Monday, August 29, 2011

Beware of HealthBoards the website.

The gloves are off. I'm warning all my MS friends, and especially those in search of information regarding Gilenya / Fingolimod / FTY720.

See my most recent post for the thread I found on healthboards(dot)com and my reply I had to post here as it was not showing up on their site. I was careful yesterday not to mention the site, but no more.

I got an email today saying there had been a reply to the conversation so I excitedly went to see if my post had finally "taken". But it did not. It was as if the 30 minutes of careful, thoughtful, informative reply never even happened. The reply to the thread was from the original poster who, as you may have guessed, was shocked by the PML information this idiot had warned her of with their misinformation.

I assumed my browser had just timed out trying to post the reply, so I quickly logged in so I could provide the original poster with correct info.

Here is what I saw (click to enlarge):



Really?? My account was suspended due to asking for links or criticizing someone? I ask you, dear reader, to go judge my response (in the immediately preceding post here: http://gilenya.blogspot.com/2011/08/setting-record-straight.html) and see if you think it was unjustly critical. And furthermore, I don't think asking for links to references that back up the garbage they are trying to spew is unreasonable.

To be fair, perhaps it was an automated process that suspended my account and perhaps a live moderator might be more understanding. However, my patience with their board and the idiots who are free to post their BS has worn down to a frayed thread. I'm done with it.

READER BEWARE! This is not the only message board or "group" out there that allows members to post misinformation being passed off as some kind of "fact" that they know to be true.

At least I will tell you when something I am saying is my own stupid opinion. And if I believe something to be factual I will at least do a little research and provide you with a link to what I've found so you can use your own noggin and judge for yourself.

Now I REALLY feel that a primer about how to research info for MSers is in order. Give me a few days to compose it.

18 comments:

  1. Wow, Jeri - I am thankful your head didn't explode over all this - mine very well might have :-#

    I'll be helping you spread the word. Websites like Healthboards are exploitative and dangerous.

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  2. I just went back to that site and created a new account and posted a new comment, sans links and only stating facts, ending with "Please don't take this as criticism, I'm only stating facts".

    The post did not time out and the message I got was that my post would be reviewed by a moderator before being posted.

    That tells me right there that an actual person suspended my account last time.

    I have stayed within their guidelines this time, however, and if my new account is suspended they can kiss my lily white patient insert sheet that came with my medication.

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  3. For those reading along who do not know what PML stands for it's a terrible brain infection called Progressive multifocal leukoencephalopathy. You can see the definition of hit here:
    http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001695/

    There is another MS therapy (Tysabri) which has a protocol for tracking patients closely who are on the therapy due to an increased risk of contracting PML.

    There is no known risk to date of PML associated with Fingolimod / Gilenya / FTY720.

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  4. I did not know of this site much or have not looked at it....I do not want to try Gilenya since I do have previous Retina problems (hereditary eye problems and nothing to do with MS) but I hope it continues to work for you!

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  5. @ Kim, that's a very good reason not to try G, in my opinion. None of the MS drugs are totally safe, but if people are posting side effects they need to list the ones that actually go with that drug. Gilenya is not a lightweight drug. It's a heavy hitter that alters the immune system. Heavy weight side effects (up to and including death) are possible. Nothing to be taken lightly, that's for certain. And I'm the canary in the cage who's been on it longer than those just now starting. I'll know the long term effects before they do... I'm just hoping there won't be any to report. Wishing you the best of luck with whatever you try for your MS! This disease sucks eggs.

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  6. Brian T: I am so sorry!! I was trying to publish your comment and accidentally deleted it. Oops! Copied from my email notification here's what Brian T. had to say:

    One thing I have noticed is how people citing FTY720 side effects fail to distinguish between the Phase III high dose (1.25mg) and low dose (0.5mg). Most of the negative side effects occurred at the now-discontinued 1.25mg dose. Source: http://clinicaltrials.gov/ct2/show/results/NCT00289978

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  7. Hi geri

    I went and posted - it seems to have gone up but it's a bit hidden over on the second page at the mo'.

    cheers

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  8. Thanks Che! Until I clear my cache I can't even go see because all I get is that stupid screen saying I've been suspended. I'm in the middle of a project where I'm signed into an account in another tab so I can't clear the cookies yet. But I'll go see shortly...

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  9. ooops Jeri :)

    (you should be able to see the comments without being logged in - including her reply...)

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  10. Hi everyone,

    I tried to comment yesterday, but I'm a serious novice at responding to blogs. So here goes again. I've spent a good part of my professional life working with African university libraries on using Internet to access information, including how to evaluate what you find. One question is do you trust your source and the organization responsible for the site? I found this blog, read some posts, and decided that I could trust the source. I also go to MS World, which is run by the MS Society and which has a forum on Gilenya. There's an old cartoon from the New Yorker with the caption "No one knows your a dog on the Internet." I guess there are lots of dogs at HealthBoards. Regards, Liz

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  11. Che, it's funny how she never addresses any of the errors in her first post that you pointed out other than people are not being "forced" to be monitored for three doses.

