternative? How much can they milk the insurance companies before they double triple or quadruple your copay? Whatever the market bears? Because they are doing just that. And for who's sake? Shareholders. These are publicly owned companies.
To be clear, I am not against drug companies making billions. Drug companies as we all know develop many life saving or life prolonging drugs including for CLL. But the government emergency use rule created a conflict of interest between the development of vaccines and treatments. The early availability of an effective treatment would have denied emergency use release of vaccines. We should have amended the rule (even if only for COVID) to allow pursuit of both with equal vigor and to allow release under emergency use of any consequent effective vaccines and treatments (and that might have included inexpensive existing drugs known to be safe that were thereby determined to have applicability to the treatment of COVID). The rule as written is my primary issue.
There are still no treatment drugs. And I believe they are working on them just as vigorously as they worked on the vaccines. Simply the vaccines came first. In my place the local version of the FDA granted emergency utilization of ivermectin for treating of covid. And lots of MD's used it. Many of them with great success. Some of them say they did not notice a difference. But none of them said that they noticed any harmful effects. Hydroxychloricine was also granted emergency use authorization. And in the very beginning it was used too. There were less reports of success with that one. By the way I read that AstraZeneca actually lost money on the vaccine. After the first 3 months they lost about 60 million dollars and during the next quarter they lost about 20 or something like that. It became profitable only in the third quarter. Because they kept the price low so that everybody can have access.
The current evidence is that ivermectin does not work for covid. It is supported more by a political ideology than science.
The conspiracy theory behind ivermectin, and hydroxychloroquine before it, and certain inhalers too is that govt and pharma companies are conspiring to deny us easy treatments that would cure covid.
Many people who promote ivermectin are also skeptical of vaccines and quick to challenge vaccines and scientists who support them. They also are more likely to challenge masks.
The problem with that theory is that virtually every top science officer for every civilized country in the world endorses vaccines and masks while very few endorse ivermectin. The odds of France, Germany, Russia, the UK, the US, China, Spain, and Canada all being in a conspiracy to do anything together are nil.
The vaccines are a modern miracle in their rapid development and their ability to stop serious disease in the vast majority of vaccine users. No scientist ever expected the vaccines to be side effect free or to be 100% effective, people who think they should be have unreasonable expectations of how vaccines work.
People skeptical of the vaccines and waiting to see how they work are getting sick and dying by the thousands. The ivermectin hype is a driver of vaccine hesitancy.
I hope the trials show ivermectin is a miracle cure, I would use it if approved. As of now, virtually no top Cll doctor would prescribe ivermectin for us. They would all tell us to take the vaccine and mask.
Given the lack of antibody response post vaccine in many with CLL and evidence that masks may help reduce spread but not necessarily protect the wearer, I am not sure that this advice given by a CLL would be sound unless it were accompanied by some serious caveats: You should do these things but you should not expect as a result to not be vulnerable to infection.
There are people who are hesitant to take the vaccine, most notably among American minority groups, and while I agree with you that the vaccines have been fantastic, particularly given how quickly they were developed, the fact remains that an effective treatment would have been an obstacle to their release. And that does create a potential for conflict of interest. What I especially don’t understand is why it had to be that way. In other words, it seemed to me that the rules could have been changed given the pandemic emergency to have allowed both pursuit of vaccines and treatments simultaneously under emergency use. Why that was not done remains perplexing to me.
So Oxford is going to properly study Ivermectin. Good. Why has it taken so long? My guess is that we had to wait for the vaccines first because of the details of the emergency use regulation which again I argue could have been changed, even if narrowly in relation to COVID. And I am unaware that the hydroxychloroquine/azithromycin/zinc protocol has been given a fair study. Perhaps I am wrong?
The whole concept of evaluating existing drugs of proven safety for use against COVID especially at the start of the pandemic made (and still makes) a lot of sense to me, wouldn’t you agree that it is a worthy pursuit? But because the prospect of possible success posed a threat to vaccine funding under emergency use rules, there was a lot of resistance to this sound concept. And even where we did have treatments, they were not being highly promoted: Our healthcare system was slow to promote the use of Regeneron-COV2 (the antibody cocktail) even though the taxpayer paid to make it available to everyone at no cost. Why? Many may have avoided hospitalization and even death had more been done here.
Retrospective questions such as those above are critical to have answered otherwise the process will never improve.
Likewise with regards masks. Because not all masks are equally effective, common sense tells you that not specifying the kind of mask makes the whole mandate a joke. Widely worn, loosely fitting, paper masks for example satisfy the mandate. This too should be addressed going forward.
I am a critic of Fauci because first he said masks were not helpful and then he eventually said we needed to double mask. This is not a consequence of evolving understanding because there is a history of publications regarding the use of masks in relation to airborne viruses. As early as 2003, there were publications in relation to Corona SARS saying that surgical masks were more likely effective at reducing spread than preventing infection. And at a time when we were being told that we needed 15 days to flatten the curve, I think that our top infectious disease officer (who is also the highest paid person in government), was irresponsible to have ever said that masks don’t work. And fast forward to one of his most recent statements that we should be able to go back to normalcy in Spring of 2022. When asked what percentage of people would have to be vaccinated for this normalcy by Spring to be achieved, he replied “I have no idea.” See what I mean? His projection of normalcy by Spring of 2022 is based on nothing.
