Thank you so much for writing this! My name is Heather and I am a patient of your husband Boaz. I wasn't quite sure what was going on with the facebook page. I found a great deal of support thru that page and was concerned when it was removed so I appreciate what you have just explained as now I have a much more clear idea of the situation. I am 38 weeks pregnant and have only been in treatment for a little while so as you know the combination of this awful disease and pregnancy has been a painful road for me but I am thankful that this forum will remain on your site and that we can still post here in order to get the much needed support I know we all need. Thankyou to you and your husband for the hard work you guys do. I hope after my baby is born I can continue on in healing and be the best mom I can :)

I think we all want the same thing, which is to express our sincere, heartfelt gratitude for the work that you and Boaz do and to support each other in every way possible as we find our way through this healing journey. I know that for me, and for many others, there were times when this condition made me feel panicked and alone, and I am ever-so-grateful to every single person who has reached out a hand and helped me along the way. I'm looking forward to being part of the community here and to everyone's continued healing.

Thank you so much Dr. M for writing that awesome letter, and helping me understand the reasoning behind it. Now that I know this I will make more efforts to communicate here on this site. Because I want more people to find this site, and find their way to healing. I was one of those patients at one time where the western doctors thought i was crazy. You were answered prayer, and have helped my Mom and I sooooooo very much. Thanks again and God bless. for all that you have done for so many of us.
-Abbie Fortney

Thank you so much for writing this. It fills my heart to see that the forum is back up and running. It is so important for us to be able to reach out to others, and I'm so appreciative for you reopening it and having this as a resource for us! Thank you!

I am so glad to see this site up again! This has been one of the toughest times in my life and not to be able to reach out to those who may have gone through similar situations to help me cope has been a real gut rencher! Dr. M, I can't thank you enough for being there to listen and provide support, this can be a lonely journey! Have to be honest completely freaked out when I saw the site was down. First thought, ok stay calm probably just an upgrade or cleaning up. Then, shear panic as I was sitting at work waiting for a patient and read your post, that it was being removed, thoughts racing through my head that you both had had enough and this was the end, my fight for health was over! This site has definitely made a world of difference, especially when family continues to pull you down and try to convince you that you are a complete whack-a-doodle for choosing the less traveled road! Thank you both for dedicating your life to helping each of us, I shudder to think where I would be today without this treatment, probably waiting in line for a liver transplant and on my way to dialysis, but now I am proud to say I'm without any form of pain meds, not because I don't need them, but because with all the knowledge I've gained from my appointments and blog posts that my organs would continue to fail if I continued. My body continues to rally and show improvements! Dr. M, I know I have shared with you, but to others new to this site or to those struggling to believe, my MD told me "Western MD's can't seem to figure you out, but whatever you are doing keep doing it, because it is working!" Yes, I have a long way to go, but I wouldn't be where I am without you, and I can gaurentee I will need a million more "it's going to be ok's," before this is all over! Can't wait to see all the changes to come! :)  Lots of love! Christina 

I have been treating with Boaz since May of this year. I cannot believe the progress I have made in those few short months. I went from not even able to stand up straight because of pain to no pain at all!!!!  I of course know it will take my body some time to cleanse and re-build but from reading Matia's dissertation and this forum I fully understand that being pain free is huge. Reading over the blog and forum over and over again briught me so much Peace. I too freaked when I saw it shut down. Matia, Boaz and all of the patients have become much more of a family to me. I need my fix of this family time daily. We are a team working through this together in  way nobody else understands in spite of their support. I too long for this forum and treatment to continue being available for others who feel there is no hope. This is your hope! This is the real deal. Love and good health to you all!!!!

Thanks - I was one of those patients that found you through this page & was convinced enough to travel from a little province in Canada to begin treatment . 

I have been treating with Boaz since February. In 6 months, I went from severe anemia and a recommendation to get a hysterectomy, to no anemia (although my iron levels are still too low) and the kind of cycles/periods I haven't had since my 20s! My eczema is almost gone. My migraines are improving. My IC pain is slowly improving, too. 
I have had IC for 17 years. I suffered completely alone for 17 years. It started days after my first child was born. My kids have never known a mom who was fully healthy. My family was supportive, but they really had no idea what I was going through. I had NO ONE who understood IC to talk to for my entire IC journey. 
I can't tell you how painful and depressing and isolating that was.
Last Christmas, I had a terrible IC flare. Worst I'd ever had. Totally ruined an important time with family. Again. it had happened so many times over the years.
I was up all night one night, right after Christmas, literally crying in pain and desperation. At 2 a.m. I went to the computer, praying for an answer. 
And I found this page. 
I spent the rest of the night doing research about ICAMA and by the time my husband got up the next morning, I told him, "We're going to California."
Best move I could have made. The journey has been rough, but now I'm not ALONE. That fact alone helped my stress level tremendously. 
I have a long way to go, but my progress motivates me. And Boaz has been so supportive, knowledgeable and reassuring. 
Thank you for the hope and treatment you provide that some of us have been looking for for many, many lonely, pain-filled years. 
 

Words don't come easily as I appreciate what you write. It is good for me to be reminded of the intent and the integrity of your mission, Drs M and B. I am blown away by the time and effort you've invested in explaining your decision regarding Facebook and the perseverence to  "walk your talk". I feel and understand your reasons and recommit to taking part in your overall mission. I am so sorry you had to re-examine the whole process, explain, and experience the hurt; I dearly hope (as "the phoenix rises from the ashes" this experience will bring new nsight and positive change. So so happy to welcome back the forum and ever humbly grateful for you as my healer and your dedication to us all....am pretty sure I would not be alive today without your guidance....

