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Inspiration from Meghan

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Opening A Conversation When No One Wants To Talk

 

I had been hoping that in today's post, I would have a great interview for you. It takes two to have a conversation and the other half didn't seem ready to chat.

The Crohn's and Colitis Foundation of Canada has, in my opinion, been one of the most challenging for me to lend any support to- despite my sincere ongoing efforts.

When the news came up earlier in the summer about that whole Carageenan scandal, I made an honest attempt to open up a dialogue, once again, with the Crohn's and Colitis Foundation of Canada (CCFC). This time, I was greeted with reservations as from their perspective, in the past I had been working to serve my own agenda. I am not completely sure what the perceived agenda is,  but when I attempt to engage in an open dialogue and am ignored, I can't help but feel that I am not the one working to perpetuate this so called 'agenda'. It seems as though it's being fed to me.

In lieu of an interview, here is a summary of our recent correspondence (note: I have respected the confidentiality tag on their emails and only included copy from my own).

On June 15th, I sent the following.

I hope all is well with you. It has been some time since we've been in touch. I believe our last correspondence was around schedule a meeting which for some reason or another kept being pushed back and then never happened. I am sure everyone over there is rather excited by the amazing amount of funds that were raised at last weekend's "Gutsy Walk".  I was wondering if it might be possible to schedule an interview with either yourself or ____- this could be done by phone or email if necessary though a phone or in person interview would be preferred.
I look forward to hearing from you,
Meghan
I received a response requesting more information on what I wanted to discuss and suggesting their new "Chief of Science and Education" might be the right person. I responded back with:
The interview would either be in article format -where I send a list of 5-7 questions or if available, we could do a video based article. The main area of interest is in regards to the areas that are being researched and where the funds are allocated from all the fundraisers.
They then confirmed that the  "Chief of Science and Education" would be the person for me to contact and to please send my questions along. Before I was even able to send the questions, I received an email back expressing great concern over my history of openly criticizing the work of the CCFC (you can read the criticism here and here) and wanting to ensure I was "coming to this with an open mind" and not "a predetermined agenda [that I am]  looking to validate".
This struck me as peculiar as I am pretty sure I have never skewed any facts to serve any agenda.  I'm not the one that planted a deep fried twinkie truck at a Crohn's fundraiser or put M&M meat shops with their factory farmed raised meets and soda pop as a gold member partner.
They did send over an annual report which was filled with a lot of really heart breaking stories from people who continue to suffer with IBD and spend so much of their time and energy raising funds for the CCFC.
I understood her concerns and reservations- it's her job to protect the organization.  If someone was questioning the practices of my businesses, I would want as up front information too. Then again, I try and be upfront right back too. For this reason I offered to do a phone interview and send the questions in advance for review.
One June 26th, I send the following set of questions for review and suggested times to conduct the interview:
1. How much money has been raised to date, for the Crohn's and Colitis Foundation of Canada?
2. What are the main sources of funding?
3. As it states on your website, most of the funding goes into research projects, what are some of the most exciting discoveries that have been made recently?
4. What is the CCFC's mandate in terms of the role food/nutrition + lifestyle play in the prognosis of Crohn's and Colitis?
5. Are there any studies being funded that relate to any potential nutritional connections to the diseases or specific therapeutic foods to help reduce inflammation and/or help heal?
6. What is CCFC's position on the recent research that came out a few months ago linking high intake of saturated fat from milk sources as a contributing factor for IBS and IBD?
7. Do you believe there is a conflict of interest having major sponsors whose products could aggravate the conditions for which they are funding cures for? (ie. M&M Meat Shops + Ensure)
8. Much of the literature on the CCFC website make statements such as the following: "Crohn’s disease and ulcerative colitis are chronic (lifelong) diseases. As such, you will probably be on some kind of medication for much of your life."  Do you feel this offers an accurate expectation for sufferers?
I was then informed that due to the nature of these questions, the CCFC would need to round up someone with a medical background. I then offered to remove or revise any problematic questions in favour of accelerating the booking of an interview. I received no response. Two weeks later, even after following up twice- still nothing.
My contact did send me a study as an example of what is currently being researched. I look forward to sharing this with you next week.
My goal, or agenda as they call it, is of course not to belittle or offend the CCFC as I know they offer sufferers a community which is a very valuable thing. My goal, as it has been from the start, is to help educate people who are suffering from the very same disease that I had as to how they can work to heal themselves rather than be overwhelmed by the feelings of helplessness and hopelessess that they must wait for a cure to be found outside of themselves.
When the organization, often being the first place people turn to for support when they are diagnosed, is telling people that "Crohn’s disease and ulcerative colitis are chronic (lifelong) diseases [and that sufferers] will probably be on some kind of medication for much of [their] life"- is a incredible disservice to the people who really need the most hope and the widest scope of options. If this statement has proven so false for me, there must be others out there too.
Question Of The Day: If you were me, what would your next plan of action be to open a dialogue with an organization that could potentially help alter the paradigms of a socially and professionally devastating, and potentially terminal disease that inflicts millions of people? 