In the October 2012 edition of The American Society for Microbiology, Fauci published a paper saying essentially that it was not unreasonable for people to have concerns about a dangerous virus escaping from a lab. But in light of the evidence of considerable emails and pre-pandemic publication acknowledgements, we know that under Fauci’s watch that US taxpayer money went to fund gain of research experiments at the virology lab in Wuhan. It also makes clear that Fauci favored gain of function research!! Gain-of-function (GOF) research involves experimentation that aims or is expected to (and/or, perhaps, actually does) increase the transmissibility and/or virulence of pathogens. So while even the idea of a lab leak was attacked by Fauci, the motivation for his doing so is now clear. I think it is important that we know how the world was afflicted by this pandemic. And the need to know that is of course essential to preventing future occurrences by the same means. Of course China would bear enormous liability if a proper investigation confirmed what is likely. In any case, surely there are better, less conflicted choices of individuals to lead our pandemic response effort than Fauci.
Here are two pre-pandemic papers discussing the nature of the research we participated in funding of. If you are not familiar with these, I will caution you that you might find them upsetting.
You have made many mentions of what you see as a missed opportunity of research into existing drugs. How quickly we forget! There were many such efforts such as per this reference. sciencedaily.com/releases/2... drugs for other uses also had the advantage of being able to be prescribed "off label", if the dose was the same, i.e. "no emergency use" FDA requirement.
The effectiveness of masks lacked specific evidence with COVID-19 until recently. How it spread was uncertain. Remember the concerns about surface contamination and the regular cleaning recommended? There was an early Danish study which was inconclusive. Per insights.som.yale.edu/insig...
"In the first weeks of the COVID-19 pandemic, health authorities advised against the use of masks by the public, concerned about diverting supplies from healthcare workers and creating a false sense of security that would reduce compliance with public health recommendations like social distancing and hand washing. By April 2020, the U.S. Centers for Disease Control had reversed itself; in June, the World Health Organization followed suit."
That Dr Fauci made the statement about masks early on which he later reversed is now considered regrettable, but per the above quote, there was inadequate provision of PPE for health care workers. I remember reading with horror what they had to put up with and sadly many died from COVID-19 infections that could have been prevented if adequate mask supply was available. There were tests done on how best to sterilise single use masks with health care workers reusing their masks over and over. If Dr Fauci had not made that initial statement, which he later was criticised for reversing, how many more health care workers would have died?
“Serious caveats” ???? Yes!! We are amidst a pandemic involving a dangerous novel (new) virus with unknown long term impacts.. Sure! There are caveats!
Be cautious. You have immune dysfunction.. be cautious.. wear a good quality mask that fits well.. avoid other people.. avoid crowded places.. avoid indoor spaces.. etc etc etc .. We known the caveats, yes?
What is this thread, one that you started, about?
Do you really want to dive in to conspiracy theories and talk about the possible origins of COVID19? Because it is not at all relevant here. Thx.
“Maybe I am wrong about.. ?”
Yes, you are indeed wrong about almost everything that you write here.
mRNA vaccines have been studied for 40+ years.. most of the work for the SARS-CoV-2 vaccines was refined for SARS.. these vaccines were not developed rapidly.. and the testing was helped by.. a PANDEMIC crisis of highly transmissible”e novel virus.. so it had huge funding and vast numbers of volunteers and the emergency use case.
Very many people are in (certainly US) hospitals with Ivermectin overdose/toxicity issues.. these patients are blocking beds that could have been used for treatment and medical support of actual COVID19 patients.
Medical science research is not slowed by early use of COVID19 vaccines.. treatment research is going at pace.
What are you reading that makes you think your reading is comprehensive? Perhaps just some stuff of social media / FaceBook? Or is it from conspiracy websites?
Face masks:
N95 and N99, ffp2 and FFP3 .. if they are authentic and fit properly, they give the wearer a high degree of protection..
What behaviour should you follow as a CLLer?
Up to you!!! But you’d be unwise to spend much time indoors with lots of people, or indoors with people who are not wearing masks.
There is currently”y no evidence that ivermectin is a beneficial treatment for COVID19 — never mind what you have read.
Are medics/scientists pursuing research into the possible benefits of existing drugs to treat COVID19? Yes!! Since the very beginning of the pandemic .. of course! Do you think the world of medicine and science is full of stupid people sitting on their hands with no ambition to solve health problems? Seriously? Why would you think this?
Pause. Take a breath.
Normalcy by Spring 2022
Let us hope that governments start trying to reduce infection transmission, start doing clear, honest communication, and that their populations start listening to and acting on their good advices..
Let’s hope that very many more people, including in the third world get fully vaccinated.. Even the UK struggles: 4 million over 40s not fully vaccinated.
“I am unaware that the hydroxychloroquine/azithromycin/zinc protocol has been given a fair study”
Rephrase:
Hi. Has a study of hydroxychloroquine/azithromycin/zinc protocol for COVID19 been completed yet?
