Covid community or CLL

Is it just me or does there need to be a community dedicated to Covid support so that this community can be about CLL support?

[HopeME]

Hang in there. I think the spring of 2022 in the northern hemisphere will mark the beginning of the end of this pandemic. Covid will always be a threat to folks like us with weakened immune systems but I’m hopefully this disease will be less prevalent and less of a risk. Remember, everything has a beginning and an end. We are close. Better days ahead.

Mark

[Indolent in reply to HopeME]

I agree. The Covid virus is, as predicted, evolving to a milder form. And we have seen the emergence of effective therapeutics. It will take a few more months for all the pieces to fall into place, but it does feel like there are brighter days ahead. However, the next month or so will be challenging, so keep your guard up!

[Justasheet1]

K,

I feel that way sometimes too but sadly these days they are so intertwined.

I feel the same way about politics and CLL too but it also finds its way into the conversation and sometimes it has to be part of the solution.

Jeff

[AussieNeil Partner Administrator]

The standard HealthUnlocked approach in creating a community is to form a partnership with a charity, which is the UK CLL Support charity for this community. The charity oversees and manages the community via establishing community guidelines and ensures the community is supported by administrators, moderators and volunteers who also check that posted content is moderated in accordance with those guidelines.

Because our members either have or care for someone with CLL/SLL, this community is impacted in specific ways by this pandemic due to the significant degree of immune compromise for those with CLL/SLL. This varies with our status; watch and wait, in treatment or in remission, with treatment type also having an influence. Unfortunately blood cancer patients are at particularly high risk from COVID-19, with CLL among the blood cancers most impacted. That COVID-19 infections are more risky for more mature members of society doesn't help either. (The median age of diagnosis with CLL/SLL is about 70.)

The pandemic related issues faced by our community would not be addressed in a general COVID-19 support community, particularly when you consider that CLL/SLL is an orphan disease, though it could be if there was a charity for immunocompromised folk. I would say that COVID-19 discussion here is nearly always CLL/SLL specific, but you are welcome to report posts that you don't consider appropriate.

Early on in the pandemic, HealthUnlocked did establish a specific community to support personal well-being for those missing social interaction. However it was closed late last year, as HU didn't have the resources to manage it and felt that such support would be a better fit for a community on a more general social media platform.

Neil

[Walkingtall62 in reply to AussieNeil]

Thanks.

[HelloCLL in reply to AussieNeil]

Neil: You are the best! Thank you for all your thoughtful and supportive replies, as well as your time and dedication to this platform.

[AnneHill in reply to AussieNeil]

Despite wanting to discuss covid and how it is affecting us, there is no reason to believe that cll issues are not being addressed.Anyone posting on this site will get support and advice about cll with or without covid included. Many of us have been isolated knowing we are immunocompromised.

Anne uk

[BluMts]

I absolutely do not think that thought should be given to this forum splitting as you're wondering about. Seems to me would then end up with two weaker forums. The great thing about this forum is that it allows coverage of all the problems that arise through having CLL. It's inclusive.

We're all tired and fed up with Covid, but we're sharing and that helps me. I just can't seperate my CLL from how the threat of Covid affects me. Take care friend.

[HopeME in reply to BluMts]

I read the comment more as a reflection of the writer’s frustration with the current environment than an actual suggestion to split the forum into two pieces.

Best

Mark

[BluMts in reply to HopeME]

Thanks for your input HopeME. I can find no other understanding of the post, (which was gentle and raised an interesting point ) other than the question of whether others were, like the poster, wondering if a separate community should be set up where people from this CLL community could discuss Covid matters without this subject perhaps overwhelming the CLL forum. Seems most of us feel this would not work to our benefit. This is an interesting point that I'd never thought of before and I am very glad that KnotAgain raised it.

[annmcgowan]

Hi I understand your frustration but I agree with Neil and BlueMts they are mainly CLL/SLL related therefore need to be on this site. I don’t know what I would do without them they have guided me throughout the pandemic.

Ann

[kc1953]

The support for CLL risk is so integrally intertwined with Covid risk, I think we should allow covid discussion to be part of this forum.

