I’m wondering how censored this site is? There is so much evidence that is not acknowledged; however a lot of negative comments (generally by site associates) regarding alternative treatment is included.
I’m interested in the comparison of cases using alternative medicine compared to using costly FDA approved treatment. The number of deaths, side effects, costs, remissions, cures. Some Pros and cons comparisons would be helpful rather than biased comments stemming from paid reports supporting the FDA. Alternative treatments don’t have the financial support that FDA does so the reporting is not as easy to obtain but personal reports are unbiased with clear results given. Thanks...
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AlwaysAware
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Your post reminds me of the commercial on tv where the person asks his neighbor if he knows of a good handyman and then tells him to provide references, proof of insurance, etc. to him as well.
What information in this regard have you uncovered? You are the one most interested in this.
Apart from the lightly veiled negative criticism about censorship and negative comments provided by members who don’t agree with this concept which you decided to mention in your post, what can you share about your perspective on this?
I see you joined this forum today and this is your first post. You sound like someone I care to avoid.
There are actually other forms of censorship here for example religious matters are not to be discussed, nor can there be any mention of specific products to buy. I would certainly recommend anyone new here to read the rules that govern this forum carefully as many of them certainly don’t come naturally to me. The admins have built up the rules over the years as a tool to shape this forum in the way they want it to be, and hopefully avoid arguments etc. It mostly seems to work fairly well and the growth of the forum seems to suggest people like the format. The crucial thing specific to this post is that there is an expectation of articles and comments being evidence based. And if you require research background to comments it is inevitable that the pharma industry studies will tend to come to the fore since it is simply a fact that they are larger, more carefully designed, and cost much more money to produce, and are more carefully regulated than any clinical studies run by any other group. In general the decisions made by the FDA tend to follow the evidence and there is great care taken to examine it and audit the studies carefully. It is a myth to think that the FDA is biased in favour of the industry as a whole in my view. And very hard to support the kind of conspiracy theory you seem to be hinting at.
But that doesn’t mean that we shouldn’t talk about things like diet and supplements etc etc, understanding that many of these things simply will never be studied with the same amount of rigour as the drugs. And that even where there is some evidence to support the usefulness of certain interventions this will almost never be that they specifically help CLL patients but that they are rather generally helpful to health as a whole. A good example of that is the idea of lowering carbs which does seem to be very useful in general eg to loose weight but there js almost no evidence suggesting that it will actually slow down the growth of CLL cells.
I’d question the expression, ‘censorship’ Adrian because that suggests we are suppressing information or discussion in a way that suggests disapproval or criticism. Admin haven’t ‘built up the rules to form the way they want it to be’. What we’ve done as the online presence of the CLL Support Association is to try and create posting guidelines that prevent discussion moving away from the respectful, mutual support we all value into hurtful and divisive dissent. These are the two posting guidelines in regard to religion and alternative treatments;
‘Whilst religious well wishes are permitted, please do not proselytise or use religious text or quotations in your posts. Likewise do not post content of a political nature. Doing so is always divisive and contentious and everyone on the site must feel welcome regardless of their religious or political beliefs. Do not post links to religious or political sites. Such content may be removed at the discretion of the admin team.’
‘Please do not promote the use of alternative treatments, as opposed to complementary therapies. Alternative treatments may deter members from seeking appropriate professional medical assistance.’
We have nearly 16,000 international members with the possibility of thousands of differing and opposing views on politics, religion and alternative treatments. We are also regularly infiltrated by spammers who attempt to peddle their ‘curative wares’ on our members. I caught one yesterday. Some actually sound convincing and some of our more vulnerable or desperate members could fall into their snake oil trap. It’s why we cannot allow specific products to be endorsed or promoted on here. It’s also why we cannot allow untried, unscientific (and at times downright hazardous) treatments to be promoted on the site regardless of how many anecdotal reports support them. However, as the posting guidelines suggest, we fully support complementary therapies and treatments which ease and promote general well being. Diet is one of those issues but sadly there will always be people who insist proven treatments should be abandoned because they cannot compete with their extreme diets and lifestyles. So we strongly support ‘complementary’ but cannot allow ‘alternative’. There are online sites for this purpose and people are free to decide what approach suits them.