I’ll bet you lots of such studies have been done and it has not delivered any magical answer.
The best we have right now:
1. Vaccines that prevent death and dramatically reduce hospitalisations
2. Face masks that reduce infection transmission
3. The science of aerosol transmission and indoor ventilation and air filtering.. these are key indoor transmission mitigations.
CLLers? Likely best that we continue to mitigate our own COVID19 risks by limiting our exposure to risk presented by others, by indoor spaces, and so on.
We each must make our own risk decisions, but we remain high risk for serious course of disease and hospitalisation.
I would add REGN-COV (the antibody cocktail from Regeneron). If you become infected, I urge you not to wait and to seek this treatment out.
I hope eventually to add to your list the long half-life antibody cocktail from AstraZeneca (entering Phase 3 trial). If this cocktail is approved, I would prefer it to the vaccine because if I cannot produce sufficient antibodies myself, I am happy to receive them if they reliably do the job and especially so if that protection is show to last close to a year for most.
I think indoor air “management” is very exciting and wonder what the practical limits are. I am hoping for example that it could make indoor dining in restaurants reasonably safe for most people since so many people directly and indirectly depend on this industry for their livelihood as well as the social dimension of dining out with family and friends. And I am hoping children can go to school mask free if their classrooms are so equipped. If anyone has insights into what is actually possible, I would love to learn more.
I am not against vaccines or masks. I am not into conspiracy theories. I don’t use social media because it is mostly biased and filled with nonsense. The one exception for me: I do find some interesting content on YouTube. I recommend for example the videos produced by Aaron Collins that evaluate masks. Check them out. My beef with masks is not the use of masks themselves but what often passes for a mask that is utterly useless. Also, I am not persuaded that children must be masked given their exceedingly low risk of severe disease. Every decision has a cost. In the case of children, they need to see facial expressions. That’s good for social development. Adverse effect on their development is too high a cost IMO. Besides, kids often don’t wear masks correctly anyway so what’s the point?
I do believe people should not be compelled to vaccinate even while I think for most, but not all, it is prudent to do so. I don’t want any government to have that kind of power. I remain unclear regards the benefit of a vaccine to someone who is immune compromised to a degree where they cannot produce their own antibodies. Do you see a bane fit in that circumstance? Or if in some CLLers, the benefit is say 50% protection and the argument is that some protection is better than none, I agree with that but in terms of lifestyle benefit, it does little (flip a coin and hope your lucky) as compared to the approach pursued by Astra Zeneca regards the long half life antibody cocktail: If you cannot produce antibodies, you need to be given them. Doesn’t that make a lot more sense and offer more opportunity to live an in isolated life? I know, good things come to all those who wait. We can hope that true, assuming you have the time to wait. The only choice to do this today is to use REGN-COV as a prophylactic. Not terribly convenient.
Still, if I were to become infected in spite of best efforts to avoid infection , I want to have an opportunity to recover. Maybe next year we will have many choices. But in the here and now, we do not other than the COV-REGN infusion. And at the onset of the pandemic, we did not even have that. If ivermectin has been adequately vetted, why is Oxford now going to evaluate it? I contend the reason is because it has never been properly evaluated. And my initial reliance on a meta analysis that turned out to be flawed further makes that point. And if Hydrochloroquine used in conjunction with azithromycin and zinc is completely ineffective, where is a reputable study that has established this? I can’t find it. Are you aware of one?
As you know, it takes money and sophistication to evaluate a new use for an existing drug and the funding emphasis was on vaccines and not therapeutics. That is not a statement against vaccines but it is a statement against the rule here in The US which in effect says if you establish an effective treatment, you cannot market your vaccine early. That’s stupid! I believe there should have been an equal emphasis on vaccines and therapeutics and this rule served as an impediment. And the attempt to find an existing drug to serve as an effective treatment was intended to find a way to stem the spike in deaths - the motivation and even the common sense of doing this is sound. Are you convinced this was done well enough to where we can conclude that there was no such opportunity? I think even now, we do not know either way with certainty. So if a group of doctors at least some of whom were reputable and well situated in terms of their careers are willing to sacrifice that by making a claim that a treatment works, I think someone who in the absence of any alternative should have a right to try it particularly if they cannot wait for a study to be completed. What have they to lose? Someone who goes to a veterinary supply and self medicates - that’s stupid. But their actions should not be used to mask the choice to seek use under proper medical guidance.
While the effect of vaccines has been remarkable although the effectiveness is waning so hopefully there is a timely way to keep pace with those variants that can outwit the existing formulations. The effectiveness of therapeutics on the other hand don’t wane so quickly and the more therapeutic drugs available, the better the odds we could deal with any resistance that develops, much as we have with antibiotics. Both vaccines and therapeutics are obviously necessary to manage life with Covid.
As far as the origin of the virus, this and everything that was done incorrectly or inadequately must be understood and dealt with or else we are doomed to repeat mistakes when the next pandemic hits. I think that is all critical. Officials must be held accountable through due process as part of that. If you disagree, that’s your prerogative.
