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Bob Miller asking for comments to Dr. Oz

Discussion in 'Action Alerts and Advocacy' started by SpecialK82, Feb 26, 2013.

  1. SpecialK82

    SpecialK82 Senior Member

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    Bob Miller posted this on his FB page...

    "Here is the direct contact below to the Dr. Oz show, instead of emailing each other as that is "preaching to the choir", use your energy to contact the show and tell them the truth about this illness. Don't just describe being stuck at home..., give symptom details along with medical and lab tests you have had done. Your life before and after being ill. Share this link with websites and ask others to write in.
    http://www.doctoroz.com/contact
    Bob Miller

    Here's a link to the offending articles that he is referring to (and I guess more are popping up)

    http://www.oregonlive.com/health/index.ssf/2013/02/drs_oz_and_roizen_new_treatmen.html


    http://www.ocala.com/article/201302...eatments-for-chronic-fatigue-syndrome#fb-root

    http://www.kansas.com/2013/02/25/2691690/drs-oz-and-roizen-new-treatments.html
    BEG and Kati like this.
  2. SpecialK82

    SpecialK82 Senior Member

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    You can write Dr. Oz directly and you can also leave comments on each one of these articles.

    Please make sure that the comments are reasonable, informative and educational. Please do not post insulting or nasty comments, this is counter-productive and will just make us look like nut-cases IMO.

    If we post enough comments (or send enough emails) with really good material, he might just become curious enough to really look into it! :)
    wdb and WillowJ like this.
  3. WillowJ

    WillowJ Senior Member

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    Dr. Oz is someone who says it makes as much sense to call this disease "chronic fatigue syndrome" as it would to call Alzheimer's "chronic shaking syndrome" (or something like that), so he is definitely a potential ally. We should treat him as an ally.
    SickOfSickness and SpecialK82 like this.
  4. taniaaust1

    taniaaust1 Senior Member

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    The article could of been far worst. If I try to read that from just a member of the general publics view... you see the 20% recovery rate there (which is what would stick in the heads of most who read this) which if anything just makes the CBT look dismal in my opinion (and also makes people think "oh wow, not many recover" so it actually helps get across this illness more seriously then most articles do), so even if not getting across the messages we want, its still helping get across some useful things.. and yeah I dont mind this article esp since some DO recover from CBT (the group which has psych disorders instead of ME or other missed diagnoses)..

    I thou may email Dr Oz later to tell him Im one of the ones CBT certain dont work for. Maybe someone should point out that there is a new international ME definition now (it will never end up coming into proper use if people dont advocate its out there) and that CBT is doubtful to work on those.

    it would be also good if people can point out to dr oz that housebound and bedridden patients (25% of ME/CFS) people.. were not included in that study at all (only the weller ME/CFS group were in this study), so that lowers are percent he's quoted. (it would be good if he added something like that to his article so its more accurate).
    Valentijn likes this.
  5. Dreambirdie

    Dreambirdie work in progress

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    A few years ago, I got people here involved in a letter writing campaign asking the Dr Oz show to do a segment about CFS. I contacted Donnica Moore and the WPI, and they contacted the Oz show producers, who put together the segment below, for which I could only find a French youtube video.

    This was right after the XMRV findings, which had brought so much attention and publicity to CFS. I thought that Dr Oz did a good job explaining retroviruses, and that he was really pretty empathic towards our disease. But so many people got angry and complained that he'd mentioned the word "exercise." He wasn't pushing a program of exercise, he just mentioned that it would be good if you could walk to the mailbox and back. You have to remember he's NOT a CFS expert, he's a heart surgeon, so he didn't know that exercise was a no-no for the sickest among us.

    I think anyone who writes to him should comment on how much they appreciated his show back in 2009, and his empathetic attitude towards CFS. It might make him more receptive to doing an update.

    DR OZ'S SEGMENT ON CFS BACK IN 2009

  6. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    A copy of my reply to Dr Oz, hopefully i have touched on some significant points and given him some food for thought. I think it shows our frustration with out sounding like im having a sooky la la (thats whinning just in case its an aussie term people dont get).