Edited version of the email I sent to you:
I love you!!! We love you!! And anything that hurts you is devastating and scarey to us. Just as all this is devastating and hurtful to you. We did not abandon you by any means - in fact - we can't get enough of you. You are literally our lifeline and I know it's really hard to not take the shift in the Forum personally - but believe me it's not our intention - it's just the nature of technology progression and nothing more. I thank God every day for you!! For your knowledge, compassion, dedication - you AMAZE me!!! You are truly superhuman!!! We need you to guide us, to lead us - we all need to stick together and build each other up! We need your "virtual" presence as much as we need your help day in and day out with our ever changing symptoms. From the bottom of my heart if there is anything I could ever do for you please ask.

XOXO
Claire C

Dr. M and B
I have struggled to write anything to both of you as others have been so eloquent. But actually LIvandLex really said it well when she said that technology lead us away and nothing more. There was never a shred of ill intent. Someone said "hey, lets start a facebook group" and I am sure others were thinking, hey, why not more support with a phone app option! And not thinking how much it would detract from your site, and your work, and the ability of others to find it!!  Until last week I did not understand how profoundly the FB format had done this! As an aside, I joined the Face Book group after it had already been active for several months, but there was nothing but respect, admiration, and gratitude for you and Dr. B on the Face Book group. I only agreed to be one of three moderators,  to be sure that the respectful tone was always there, and that there were not people invited into that group that were giving confusing advice because they were not in treatment with ICAMA. I see now that a seperate group is problematic on many levels, and I am deeply sorry it became such a strain on you personally and professionally.
IC hit me like a TRAIN 2 years ago, and stopped my life cold. I was in complete despair when I found your site, your work,  and this forum.  Dr. M, I never say this enough and have a hard time expressing it during a phone consultation, but I just cant thank you enough for what you have done for me and my family. Because of you I can have a normal life again some day (soon! I can feel it!) and be a mom to my kids and a wife and a friend and a sister and daughter. One day at a time I am getting my life back. Your work is invaluable and my words don't do it any justice. As you have said to me in support, I will say to you now: "KEEP GOING" :)

So grateful to you both and glad this was resolved. There is still a FB for Recipes called Naturally Delicious.. It's strictly to share our pictures of food. Treatment is not discussed. We only talk lists and foods! If you'd like that taken down please let me know :) wish I could type more but my phone goes at a snails pace! Just hope you know how much you are both loved! 

Edited email

Dear Matia, 

I want to let you know I'm not sending you this email to ask you to put the forum back on your website at all, that is entirely your decision to do with yours and Boaz's 20 years worth of work (which is amazing and so valuable) and I am grateful that it was there in the beginning of my treatment. 

I just wanted to let you know that your work, your support and your role in my health mean the world to me, and I am very grateful for all the time you selflessly give to your patients, I think you go above and beyond what any other doctor would do. 

For me the forum was what I think you wanted it to be, a safe place where I found so much helpful and reassuring information, if I was having a weird symptom 99% of the time I would see someone else had had it, and it put my mind at ease. And your blog posts have been a never ending source of valued information for me- I absolutely trust your opinion and judgement and you've change my health and life for the better in so many ways.

I can't even begin to think of what my life would be like if I hadn't found Bomamed-I'm just over 3 years in treatment and I'm recently starting to feel like I'm really getting my life back and that it WILL be possible to have comfort again, which is the biggest gift anyone can give to someone else, thank you so much! I feel so unbelievably lucky to be treating with you.

I just wanted to let you know how much I respect you and I do know how much you give up for your patients and I never take it for granted, and just wanted to say thank you again for all you have done for me, and are still doing for me.

claudine :)

Dear all, and Drs. M & B.,
 
I am coming a little late to this discussion, having just returned from holiday (the fact that I could even go is a miracle in itself!) but wanted to add my thoughts to this topic, in support of Drs. M and B, and the work that  they do here. I stress that this is my personal view - I understand that people may feel differently (especially with regard to social media). The following is an abridged and slightly edited version taken from an e-mail I sent to Matia:
" I am not on Facebook and generally try to keep the family's social networking/internet use to a minimum (e.g.,fourteen year old daughter is allowed some time on Instagram but that is it; we generally monitor these activities very heavily). My personal belief is that the constant presence of social networking sites and social media in our lives can be damaging to our health and well-being. People become severely addicted to these types of interactions, they lose their attention span, they become unable to concentrate and focus on any extended acivity (e.g., reading a book), not to mention the possibilities of online bullying and the incitation of general negative emotional states due to the constant viewing of inappropriate images (e.g., our cultural obsession with skeletal female models springs to mind). As you know, I was extremely ill and the ICAMA forum was a lifeline to me. I have been disturbed and upset by the recent cessation of activity on these forums. If that had happened when I was searching for support, then things would have become extremely difficult for me. This is especially true for people who live in different countries and are unable to meet with you face-to-face. The work that you do here was life-saving for me; for that I will always be grateful. In the depths of my very severe illness, the first thing I used to do was log on to the forums - I was bedbound, lacking human interaction during the long days and the forums were sometimes literally the only contact that I had with the outside world. They offered a way out - as you quite rightly state, a possibility that we are not 'mad' or just 'anxious or depressed' but that there really is something wrong. I am so pleased that people may once again begin posting on them. I am also really pleased that people have posted up their own explanations for why they went off the site to other activities, namely that this happened as a result of a search for techological innovation and nothing else.  I am looking forward to seeing a return of the vibrant community that these pages once represented.