    She even goes on to say that people were fainting from the drop in heart rate. Um, she distinctly mentioned tachycardia in her original post, increased heart rate.

    Now, reading her original post again she corrected increased and changed it to decreased. I suspect she herself was probably the moderator banning me.

    She also edited to include macular edema but left "degeneration" in there.

    I still think she is misinformed regardless of the sources she's now touting instead of saying "All of this is public knowledge if you do your homework".

    She's saying we haven't seen the latest patient info. Hello??? I believe the latest patient info is that sheet folded up and stuffed inside the box with my meds. She's an idiot.

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  12. I just went to the HealthBoard site and skimmed the entries. Conttrary to what is claimed, the most recemt FDA change to the Gilenya package insert is small amd relates to hepatic issues, no reference to PML. This is the link: http://www.fda.gov/Safety/MedWatch/SafetyInformation/ucm266123.htm

    Also, I couldn't find anything on the healthboards site about who moderates or owns the various boards. Liz

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  13. Funny I used to think that board was great and in particular the person you believe gives the wrong information. I have sat back and watched in recent times and she lies when caught out I too am one of the posters she warned of gilenya . I started today I hope it's the best informed choice I ever made

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  14. Best of luck to you Michele! I wish you much success and long periods of remission on G. It's so hard to know what to believe on the internet. For that reason I try NOT to get my info from forums (or blogs for that matter, heh). It's imperative to keep communication going with your doctor or other trained health care providers who have access to the most up-to-date and factual information.

    Before I ever joined the study I spoke at great length with the lead investigating neurologist and he had more info about the *what-ifs* than any message board full of opinionated nay-sayers ever could have given me.

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  15. OMG she is at it again I posted that all was well with the gilenya because not much on gilenya around then she wrote back check it out

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  16. The Heathboard moderators are Nazis. They suspended my account, too, for the most asinine reason. Apparently you can't post links to Amazon, fine, but then I got suspended because I used the word "Amazon" in a post, with no link. When I asked why that was wrong and if we couldn't use the word "Walmart" or any other company, they simply suspended my account and said "If you dislike it, feel free to use other sites. There is no reason to discuss Amazon". What bullshit! Of course, I could just sign up with a new username or IP address, but it would be such a waste of time. I swear, I have seen so many perfectly good discussion forums get ruined by overzealous nazi moderators. They have no idea how much damage they cause when they block people from communicating with one another about real, serious problems. What a shame. When I googled this your site came up at the top of the list, so I hope others who have been banned read this and feel better.

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  17. Awful website. I was also banned, twice! The first post I tried to post, I got banned. I am guessing because I "advertised". I posted a link to a drs website that had a ton of good info concerning my condition, in response to a user asking for help. I sent a email to the mod, said I was sorry, I didn't mean to advertise. I asked to delete that account and I opened another. Then I was banned again "still not following the ToS". I wrote another email and asked "what did I do???" I put no links, gave no names, gave no advice I just relayed my story. I asked what I did wrong. Here was their reply. Awful disservice to people looking for help with serious problems.


    "We don't keep records for you.
    The rules are very clear. It's up to you to post within them on your own.

    Administrator
    www.healthboards.com"


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  18. Yes this is an exploitive site. I suffer, and hope to regain my health, with GERD (well that is what the medical'diagnosis' is)

    Any way I digress. As I spent a day looking through all the information on GERD on the site you mention it became very clear that there was something not right. This was no free flowing information swap. there was no gradual evolution of new concepts or new ideas. This site gives me the creeps. I think every time someone has a good idea or a new lead that is worth following the folder is either closed and/or the information is mined for other uses.
    I asked about 'closed' folders:

    I am new to using forums and can not find information on Closed Threads.There seems so little information on closure. I understand that once a thread or topic is closed one can not post any more replies to that post. Some of these threads seem to be extremely popular but they are closed. Other closed threads contain questions that would be great if answered or discussed further. So why close?

    What provokes the closure of a thread and can a topic with the same or very similar question be started to continue the discussion and is there ever any published meta analysis or published statistical review of very popular threads?

    and the moderator replied:


    This is a support group forum and though one may find some answers, that is not the prime purpose.
    The members from closed threads either started New Threads, or had stopped using the site. Either way, any questions in the thread were left unanswered, and need not be addressed.

    Threads older than six months may not be reopened. Nor should members refer to other people's posts/threads on their own New Threads.

    Start your own New Thread to discuss your own health issues. Do not add your own issues onto someone else's thread. Discuss other member's issues on their own threads if their thread is open. Otherwise let it be as is.

    Those are the terms of use on this website.

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