What happened with that was posted today?? - MPN Voice

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What happened with that was posted today??

light profile image

Covid19 alternative treatments.

75 Replies
Mazcd profile image
MazcdAdministrator

It has been deleted.

light profile image
light in reply to Mazcd

Hi Maz, What was the reason for deleting it, if may ask?

ferncook64 profile image
ferncook64 in reply to light

Think it may be a good idea to do some serious research, there are alternatives to the vaccine....that's all I'm prepared to say.

Mostew profile image
Mostew in reply to ferncook64

Well said

mochapie profile image
mochapie in reply to light

I would love to know that too that's a bit frightening

Mostew profile image
Mostew in reply to Mazcd

Onely just seen your reasoning n for deleting post . Much as I would have liked to read it I understand your reason

Thanks

As always for your wonderful support

Carolyn

I would love to know that too. why was that deleted isn't that free speech and shouldn't we be able to know if there's medications and antibiotics as opposed to vaccines . as a person with a blood clotting disorder as well as multiple allergies I could have very well been paralyzed from a vaccine and have a right, a human right to know of alternatives I would love an explanation as to why it was deleted not just told its deleted. Scary

ferncook64 profile image
ferncook64 in reply to mochapie

There are alternative medications out there, please research thoroughly. I cannot say more.

mochapie profile image
mochapie in reply to ferncook64

what do you mean when you say you cannot say more. Is it against the rules to just speak your mind on this subject

ferncook64 profile image
ferncook64 in reply to mochapie

I feel I have to be cautious as my reply may also be deleted. Search engines are very much biased in favour of the vaccine....I will say though that the vaccine is still in the experimental stage. I too have a blood clotting disorder, ET triple negative and will not be taking the jab. I'm not going to tell people what to do, or what is right, but there are alternatives as I've said.

JediReject profile image
JediReject in reply to mochapie

Hi mochapie, , understand the questioning as to why a post be deleted (if it wasnt by the originator) but in this case I suspect it's because this is and always will be fundamentally a self help Forum for MPN discussion and topics directly linked to it. The deleted post was about a Covid topic which wasn't linked in any way as far as I understood it. I'm sure there must be a number of Covid discussion groups where alternative treatment topics are debated and as ferncook says it might be of benefit for you to seek out more information given your blood clotting situation.

Regards - Chris

Well said

mochapie profile image
mochapie in reply to JediReject

Thanks Chris I appreciate it it's a little scary to me when things get deleted though out of nowhere for no reason

mochapie profile image
mochapie in reply to mochapie

Not to mention the administrator simply saying it's been deleted with absolutely no reason whatsoever

mochapie profile image
mochapie in reply to JediReject

I have no idea how the discussion became on there in the first place but before I even got to click on it to look at whatever someone was talking about it was deleted I feel like I'm in the handmaid's tale where no one has any rights

light profile image
light in reply to JediReject

I would like to have a chance to read and to decide for myself if it is of any benefit or not for me.

Mostew profile image
Mostew in reply to JediReject

Hello Chris

Usually vaccine discussion is ‘allowed’ isn’t it ? If it’s talking about the vaccine and related topics to it specifically?

Carolyn

Otterfield profile image
Otterfield in reply to Mostew

The post was about a drug called Ivermectin, an antiparasitic which is being researched as a possible treatment for Covid, as are a number of other drugs. It is NOT being considered as a vaccine alternative. Hope that is helpful information.

in reply to Otterfield

Why not?? Look at the Oxford University pear reviewed ad published paper!

Otterfield profile image
Otterfield in reply to mochapie

There is nothing sinister about the post being deleted. I agree with JediReject that this forum should be used for all of us MPN patients to support one another. Everyone has the "right" to seek out whatever information they choose (the topic of the original post is easily found on Google) but this space needs to be used for MPN support.

light profile image
light in reply to Otterfield

And that could of be also for MPN support or not but we should have change to decide ourselves after reading it.

