Home > Uncategorized > CCFA: Removal from Community

CCFA: Removal from Community

Well it finally happened, today I recieved my “removal from community” email from the CCFA (www.ccfacommunity.org) for breaking two of their Community Rules, including posting of “treatment specifics”  and making “tasteless post”.

For those interested, the email came from Jackie Spencer jspencer@ccfa.org

I just checked, and they deleted all of my posts which for the most-part were links to the same types of information I have here on this blog.

I can’t say that I’m surprised. I knew that it was nearly impossible for me to make posts that were not “treatment specific”. And I’m sure there were those that felt threatened by my suggestions that questioned or contradicted doctor recommendations.

Kind of ironic right after my last post. I thought I was making progress. And it is a shame. I think there were at least a few people that actually got the message. Read the research. And got their lives back after reading some of those “treatment specific” and “tasteless posts”.

I do view this as a setback. The CCFA site had thousands of visitors and they made up most of the traffic for this blog…so I know there was interest.

If you do happen to visit their community, and someone needs a resource, please do send them here.

There are other online communities that are better and more open. Check out www.crohnsforum.com, they do a nice job.

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Categories: Uncategorized
  1. January 24, 2012 at 4:53 pm

    This is really bad. I won’t stand for this.

  2. pat
    January 24, 2012 at 5:07 pm

    I am sorry I missed it. What did your comment(s) say?

    • January 24, 2012 at 5:42 pm

      It wasn’t a single comment. It was essentially the body of work.

  3. January 24, 2012 at 5:33 pm

    That’s bullshit. That’s all.

  4. January 24, 2012 at 5:39 pm

    Wow, that’s ridiculous. As someone with Crohn’s and a member of CCFA, I have found them completely useless, except to give me depressing news, ask for money, and try to get me to run in a marathon.

    • j
      January 25, 2012 at 1:58 pm

      I agree, I feel like they have no concept of what it means to be fighting a chronic illness. Run a marathon? Unless there’s a toilet at the end of the race I don’t see that happening.

      • February 12, 2012 at 12:14 pm

        That’s a bucket list dream for me. I’m 34 and have made a bucket list because of corhn’s. A friend of mine ran a 1/2 marathon in December in Las Vegas for Chron’s Research. He ran it in my name, his and for others that aren’t able to stand for 2-3 hours much less run. We raised $5,600 because my family and our friends were so pleased that Dan had gotten this far. His Chrons used to be as bad or worse than mine, but he finally found the right answers/treating dr’s etc. His goal was $4k, but we put him over the top! I know my friends and family have donated $ randomly too, but I may never be able to run a marathon. I believe it’s wrong to eliminate someone from a group for SHARING INFORMATION that may have helped some! I’m so sorry Chrons Dad.

      • February 12, 2012 at 1:30 pm

        I’m pretty sure that running a marathon really isn’t in the best interest of your health anyway. Hopefully following some of these guidelines will let you get your life back so you can push that bucket list out a bunch of decades.

  5. Maryb
    January 24, 2012 at 6:07 pm

    Alan, your input to my LDN question almost a year and a half ago tuned me into the SCD. And for that I am eternally grateful. I actually don’t go onto the CCFA anymore because I find it so depressing to read of drugs and side effects and surgeries when there are better and safer alternatives out there. Thank you for all that you do!!!

  6. January 24, 2012 at 6:19 pm

    you are welcome to the Crohn’s Disease Support Network – CDSN anytime – you can mention anything you want just two rules: no selling a product or linking to a product. Discussing it and letting the members do their own research is COMPLETELY welcomed! That is horrible the CCFA did that to you. They have really never been very fond of CDSN and we are 100% free with over 1580 members!

  7. Dan Warren
    January 24, 2012 at 6:29 pm

    I just sent her an email. This is completely and utterly appalling.