As the situation exists presently in the U.K., we have to rely more on vaccine/masks and social distancing because unlike the USA, therapeutics are not readily available and certainly not prophylactically. Different set of circumstances demand different personal protection protocols.
Understand Newdawn. Curious to know: Is the Regeneron antibody cocktail is available in The UK? I would also note that it is Oxford that will hopefully give us the definitive word on ivermectin.
Ronapreve (casirivimab and imdevimab) was authorised by the MHRA on the 20th August in the U.K. but the criteria for application isn’t certain yet though it would appear that the intent is to use it in a treatment capacity rather than preventative/prophylactic way at the first sign of symptoms as in the States. Due to cost, I suspect it will be carefully metered out to qualifying applicants.
You are still managing to be wrong about most everything you write.Sorry.
Social media:
Facebook - I’ll agree that this is a terrible platform that allows personal data theft, political advert targeting and all manner of gross disinformation.
Twitter — here you will find very many world experts in science academia.. virology, immunology, medical fields, aerosol science, etc etc etc. You can do really well here by following experts.. with a few exceptions - folk pushing some hidden agenda running counter to the facts widely agreed by others and usually pointed out by the majority of others in their field.
Here I read a new acronym: SARS
Severe Alzheimer’s Respiratory Syndrome
Why did the expert coin this?
Because the COVID19 t-cell immune events that occur in the brain (that never occur with influenza) causing inflammation, cause various degrees of neurological harms - decerebration - with unknown long term consequences..
What else? That kidney damage may arise from asymptomatic COVID18, even months after recovery.. as CLL caused me kidney problems, I can affirm how scary it is to be in a kidney transplant ward, meeting patients who have had more than one kidney transplant, and this largely reliant upon generous next of kin donating..
Harm to children?
USA: 400 paediatric deaths from SARS-CoV-2 by 19th August.
If children are not wearing masks correctly, remind me: who teaches the children how to do these things? Well.. teach them some more, until they achieve mastery. Importance of facial expressions? That will be less important if they suffer neurological or other harms via catching COVID19 or take the infection home and become ‘responsible’ for their next of kin suffering harm or death. Right?
Vaccines versus therapeutics:
I don’t think that I have suggested vaccines should be compulsory - they are so relatively effective that every effort should be made to ease people’s doubts so that they agree to receiving the vaccines. Often their doubts are resolved by conversation with health worker of expertise who can answer key questions.. eg. That they are experimental / rushed / unknown.. when in fact their development for C19 is mostly based on decades of work that resulted in vaccines for SARS(1)..
Have you any reference to US regs in the way that you describe?
I suggest that researchers and big pharma will have a good idea how to prioritise their efforts.. some will have vaccine specialisms, they will have continued researching such things, whilst others will have specialisms relevant to therapeutics.. that is how it works the world over.. Your evidence to the contrary?
Do I think the world of pharmaceutical research is lazy and unmotivated and slipshod? No.
Do I think that faulty science and disinformation should be allowed to run free and result in thousands of people falsely believing in things that won’t keep them safe? No.
Ivermectin: Sure, Oxford study may prove definitive.. as of now, per my previous reply, most existing studies are shown to be very flawed, and provide no evidence of benefit. It is also sadly seeing overdose issues:
Yes, let’s hope we CLLers get the benefit of more treatments, meanwhile, our expert consultant advice is to get vaccinated, and will be to get booster jabs.. some of us will, maybe, get zero benefit.. but likely worth the chance; immune system complexity makes measurement of the vaccination benefit very difficult. Meanwhile, our task as clinically vulnerable, is to stay safe any which way we can..
Masks: use of a well-fitting n95 / kn95 / FFP3 mask is a wise investment, quite possibly with a surgical mask over it to aid a good fit.
Origin of COVID19?
Right now, I am trying to survive this pandemic, trying to see how to rebuild my life after CLL treatment, trying to move forward and through, with adjustments. The origin of COVID19 is the least of my very real concerns just now.. you are welcome to focus on that, but it is not very relevant to this community where survival and health risk is of the moment: a lived daily experience - affects everything.
While we don’t agree on much and because texts don’t convey attitude, let me convey that I see this as a debate and not an argument. In the end clarity is more important than agreement.
Since I cannot speculate on what motivates decisions at pharmaceutical companies or how smart those decisions are, let me pick one item that can be reasonably evaluated and that I care most about. Children dying from COVID. I daresay there is a common interest here since many of us have children and grandchildren and while we care about our own lives, we must certainly care about theirs because they are the future. And it is interesting even in terms of trying to understand what can work to reduce viral load at the community level particularly as the effectiveness of vaccines wane although additional boosters will hopefully offset that, at least in the general population. IMO, I think boosters, if effective, will be accepted by the public so long as the frequency of them is not absurdly high. Most people I believe would refuse to take a booster every 3 months for example. I am speculating but I am probably right.
If that frequency made a big difference for us with CLL, we likely would accept that given our different outlook.