Minu68 profile image
Minu68 in reply to light

You can find out whatever you want on this topic elsewhere, the forum has to stick to its remit otherwise it could get confusing to find MPN stuff when you need it. I agree it wasn’t relevant to this forum as it’s a completely separate topic

in reply to Minu68

But - it was relevant.Just look at what PV people are posting in this forum. Their numbers are changing.

My question is - does anyone know why - can anyone tell me why??

Please - let me know

Chris is spot on. I read the post and commented that this was an MPN site not a covid one and covid issues/theories would be better raised on a covid specific site. We had a similar issue a few months ago that grew out of proportion and got quite unpleasant.

Chris

mochapie profile image
mochapie in reply to MFBMT2011

Uh oh. Oh well it would have been nice to click on it to read, that's all. People have a right to speak their own minds but no unpleasantness is necessary. Deleting not needed, were all adults who have our own minds and choices. Whoever posted it didn't seem harmful. Who knows

Keiks profile image
Keiks in reply to mochapie

Adults sometimes are very very naive too !!! And sometimes willing to try anything without medical scientific proof only to end up possibly hurting themselves. Deleting was absolutely justified! Covid can kill so pay attention to the real science . I know that i wouldn’t want to die trying to breathe and if the vaccine is what we have for sure then that’s what I’ll take .. especially with a compromised immune system such as HU for PV…. Don’t screw with peoples heads !

mochapie profile image
mochapie in reply to Keiks

Yes this virus can kill I'm not sure who was arguing that but it certainly wasn't me and I'm not sure when you say don't screw with people's heads whom you're speaking too but that's certainly not me buddy

mochapie profile image
mochapie in reply to Keiks

I believe the person who posted that in the first place was not trying to screw with people's heads just putting out some information that's all .not sure why the paragraphs of attack from you just came on and I'm not really sure who's not paying attention to the real science as I am vaccinated. I just believe that a person who puts on a post that these are some Alternatives has every right to put that on a post it's called free speech in America so I'm really not sure where you're coming from. Maybe you should tell the person who posted it not to screw with people's heads because you definitely are not saying that to me all I am saying is that person that posted it was well within their rights and it should not have been deleted that's pretty much it one and one equals two

If I were to post something saying that taking iron tablets is a good alternative to venesection for people with PV, would that be dangerous nonsense or free speech that everyone should be able to make up their own minds about? There are limits to what should be posted on a forum run by a medical charity.

Rastavapa profile image
Rastavapa in reply to mochapie

Free speech and different opinions get shunned here, only highly governed and personalised Google searches and info from the TV count as real news........

in reply to Keiks

I fully agree - covid can kill - but at least LOOK at the science. Have you done this?Could you please, please tell me where the paper - peer reviewed, published by Oxford University was not science - or where you disagreed with the science.

We are in grave danger when we are not prepared to support statements made.

mhos61 profile image
mhos61 in reply to

I personally had no issue with the discussion about Ivermectin. I note Oxford are ‘investigating’ it as a ‘potential’ treatment for some. I do hope it proves successful, particularly for those who can’t have the vaccine for medical reasons.

I totally agree with you that we are in very grave danger when we are not prepared to support statements made.

With that in mind, can I take this opportunity to ask you, where is the scientific peer reviewed evidence to support the claims that you made with regards to the Covid vaccines?

For those who did not get the chance to view the statements, I refer to just two. Significantly, capitals were used to presumably add impact.

