This community is the best I have ever found in terms of excellent support and information sharing. What is particularly helpful is the sharing of the evidence and research base along with personal experience. I am particulalry grateful to the administrators for providing such a useful forum and their work in keeping it going. It has certainly helped my husband and I to become 'informed patient/carer'.
However could I please put in a plea that we should be very careful about how we respond regarding any particular individual's condition (eg 'those numbers look good to me'). I know that such comments are meant well and intended to provide support but they could possibly give a level of inappropriate reassurance when an individual should perhaps be seeking medical advice. Even a qualified medical practitioner would find it hard to make such comments without a full history and physical examination.
(This is not a criticism of anyone, just something I have felt for some time having read responses to posts over the years).
All the very best to all of us....
Beryl
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Fowey2009
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That’s fair comment and observation Beryl and underpins the whole foundation on which this site is built that advice given on here is never intended to replace medical advice from the individual’s practitioner.
I comment on ‘numbers’ when the person is looking for added reassurance following their consult but never assume we have the whole clinical picture.
Your post of caution is absolutely right. A number out of context, without the other numbers, the back story, any trend, medication, other medical issues, remains a number, and is largely with out meaning.
A response, however justifiable, needs to be with the caution that you imply.
Hi Peggy, It is important to respond to posts in whatever format they present, it is always someone reaching out for reassurance or guidance. Ultimately, our respective medical teams will have ultimate responsibility. How ever informed patients generally feel better, and do better.
Great point! Most of us know we need to be vigilant and constantly on top of symptoms, numbers, etc., but especially those new to CLL or afraid of doctors may use those comments to put off critical medical attention. Thanks for the advice.
I think it is implicit in most every reply that advice or feedback one gets on a forum like this is no substitute for medical advice. Many times responses are prefaced with that caution. I think particularly with new posters asking questions I see that caveat added.
But what else should be done, Beryl? If someone asks something about their numbers, should everyone not respond or tell them to ask their doctors? I see where you had asked the community a question about your husband’s lymphocytes at one time. I assume you know it’s not a community of doctors on here. Were you not looking for lay feedback?
I agree everyone should “be careful” in responding to inquiries on here, I think most are. But just saying “be careful” doesn’t give much guidance to those responding.
My sense of the way it works here is that the forum has experienced administrators and volunteers who monitor the site. They use their judgment and experience to act if they see a poster wander over that very gray and arbitrary line where a poster appears to be giving inappropriate medical advice. There is no hard rule that can be written to do that. It involves getting a sense of the person asking the question and their ability to understand or misinterpret feedback as medical advice.
It’s a good concern you have, but what else should moderators do they are not doing?
As I made clear above it is not a criticism of the moderators but just a request to all of us. Also as I mentioned above I have seen replies to comments which are not caveated.
Jeff, I don't see any criticism of administrators here. However, I think anyone who has followed the site has seen, and perhaps even reported, inappropriate advice from time to time, especially regarding supplements and vitamins.
To me, suggesting that there is some significant issue with inappropriate advice is a moderation issue. That is, if there is inappropriate advice, then it should be moderated.
I think it is a very well moderated site and inappropriate advice is fairly and promptly moderated.
Lots of folks ask about their numbers. They get lots of good lay feedback on here, from members and administrators.
So do we just not answer questions about numbers? Do we put a caveat in every post? I plead guilty to giving lay advice.
I respectfully disagree with your suggestion that we be careful about our words on those ways ex. Your numbers look good. Everyone who participates knows we are not doctors and for newbies we try to stress that. I have made that statement many times and have seen it used. We try to be informative as we can, companionate, supportive and we do suggest things. It seems too restricting to have to limit our responses. Everyone is so great on this forum and give great advice and support. I have never seen a post that said, you gave me terrible advice or blame a person for their health decisions.
Beryl - I agree 100%. The reason I left the Facebook site is that people on it were pushing all kinds of diets, alternative medicine, etc, with no checks in place and no effort from admins to control it. One does have to respond to some things in context. At my appointment my labs were x, y, and z and my specialist said not to worry begs a different response than I'm new and worried about numbers out of range, for example.
You should ..... whatever - usually supplements or vitamins are the most common ones - always concerns me. There is a difference, in my mind between I found something helpful, ask your doctor and you should just take _______. And I never mention my dose of anything if people ask, as I know that doses are very specific for each individual.
Thank you for bringing this up. It's something that I try hard to keep on my radar, but I'm sure all of us can benefit from your reminder. A reminder to all that if a post concerns you you can click on more v and report it to admins. They are very good about following through on all reports behind the scenes.
I also must respectfully disagree. I think anyone asking is just generally looking for reassurance with the clear understanding that we are not doctors.
We could always take it one step further and recommend that people simply not ask for input on numbers. Doesn't seem to make sense, does it? After all, that's why we come here. Advice, to vent, for input, to find more people like us.
I know that I will continue to try to reassure others whenever I can, and know that they understand that I don't have a medical degree.
Like many who are first diagnosed with CLL, I was terrified to learn that I had blood cancer. I had already had a FISH panel, met with a CLL Specialist, who was quite reassuring, but I was still terrified. Like many, I was caught up with all the “numbers.” When I reached out to others on this site, I was met with compassion and reassurance that was very much needed at that time. I received responses from people who had walked the walk that I was facing, and I was totally impressed by the wealth of information that is provided on this site. I was also aware that the moderators don’t have medical degrees, but the info provided to me was very reassuring and informative. When I joined this site, I knew I wasn’t alone. If I would have simply been told to “talk to my doctor,” I wouldn’t have stayed on this site. I think the moderators and others who comment do an excellent job at conveying they aren’t doctors, but through their experience and research, and the experiences of many others with CLL, they provide insight and understanding that has helped so many.
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