[Fran57]

I feel that most of the Covid information here has been invaluable to most of us. Not every comment is relevant to everyone, but we can choose what we read and act upon, can’t we?We are so fortunate to be given an insight in to how others are dealing with, and being proactive about, all the ways in which we can all try to stay as safe and healthy as possible and support each other… after all, that’s what we’re here for, isn’t it?

Stay safe everyone,

Fran 😷

[AnneHill in reply to Fran57]

No one is excluded. Cll questions and worrys are always discussed and the support of this caring community is always there. Anne uk

[thebigdipper]

It's no surprise that people with CLL are interested in how Covid might affect them. Pre-treatment, in the middle of treatment or in remission - we're all still interested in what might hurt us if our dodgy immune systems get tested.

[sun_flower]

This forum is the light at the end of my tunnel it helps so much x

[LeoPa]

Generalized covid support would be less relevant for CLL people perhaps.

[Bikram21]

I think like any site, you get to pick and choose where you engage.

[Pinkdark2018]

They are so intertwined. This forum has empowered me to take action where it was necessary earlier than I might otherwise have done. Knowing what other people have learnt from different sources here in the UK encourages us all to challenge rather than accept what we’ve been told. After all we have heard about antivirals and 3rd primary doses in the newspapers and press briefings but how many of us were able to/or received notifications without us having to be proactive? How many of us here in the UK will be ringing 119 today as the system has failed yet again to notify us of our eligibility for antivirals? Without knowing that others in our community are going through the same things we would feel all at sea. This will end and people are still posting about CLL related issues and the communications are still happening around these issues. We can pick and choose what is relevant to us at any point in our journey. This journey, currently, is really quite uncomfortable because of Covid.

[AussieNeil Partner Administrator]

You've had some excellent replies, which highlight a major benefit of this forum - sharing experiences so that we can educate ourselves on how to navigate our respective health systems to live better and longer with CLL. Given the mortal risk to us of COVID-19 infection, I can't see the benefit of a separate COVID-19 discussion area unless you are a hermit.

Neil

[Hidden in reply to AussieNeil]

For me it’s more the frustration with where I live and there unwillingness to use treatments that work. Then there is the pushing of vaccines that no one really knows how it will affect us that have CLL. They are now doing studies to see how the vaccine affects CLL patients which is good. I appreciate all the information about actual treatments and meds for CLL. I’m just concerned the vaccines and booster after booster is doing more harm than good. No one would know that though because of all the censorship going on. And then there is the problem of people not believing there is censorship about the real affects of the vaccine.

I know Covid is real and it affects older or immune compromised. I also believe that the vaccine could be doing more harm then good. So it’s frustrating that it is pushed upon people everywhere in way of mandates and through scare tactics.

I’m definitely not a hermit and also not blindly following the “science” of a corrupt system.

I pray for people affected by this horrible sickness and the fear it has caused.

[AussieNeil Partner Administrator in reply to Hidden]

Israel is leading the world with boosters and is openly sharing the results.

With regard to the effectiveness of the vaccination program to date, just look at the peak deaths vs peak cases in the more recent waves where vaccinations have been the main factor in reducing the death rate, compared to earlier waves.

UK

worldometers.info/coronavir...

USA

worldometers.info/coronavir...

Neil

[Hidden in reply to AussieNeil]

If your belief is that our USA government isn’t corrupt then you would agree with mainstream narrative and stats about Covid and it’s vaccine.

I choose to look beyond the narrative. I choose to look at all the so called misinformation to make an informed decision. I wish others would as well.

[AussieNeil Partner Administrator in reply to Hidden]

Unless you have the relevant training and experience, it is very difficult to make an informed decision without trusting someone whom you believe has those skills That's why we have peer reviews. To accept so called COVID-19 misinformation as correct requires a belief in a world wide conspiracy. That's getting harder and a harder to keep believing in as time goes by.

[Hidden in reply to AussieNeil]

The guy that actually created mRNA has been censored. What does that tell you? Give it a listen. Or don’t.

unityprojectonline.com/news...