Having the vaccine

A) PERMANENTLY changes your genetic makeup

B) Evidence was ‘pouring’ in of people developing lifelong disabilities

I had read with interest your topic on Ivermectin. But for me, you lost all credibility when you made the above statements.

in reply to mhos61

mhos61 - I have replied privately to you with the information you wanted.

kiwibird37 profile image
kiwibird37 in reply to Keiks

We are all adults here. I have been on this forum for a couple of years and have read about many other conditions people with MPNs encounter and how they deal with them. I’ve seen links for holistic type aids and more, vitamin d levels, bone density, and on and on. For the most part I appreciate all of the comments and insight on how someone else with PV deals with these other issues. Covid is one of those things that we all need to learn about and not be censored. I would not be so naive to think that all that I have read and know is the end all. I encourage everyone to keep learning and keep posting. I believe that each of us can choose for ourselves and should encourage one another to learn about all alternatives. For the record I’ve read about ivermectin and am not for it but I made that decision not a stranger who knows what’s good for everyone!

light profile image
light in reply to MFBMT2011

We are all part of Covid19 and also MPN's and all this is also concerning for us all.

in reply to MFBMT2011

There was nothing unpleasant. I just want to know why our numbers are changing, why is there unexpected lipid increases in the bone marrow (after the vaccine), why ....This DIRECTLY effects us, and if there are very effective (maybe even more effective) alternatives which do not do this to us - should we not know about them?

Sorry - but I really did think this was a support group and have taken the things being reported here to my doctor - to see if even he knows. It sure does seem to be a pattern.

Where you told that this was an expected side effect? Truly - I want to know!

in reply to MFBMT2011

Heck - not a covid site. No it is not - but I have seen plenty of posts as to what is happening to people in this group AFTER having their vaccines. That is my worry.

Lots are good and OK, but what about those who are not.

Questions is why not - we need info (and now we have alternatives)

Mazcd profile image
MazcdAdministrator

Hello, I am sorry that I didn't explain further why the post was deleted by the admin team. It does happen that some posts and replies to posts have to be either deleted or amended if they do not adhere to the community guidelines, and when the admin team receive reports from other members of the community for, i.e. potentially dangerous advice, which causes distress to members of the community.

The aim of the MPN Voice HU community is to provide a safe and friendly environment where users can share information and offer mutual support for those affected by MPNS.

The admin team felt that the post wasn't suitable for posting on a self help and supporting forum, and we did receive many reports about this post and therefore also had to take this into account, as many people were very distressed.

You can read the community guidelines here: healthunlocked.com/mpnvoice...

light profile image
light in reply to Mazcd

Hello Maz, Thank you for this explanation you provided. However it would be much appreciated should I had an opportunity to check out this for myself and then decide whether this is of any benefit or not for me. We are all adults and we should be given opportunity to decide what is good or not for us. Wishing you well.

ferncook64 profile image
ferncook64 in reply to light

Exactly! Especially considering that those with underlying health conditions are being recommended to have this vaccine. I think all of us as adults should have the choice of knowing if there are other medications out there that are of benefit to us. Not everyone of us wants, or are even able to have the vaccine.

The post was about an antiparasitic drug called Ivermectin. It is being researched, along with many other drugs, as a possible treatment for some Covid19 patients NOT as a vaccine alternative. A Google search would probably take you to sources of information. If we used this forum to discuss every potential Covid19 treatment, MPN information could get a bit lost.

I am already aware that Ivermectin is not a vaccine. I'm not here though to discuss every potential treatment for covid19, just to help make people aware there are alternative options that can help with the symptoms.

Sorry I misunderstood you, as the original poster implied that Ivermectin could be an alternative to the vaccine, which obviously is not the case. However I do still believe we should stick to MPN discussion rather than potential Covid19 treatments.

Thats fine....Ivermectin though is something that can possibly be considered as a treatment for covid as even the vaccine is not a cure as we know. I also don't feel that every single person needs to have the vaccine, it should be a choice and not made compulsory. As I've already said, it's still experimental and I have a blood clotting disorder and I personally don't want the risk, which I feel outweighs any benefits. Each person should have freedom of choice and not be forced to take anything they don't want. As always though, research alternative options.Kind regards, fern

light profile image
light in reply to Otterfield

Thank you, that's all I wanted. Wishing you well.

in reply to Otterfield

Otterfield - it IS an alternative to covid injections, and a very successful one, with a long, long safety history (no known long term side effects ever!) - compared to the injection, where research has not fully been done and no-one knows the long term side effects, let alone what those unexpected high lipid levels being measured in our bone marrows are doing.

