Home > Uncategorized > Working with the CCFA

Working with the CCFA

For a longtime I’ve had real issues with the CCFA. They are supposed to help those with IBD through patient & doctor education and funding of research for better treatment. Yet they continue to ignore the mounting research that explains why diet is central to autoimmune disease, and they denied funding for LDN. Sometimes I wonder what their motivation really is.

But I’ve decided to take the high road. I have to assume that they have good intentions, and that the real problem is ignorance.

Yesterday I met with the woman in charge of educational programs for the NE chapter of the CCFA. My goal was to see if I can influence the patient and doctor education progams they run. Finally there is good science that explains what is going on with autoimmune disease…and all of it supports what we’ve been told for years starting with the SCDiet. So I brought it with me. Most of it is linked to here on this blog.  She listened, and I think we’ve opened a real dialog.

I know this will be an uphill battle and although I hate waiting, I know I have to be patient and persistent. Most of their material for the programs they run come from the national organization so it won’t be easy for me to have much influence.  If there is anyone that has connections high up in the CCFA please let me know. I’d love to arrange more dialog.

In the meantime, I know they just love having me in the audience for their education events. The next one is March 18th at Babson. I promise to behave myself!

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Categories: Uncategorized
  1. Heidi
    January 21, 2012 at 5:57 pm

    Good for you for taking the time and effort to meet with the woman you mentioned from the CCFA. Thank you for trying to advocate for those of us that think diet is so important and can make a difference with this disease.

    • January 21, 2012 at 6:30 pm

      Thanks, but it’s not just a matter of opinion. I want them to understand what is really going on so that they can do what they intend to do. Find better treatments and educate patients and doctors.

  2. Patty
    January 21, 2012 at 8:23 pm

    I tried to agressively advocate for development of a SCD program within UPMCs gasterentology dept, a major teaching hospital. UPMC offered GAPS (for autism) but nothing on SCD. Despite my personal success and remission with SCD, the practice thought the majority of their patients would not be able to learn how to eat SCD. I was told to keep doing SCD, and I remain med free. I am saddened that so many are not able to even be made aware of SCD as an option for IBD. My doctor, who is brillant, had never heard of SCD, and I am the only patient he has ever had that is eating SCD!
    One major hurdle for SCD is the fact that the current standard of care does not consider SCD and until that can be altered, the medical profession is hesitant to support SCD let alone suggest it on their own. This is why your blog and others is so important, that those web literate can educate themselves, until the formal studies credit SCD for medical profession support.
    I continue to educate my doctors by forwarding all studies that show SCD success (most recent the UMass Pilot Study) and will continue to advocate. Yet another reason your blogs are so important, to get the studies supporting SCD more public.

    • January 21, 2012 at 9:17 pm

      The fact the UPMC offers GAPS at all is a step in the right direction.

  3. pat
    January 22, 2012 at 9:54 am

    The doctors I advocate SCD to… They know IBDers that go gluten free are “helped”. They also know it is not enough. We SDCers know the additional lengths we go on restrictions. The doctors also want “proof” that inflammation is reduced. Tissue sample confirmation. RUSH was trying to go extra length to look at inflamation on the samples, funding was an issue. They were to publish late last year 10 control and 10 SCD, showing flora changes with SCD… A recognized means of reducing inflamation.
    Perhaps your CCFA efforts could focus to get CCFA support to get that inflammation testing at RUSH.

    • January 22, 2012 at 10:19 am

      I have not heard a recent update on the RUSH SCD study. I thought they were having trouble finding a control group. I agree with you that gluten free is not enough, but I also think there is more that can be done than SCD. That’s why I advocate for LDN, D3, probiotics, and a range of leaky gut healers. Each of these play a role and there is good science already to back all of them. I hope that if we can get them to read it that more funding will come.

    • amy critelli
      January 22, 2012 at 9:19 pm

      It always comes down to funding. There never is enough funding for a treatment that will not result in any income being made.

      • January 22, 2012 at 9:31 pm

        I agree with you Amy. The whole situation is frustrating. But I’ve chosen to to do what I can to both learn as much as I can and to advocate for education. Now you can print out the science and bring it with you!

  4. amy critelli
    January 22, 2012 at 9:14 pm

    That’s interesting. I don’t go to the CCFA site very often. What I would like to know is why all these organizations and people in the medical field that are supposed to know more than us, why is it that 1)all they suggest is the same treatment options that we refuse to take because of the possible health risks they pose and 2) why do they refuse, deny and reject credible information that has been shown to be HELPFUL!?

    It has made me not trust doctors . I dislike them and don’t believe what they tell me. I also feel like I have to approach them by faking that I’m sort of not that informed when in reality I know more than they do, & that’s sad. Sounds crazy, but if you are talking to your doctor and you are confident about a treatment that you think will be helpful to you and they have no idea what you’re talking about, they don’t like that & in return they end up not liking me. Since this is not beneficial to me (because they will just write me off as a neurotic patient) if I act like I don’t know anything or only know a little bit about something (because they must OBVIOUSLY know more…. they’re the doctor, they MUST know more than me) I get a better response.

    These are my feelings about IBD and the health care professionals that are there to treat the disease. =There is no cure, it’s because the immune system is in overdrive. It has nothing to do with food. Managing symptoms is how to treat the disease.. Period. A business will be more profitable if the product you are selling is necesary (they need it). They will always come back to you to get more of it because they need it. It’s a guarantee that they will be back and doesn’t everyone like to be reassured that your customers wil be coming back?. (The junkie will always come back for more heroin because they’ll get sick if they don’t) The dealer wants you dependent and hooked because then they make $$$.

  5. Andrea
    January 24, 2012 at 2:25 am

    Thank you, Alan for everything you do to help. Education is key and I am glad I found great people like you that help me to help my little girl.

  6. February 14, 2012 at 11:26 pm

    Good for you. It is people like us taking control of our own health and our families health that are making a difference. Please continue to spread the word. I’m cheering for you.

  7. Joe
    March 29, 2012 at 2:21 am

    Perhaps there is a conflict of interest with the CCFA: http://crohnsandibsbreakthrough.com/blog/specific-carbohydrate-diet-testimonial/

    • March 29, 2012 at 10:52 am

      Joe, I too am still trying to figure out why the CCFA flat out ignores the research on Autoimmune disease. I’m sure it has something to do with the fact that they get most of their information from companies who’s purpose it is to develop drug therapies that make money. It is perfectly logical that they would not invest much energy in therapies that won’t make them any money.

      Separately, the whole MAP theory is very interesting…but I’m not sold. There is about 2.5 million years of history/evolutionary biology that provides a better explanation.

      • Joe
        March 29, 2012 at 1:15 pm

        It may be hard to believe that a bug could cause Crohn’s, but it was probably harder to believe that bug could cause stomach ulcers and even thrive in the stomach acid. And who would have guessed a bug causes tooth decay by producing acid?

        Best to keep an open mind.

      • March 29, 2012 at 1:25 pm

        Crohn’s and UC fit so neatly into the autoimmune spectrum – and also respond so well to the same autoimmune protocols, that it is hard to see them as just MAP infections. I am always open though!

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