[AussieNeil Partner Administrator in reply to Hidden]

Dr Malone was one of many involved in mRNA research, but was not the creator of mRNA vaccination technology

healthunlocked.com/cllsuppo...

[Hidden in reply to AussieNeil]

“Dr. Robert Malone is the inventor of the nine original mRNA vaccine patents, which were originally filed in 1989 (including both the idea of mRNA vaccines and the original proof of principle experiments) and RNA transfection. Dr. Malone, has close to 100 peer-reviewed publications which have been cited over 12,000 times.”

[AussieNeil Partner Administrator in reply to Hidden]

In reality, the path to mRNA vaccines drew on the work of hundreds of researchers over more than 30 years.

nature.com/articles/d41586-...

[Hidden in reply to AussieNeil]

That’s not even the point I was making. If you won’t look at all the science then what good is this site?

[BluMts in reply to Hidden]

Hi KnotAgain, could you post the url link or say where you read that. Thanks.

[Hidden in reply to BluMts]

Its a podcast. Google won’t bring it up. The god of Censorship!!

unityprojectonline.com/news...

[AussieNeil Partner Administrator in reply to Hidden]

I've had no trouble accessing your referenced site which states at the bottom of the page,"The content on this site is not intended to be a substitute for professional medical advice, diagnosis, or treatment, and does not constitute medical or other professional advice. It is intended for informational purposes only. Do not disregard professional medical advice or delay in seeking it because of something you have read on this website."

There's a similar disclaimer on this HealthUnlocked site, so what's important to us is that CLL specialists do recommend that we get vaccinated, preferably with mRNA vaccines, as they have proven to be most effective. So who do you consider best informed about the benefits of vaccination for people with CLL, Dr Malone, or the world's CLL specialists? Can you find even one CLL specialist generally advising against vaccinations, other than live vaccinations?

[BluMts in reply to Hidden]

Thanks Hidden, just seen the claim on the podcast. Also found health site saying it was a false statement as hundreds of scientists in different countries worked on this project as AussieNeil pointed out. Apparently the man in your quote was one of them in the early days but its a tad excitable to describe him as the Inventor.

Oh well, I've wondered about these repetitive vaccines given at shorter intervals than planned. But I know it would be more dangerous for me to get Covid than to get the vaccines. I've seen long covid in action and that or the risk of dying frightens me far far more than a negative reaction to the vaccine. Also I know a few anti vaccine people and I feel more trust in the scientists supporting the use of the vaccines. By far, and I'm an unconventional person, not given to trusting authority.

[SofiaDeo in reply to BluMts]

Which is why I ask to see the data. Reputable scientists are human, and can let emotions cloud their judgement.

I am thinking of how author Michael Crichton was a Harvard trained MD who decided to become an author. I have always liked his TV shows, movies, and books since they were more "probable" and "reality/science fact based" than others (although it drove me crazy, in the TV show ER, that medical students wore long lab coats. Students wore short ones everywhere I studied/worked!) Anyway, he was a climate change denier. He simply ignored the data, and didn't really look at the arguments IMO. Some early studies postulated that the Antarctic would actually become colder, and he clamped/fixated on that (from what little I have read, anyway).

I think I would have more empathy/sympathy with people who won't Covid vaccinate/are anti-vaxxers in general, if they would stop ignoring the science. I can relate to irrational anxiety/fear, I get angry at lies (i.e., claiming Covid is a hoax, the science is bad, etc.).

[BluMts in reply to SofiaDeo]

I don't like when quotes are passed on without checking that it is a scientific truth. I really don't accept anything without checking it and double checking. Still this can be taken too far sometimes. Excessive skepticism can be tooth- gnashing frustrating. Speaking as an unscientific person.

[Jonquiljo in reply to AussieNeil]

Yes, Israel is the “get something done” country!

[very]

I need all the information I can get on all aspects of illnes that could affect my husband. I don't post a lot of comments, but I learn so much and as regards covid I have found it invaluable. This forum has been my lifeline , and for that, i very grateful.It has helped me through some dark times ,that covid has created.Thankyou.jenny uk

[Hidden]

agree

[ornstin]

I agree with others who think there definitely shouldn't be a separation, and the info. on Covid has been extremely helpful to me.