10 Responses to “Opening A Conversation When No One Wants To Talk”

  1. Ashley said…
    Oh the CCFC... As you know, I have had my own challenges with the organization. I'm sad that they are viewing your past posts and opinions as an "agenda" and it's concerning that they wouldn't use this proposed meeting as an opportunity to give you more information to your questions that deserve answers. I've always felt that your story offered great value to the org, but given their belief that most people with Crohn's and Colitis will be on medication forever, maybe they don't want to be changing minds or shifting their views. Is it worth your time and energy? I think you do a great job at helping to shift people's thinking regarding Crohn's and health in general through all the work that you do. I know that my journey to health would have been very different if I had not met you. While it would be great to get answers, I think you reach many people doing what you do. Do you want to open a dialogue with people who obviously have preconceived ideas of what you do and bring to the table?
  2. Reid Kimball said…
    I love what you are doing. Keep up the great work. If you are committed to interviewing them, you need to build trust with the CCFC before they will agree to an interview. They need to see you not as a threat, but as a friend, an ally.
  3. Chelsea said…
    Hi Meghan, I was reading your article which led me to browse over the previous article about carageenan. I am fairly health-smart, but this is one ingredient that I didn't realize was so bad for you. I am intolerant to dairy, and so I usually drink/use almond and/or rice milk. I like using the store-bought stuff (instead of making my own) because of a) saving time and b) the added calcium. Is there a type of almond or rice (or other non-dairy beverage) that does -not- have carageenan that I could find at a store? thanks for your suggestions!
    • Chelsea, I did a product review on my site for non-dairy beverages. The following do not have carageenan. (Most have some type of "gum" type ingredient though) - YU organic rice beverage (shelf stable) - RICE DREAM Enriched Refrigerated Original - Silk True Almond Unsweetened Original (Refrigerated and Shelf Stable) - Silk True Almond Unsweetened Vanilla (Refrigerated and Shelf Stable) - Natur-a Organic Fortified Soy Unsweetened (shelf stable) - So Nice – “Natural” (shelf stable)
  4. Sondi said…
    Sigh. I am sad to hear that the CCFC will still not engage with you. They probably feel attacked by you and your position, and maybe a little afraid. I'm tempted to say forget about them, since they clearly don't want to be associated with you, but I truly feel like IBD patients need the information and guidance you have to give. I know that I would not be where I am in my health without you as an inspiration. Maybe continue to email them in as non-confrontational way as possible? Or suggest an in-person meeting (not for an interview or for the blog) where you can just focus on patching things up? I feel like if they met you in person, they would see that you truly want to help people.
    • Meghan Telpner said…
      Maybe you should try Sonderson- you're nicer than me :)
  5. Honestly Meghan, most people don't want to be told to get off their butts, cook from scratch, and give up the addictive convenient poisonous crap they've been eating and feed their kids. Organizations don't want to be told that all their years of research (along with all the wasted funding) was wasted whoring with the pharmaceutical companies. They know most people won't give up processed junk food and continue to do their fund raising and look all busy and important. It would take a whole bunch of humble people to admit that all it takes is changing how you eat. I think that when it comes to nutrition/healing through whole foods, blogging is the way to go. The people that truly want answers to their health problems will find them on the internet through amazing blogs like yours, others, (and I think my blog is on the right track too :) ) Eating and healing through eating is so simple. It certainly doesn't make people rich or feel important. I've yet to see any important health agency that has a head or V.P of natural foods. So my advice is to educate through blogging and through your courses. When people are ready, they will come to you.
