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Adrienne Dellwo

Chronic Fatigue Syndrome, XMRV on Dr. Oz

By December 7, 2009

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A recent Dr. Oz show featured the XMRV research and possible ties to chronic fatigue syndrome (CFS or ME/CFS). It was about a 12 minute segment that had some good information, but I did find some aspects a bit troubling.

The Good Points

  • Dr. Oz clearly presents himself as a believer in ME/CFS.
  • The guests (Dr. Donnica Moore and a woman with ME/CFS) came across as credible and knowledgeable.
  • The description of symptoms, although brief, gave an accurate depiction of what ME/CFS is like.
  • Video animation of a retrovirus entering the DNA was a great way to help people understand XMRV.
  • The PR value is probably incalculable. When the woman with ME/CFS described how a doctor dismissed the very suggestion of ME/CFS and sent her to a psychiatrist, audience members gasped and shook their heads. They got it.
  • Internet searches for XMRV were off the charts the day of and day after the show, meaning more people are learning about the latest research.

The Bad Points

As a former TV news producer, I have a very critical eye when it comes to accuracy, and I understand how powerful a televised message can be. It was this side of me that raised the most red flags. The ME/CFS Guide part of me was concerned about how a couple of points could be taken as well.

  • The show opened with scare tactics, which TV folks use a lot to get people emotionally invested in a topic. The problem is, once fear is raised, people tend to reach the worst possible conclusions and react with their hearts instead of their heads -- we don't want panic over ME/CFS and XMRV.
  • At the beginning of the show, Dr. Oz asked the question, "Is a retrovirus what's making you exhausted?" Then he said we'd learn the symptoms. It sounded like he was saying we'd learn the symptoms of XMRV, and to date we know of none. I don't believe he differentiated enough between what's linked to XMRV and what's linked to ME/CFS.
  • Dr. Oz was using numbers from the work done after the published XMRV study and never mentioned that this was a first step, not a definitive answer.
  • The transmission question got very little time. They said that it wasn't spread though the air and that it could be spread through blood. That could make people who haven't had a blood transfusion say they couldn't psossibly have it, when we know that's not the case.
  • When talking about treatments, the very last thing mentioned -- which is what people generally remember most -- was exercise. Dr. Oz gave an example of what might be appropriate exercise (walking to the mailbox everyday), but didn't make it clear that too much exercise can make you worse. I'm afraid this could perpetuate the idea that people with ME/CFS "just need more exercise."

While I think those aspects of the show could have been better, I think that overall the show was pretty successful. Dr. Oz has picked ME/CFS as a topic several times now, for his show and his magazine column, and that's obviously doing a lot to raise awareness of how very real and serious it is. The Google searches alone testify to the fact that people are more interested, and these people are approaching ME/CFS as a virus-related illness. How's that for something new?

If you'd like to see it, most of the segment (minus the 2 minutes of scare tactics at the beginning) is available on YouTube: Dr. Oz on XMRV.

What did you think of the show? Do you agree that it made a positive impact? Was there anything that concerned you about it? I'd love to hear your opinions -- leave your comments below!

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Comments
December 7, 2009 at 6:39 pm
(1) Ronan says:

I saw this video on youtube earlier. I thought it was done fairly well also, a piece like that will never be perfect but for the most part it portrayed ME/CFS accurately.

What i’m most concerned about now that ME/CFS is getting all this media attention on the back of the initial XMRV virus findings is what will be the publics reaction if its found after further research that its not at the root cause of the condition… or not a factor at all. Will all this then be used against us, another medical avenue which has been a dead end and once again the blame will be put in the “it’s all in your head” camp. More credible researchers reputations shot and not many more willing to put their head on the line in future with further research in the fear of the same happening to them.

Really I think itís a shame that its got all this attention before we know if its really at the ME/CFS roots. I myself think that it will prove to be the answer we have been waiting for… god help us if its not!