Evidence based treatment is the foundation on which this site is built plus we do carefully monitor discussion which could hurt, mislead or exclude others. For that I’d offer no apology because I’ve seen what happens when sites are allowed to become a no holds barred free for all.
Well I don’t want to get nit picky about it but saying talking about religion and politics is “always divisive and contentious” sounds very much like disapproval and criticism to me.
And sadly at times that viewpoint does mean that sometimes people wirh certain beliefs do not always feel entirely welcome as a direct result of that rule.
I don’t really blame the admins for this situation, however, as I do think they felt they needed to set if up this way because of what is wrong with our society as a whole in that all too often now we can’t actually have important conversations about things like the meaning of life.
Talking about such matters in a way that is respectful of differences and helps us explore questions of meaning is really important to me, and as Ive often said if anyone wants to talk about such things do please feel feee to direct message me and we can share such conversations elsewhere.
To me and many others there are crucial philosophical questions that come up when you are diagnosed and our personal philosophy of life is often hugely challenged. So for me at least discussing those challenges both wirh people who share my values and those who don’t has been very helpful over the years. One of my favourite ever conversations wirh another cancer patient covered exactly these issues around how someone wirh a faith and someone without a faith approach the emotional challenges of being diagnosed and treated. We can’t have such conversations on the public forum.
How to make sense of our suffering is THE search of human thinking over years. If anyone wants to share your wrestling on those matters with me I am all ears on the direct message.
Each forum does have a set of rules to follow and some will be stricter than others on what matters can and can’t be discussed. Fortunately the people on this forum are very helpful and supportive and knowledgeable. So any feelings of frustration at the limits of what we can talk about is made up for by the benefits we gain.
Adrian, if you had to manage the conflicting objections when religion and politics are raised on here you’d understand why they are ‘divisive and contentious’ subjects. There’s days when moderating this content is like being forcibly pulled in several different directions and there’s strength of amazingly strong opinion on both sides. Frankly, the debate would sometimes just disintegrate into irretrievable dissent and hurt if there was free rein to discuss these issues so if people wish to explore them with like minded members, we encourage that. But not on the public site. You’ve no idea how time consuming this can be for Admin 🤨
I do get it. But I do also think it’s a sign of a sick society that we can’t talk about such things graciously. I remember wirh fondness my school “fleur de Lys” debating society. It might not supprise those that know me well that i was a frequent proposer and opposer of motions. We learnt to think critically and understand differnt perspectives. Last year a group of us (class of 1989!) went round the school. It was amazing how little had changed. But one thing that has sadly passed away was that debating society into what I see as the horrors of modern “cancel” society. Debating is not even always the best format as it can be too oppositional but discussions with those who have different views which have a goal of enhancing understanding and learning things from each other can be really helpful if you find the right person to have them with. But I respect the wishes of the admin to not play wirh that particular fire and carry on such conversations elsewhere online, including in the direct messages on here sometimes.
Dear Always Aware: You only joined this forum today, the date of your initial post that implies that this forum unfairly censors comments about alternative treatments.
While it is the case that everyone with an interest in CLL is welcome on this site, it is useful to know that by and large the orientation of members is towards understanding the available treatment options that have been rigorously tested and found to 'work.' By 'work' this generally means the accumulation of a body of evidence from an unbiased source collected in a responsible way by investigators who do not have a financial interest accruing from the results they are reporting. (This is the primary reason why advertising is prohibited within posts.)
This is not Facebook. Anecdotes are not accepted as evidence but rather serve as pointers towards something that is worthy of further investigation but not yet worthy of consideration as a treatment. The phrase often used to describe treatments promoted here is 'evidence sourced.' Proof of efficacy is celebrated and the source of the 'proof' is considered to be a vital indicator of the value of the information.
It will probably help if you could share with HU/CLL members some data that you have unearthed about one or more of the alternative treatments that you have in mind. A good place to start would be the facts you have mentioned, number of deaths, side effects, costs, remissions, cures.
