Thanks for the great response to my Friday post about CFS on the Dr. Oz Show. Hopefully, our letters will do some good and convince Dr. Oz that CFS deserves its own coverage, not lumped in with other causes of fatigue.
I thought you'd all be interested to hear that Dr. Teitelbaum himself responded to my blog post and your comments! He explained his own comprehensive approach to treating CFS and his understanding that CFS is different from chronic fatigue; however, this doesn't change the fact that none of that came across in the TV segment. You can read his full comment and my response in the comments section of Friday's post. There is still no video clip of the CFS segment of Friday's show, but Dr. Teitelbaum's own website provides a recap of what was covered (along with a discount on his supplements!).
I also wanted to let you know that we're not the only ones who were frustrated by Dr. Oz's misleading coverage of CFS. There is a very active discussion forum on this topic at Phoenix Rising, an excellent source of information on all things related to ME/CFS. From the forums page, just click on Action Alerts and Advocacy, under the ME/CFS News heading. If you want to participate in the discussion forums, you can register (it's quick and free). The Dr. Oz/Dr. Teitelbaum discussion has garnered over 150 responses so far, so it's clear this is a topic of great interest to the CFS community. Apparently, there was also a lengthy discussion on Facebook in the CFIDS Association group (I missed that while I was sick)
Let's hope our voices will be heard in this matter!
I have had Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) since March 2002. Both of my sons also got ME/CFS at ages 6 and 10. Our younger son fully recovered after 10 years of mild illness. Our older son still has ME/CFS and also has Lyme disease plus two other tick infections. This blog is about how our family lives with chronic illness, with a focus on improving our conditions and enjoying our lives in spite of these challenges.
Once again Sue, thanks for your tireless (no pun intended) efforts to set the record straight on CFS, in this instance on the Dr. Oz segment. Call me cynical, but I thought Dr. Teitelbaum's response to you was pretty much just a disguised promo for his treatment. He could have said that he offers a treatment protocol and then given his website, but instead he pushed his treatment, using his little nemonic device so we can be sure to remember SHINE. (Actually, I find "Shine" to be almost as offensive as the name of his book "From Fatigued to Fantastic." Doesn't the very name of the book indicate that he is talking about chronic fatigue and not CFS?)
ReplyDeleteBut I'm really writing to thank you again for all the effort you put in (even responding to Teitelbaum's post) while you're also raising a family and trying to take care of yourself. You're an inspiration.
Wow, thanks, Toni. Your kind words really touched me and mean a lot. Thank you. I always feel good when I can do something to help educate people about CFS from the comfort of my couch, with my laptop, because I so often feel helpless and unable to do more than that.
ReplyDeleteAnd I, in turn, am inspired by you! It's so exciting that you've finished your book and are getting it published. That is an item still languishing on my never-ending to-do list.
Thanks, as always, for your encouragement!
Sue
thanks Sue for all the information you presented on Dr. Oz's show and I had read Dr. T.'s response to you with interest....mainly because the LLMD I see gives his book out to all her patients and uses it in her treatments. She does insist on alot of supplements, but also uses meds alot and other alternative treatments like NAET, Accupuncture, Homeopathy, etc. I have been trying to think back and remember if she has ever said we can all be cured, etc.? I know she told me I would always be dealing with Lyme, but I am not sure about the CFS and plan to ask her thinking on all of this when we go in Nov.
ReplyDeleteI am so glad your posts have given us all food for thought on this. You are a great advocate for the CFIDS communities and for that we all are grateful.
Thanks, Renee. I, too take many, many supplements, including some of the ones Dr. T recommends. I have no problem with that, but I certainly have not been cured!!
ReplyDeleteSue
I apologize to anyone who read my comment and is being helped by Dr. Teitelbaum's treatment. I was just giving my "knee jerk" reaction (perhaps with the emphasis on "jerk") to his response. I know that people have been helped by his treatment protocol and I take a lot of supplements myself. My reaction stems from the fact that when I first got sick in 2001, "From Fatigued to Fantastic" was the book I bought after looking over all of Amazon's offerings. I thought I'd soon be feeling, well, fantastic. Alas, it was not to be but I'm very happy for anyone who has been helped by his suggestions and protocols.
ReplyDeleteNo worries, Toni. I had the same experience with From Fatigued to Fantastic, and I know others with full-blown CFS have as well.
ReplyDeleteFrom all the research and from my own experience, I believe that immune system dysfunction is at the heart of CFS and, unfortunately, there are no magic fixes for that - for anyone with any kind of immune disorder (yet!)
I am also happy for anyone who has found some significant improvement from ANY protocol, but the sad truth is that most people with CFS are still severely disabled, despite trying all sorts of treatments, myself included.
Sue
Chronic Lyme sufferers like myself have also had issues with Dr. Oz show making seem like something hard to get and easy to treat which is anything but true.
ReplyDeleteSue - Thanks so much for following up on this: I missed Teitelbaum's response from the original post. I'm not sure what I think of it, but only because the 'cure' never cured me. If it helps other sufferers, I am more than happy for them, though.
ReplyDeleteI can't believe you waded through all the Readathon posts: that was pretty awesome, and I really appreciate it. It was difficult, but not in the way that I thought it would be - Sleep and I are still enemies these days, so staying awake wasn't the problem. The issue was that trying to form sentences or do math as my brain became foggier and foggier really pointed out to me how severe my cognitive issues can get - it's like losing half to three-quarters of your brain power, and it can happen extremely fast. I suppose I am most afraid of the cognitive symptoms of my CFIDS/FM/Etc... because it feels like I am losing who I am, and sometimes I worry that I won't come back from it.
Which is not a nice cheery thought to start of your day/week, now is it?
Sorry: I really did just come over to say that I am glad you are feeling better (every little bit is helpful there), and that I appreciate your comments and friendship.
Be AWAP!
Thanks, Never That Easy!
ReplyDeleteYou inspired me - I hope I can manage my own version of the readathon someday (i.e. with lots of sleep mixed in). I know what you mean about the cognitive dysfunction. I feel very, very fortunate that mine is usually pretty mild.
Um, AWAP? Speaking of brain fog...let's see...Always Well Always Positive? I give up!
Sue
Thank you for posting this Sue. I was furious when I saw the episode and I have written off Dr. Teitelbaum for good. I will also be e-mailing Dr. Oz and although I hear that he and Dr. Teitelbaum are friends, I'm going to ask him to do the right thing and do another show on CFS.... with the EXPERTS and not someone who is there to support his/her agenda.
ReplyDeleteI really wish I would have watched that show! I have Teitilbaums book given to me by my doctor, but I am unable to take hardly any supplements due to my MCS...and Lyme. I sent out a newsletter to 145 people with CFIDS, FM, etc. for 5 years and I never in that time heard of anyone who was cured from any protocol. Some improved, many did not. Not one was cured by Dr. T's program. It always bothers me when we are promised a cure. That is why I went to Bruce Campbell's program of learning to manage the illness and pacing, etc...taking control of my own healing process.
ReplyDeleteIt is disappointing to say the least that the segment was so short and sooooooo filled with untruths.
Again, thanks for sharing all of this with us.
Sorry, coming late to this thread. Thanks for opening up this debate. It's very interesting. We don't get much in the tv media about CFS here.
ReplyDeleteI've heard of Teitelbaum and looked at a book early on - but rejected his ideas(for myself) as I felt it had the quackery quality about it. Only my opinion.
Thanks again.