These last few weeks, we've all been reading and celebrating all the scientific, accurate news stories on CFS that have emerged since the news of XMRV in CFS. Well, I saw today that the battle is far from over. I heard that the Dr. Oz Show would be covering CFS today, so I tuned in, expecting to hear about XMRV on a popular, national medical TV show. Wow, was I disappointed! Even my 11-year old son (who's still home sick) could see immediately that Dr. Oz got it all wrong.
He started by announcing that if you are exhausted and sleep doesn't help, then you have CFS. He didn't mention a single one of the immune dysfunction symptoms or even exercise intolerance. He talked about anemia and thyroid problems. Then he explained how people with CFS could be cured (yes, cured!) with diet changes and supplements. The problem was that his CFS "expert" guest was Dr. Jacob Teitelbaum. I read Dr. Teitelbaum's book, From Fatigued to Fantastic, which focuses on chronic fatigue (the symptom) rather than CFS. He doesn't differentiate and claims to have a high cure rate for CFS based on his program of nutritional supplements (of course, that's because his patients have chronic fatigue, not CFS). His book doesn't address immune dysfunction at all. Even worse, Dr. Oz didn't even mention the XMRV research.
I would point you to a video of the CFS segment, but they chose to post a video of the G-spot story on their website instead! Dr. Oz has a huge impact on the general population because of his connection with Oprah. Please join me in telling him that his story about CFS was inaccurate and he needs to tell the REAL story. You can send a message to the show here.
Here's the text of my message:
"I was extremely disappointed in your very inaccurate coverage of Chronic Fatigue Syndrome on your October 23 show. I have read Jacob Teitelbaum's book and many of his articles. He is an expert on chronic fatigue, the general symptom, but not Chronic Fatigue Syndrome (CFS), the defined immune system disorder. CFS is far more than fatigue that is unresponsive to rest. You didn't even mention any of the symptoms of immune dysfunction that are common for CFS: sore throat and swollen glands, flu-like aches, and feeling feverish despite lower-than-normal temperature. In addition, the most unique, defining characteristic of CFS is an intolerance to exercise, where even mild exertion causes a sudden, severe worsening, whereas general fatigue is often improved by mild exercise.
On the show you talked about anemia and thyroid problems, two diagnoses that could exclude a diagnosis of CFS. For someone who actually has CFS, iron supplements, diet changes, and D-ribose would have only a very minor effect on the devastating symptoms, if any at all.
Finally, it is particularly disturbing that you presented such an inaccurate, non-scientific view of CFS at this time, after the momentous CFS research published two weeks ago in Science that connected CFS to a newly identified retrovirus, XMRV. See these websites for more information:
http://www.wpinstitute.org/xmrv/
www.cfids.org
I hope that you will cover CFS again on your show, to provide the real facts and try to un-do some of the damage you have done to those of us suffering from this severe and debilitating disease with your very misleading and erroneous coverage today.
Sue Jackson
CFS for 7 years
Both of my sons also have CFS (yes, it also has a genetic link which has been proven in many scientific studies)"
Tell the Dr. Oz show what CFS REALLY is!
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.
Thanks for posting this Sue. I immediately wrote a note to the show at the link you provided, politely explaining the difference between "chronic fatigue" (a condition common to many illnesses) and "chronic fatigue syndrome" and then suggesting other guests he could have on the show like Dr. Klimas.
ReplyDeleteThis is so disappointing but I'm glad you saw the segment and could start the wheels in motion of giving them immediate feedback!
Thanks for sending a note to the show, Toni! And what a great idea to suggest better guest experts - excellent suggestion. I also e-mailed the CFIDS Association's publicity group to let them know about the show.
ReplyDeleteI feel so helpless seeing such misinformation on such a popular show - hopefully, our messages will help!
Sue
I just wrote him, too. Was polite, but firm. Thanks for letting us know about this!
ReplyDeleteMan! Talk about ticked off. I just sent my letter. It may have not been as polite as yours or Toni's:
ReplyDeleteI was extremely disappointed to find that your recent show, focusing on chronic fatigue, dismissed ACTUAL CFIDS as nothing more than a case of "chronic fatigue." This is just the kind of "scientific reasoning" which has completely ignored the FACTS about the actual disease (http://cfids.org, http://www.cdc.gov/cfs/cme/wb3151/chapter1/overview.html) and belittled the millions of suffers whose lives have been forever changed.