  8. January 24, 2012 at 6:29 pm

    I should have done my research Alan – I just realized I had to remove you from the CDSN FB community for breaking guidelines and violations 😦

    • Marsha P.
      January 25, 2012 at 5:25 pm

      Jason I don’t understand why you had to remove Alan from the CDSN FB community. Isn’t that seperate from the CCFA? It’s a shame because he is letting people know there are alternatives out there so why is everyone so defensive. CCFA wants people to donate and run there marathons and of course that money will go to more drugs and research for harsher drugs. They even stated that now doctors are being more aggressive than ever in the beginning of treatment because they say that prevents more issues down the road. I do not believe that for one second. The drugs will cover everything up so your body will not heal. Anyway it’s a shame people are so closed minded.
      Marsha P.

  9. January 24, 2012 at 6:35 pm

    I truly wish you no hard feelings .But after too many member complaints something had to be done ….I truly wish you the best Alan.

    • January 24, 2012 at 6:51 pm

      Jason, I’ve never sold a product and don’t intend to. The only thing I’m selling is access to information that is being ignored by the mainstream. I’m certainly guilty of showing real frustration about the misery that is caused by the ignorance of the experts that we all rely on.

  10. Sherri
    January 24, 2012 at 6:59 pm

    Really sorry to hear that Alan ;-( You are a really big help to our LDN/IBD group among others. I can’t believe anybody would do that to a person only trying to help people by using alternatives/Diet changes. Most being people who have already been through the surgeries and toxic medications already. Especially people who’s Drs./GI’s have pretty much made us feel like they have given up on us. There are so many with failed surgeries and failed medications or just can’t take them due to severe side effects. Just unbelievable..

  11. January 24, 2012 at 7:10 pm

    I understand – but part of the guidelines (clearly stated) is posting no links. I am not accusing YOU of selling a product …I am just saying that we don’t encourage even links to any products. We leave it up to the members to do the research on their own. I fully admit I made a complete mistake today (by not doing the proper research – and that is my error)…I respect your passion but if an exception is made for one – it is not fair to others.

    • January 24, 2012 at 8:05 pm

      Jason, you can certainly choose to run your site the way you like. It is a shame that you don’t allow links to research. I wish you the best.

  12. Paul Rosen
    January 24, 2012 at 7:26 pm

    I am very disappointed in the decision by the CCFA to delete you from their forum. I think the interests of all people who are searching for information about Crohn’s Disease and colitis are best served by an open dialogue that includes broad and divergent perspectives. As a parent who is grateful to you for advice that has led to a much healthier child, I am disappointed that your constructive perspective will not be easily accessed by other families.

  13. January 24, 2012 at 8:26 pm

    It was a group decision by the staff as we don’t want any confusion that we endorse something – when in a lot of cases we don’t. Therefore we leave it up to the members to research. Thanks for understanding – and best of luck!

  14. January 24, 2012 at 10:33 pm

    Jason, I’ve had a lot of difficulty sharing information, even WITHOUT links on your community facebook page. Even one mention of diet and many people will respond with extreme vitriol. There is absolutely a lot of repression within the IBD community regarding the use of alternative treatments.

  15. January 25, 2012 at 4:07 am

    Alan, it truly saddens me that the CCFA did this to you. 😦 Keep doing what you believe in!!!!

  16. Debra Stark
    January 25, 2012 at 7:52 am

    I’ve been following your posts with great interest. How awful that closed minds wield such power! I just don’t understand that these folks feel so threatened by another viewpoint. Why not suggest anything that might help? Can they really live in the dark ages and truly believe that what we put into mouths doesn’t affect our health and can’t heal??? My goodness. Don’t give up. Keep up the good work.

  17. January 25, 2012 at 8:21 am

    Reid B. Kimball :
    There is absolutely a lot of repression within the IBD community regarding the use of alternative treatments.

    Amen! I think it’s hard to share your passion and knowledge without providing links or, in the case of the CCFA website, giving “specific medical avice”. When the actual medical community have failed you (as it has failed many of us), we are actually extremely grateful for specific advice from people who truly care — people like Alan, who are personally affected and smart enough to dig to the bottom of the problem.

  18. Pat Miller
    January 25, 2012 at 11:17 am

    After I got blocked a few times over at the CCFA I stopped posting. How can you help people on the internet with out post links to info that can help people. Funny how only alternative treatments get blocked. I could put links to the remicade webiste all day long and not have a post altered.