The peer reviewed and published Oxford Paper states with 95% certainty if you use Ivermectin as a preventative or for early treatment then hospitalisations are reduced by 86%.

Otterfield profile image
Otterfield in reply to

Let it go now. You've said what you wanted to several times now and there's nothing to be gained by batting this back and forth.

light profile image
light in reply to

Do you know if this Ivermectin works for all/other variants and if so what are the percentages are for these variants. I am trying to compere all these percentages and effectiveness.

in reply to light

Hi light,

Comparing is difficult as one cannot compare like for like. for example the Oxford Ivermectin one is about a reduction in the numbers requiring hospitalisation but the vaccine studies do not do that (see next para)

The vaccine studies: "Approximately 96 COVID-19 vaccines are at various stages of clinical development. At present, we have the interim results of four studies published in scientific journals ..... considerations on efficacy and effectiveness are based on studies measuring prevention of mild to moderate COVID-19 infection; they were not designed to conclude on prevention of hospitalisation, severe disease, or death, or on prevention of infection and transmission potential. " (my emphasis) from the Lancet 1 Jul 2021: thelancet.com/journals/lanm...

I would suggest you look at some articles/videos here - maybe they will help. These are the folk who know a heap about it and other ideas/protocols. They were involved with the Oxford paper. covid19criticalcare.com/ They are the ones who talk about Ivermectin success with other variants.

The New Zealand Dept of Health clearly states that "data to support the longer-term safety and efficacy of COVID-19 vaccines is not yet available." hmmm - questions here for me, and then more questions ......

light profile image
light in reply to

Thank you for sharing this information with me. Wishing you well.

Keiks profile image
Keiks in reply to Mazcd

Absolutely!! Agreed!! Thanks for putting this out there for people to understand Maz!!!!!

in reply to Mazcd

Dear Admin team,I have fully read you guidelines but it states:

"People MAY be able to evidence some of their information by linking to research, reliable websites"

- could you please

1. Explain how pear reviewed, published information by Oxford University is NOT reliable?

2. How information from Pfizer is not reliable? As in the information which was only obtainable through a freedom of information request.

3. How this does not affect us all - all who have bone marrow functions at the centre of our disease? and - even on this forum it is reported that stuff is happening to our blood test results.

4. Would it not be good to have all information freely available to us so that each could make their own fully informed decisions? We could take the information to our doctors and discuss it with them. However, if we are stopped from receiving this information - then where the heck are we?

If I get thrown off - then so be it. BUT - I would love answers to my questions and I truly believed that by citing only reliable FACTS - then it was a fair discussion. I fully understand that some may not like facts (hell, I don't like the fact that I have PV) but the most interesting thing is what do we do with those facts. Anyone is free to ignore them, even including the fact that one has PV!

light profile image
light in reply to

Well said.

in reply to Mazcd

Hi there Admin - I would love answers to the questions I asked re your deletion of my post.

I understand you may have the ability to talk to doctors, and perhaps they are looking at the Oxford Paper which may mean a delay in your reply - but even so, could you please let me know when to expect an answer

I believe the OP was suggesting a possible treatment for covid as an alternative to the vaccine - treatments are not preventors - and thus falls into the "anti vax" camp. (Even though the OP had actually had the vaccine themselves ! )

Free speech is fine, discussing concerns with vaccines, or alternatives is fine provided there is substance to it (in my opinion)

The post in question made several claims about the vaccines for which there is no evidence to support. I would personally think provided something is factually correct it should remain but that wasnt the case here.

DJK12 profile image
DJK12 in reply to Paul_1971

You're quite right and we were reminded after the previous problems a few months ago to adhere to HealthUnlocked's guidelines. The controversial post here failed the fourth guideline by stating a common anti vax claim but without any reference to scientific sources etc.