  6. Jenny B said…
    Congrats on 5 years of being symptom free! I am so sorry to hear of the resistance that you are experiencing with CCFC, but I am so glad you are wanting to persevere. It can be hard to work with an organization, as they already have a set agenda and mandate, and the larger the organization the harder it is to make changes. I read this a while back and thought there might be some ideas you could glean from how Ben Franklin handled adversity. http://youarenotsosmart.com/2011/10/05/the-benjamin-franklin-effect/ Wishing you much success!!
  7. Kim Ludwin said…
    I am so happy to have stumbled across your blog and would love to get the word out any way I can as well. I too am becoming frustrated with western medicine and my GI doctor who is supposedly one of the "BEST" specialists in IBD in California. In 2014 and 2015 I was SO SICK. it took 18 months to get a Crohn's diagnosis- my tests showed inflammation, thickening in the small intestines and moderate to severe ulceration. "Diet plays no role" they said. They pushed steroids and biologic drugs at me and were not supportive when I said I wanted to see a naturopath nutritionist and try that route first. I researched, I read blogs and books. On January 1, 2016 I started a gluten free, dairy free, processed sugar free diet. I fed myself only organic, whole foods and nurtured my body the way God intended. Was it tough giving up alcohol, ice cream, pasta and donuts? SURE. But my health is 100% more important. The doctors continued telling me to get on the steroids. I said, I would stick with the dietary changes, (which included supplements like L-glutamine, theracurmin, probiotics, fish oil, etc.) for 4 months and then contemplate medication if the diet had no effect on my health. I learned to bake with alternative flours (coconut flour, oat flour, almond meal) and using 100% maple syrup as a sweetener. Within 3 weeks of starting the diet, I started feeling better. My symptoms disappeared. No nausea, bloating or constipation. I was working out at the gym again 3x a week. By April I was feeling 100% normal. Well...a couple of weeks ago, after only 4 months on this diet- I had a colonoscopy to check up on my disease. Results??? ZERO INFLAMMATION. NO ULCERS. COMPLETELY NORMAL BIOPSY. NO EVIDENCE OF DISEASE. I was thrilled and relieved. You would have thought my doctor would also have been relieved and happy?? NOPE. At my follow-up appointment she refused to acknowledge the fact that I had never been on pharmaceuticals and said that my disease must have "spontaneously" went into remission and that it could come back and even had the NERVE to tell me that I should begin on Pentasa, a biologic or some other "maintenance" drug to ensure I continue to feel good. She was suggesting I begin on major drugs despite there being NO evidence of inflammation or disease. All i could do was shake my head and leave. I am completely shocked and saddened that the medical community is so unwilling to have a little humility and inform their patients that there IS another way and that diet plays a HUGE roll. So do your research people!!!
    • Meghan Telpner said…
      Wow Kim! Thank you so much for sharing this inspiring story. My sense is that there are millions of us around the world and we all simply need to inspire others through sharing our stories. I think you might find this post enjoyable: http://www.meghantelpner.com/blog/can-you-cure-the-incurable/

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