So the one thing I did not learn from the doctor’s video is whether or not the children who died wore masks. Even though he is using the statistic to promote children wearing masks, he did not make this clear and he should have. A caveat about experts and about Twitter. Experts as a group are just like everyone else in respect to having bias. This includes medical researchers and doctors. And that is in and of itself not a bad thing if it is allowed to play out since debate and skepticism in science is a very good thing. Group think on the other hand is a very serious danger. Twitter overwhelmingly allows only the expression of opinions that agree with whatever the current US government says on any issue, including COVID policy. So if there is a way to put what you hear to the test, that’s fine. But I would caution that many reputable experts with differing views are not given a voice.
The average number of weekly US COVID deaths of children over the most recent 4 weeks according to the chart in the video is 400.
In the U.K., according to your government’s statistics, the number of such deaths over the past 4 weeks was 52.
The US has about 5.5 times as many school age children. So adjusting for the school age population difference,
The average weekly deaths of children in the U.K. if applied to The US would be 286.
So even adjusted for population, more children are dying in The US than in The U.K. so the question is why.
The Israelis say that the incidence of Covid among children is inversely proportional to the number of adults who have been vaccinated. To date, The U.K. is ahead by about 20% in this regard. So this could be a contributing factor regards the difference.
Interestingly, according to The BBC, school children in The U.K. are not required to wear masks in school except perhaps in crowded spaces such as on school buses. In The US, requirements to wear masks varies. I would say most schools do require it.
So far, masks don’t appear to be a determining factor among the COVID death rate among school children between the two countries assuming the accuracy of The BBC. Our school district happens to require masks and the vaccination rate is relatively high among adults and even older children. Still, infections occur. And unless the masks are N95 or equivalent (and even these offer no guarantees), they offer limited protection against aerosols. And N95 masks have never been used predominantly and they currently are not frequently used in schools here. As far as parenting to proper mask wearing, probably can do that with older children but it’s not realistic for younger children.
The U.K. however is doing something interesting by deploying CO2 sensors for use in schools to identify areas where the air ventilation is inadequate. And then apparently they either stagger the number of children that use those areas at one time or else attempt to improve ventilation. They are also using room HEPA filtration air purifiers. There also appears to be a program (voluntary) of regular testing at home and of PCR testing for students found to be be infected while in school as well as for those in proximity to that student. All those who test positive would then be subject to a ten day quarantine. It is not scientific to say but it makes sense that these measures could be what mostly accounts for the better rate in the U.K. I think particularly the use of CO2 sensors is very smart because once you know where there are issues, those issues are not going to change much throughout the year assuming temperature and humidity do not vary profoundly in the indoor spaces. It’s not perfect but it is reasonable. And the cost of perfection prohibitive.
Here in the US, we have allocated vast sums of money for improved ventilation. That is a good thing but the roll out takes time. I think CO2 hotspot identification is quick and cheap and I may just contact my government representative to see if we could replicate that here.
It would be good to learn what measures countries who have achieved the lowest COVID death rate among children are doing right. There may be some insights and even surprises. You might find this answer on Twitter but only if it agrees with what our government says.
It's really interesting, and unfortunate, to read these stats. I live in Germany, where a grand total of 25 children have died of COVID in 2021 (and nearly all had health conditions). It simply doesn't have to be this way - here, children 6+ must wear masks, and they do so diligently. We have not yet approved the vaccine for under-12s (no one has, I don't think), and 12-17 y/o's can only get Pfizer. And yet, children just aren't dying here.
Notably, 65% of the population is vaccinated, and they're still giving out 200,000 jabs per day (both first and second), which suggests a high level of compliance, with very few actual anti-vaxxers (I'd say we have plenty of "vaccine hesitant," or people who were just slow to get around to it, as I'm sure most countries do). Mask compliance indoors is about 99%, and the only indoor spaces you can go unmasked are restaurants and clubs - but you have to show your vaccination certificate (or in some cases, a negative rapid antigen test). Also, we must wear FFP2/KN95 or surgical masks - none of those flimsy cloth ones.
What Germany really did right though was widespread testing - daily rapid antigen tests are free in Berlin, and PCR tests cost less than half of what they do in the US. Of course, the government subsidized this, which would never happen in the US.
As for your point about boosters - I suspect people here would be happy to have them. I suspect the same for New England states in the US, where some of my family lives and vaccine compliance is up around 80% in most places, 100% for elderly.
Let's just not assume everyone is like the average Republican.
Amending my earlier reply, the number of children who have died in the US since the start of the pandemic is 400 so the information used in the Twitter video was cumulative weekly and not each week. I misunderstood. By contrast the data put out by the UK government is n fact weekly new deaths. So this means recent weekly new deaths of children in the UK averages around 50 per WEEK whereas The US with 5.5x the relevant age population has lost an average of 20 per MONTH since the start of the pandemic. So the question now is why is the child death rate so much higher in The UK? Coincidentally, I just today received a brief from the publication Nature in which they said scientists are trying to understand why children have less severe disease than adults. They note this level of differentiation is uncommon to occur with most viruses. Hopefully whatever they learn will help develop strategies that will in turn help us all.
Again, it wasn't just Fauci but the WHO that made a bad calculation regarding masks. The reasoning was based on two principles: 1) That there was a global shortage and they were afraid people would hoard masks, leaving too few for medical professionals and 2) They were (wrongfully, in my opinion) concerned about fomites and afraid that people would infect themselves through improper mask usage (i.e., touching the outside of the mask then touching their face etc).