Welcome to this site. You'll find it an open, unbiased platform ready to engage in conversation about CLL, share information gleaned from sites promulgating 'gold standard' information, and updates from individuals sharing about their personal journey with this disease.
Over the past three years of daily monitoring the information shared here I have seen cautions about the dangers of, for example taking supplements which "boost immunity." But these cautions are entirely warranted since very many supplements do direct harm to the system for CLL people. This is of course counterintuitive. Fact is, however, that what most supplements do is turbocharge the bad B-cell clones and thereby worsen the circumstances for the person with CLL. I've seen many posts here which draw attention to the unfortunate likely outcome resulting from the very supplements which may prove beneficial for a person without CLL ... but for someone with the disease, the supplement as an alternative treatment is downright dangerous.
It is great that you are bringing up the topic of alternative treatments. They are immensely popular but sadly much under-researched. If you have a strong information about any of them, popular or not, many of us would love to dig deeper to see whether they could have a special place in the regular treatment of people with blood cancers.
In order to ensure a safe and welcoming community for everyone in the world who joins us we have posting guidelines that I recommend you read here: cllsupport.org.uk/informati...
I'll draw your attention specifically to number 13: "Please do not promote the use of alternative treatments, as opposed to complementary therapies. Alternative treatments may deter members from seeking appropriate professional medical assistance."
I can tell you that every single post and response is read by the team of volunteers that keep this group aligned with the guidelines and focussed on evidence and facts as best as we can. This is not 'biased comments', indeed we ask for references to be posted so that others can review the evidence for themselves.
We accept personal reports but no not allow 'advertising' or marketing of any description. I would dispute that personal reports are always 'unbiased with clear results given' as they can be used as a vehicle to promote alternative and unproven so called treatments.
Your profile makes no mention of CLL but you are welcome in this community if you have a connection with CLL and we hope you find answers and support.
Since I joined in 2015. A few people have joined and within 24 hours had a go at everyone and left after not being able to promote approaches which are alternative and chargeable. I have come to think of them as seagulls. You'll get to learn this is an incredibly supportive group, we don't all agree but that's never stopped us making a positive difference to each other's lives. Wishing you the best finding what you need to make the best decisions for your CLL.
As one who followed and incorporated for over 40 years alternative medicine and cancer free diets that ended in disappointment...I really appreciate this sight. The information and guidance given for so many good and reliable hospitals, doctors, scientific double blind studies (Imbruvica and Venetoclax to name a few) for CLL have been just remarkable.
I agree whole heartily, if an alternate treatment was out there, I probably tried it. Loads of disappointment. There is not a silver bullet alternate treatment.
Hallo AlwaysAware,
You make a good point. The site focuses on mainstream modern medicine. There is a lot of advice and discussion about diet, exercise and supplements. If you ask, you will get a lot of suggestions and responses.
There are, for simplicity, two types of healing based on two views of human beings.
First, human beings are made of matter and their functioning can be explained in terms of chemical and physical reactions. Modern medicine fits this view, when the body malfunctions chemicals are given in the form of tablets. Is this healing? Not really, but it gets rid of the symptoms and prolongs life, usually.
Second, human beings are given life by the spirit that flows through us. Healing is achieved by aligning ourselves completely with the spirit. Illnesses are part of our karma, and apart from natural therapies, should be allowed to follow their own course, and hopefully cured by the body's own resources and defences.
I tend to favour the second. But none of my yoga, meditation or the intervention of a sincere homeopath stopped the inexorable development of my CLL. My mother died of CLL; my CLL was genetic or if you like from a past life, karma. I could have accepted my karma and died. As there was no sign of a miracle arriving in time, I figured, with my multipurpose reasoning, that if God is everywhere and in everything, then he is also in modern medicine. Anyway, three years later I'm still here and enjoying life and my family.
I still meditate, have a sensible diet, take supplements (many recommended by my CLL specialist who tests for various vitamin and other deficiencies) and exercise.
My questions are, Do you have CLL? What do you want to know" and I'm curious, of what are you always aware? God, Conspiracy theories?