By the way, I can only assume that the show was taped BEFORE the Science Journal article was recently published by the Whittemore Peterson Institute (October 08, 2009, http://wpinstitute.org/xmrv/xmrv_qa.html) proving what many have suspected all along, that CFIDS is indeed an infectious disease, not a figment of the patient's imagination or simply being tired.
The list of people stricken with CFIDS includes my daughter, who became ill in 2005 at the age of 12 after a brief mono-like illness and was officially diagnosed in 2006. My now 16 year old daughter was an energetic, soccer playing, horseback riding, sociable girl until this disease robbed her of her ability to participate in the activities that all other kids her age participate. (http://livingchonically.blogspot.com) I can assure you, she was NOT simply exhausted.
Dr. Oz PLEASE, if you're going to report on a disease - get it right. Please do the 1 - 4 million americans dealing with this life-altering disease a favor and openly correct this terrible mistake.
Lori Plyler
loriplyler@mac.com
Sheesh.
Whooweee! Awesome letter, Lori! I got tingles up my spine - I could feel your frustration. You go, girl!
ReplyDeleteMaybe our voices will be heard after all!
Sue
LOL, I forgot (in my anger) to add that I've already posted on my blog today, but I'll post a link back here to you tomorrow.
ReplyDeleteHave a good weekend!
I'm off to write them, right now: Thanks for letting us know, Sue!
ReplyDeleteDidn't Dr. Oz say the same kind of thing on the Oprah show a few years back? My memory of the show is that he "cured" a woman in 8 weeks on the plan in the book he was selling at the time.
ReplyDeleteThat's entirely possible, Knittah. He described Teitelbaum as "my good friend", so I imagine they've collaborated before.
ReplyDeleteUnfortunately, lots of people worship Dr. Oz because of his close relationship with Oprah.
Sue
It hasn't aired where I live yet, so I'm glad you posted.
ReplyDeleteBut I'm sorry to hear (but not at all surprised) that they got it all wrong. Sigh... They usually do in those rapid segments on complex issues!
I am so tired of Dr's who think they have it all under control. I know that the doctors who have CFS don't believe that for a minute. They struggle to understand, and provide hope and treatments but no one has said they have a cure for what we sufferers know as CFS/CFIDS.
20 years, for 20 years I have listened to people describe us as fatigued and heard friends say they get tired too, try this or that.
I hope this brings us enough attention that something gets resolved within my lifetime!
Hi Sue,
ReplyDeleteThanks for the post. I have already written the Dr. Oz show twice - once before the segment aired and once after. Sad state of affairs. Thanks to all the others who wrote to the show. There is a great blog on the Phoenix Rising site where people are venting about this. If you want to see what others have written, you might want to check that site.
Maxine
Thanks, Maxine -
ReplyDeletePhoenix Rising is one of the BEST sources of CFS information on the web - Cort does a great job with it! I'll check out the blog there later today.
And I'm so glad to hear that others are talking about the Dr. Oz show, too. Let's make some noise - we're not invisible!!
Sue
Dear Sue and All,
ReplyDeleteI appreciate your comments and concerns, but wanted to add some info I hope you find helpful and may address some of the concerns.
I understand the frustration over not having been able to offer more detail, but given a 5 minute interview in a 15 minute segment on fatigue which included a discussion of CFS simply as a subset, there is only so much that can be discussed. The entire 5 minutes could have been used to list the CDC CFS criteria--a waste of time. Instead we listed just of few key symptoms to help people identify themselves. By the time they have the symptoms noted, they also have the postexertion fatigue, lymph node swelling etc. We then focused on research and clinically proven approaches to recovery in CFS, which have helped many thousands to recover.