Furthermore, while Asian countries had better information, the West wrongfully believed that COVID was not airborne, and could spread only through droplets.
Fauci didn't lie; the entire West got this wrong. Europe just managed it differently by making trade deals for masks with China.
Luap’s discussion about gain of function is very serious. See link to an article on this in the London Times.
How US cash funded Wuhan lab dealing in deadly viruses | News | The Times
Dr Fauci has funded gain of function research in China. He circumvented the ban on gain of function research in 2017, without proper authorization. He failed to insist that the Wuhan lab solve its very serious problems with biosecurity. At the onset of the outbreak, Dr Fauci claimed that the virus must have come from natural sources. Yet he must have known that there was a high probability that the virus escaped from the lab, and that this virus was specifically engineered to be highly contagious and lethal. If he had warned governments and the public in US and Europe at the onset of the epidemic, then they could have imposed travel restrictions much sooner. This would have saved countless lives. So Dr Fauci has a lot to answer for.
Going forward, we must continue to pursue a full accounting of what happened, and press China to ensure that this never happens again. As far as anyone knows, China is still working on gain of function research – more accurately known as biological warfare research. This needs to stop.
The CLL community has been deeply affected by the COVID epidemic. Along with measures to protect ourselves, we should also demand accountability from “scientists” like Dr Fauci.
I agree that Luap’s discussion about whether Dr Facui approved funding for gain of function is very serious. Unfortunately this has become very political, making it very difficult to determine the truth. Fact checks do point to this claim being false, however:
Hi Aussie Neal, I would urge you not to rely solely on the opinion of journalists on matters of public health importance. The fact checkers you refer to – Politico, Snopes etc - are simply journalists with a strong pol9itical bias who routinely label ‘false’ any claim they don’t agree with. Journalists who have done an in-depth look at this have concluded that the lab leak theory must be taken seriously, eg: The World Needs to Know What Happened at the Wuhan Lab - WSJ. And senior scientists have also expressed grave concerns about the possibility of a lab leak, including Richard E
No one can conclusively prove the lab theory leak one way or the other – mainly because the Chinese government has refused to let anyone look at their data, including WHO, and including the recent US commission.. But here’s a summary, as I understand it, of the evidence for the lab leak theory:
The Wuhan lab is supposed to have Grade 4 biosecurity (the highest level), but US scientists have reported serious breaches of protocol in the months and years following the pandemic.
Several lab employees were reported to be sick with an illness consistent with COVID in the weeks preceding the outbreak.
Chinese scientists who worked in the lab or who knew of its activities had raised concerns in journals about the possibility of an outbreak. These scientists have ‘disappeared’.
The Wuhan lab has been doing gain of function research on the coronavirus for years. It seems very plausible then that the outbreak, which started in Wuhan, came from the Wuhan lab. The alternative ‘natural origin’ theory is that it came from the Wuhan “wet market”. But the coronavirus is found in bats, which live in caves thousands of miles away and bat meat is not sold in the market.
Most importantly, COVID is consistent with modification in the lab, as opposed to natural evolution. ‘Professor Richard Ebright of Rutgers University says a 2017 paper by Dr Shi showed the construction of “novel chimeras, in which they introduced spike genes from previously uncharacterised bat Sars-like coronaviruses into the genomic backbone of another, bat Sars-related coronavirus”.
THe Chinese government has blocked any independent review of specimens or original data.
If COVID really was lab leak, then coordinated international action is needed to ensure that this never happens again.
So we agree on many things, primarily as I said, that "Unfortunately claim this has become very political, making it very difficult to determine the truth."
I too have been following the discussions on the origin, which again unfortunately is also very political, so we will likely never know the truth. Arguments that SARS-CoV-2 has to have been deliberately created in a lab, including what was deemed irrefutable proof, have been countered. There was also the claim that new viruses always get less virulent over time. So why do we now have Delta if the aim was to create a biological weapon? Also, if you are going to make a biological weapon, which by its very nature will become uncontrollable, you should also be doing research into how you can protect your own from it, such as including a kill switch, having an effective treatment or vaccine. Perhaps it was a lab leak, but if so, is there some evidence of research into counter measures?
Since the back and forth on masks has come up in this thread, sharing a very interesting article from Wired about why it was so hard for so many scientists to understand/accept that COVID is indeed airborne (vs just transmissible by larger droplets), and how old beliefs can stick despite a lack of clear evidence. Science is hard. I think we need to have a little more respect for that, and be MUCH less quick to jump to conspiracy theories. The idea that hundreds or thousands of scientists who have devoted their careers to human health would all join in on a conspiracy to ignore cheap drugs that could help save people from COVID, just to make more money for pharma companies, to me is just totally misplaced. (To be clear I trust the individual scientists more than the pharmas, but having worked professionally on drug approvals I can say that it’s where these companies are at their most cautious and risk averse… as opposed to say jacking up prices opportunistically!) Neither Science nor scientists are perfect but there is simply no evidence in history that this kind of malicious malpractice has ever taken place on anything approaching the scale suggested by conspiracy theories. Anyway, an interesting article — and a great profile of some of the many scientists who DO risk their careers to ask the tough, unpopular questions… google.com/amp/s/www.wired....