I feel Maz and her colleagues moderate this wonderful forum with professionalism and great kindness. Not a task I personally would relish, but for which I am very grateful as the forum is so helpful both to newly diagnosed and also those of us who have had an MPN for along time.

Threelions profile image
Threelions in reply to DJK12

Great reply. Nothing more to say.👍

in reply to DJK12

DJK12 you state that my post may have been 'a common anti vax claim but without any reference to scientific sources'

Firstly - I am NOT anti-vax. that is an untrue comment and something I said in my post. My post had nothing to do with 'anti vax'. I am pro vax - but this is a new one, one never put into human bodies before, and it is doing unexpected things to humans. Let's take a step back and look at it???

Secondly - there are references to scientific sources - University of Oxford no less.

Please be careful what you claim. Neither of these were true.

DJK12 profile image
DJK12 in reply to

I was referring to your subsequent post referenced by mhos61 above - not the original post to do with Invermectin or Oxford University. I remember ruxolitinib, which was being seriously investigated as a potential treatment last year, being discussed here (rux was found subsequently not to be useful in treating covid).

If any of us make such claims, as your subsequent post did, they must be backed up. This is the benefit of this forum being moderated and is one of the main reasons I read it.

in reply to DJK12

replied to privately

Meatloaf9 profile image
Meatloaf9 in reply to Paul_1971

I did not see the post before it was deleted. My question is who gets to decide, who gets to be the fact checkers? Just asking.

Paul_1971 profile image
Paul_1971 in reply to Meatloaf9

Personally think the person posting should have evidence, so if you are going to say its unsafe and not been tested properly have proof , or if you say that substantial amounts of people are suffering from lifetime disabilities, have proof.

Or if you’re going to say that yoghurt is a good alternative to vaccination, have proof. MPN Voice is a charity run in association with a hospital, and I absolutely understand why that nonsense was deleted.

in reply to paradiastole

paradiastole - nonsense? You write off Oxford University (which was what I referenced) so quickly? What are your reasons for that?

paradiastole profile image
paradiastole in reply to

The same reasons others have given. You weren't just saying that Ivermectin may be a promising treatment and preventative for symptoms, you were using the common antivax tactic of introducing some real science into a jumble of other claims in order to muddy the waters.

in reply to Paul_1971

Paul_1971 - no substance? please see my post about the FACTS.

Oxford University are 95% sure that given Ivermectin as a preventative and early will reduce the chance of hospitalisation by 86% - pear reviewed and published. That cannot be denied.

that is only the start - but what wonderful news for us all!!!

People I agree to that “alternate to vaccine” post to have been deleted… covid 19 is a serious virus that has killed many… the vaccine seems to be working VERY well … unless you have scientific medical proof that there is an alternative to the vaccine that actually works do NOT post that ridiculous stuff because some people will believe!!! Free speech is one thing but putting out information that has not been tested and proved is playing with peoples lives. Settle down !!

in reply to Keiks

Keiks - there is scientific medical proof. That was what I quoted - peer reviewed, published, Oxford University findings.

You were wanting what more???

They looked at a huge number of studies. It is impressive what they did, and you can read all about the methods they used - which are very much standard within the scientific community. There conclusion is very, very clear:

they say with 95% certainty that if Ivermectin was used as a preventative treatment or early treatment of COVID cases then there would be an 85% reduction in hospitalisations. Even after hospitalisation this treatment could be used, but at that point it is less effective.

It is a FACT that that paper has been published - please do check it.

Are we not all thrilled to bits that we can reduce the chances of harm to our bodies?

Ivermectin has been around for years, has no known lasting side effects, is out of patent (and therefore, unfortunately for the drug companies - no longer profitable for them - more FACTS).