Hi, welcome to this forum. This is an international group almost 16,000 ma
members now, and every one either has CLL or is a support person for a loved one with CLL. Over the years many many therapies have been discussed. As an international group the FDA actually has nothing to do with what is discussed. There is a real danger though to encourage a treatment which is untested and unproven. It could be fatal to someone of us who is at a critical juncture in the disease. This is why the thrust of the site focuses on proven methods. I for one do not want to experiment with my life, risking it on something not tested or established as effective...
Are "paid reports supporting the FDA" code for clinical trials which are governed by scientific standards and "personal unbiased reports" code for anecdotal stories? If so, and if you are suggesting that we put anecdotal stories on the same footing with science based studies, then I think that you are correct in saying this site does not encourage or support such comparisons.
Of course, I cant speak for the founders of the site who provide the site to us for free nor the unpaid volunteers who ,moderate the site. I am just a member. But the reason I am a member of this site is because it is science based.
And science based to me does not mean there is no place for a discussion of natural remedies. Many medicines we use derive from natural sources and many foods we choose eat can have cancer preventative qualities, such as broccoli, or help cause cancer such as certain processed foods.
I think what is frowned upon here, and can elicit what you call negative comments, are people who promote unproven alternative therapies. There are many vulnerable people on here who might choose such treatments over proven treatments and worsen their cancer.
There are plenty of alternative medicine sites you can go to and have the discussions you describe. Most will try to sell you something.
The fact no one affiliated with this site tries to sell us anything tells me a lot. I am grateful to have such a forum where we can exchange all sorts of information to help us in our path with cll.
I hope if you have cll you will stick around and benefit from the site. I also trust you can see how your introductory post might invite negative comments. Its a free site run by volunteers and your first post out of the gate is to tell them how to run their site?
1. Negative is not necessarily bad, a point of view that is opposing is called an argument.
2. Arguments are the requirement of resolve.
3. A judgement stated is the reflection of the perspective narrator, whereas data stated is information offered for observation to make judgements.
4. Perspectives can change and judgements can be moved, but to do so is better with order rather than chaos.
5. A fact will have greater value when presented as argument measure if the fact merit is presented also.
6. The first question of value to ask when presenting an argument is, "Will the argument produce the objective?".
7. The second question of value to ask when presenting an argument is, "If the argument does not produce the objective, what will the argument produce?".
8. In order for rules of application to be received with acceptance, those rules must be applied equally and reciprocal to the governing authority.
9. a - What are the rules
b - Who is the governing authority
c - Who is being governed
10. Can two walk together, except they be agreed?
More important than getting what we measure, "We Get, what we measure".
Join us while we continue this measure. In the end we intend to win,
To add a bit more on this, AlwaysAware, many of us on this site may react to protect it and defend the volunteers who manage it because we have gotten so much benefit from it. Not just about "mainstream treatments", but emotional support and assurance from people who understand us (even the volunteers and admins have CLL).
One other idea which I thought in regard to the debate over "mainstream" vs "alternative" therapy, or perhaps chemical medications vs natural. Lots of us started out making drastic changes to adopt natural sources of nutrition, organic, etc. These changes have the power to make us healthier, exercise gives us energy and a sense of well being. But they do not stop the progression of CLL. I find intriguing the development of treatments which work with our own immune system and give it the tools needed to actually stop CLL from progressing. The monoclonal antibody drugs (like Obinituzimab) are like fabricated antibodies to give our immune system what it lacks to be able to eliminate CLL cells. Also CAR-T cell therapy arms our own T-Cells to eliminate CLL. It is true these approaches have risks and side effects, maybe because they are still new. But even now many on this site are using these therapies, and they are working. I like this approach, arm our own immune system to do the job!
Just to add, we all have the option of private messaging if something particularly interests us or creating private groups so we can speak to like minded people as some have done
I have been grateful that this site is researched based...I have family that tells my CLL husband to fast, take supplements, take grape seed oil, take green tea etc.....we say thank you for your concern, but this group of people have helped us navigate our journey in a safe and responsible way. If diet or supplements would cure this, everyone here would be on it. Not to say ,staying as healthy as smart as possible is not a good thing!
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Anyone had these drugs? Comments please. 
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