December 7, 2009 at 7:09 pm
(2) carlos says:

There are two more things I did not like from the show:

-He presented this disease as exaustation, I think that is inaccurate, there are many other symptoms that describe this illness better: Feeling actually sick and poisoned, not fatigued or exhausted!

-He presented this illness as a woman illness! The fact that the prevalence is higher in women, doe not make it a woman illness! I am a man and I do have CFS.

But despite the critics, I think that at least we got some coverage on the media which is what we need. So, it was acceptable in my view.

December 7, 2009 at 7:12 pm
(3) carlos says:

By the way, if you want to spread awareness here goes a good video of youtube:
http://www.youtube.com/watch?v=na3WMMhLm-k

December 7, 2009 at 10:18 pm
(4) Anna says:

Carlos I’ve seen that XMRV youtube video.
It’s good but, to be picky (in the interests of furthering the cause – not to undermine the wonderful effort here!), it needs a little attention on grammar to make it 1/ appear more credible and 2/ factually accurate.
It says the virus was found in 67% of white blood cells…(not of patients) for example, and there are one or two other small things.

Adrienne, I thought the Dr Oz interview was good and he did seem genuinely interested to learn more.
It was clear he doesn’t really have full understanding of some of the realities of the disease. But I was left with the feeling that he was genuinely interested to know more. Not only that but that he felt the general public should be interested to know more too.
As far as raising awareness goes I think it made great steps forward.
I do agree that this initial XMRV finding should probably have been described as potentially very important, the result of some very good scientific research.. yet needing further study.
By the way, Donnica Moore wrote a very good article to go alongside the interview. http://www.doctoroz.com/videos/what-chronic-fatigue-syndrome-and-how-xmrv-related

December 8, 2009 at 12:28 am
(5) Susan says:

I watched the clip and thought it was fairly well done. I agree that any focus on “fatigue” is misleading–the immune dysfunction needs to be discussed for markers have been found for this and patients have a variety of medical problems that recur (that don’t recur with a functioning immune system.)
I thought it was OK that he mentioned the exercise (in that it was to “keep moving”) even if to walk to the mail box (he could add that some days this isn’t possible. A real problem as we age with CFIDS is deconditioning. We need to at least stretch and do as little or as much movement as we can that does not cause push/crash. This is very very different than saying we need graded exercise therapy which can be very damaging.

December 8, 2009 at 2:31 pm
(6) Nancy A. says:

I was disappointed the day I watched the show. I was hoping the Wonderful Wizard, Dr. Oz, would have presented the new information about the XMRV virus without all the scare tactics. I’m glad that more people are researching XMRV online as a result of Dr. Oz’s show, and finding out more about CFS/ME.

December 8, 2009 at 5:18 pm
(7) Too tired says:

I too was disappointed with Dr. Oz’s presentation of CFIDS/ME/XMRV/LMNOP. It was very obvious that he had been briefed before the show and probably didn’t know much, if anything about the subject before then.

He didn’t talk to the pain and suffering of people with this disease, but rather he pandered to the fears of his audience.

Then when he talked about how we need to exercise I immediately thought to myself, this guy has been reading the CDC recommendations. What a tool!

On a related note, as most of you probably already assume, the nation’s blood supply is indeed tainted with XMRV. In the 24 years that I’ve been a PWC (person with CFIDS) I’ve donated blood a number of times – perhaps 8 or 10. Every time I did I made sure that I told them that I had Chronic Fatigue Syndrome. They’d look in a list of ailments and then they’d have me roll up my sleeve. One time the person telephoned someone to be sure it was okay, but I was never turned away.

December 9, 2009 at 6:13 am
(8) Greybeh says:

I wish they had a question and answer session on the show about the illnesses that they talk about — then we could SEE what people’s response/misconceptions are about the illness.

Wishful thinking, of course. I think this segment will do more good than harm, tho. It was pretty good.

I think that Dr. Oz showing compassion and holding Gina’s hand was very powerful. His tone of voice… He was really *REAL* — not at all condescending, he LOOKS like a believer. I think Dr. Donnica and the WP Institute may have had a powerful effect on him.