That Wired article on the history of 5 vs 100 micron and aerosol vs droplet spread of pathogens was fascinating. Thanks! This pandemic is teaching us so much more about how disaeases spread and how our immune systems work - or often don't work in our case.
Totally agree. The “aha” moment for me was the bit about aerosol transmission sounding too much like the old “miasma” theory of disease spreading through “bad air.” You can certainly understand scientists not wanting to fall back into disproved beliefs… but with what was understood back in the day “bad air” wasn’t a terrible description of the factors at play.
I guess I was just lucky in terms of the mask debate — I got a head start wearing a mask often in 2019 after my diagnosis, certainly any time I was traveling or in a crowd. And yeah I got some weird looks but despite neutropenia, I managed to avoid any respiratory illnesses. The idea that masks cause health problems is, to me, just nuts — and to be honest to hear someone questioning them is a huge red flag for me. I’ll be wearing mine regularly for the foreseeable future.
Ironically, given concerns about masks and freedom, mask wearing has actually given me freedom and with good reason, I personally feel safer when people around me are also wearing masks. I spent one Christmas/New Year period (Summer in Australia) in hospital with febrile neutropenia because I didn't mask up before going grocery shopping and was unprepared for the busier store. Even with keeping my distance and hand washing, I still became seriously ill. Makes sense when you consider how far aerosols can spread and how long they can stay airborne.
I agree about the Miasma theory of disease factor.
Personal anecdote. After my CLL diagnosis, I used to attend lectures and workshops on leukaemia, travelling on public transport for a bit over an hour to do so. I was diligent about social distancing and hand washing, but didn't wear a mask. I quit attending after picking up a couple of colds from doing so. One lasted 10 weeks. This was about 8 to 12 years ago.
I've been severely neutropenic throughout my 11 years of watch and wait, with my neutropenia worsening over time. For the 18 months prior to starting treatment, I've been reliant on G-CSF injections to boost my neutrophil count which even with that boosting, averaged 1.0 throughout watch and wait. I was also on regular IgG infusions for two and a half years prior to my first treatment. So CLL has severely compromised both my innate and adaptive immunity.
Decades ago, when I was doing scientific investigations in a dark room, I personally confirmed how we all produce a fine spray of droplets when we talk, which quickly drifts to the floor. (I'd read about this and was fascinated enough to check the claim, which anyone can do by shining a bright light below their chin and seeing the fine droplets we expel.) Obviously shouting or singing forces this fine spray further - hence the super spreader events from parties (loud talking) and choral events.
Chris Dwyer (CLLCanada), who, even now has contributed more to this community than anyone else (~3,500 of our 30,000 posts), and I would regularly discuss the value of wearing masks. Chris held the position, correctly, based on what we've learned from this pandemic, that mask wearing as a preventive measure, is most important for those who are infectious. We now know that delivered viral load influences how sick we can become. Unfortunately, stopping viral spread from the sources was impractical advice until pandemic mandates on universal mask wearing were enacted! So in short, what matters most in protecting people is any degree of mask wearing by infected individuals and subsequent dilution by dispersal and air filtration.
I've never had a respiratory infection since wearing a mask in social situations, which has included two international trips which involved a couple of 36 hours stints of bus, train and air travel. The only cold I've had was second hand from my wife, who was next to me during the last international trip and didn't wear a mask. I generally wear a standard, but well fitted 3 ply surgical mask and on occasions an N95 mask.
Personally I would turn to Regeneron or REGEN-COV (casirivimab and imdevimab), the “cocktail” that probably saved President Trump’s life, ... it has an Emergency Use Authorization for us from CDC:
Post-Exposure Prophylaxis
REGEN-COV may only be used in adult and pediatric individuals (12 years of age and older weighing at least 40 kg) for post-exposure prophylaxis of COVID-19 in individuals who are at high risk for progression to severe COVID-19, including hospitalization or death, and are:
not fully vaccinated or who are not expected to mount an adequate immune response to complete SARS-CoV-2 vaccination (for example, individuals with immunocompromising conditions including those taking immunosuppressive medications) and have been exposed to an individual infected with SARS-CoV-2 consistent with close contact criteria per Centers for Disease Control and Prevention (CDC) or who are at high risk of exposure to an individual infected with SARS- CoV-2 because of the occurrence of SARS-CoV-2 infection in other individuals in the same institutional setting (for example, nursing homes, prisons).
This post-exposure prophylaxis EUA is clearly aimed at helping CLL and other vulnerable patients from developing COVID-19 and getting sick from the infection.
Then we need to fight for what we believe in. These people want to rob my children of the opportunities I enjoyed. Hell no! I am not going to let destructive ideologues win.
Maybe it works, maybe it doesn't, but I'd be extremely wary of the papers coming from mostly authoritarian countries - Brazil is using ivermectin as propaganda in the same way Trump did with regeneron. Egypt is fabricating results. There are no legitimate journal articles on Ivermectin. Not one.