[AussieNeil Partner Administrator in reply to ornstin]

Actually. I don't think there's been less other content. If you look at the number of posts each month, noted on our Home page healthunlocked.com/cllsupport we see a significantly higher volume of posting when there are new COVID-19 issues. We've also put some effort into consolidating information on specific topics into key posts, quite a few of which we pin, rather than having new posts.

Neil

[ornstin in reply to AussieNeil]

Thank you Neil. I am going to delete the majority of my post above, as it seems, from what you say, that some of my comments were unjustified.

[AussieNeil Partner Administrator in reply to ornstin]

I keep monthly stats and at times I'm surprised to find results were different than I anticipated. Some of our posts also can have well over 100 replies, while others might just have one or two replies.

[Peggy4]

I see where you’re coming from BUT Covid is something that affects our community greatly so naturally would be a frequent topic and tend to dominate conversation at the moment. As with any forum, a lot of posts don’t apply to us personally (be it pregnancy, bereavement, anxiety, other cancers, age related etc….) There are other sites dedicated to these of course but none that would be pertinent to CLL alone. However, if this is the case and we can’t be helpful or supportive in any way, it’s easy to just scroll by. It would be a shame if we weren’t able to share information, worries etc…..and put people off posting their concerns. Just my thoughts.Peggy

[JEEA]

Dear KnotAgain. This CLL group and its Covid discussions linked me to the Birmingham Research (in which I took part) which is studying how effective the vaccines are for those of us with CLL. So far, they found as other studies have, that many of us with CLL, and particularly those of being treated, do not develop the same number of antibodies when vaccinated as those without CLL. In the UK, this has led to us being able to have 3 primary vaccinations and a 4th booster. It has also shaped my response to how much care I take.

So for me--having both discussed in this group have been invaluable. As others have mentioned, I also choose which posts I read--choosing only those which connect with me personally. --so hope that you will be able to do that.

[Smac29 in reply to JEEA]

Hi HEEA,

I’m confused on three primary vaccinations and 4th booster. Is that having 2 shots to start, then number 3 as booster which is one shot, and now we are able to get number 4 booster with one shot again?

Thanks,

Sheryl

[JEEA in reply to Smac29]

Dear Smac29.

It is confusing. Here in the UK, it was decided in the autumn to offer booster shots to everyone who had been vaccinated 6 months earlier with 2 shots. These two shots are known as a 'primary vaccination'.

At the same time, because of the research that found that many with blood cancer produced fewer or no antibodies, the decision was taken that instead of a 'booster', people with blood cancers could have a 3rd 'primary' vaccine followed by a 'booster' in 6 months. The time wait has now been reduced to 3 months since omicron.

We were all very confused --but most of us with blood cancer have now had what we call 3 'primary' shots and have had or are awaiting our boosters which we hope will produce enough antibodies against Omicron or other Covid mutations which may arise. I'll be eligible for my booster January 21st

Think I've got this right! Eleanor

[Smac29 in reply to JEEA]

Thank you!

I’ve had a total of 3 shots so far. I should be eligible by January 27 also. Definitely confusing!

Sheryl

[2016Longevity]

oh man, wouldn’t that be nice!! NOT being immunocompromised (due to CLL), so no Covid support needed!!

[Redlion]

Not just you, me too.

[wizzard166]

I think the question indicates a lack of understanding that having CLL raises unique questions in many facets of life for those who have CLL in particular, and those concerns are not all about the current treatment or diagnosis regimen. If someone on in our group for example found out about treatment availability for monoclonal infusions, and that saved one of our members lives, was the location of the monoclonal infusion center an inappropriate topic for our members. I'd say one life saved made it a fabulous topic, even if none other benefited from it.

My suggestion would be to skip over all topics that relate to Covid, and you will feel a lot better. I've never seen a daily email without at least a few if not majority posts about CLL treatment and stages and symptoms, so you'd still have plenty to read and enjoy.

[kathymac5252]

If it does not pertain or seem relevant.....scroll on by

[Imalpn]

I agree