A scientific study which WHO is relying on is that if you give patients who are very, very ill with COVID enough Ivermectin to kill the (probably even if they were not ill) - then there is a high possibility they will die. Not good news for sure - but let's not get there. Sort it earlier. And now we can - we have options! What great news.

light profile image
light in reply to

Thank you for stepping up and explaining all to us and I truly agree with you and don't understand what was the reason to be deleted... This is truly good information for us all and is backed up with scientific evidence FACTS!!!

I was the originator - I have no idea why it was deleted - but

1. Pfizer know that Lipids are unexpectedly raised in the blood marrow - that is a published FACT.

I questioned why. It is important for us to know.

2. Oxford University have done a meta data analysis which says with 95% certainty that if Ivermectin is used as prevention of early treatment admissions to hospital would be reduced by 86%. That is a published FACT -

I stated that if we have an alternative and given #1 above, it would seem to be relevant to (at least) all those with PV

3. In addition (which I did not say) all Covid vaccines (to date) are not approved vaccines. They are able to be used for emergency use only and because there is nothing else proven to work.

However - look at #1 above. That has very recently been published (although the data has long been known) and now that if has been verified, peer reviewed and published - let's see what happens eh?

Joetcalr profile image
Joetcalr in reply to

Phew what a long thread. Just to add, watch Dr Pierre Kory's report to the US Senate and Dr John Campbell. Ivermectin is not licensed for humans in the UK, but if I was in a country where vaccines were scarce, I'd get myself some. I've read that it acts on the blood (obvious really), so I'd be really really cautious about taking it with a blood disorder.Apparently also, asthma inhaler drugs are also a good prophylactic...

I am done. I will post no more about this. This is it.

This was the note I was sent by admin:

-----------

Hello NZ_Max

We have deleted your post, and all the replies, 'COVID alternative treatments' as the content was causing distress to many members.

Regards, Maz

-------------------------

Personally - I, my family and my friends were distressed at the FACT of my PV diagnosis. I was the third generation to get it - my grandfather dying of strokes because of it and my aunt had hers turn to leukaemia (which she died from). It was serious and we all knew it. However, even with this distress (I am the oldest of 23 cousins - where was this going to end?) they did not delete conversations I had or wanted to have with them. Instead we looked at all the information we could find (which included doctors and 'alternatives') and I decided what path to take. Even if some disagreed, they were more than welcome and willing to continue to contribute to the conversation. I was truly thankful.

So, my plea to everyone is:

- do not knee jerk, it is not helpful to anyone

- do not say that anyone is saying things when they are not (me in particular in this case)

- look at the actual evidence of what a person is saying. Agree with it or not - but be prepared to say why and how your view is supported. If you have no support for your position, then that is fine too - just be prepared to say that. A decent discussion is grand - it possibly provides alternative options

- if you have no answers to questions, then don't make them up. It is OK not to have answers.

- finally (to admin) I did not quite catch where the 'dont' distress anyone' item was in the group guidelines. If it was not and you wish to remove me and/or my posts because of it - that is fine too. It is a group run by you, and I meant no offence - I guess I had not thought that folks would have been distressed by what to me is good news for us all and if fact many may have wanted to know about it

For those of you who missed the reference to the peer reviewed, published Oxford University paper

journals.lww.com/americanth...

My dearest wish is for that co-operation to continue across my support community - even though there may be dissenting voices.

Thanks so much, and best wishes to all.

Otterfield profile image
Otterfield in reply to

All I would like to add to this is that I don't want you to feel that anyone is "getting at" you. I believe you posted in good faith and the point of disagreement is whether this drug should be hailed as an alternative to the vaccine. You are on an MPN journey like all of us, there are occasional disagreements along the way but I'm sure we can all move forward in mutual support. Best wishes, Jennie

After reading almost all the posts on here, I’ve come to the conclusion that Maz was right in deleting it. This is the forum for people with MpNs, and from what I gather the article didn’t meet the guidelines for this particular issue. Maz, you have my support!