  19. aly
    January 25, 2012 at 12:41 pm

    i am a little confused, as a blog owner myself, are we not allowed to post any links to medicine at all?? or is that just in connection to the CCFA? Alan you are a tremendous help to us all and a huge wealth of knowledge for the subject and its horrible for them to take that away from us, especially since they give us no help themselves on these subjects. Guys like you are the ones people like me count on for help and advice on alternative treatments. Please continue to post in your blog.

    • January 25, 2012 at 12:48 pm

      Thanks Aly, this is with the ccfa.org site, not facebook…and certainly not your own blog.

  20. j
    January 25, 2012 at 1:54 pm

    I got a warning once from the CCFA as well for violating “rule 8” which basically stated “don’t break our rules.” Could they be more vague? I’m assuming it was because I was promoting my own blog, but I also was providing a lot of feedback for people and trying to be helpful. Franky, I am not a fan of the CCFA. It pains me to criticize them, but I just don’t feel like they do a great job of understanding life with IBD. For example their IBD Idols contest really rubbed me the wrong way (and I let them know it). Being sick isn’t a competition.

  21. January 25, 2012 at 2:25 pm

    I’m so sorry to hear that Alan – you’re work has always been appreciated by Steve and I. Keep rocking man!

    Also, if you’d like to do a guest post on our site we’d love to send some more traffic back your way 🙂

    • January 25, 2012 at 3:56 pm

      Thanks Jordan. I’ve been impressed with the work you’ve been doing right from the beginning. I think a guest post would be a great idea. That is as soon as I can think of something worth reading!

  22. Marsha P.
    January 25, 2012 at 5:19 pm

    It gets me SO MAD that CCFA is actually threatened by you. Instead of letting the people make the decisions and like you say all the time DO THE RESEARCH CCFA gets defensive. Like the one blog above the women stated if there are links and discussions about Prednisone, Remicade and all the nasty drugs thats ok but as soon as someone talks about alternative then that person is blocked. All I can say Alan is you help people so much and I am SO THANKFUL I found you otherwise I would have been lost. I will continue to send people your way and follow what you do. I would love for you to do a guest post on Jordan Reasoner’s site. I am going to Email CCFA and tell them what I think. Keep up the GREAT WORK and keep in touch.

    Marsha P.

    • January 25, 2012 at 5:49 pm

      Thanks Marsha, I’m glad I’ve helped. Please do give people the link here. One thing I should note though is that I’m still trying to work with the regional CCFA to include this research in their educational progams. My guess is that this will not help that effort. I’ll have more of a sense of how much when I attend their March 18th educational event.

    • Wendy
      January 25, 2012 at 8:29 pm

      They are threatened by truth. My guess is they receive funding from big pharma. I have been warned by them to stop saying Boswellia is safe.

  23. Wendy
    January 25, 2012 at 8:18 pm

    I have pretty much given up on that forum. Keep up the work. You are making a difference.
    Wendy

    • January 25, 2012 at 8:55 pm

      You were one of the bright spots on that forum. And you were a great resource for me. I learned a lot from you. Shouldn’t that be the point of these sites? Please do keep in touch and let me know when you learn something interesting!

      • Wendy
        January 26, 2012 at 6:09 am

        Thank you, Alan. We will definitely compare notes. It amazes me how people react to alternatives. I never thought giving options and empathy could offend so many people!

  24. andrea
    January 26, 2012 at 5:28 am

    Alan sorry to hear that, what you do is fantastic and sadly a lot of people is going to lose by their stupid decision. Thank you for everything you do for IBDers!