Please don’t cast doubt on Regeneron because right now, especially if someone with CLL becomes infected and acts quickly enough to be treated with it, it is one of the best options to survive an infection. I would shout this from a rooftop if it would make adifference.
It seems to me that too many people simply don't understand how science works.
It doesn't come up with 'definite answers', still less THE TRUTH.
It comes up with probable, provisional answers - the 'best guess at the time'. As time moves on, these ideas/theories/models can change, as they should.
It specifically DOES NOT work by anecdotal evidence - the "it worked for me/my neighbour/my cousin/the neighbour's dog". That's not science of any sort.
Too many people seek/want THE TRUTH, but if it exists, it's not something science is designed to uncover.
So - my advice is simple: unless you are an expert (few of us are), then - unlike some unwise politicians - try to find out what the experts advise, or at any rate most of them. It appears that at the moment, there is no convincing evidence that this drug works - the main trial claiming that it did has been discredited.
Unless and until the expert scientific opinion changes, then I am certainly not going to take anything at all which may have serious side effects, for all I know. I never take any drug without good reason.
You seem to think that if something is being studied, then that automatically implies some degree of validation.
That is NOT the case!
Scientists study all sorts of stuff to see if theories hold water or not, but carrying out a study BY DEFINITION does not assume a positive answer to a question - if it did, there would be no point in carrying out any experiments in the first place, as you would be starting from an assumed answer.
For example - Michelson and Morley famously attempted to detect the 'aether' - a medium through which light was supposed to propagate. They didn't find it, because it doesn't exist... this negative or 'null' result led to Einstein developing his theory of relativity.
If they had simply assumed that the aether existed because it was worth their time to study it, we might be in a very different place... no?
You may care to study the history of this crucially important experiment here, if you care to do so:
Luap001 - Thanks for your insight! Given your willingness to actually dig out facts (as opposed to repeating political mantras), I thought you might enjoy this video by Dr. John Campbell in Great Britain. youtube.com/watch?v=ufy2Awe...
Noting the number of people condemning therapeutics, especially ivermectin, and talking about the Oxford Trial of therapeutics, I see that they stopped work on ivermectin. They claim they can't obtain the drug, so they paused that arm of the test. Great Britain and Australia are the two places that can't seem to find it. Everyone I know in the U.S. who wanted it found it when they needed it, and there is a huge supply in the marketplace overseas, as well. Like a lot of other current issues, it doesn't really add up.
I enjoyed your articles, especially the one about coffee!
Dr John Campbell has a PhD in nursing with an A&E nursing and academic background, who certainly has a gift for communicating medical information. Unfortunately, he didn't have the theoretical background to appreciate that to achieve the ivermectin interaction he postulated would require in the order of 10,000 times the blood serum concentration necessary, which is not attainable in human subjects. Dr. Greg Tucker-Kellogg*, a pharmaceutical biochemist, who acknowledged his respect for Dr Campbell's YouTube presentations, was so concerned at this misinformation from Dr Campbell, that he took the time to explain in his own YouTube presentations where Dr Campbell erred. See:
You have previously been asked by my fellow admin Jackie/Jm954 "to post (your PubMed references about ivermectin) here and until then refrain from referring to this I-MASK+ protocol and Invermectin as if it were scientifically evidenced to be helpful."
Given you don't want to share your list of PubMed references with our community, you can send them to the community admins via the Blue 'Contact us' button under the Moderation Team heading on this community's About page:
* Dr Tucker-Kellogg is the Director of the Computational Biology Programme in NUS Faculty of Science, Singapore. You can see the relevance of his expertise by examining his research papers:
Neil, I don't mind sharing papers. I'll post a list of significant papers when I have some time.
In watching Professor Greg's video, I see that the new Pfizer pill with Ritonavir clears through CYP3A4, which is also fully relied on by the major BTK inhibitors. Not knowing whether it is a CYP3A4 inhibitor or just a substrate, it raises a question about competition with the BTK drugs which should be a red flag about taking them concurrently without input from a pharmacist knowledgeable in this specific area. Very possibly, the BTK inhibitor should be held during use of the Pfizer pills.
Prof Greg runs rings around Dr. Campbell regarding interpretation of the computational simulation papers. A lot of the criticism seems nit picking, but a lot seems valid. I can't explain the differences from my base of understanding (although both Campbell and Greg messed up reading the columns in the sponge metabolite binding...). Dr. Campbell should probably have gotten input from a molecular pharmacology specialist.
Prof Greg also has a lot of antagonism with the simulations in general. He keeps insisting that they should have experimental data along with the simulations. Yes, that would be nice, but it wasn't part of their reports. I don't expect Dr. Campbell to disagree with Prof Greg in the in-silico arena. I'd like to hear from at least one more knowledgeable party.
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Leukaemia Care - Patient advocate and GP training lead, Nick York, will be on Sky News from 9.15am 
Understanding the CLL micro-environment may ultimately lead us to better control of the disease. 
Covid Jab Side Effects Are 'Normal', Say UK GPs. But Here's When To Seek Help