The spot was taped before the XMRV virus study was released. None the less, there are over a dozen similar studies of other infections positive in CFS, suggesting the key issue is the immune dysfunction, and not a single virus. We already treat many of these infections , including viral infections , as part of our treatment protocols (the "I" in SHINE if for infections), including antivirals when appropriate. To ignore all the other research on contributing factors (with potentially effective treatments) in CFS because of this one new study, would be a disservice to patients with CFS. I do not say say this to invalidate CFS (as many are doing), but rather to note that CFS is already clearly validated, this is one more piece of evidence adding to it, and while exploring it PWCs will do better using many treatments already proved to help--instead of staying disabled while researchers take their 5-10 years (optimistically) to study the XMRV virus.
I would note that our studies showing that 91% of patients improve treating with SHINE
Sleep
Hormonal support
Infection
Nutritional support
Exercise as able
included a randomized, placebo controlled study of patients who clearly met the CDC criteria for CFS and the ACR criteria for fibromyalgia, so the statement that I treat fatigue, not CFS , is incorrect.
The full study can be seen at www.vitality101.com
Being a patient advocate, I am excited about new research when appropriate, but will put it in perspective--for the patients' benefit. There are effective treatments, including antivirals, available NOW. Do you really want to wait 10 years?
In addition, the ribose (Corvalen) shown on the show has been shown to increase energy in CFS and Fibro patients (not only fatigue patients) by an average of 45-59% after 3 weeks use (5 gm 3 x day). One of these studies can also be seen on my web site.
I am working to get the info out which CFS/FMS patients need as best I can (far more technical that what a 5 minute show will allow), and am even in Indonesia this week lecturing to over 2000 physicians.
Sorry, if there were misunderstandings, but know that I am on your side--and Dr Oz is as well
Dear Dr. Teitelbaum -
ReplyDeleteThank you for taking the time to respond to my blog post about your appearance on the Dr. Oz Show.
It sounds as if your approach to treating CFS has evolved somewhat since you wrote From Fatigued to Fantastic, which seemed to focus on many forms of fatigue and ignore the unique immune dysfunction of CFS. I'm glad to hear you're now addressing infections and immune dysfunction with your patients, but none of that came across in the show.
Our concern is that the millions of people watching Dr. Oz's show who know nothing about CFS came away with the impression that it is merely about being exhausted and that it is easily treated with simple nutritional approaches. Dr. Oz put "Chronic Fatigue Syndrome" on the screen behind him in huge letters and it appeared that the whole segment was about CFS, when it was really about various causes of general fatigue.
When the general public watches a show like that, they come away with very erroneous impressions of CFS that serve to minimize the suffering of millions of people worldwide, many of whom are completely bedridden or housebound. Now that think they if they are exhausted, they have CFS, and they can easily get well with some simple approaches. Having had CFS for 7 years and having tried many, many treatments (including the currently available anti-virals), I can tell you that's not true. And I know I am one of the lucky ones, often able to function at about 50-60% of my capabilities before I got CFS. Many of my blog readers from around the world have been functioning at 20-30% or less for decades.
What people with CFS need is accurate, factual information about this debilitating illness that will help to educate both the general public and the medical community; education that will hopefully lead to research support and funding, which is what we need most.
Thank you very much for taking the time to write and for telling us about your own approach to treating CFS, which is obviously far more comprehensive than the Dr. Oz segment even hinted at.
Sincerely,
Sue Jackson
Hi everyone, I, as who knows how many desperate others, read dr T's book, followed his advice and even bought his "magic formula" whith zero results. I have now been bedridden since 2003 and find it appalling that said Doc still won't admit his shortcomings...I would like to see w/my own eyes, these mysterious people who actually recovered. I have been following forums for 10 years now, & never heard a success story of a TRUE CFS patient recovering. I truly hope the xmrv finding will prove us right, and most of all, enable us to get well. Thanks & good luck to all.
ReplyDeleteDr. T wrote: "We then focused on research and clinically proven approaches to recovery in CFS, which have helped many thousands to recover."
ReplyDeleteI have been on message boards and watching the web for 20 years. If many thousands have recovered, where are they? Please come forward! We need to hear from you!
Yes, Diana -
ReplyDeleteI have read every bit of CFS research that's been published, and I can tell you that there are no "clinically proven approached to recovery in CFS"...unfortunately. I do know that some people recover on their own, often within a year or so of becoming sick, but complete recovery of longer-term CFS is quite rare. Let's hope that changes soon!
Sue