  25. scarlet
    January 26, 2012 at 8:11 am

    alan…the first to go down any maverick path is always the one who gets crucified, hits walls & is literally and figuratively ‘taken down!’ keep doing what your doing. the beauty of today is the internet. it’s access that hard to control. we’ll all get to you here. and as my old pediatrician said, ‘if someone really cured cancer, their name would circle the globe in about 15 minutes.’ point being, we are all getting to you here. others will hear of you, despite you not being on CCFA. and when your providing helpful and necessary links and data, people will find you. you gave and continue to give hope to those of us who do not wish to toxify our children or ourselves. herbs vs. anti TNF blockers. i mean, come on. we’re talking black box warning. how can an herb be any less safe than a drug they’re giving children w/ black box warnings? people need to know their options. pharma drugs are helpful to many, but knowing everything out there and being educated is never bad. and should never be covered up. alan…you are doing a great thing. alot of what you reference is already being studied by MD’s all over the country [LDN, etc]. So there are other licensed doctors studying these ‘alternative’ treatment protocols. and w/ regards to the other site that is adament to take you off their site…the reason i love ya alan is you DO give links and references. it helps to go right to the studies/products/data that you reference, so i don’t have to go lurking all over trying to find it. those of us w/ sick kids have little time to [although we DO do it during the wee morning hours or middle of night, spending hours we should be sleeping] to spend researching things others have already found. why do that? we shouldn’t have to recreate the wheel…harness others’ information and data and you are the winner. so in effect, alan…i applaud your efforts, information and knowledge. you continue to a wealth of information. and as an aside, i think your a truly nice person, trying to help those of us who are dealing w/ this insididous disease. you have a genuine concern and are really trying to help. i find that worth it’s weight in gold. hats off to you and all your efforts. we are lucky to have someone like you in our crohns circle and in our arsenol to continue to fight the good fight!

  26. Lindsey
    January 26, 2012 at 10:31 am

    Alan I’m so sorry that you have been ‘removed’ from the ccfa community. As the others have said, it is distressing to see information on good science that could help us all being suppressed. Financial gains are worthless without good health. How much more good could be done by the ccfa and other national organisations if they all set out to review the current data on different approaches and gave us a good scientific appraisal which also allowed proper debate from all sides?

    Please keep up your efforts to raise awareness of the alternatives and the studies that back them up. While not taking an active role in the way I deal with uc my doctor finally listened and acknowledged that she was delighted I had taken control and said she was hearing similar stories from others. It is getting more difficult to keep us all in ignorance and I think many more doctors are starting to think for themselves. It is more important than ever that we start to ask for the things that science shows will help us and to demand answers and reasons when we are told we can’t have them.

    I think the massive amount of genetic research that has been done in recent years is just starting to raise awareness that health is not usually determined by individual genes, but by the way that genes are activated by diet and environment, and by the diet and environment of our mothers/grandmothers. Epigenetics is going to be difficult to push under the carpet.

    Keep up the good work and continuing good health to your daughter.

  27. John
    January 26, 2012 at 10:44 pm

    Crohnsforum.com is a way better site than the CCFA. Busier, they’re open to SCD, and even have a dedicated LDN forum.

    • January 27, 2012 at 6:51 am

      Thanks John, I’ll check it out!

  28. amy critelli
    January 27, 2012 at 6:41 am

    wow. that’s lame! The CCFA site is just one site though.. There are numerous Crohn’s forums that you can join. I will certainly send the people that want/need more resources and info to your page 🙂

  29. amy critelli
    January 27, 2012 at 6:50 am

    For all the people that think it was unfair what the CCFA site did to Alan should voice their opinion to the CCFA staff people. I am. We have a voice that should speak up when we feel something isn’t right, there is power in numbers & we can change things if enough people start to take action and refuse to be quiet when we see that something is just plain WRONG

  30. Lauren
    January 30, 2012 at 12:31 am

    Alan,

    I learned more from you than all three of my daughter’s doctors put together. I believe CCFA is in bed with the drug companies. Thank you for everything you have taught me.Please continue to educate us.

  31. June 2, 2012 at 10:16 pm

    Hi, i’m a 22 year old male, I regularly participate on HealingWell.com UC/Crohns discussion forum boards and we found your website, would like to say thank you for providing such valuable information. I am on a path of natural healing and alternative treatment as well with this disease. Ignore anyone unwilling to identify with your advice, as i’m receiving some of the same treatment at HealingWell.com.

    Here is my blog: http://www.PainIntoPurpose.blogspot.com

    Thank you again,
    T

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