I think the audience’s reaction was appropriate — not exaggerated. We have a serious illness. People should understand that. As someone who is still trying to WORK despite being ill, one of the things that is MOST difficult is that PEOPLE DON’T UNDERSTAND — they think I’m a hypochondriac. We don’t want to create panic, but I don’t think that’s what I saw in the audience. Interest, compassion, curiosity… This was good. This is the second time I’ve watched it.

I got more out of it thanks to your commentary, tho.

December 11, 2009 at 3:36 pm
(9) Nancy Henson says:

I have viewed his 2 videos and must say that he is really trying to present this as best he can. He is not given enough time to cover all the aspects of CFS plus the added issues of FM, which typically accompany CFS. Or CFS accompanies FM.

This is a very complicated disorder and much to be done to get it identified and accurately diagnosable affordably. Realize that 25 years have been wasted by the CDC/NIH and now the WP Institute is finally getting somewhere. So I think as time goes on, Dr. Oz will present more and more information as it becomes available.

I think we should thank him for his efforts. I would offer brief suggestions but always be appreciative and not negative. Over all, I think he did very well considering time limitations with the 2nd presentation on CFS anb XMRV.

December 11, 2009 at 3:49 pm
(10) Karen says:

Adrienne, I think you should take your pros and cons of this show and mail them to Dr. Oz. I think he should have another show, and hit on the things he missed.

December 11, 2009 at 4:30 pm
(11) Linzer says:

Adrienne,
I agree with some of your observations. I recoiled at the scare messages and sensationalization of this retro-virus and CFS/ME. As well as one of the guests commenting, “brain fog is not like forgetting where I put my keys, but like forgetting what my keys are for.” Excuse me.

I am writing as a person who has been diagnosed with Fibromylagia and has been living with so many of these symptoms for much of my 58 years. And yes, I have been sent to psychiatrists, told to just get up and out of bed, asked repeatedly “what is your problem?”, been told to just “push through it” or a “10 minute walk will take care of it”.

People experience syndromes on a continuum. Remember the Bell curve? Some wax and wane. There is still, so so much that the medical research community does not know. And this is just a beginning — albeit an important, critical one.

I just felt more frustration listening to the program where more frustration is not needed.

Debbie

December 11, 2009 at 4:55 pm
(12) Cinda Crawford says:

I have studied, talked about, and blogged about Chronic Fatigue Syndrome and XMRV many times. This is indeed exciting information, but we’re barely out of the prologue of this new book in history. Every chapter of it is still to be written. It brings both promise and fear. Either way, may we all get our questions answers. I appreciate the research and the renewed interest by respected authority figures– like Dr. Oz. Bless him for bringing further awareness to this cause. I do have a different perspective about his exercise comment. I spent many years tragically sick with CFS. However I got well (healed actually), and now I struggle to come back from a deconditioned state while I’m getting older at the same time. It’s a challenge! I encourage everyone to not fear exercise just because it may make your symptoms worse. Simply be very aware of your body if you attempt anything physical. Listen to it carefully and back away if needed. You can always come back & do more at a later day, if you don’t backslide with symptoms. Even though I’m much better, I still use the principle of Dr. Lapp’s “energy envelope” very effectively You’re welcomed to check it out at http://healthmattershow.com/fibromyalgia-symptoms-human-energy-week-3/

December 12, 2009 at 2:36 pm
(13) Lesley Lynch says:

First, Cinda, would you mind explaining how you were healed? Could certainly use some hope after trying so many things over the 20 years I’ve been ill. Congratulations!

As for the article and other people’s comments, my biggest concern was what Ronan said about this only being initial research. Dr. Oz presented it as though it were proven that XMRV causes CFIDS. Everything I’ve read says it could cause it or just be another opportunistic infection.

And, yes, the sensationalism at the start of the show was unfortunate but typical of TV….as the saying goes “if it bleeds, it leads”. I just wish he had not made it seem so definite in case further research doesn’t duplicate the study. Although I must say, it does seem like this could be the answer as I’ve always said it feels like something has taken over my body.

December 14, 2009 at 12:18 am
(14) Gina Pogol says:

I was the patient on the show, and they cut the part where I explained that I understood why my doctors never diagnosed me with CFS.

I have mediastinal adenopathy (which prompted me to get HIV testing), tumors in my liver and spleen, very high catecholamine levels which make my heart beat very fast and doubled my BP. I sweat and have GI problems but don’t have much fatigue, only a loss of stamina and no tolerance for heat.

The docs at Mayo Clinic said that I have autonomic neuropathy, which means that my central nervous system is shutting down. It can kill you if not cured. I told Dr. Oz that I was added to the study because I met the Canadian criteria for CFS, which are mostly neuro-endocrine symptoms.

I think they cut it to keep things simple, but you can see where it was–he says that about 50% have atypical presentations like mine.

Guide Response: Thanks so much for your comment and for the added information! I think you did a lot of good for a lot of people by going on the show and helping further understanding of ME/CFS. I hope you’re finding effective ways to treat and manage your illnesses. ~Adrienne

December 28, 2009 at 9:16 am
(15) Deb says:

Thank you for the opportunity to post!
I was thrilled to see Dr. Oz’s show that day highlighting CFS. I am challened with the autoimmune disorder Sarcoidosis (for those of you familiar this is what actor Bernie Mac passed from and football star Reggie White). These autoimmune disorders fall under much of the same categorized symptoms, so I was very familiar with what this woman was experiencing. As it is also suspect that ALL autoimmune have a bacterial link.
It was good to see recognition for symptoms. I recall having received the suggestion to see a psychologist for my illness. If anyone were to live daily with these chronic illnesses they would change their thoughts. The reality of dealing with the pain and fatigue is very real, along with the daily thoughts that major organs are often involved. It is very frightening. Imagine having cancer and no one recognizing that it is an illness. Tough stuff let me tell you!
People are also dying from these diseases it is just not in the forefront as doctors know so little about how to combat these illnesses. This Christmas Day, Gilbert Barr Jr, who has written three books on chronic illness, passed at age 51 of Sarcoidosis complications.
I feel very fortunate to be on a research treatment that is helping to turn me around. It is a long process but I am out of bed and back on my feet after many years.
We can only hope and pray that much more research is done and people will not be living their daily lives in chronic pain and fatigue, disability and the fear of death. This fatigue that we deal with is like waking up in the same mode that you went to sleep. It is completely exhausting. Keep hope alive! Deb

January 12, 2010 at 2:21 pm
(16) Tamara says:

All folks with ME/CFS, fibromyalgia and other Dx need a thorough screening for both virus and bacterial chronic co/infections from tick borne vectors. FDA Lyme panels come back negative as Lyme hides in the body and only comes out in the blood to breed, then there is a very short window to find it immunologically. Read PJ Langhoffs’ new book on tick borne vectors: “The Bakers Dozen and the Lunatic Fringe”. See the websites of A. Martin Lerner and Joseph G. Jemsek M.D. & the movie “Under Our Skin”. Note the bacterial research of Dr. Lerner has been denied publication, yet he presented unpublished data at the MI Lyme Disease Associations 5th Annual Conference in August 2009. There are many tick borne coinfections that need to be ruled out or treated too (many misspelled here): rickettsia, erhlichilia, babesia, bartonella, coxsackie, Q-fever, rocky mountain spotted fever, mycoplasma’s, etc. The virus infections respond to treatment and seem to be secondary to the severe bacterial infections. If you only have a virus, you’re lucky. Our blood supply/organ donor programs are contaminated and needs screened. Tick borne vector organisms are a huge problem and have now spread to other biting insects like flies, mosquitoes, fleas, lice and bed bugs. Good luck healing! http://www.shaklee.net/healnotharmtheplanet

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