    I have recently read an article from Dr, Oz mentioning chronic fatigue syndrome. My concern is the lack of understanding of this illness, especially in reguards to promoting CBT/GET as a means of treatment. The article appears to make cfs/me seem like some type of deconditioning. Cfs/me is an immune disorder and possible an autoimmune disorder.
    Cbt/get arent promoted as the main treatments for other immune and autoimmune disorders, mostly they are told not to over do things and treatments are centred around controlling their immune system and treating infections one aquires.
    The recent cbt/get $5million dollar study undertaken by the psych industry under the guidance of Sir Simon Wessely, who believes that cfs/me is an illness belief, has been altered and adjusted along the way to make it look like they are helpful, in reality they fudged the books for their own benefit. Even by their own criteria the patients who supposedly improved were still very sick. Also noted that the severly ill and beddridden werent included in this study, so participants were hand picked to try and fudge the books more so towards their interests.Why is it so, because he( Simon Wessely and co) are protecting their own bit of turf and if many of these patients in the UK were tested and treated correctly they would find many of them have ongoing immune dysfunctions and chronic infection etc etc that the UK govt dont want to have to pay for or Mr Wessely to have his pet theory on illness belief proven wrong. I think its a failure of duty of care not to test these people properly for immune and infections and treat accordingly. Dam exercise, they even tell people with a cold not to exercise but cfs/me is different???
    There is enough research to prove that cfs/me is an immune disorder causing neurological symptoms. I was involved in a recent study in australia where they measured the natural killer cell function of 100 cfs/me patient every 6 months over an 18 month period. http://www.translational-medicine.com/content/pdf/1479-5876-9-81.pdf
    This study to help find a diagnostic marker or test for cfs/me. The study showed this is a common abnormality found in cfs/me low nk function and cd8 t cell dysfunction. When one looks into the function of natural killer cells we see that it fights viruses and cancers as its main job. This explains why so many infections are found in cfs/me and that its not a benign illness as we have a greater increased risk of cancers then do the general public.
    All we want is this illness to be taken seriously and not just as a burn out type condition or another form of depression or Simon Wessely's illness belief theory. We want more money into researching this illness, not just pumping a few token dollars into psych treatments like cbt/get that have little value to really treating this illness. We have been left in the dark for too long.
    At this stage there is still no treatments for cfs/me. Symptom management is all many can offer. There are treatments used off label with some success such as antivirals and immune modulators like ampligen etc these types of treatments need to be the recommended indications for cfs me who fit the criteria for their use eg low nk function and or high viral titres etc
    Also another group of people with cfs/me who are greatly neglected are those with pots- postural orthostatic tachycardia syndrome and orthostatic intolerance. These people have problems standing for any length of time due to poor blood pressure regulations etc and some people cant even sit up for any length of time and remain bedridden. These people would find it impossible to do any type of cbt/get. Many doctors dont even believe these patients and they are generally left at home hopefully with a relative to care for them. Many cant get any type of government health care assistance.
    This illness is not something that one would like to pretend just so they can get some type of disability pension, for starters its almost impossible to get any help and if one were to fake an illness then they would be better off looking for one that is alot easier to get disability.
    To promote cbt/get as a treatment for cfs/me is really saying to us that you dont think we are ill. Its hard to prove our illness because the research money for cfs/me is pitifull. If they just spent a 1/10th of the money they do on say breast cancer or HIV and put it into cfs/me then we would have answers and treatments that work. We would also have alot more people not needing disability pensions and more people able to contribute to society and pay taxes etc. The money spent on cfs/me research and treatments would yield a far greater return then what is spent on it as well as reduce the pain and suffering of millions of people, giving them their life back.
    cheers!!!
    Heapsreal
  7. SpecialK82

    SpecialK82 Senior Member

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    Very nice letter Heaps - very well-reasoned and calm. I just love hitting him with lots of facts.

    Dreambirdie and Willow - I completely agree, Dr. Oz has been our friend in the past. He also just had on a terrific episode a couple days ago about leaky gut syndrome. (Kept meaning to post about that) He said that it infuriates him that doctors don't beleive in such things. He really can be our ally - he just needs to be educated. I would love if he gets so much good feedback from those articles that he does a show on CFS and the research of today.

    I am going to write and ask him to watch the CFSAC meetings and give him a list of docs to interview.
    Dreambirdie, BEG, xchocoholic and 4 others like this.
  8. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Dr Oz does seem to be upto date on most things, maybe his ghost writters have written those articles on cfs/me, maybe if he reads some of our emails he may rectify them??
    SpecialK82 likes this.
  9. Ruthie24

    Ruthie24 Senior Member

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    Ok, I sent a note along with some links to the ICC and the physician primer along with some links to some of the docs doing some of the research these days and Staci Steven's research at Pacific Fatigue Labs. Along with a note saying how much I, as a physical therapist, would LOVE for exercise to be the answer to all this....but sadly it's not! I've been trying to make it be my answer since I got sick 3.5 years ago and while I still think exercise is important for me personally, it's not the cure for my ME/CFS- that's for darn sure.
  10. SpecialK82

    SpecialK82 Senior Member

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    Awesome Ruthie! :thumbsup:
  11. BEG

    BEG Senior Member

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    I'm too brain-fogged right now to compose anything meaningful. However, it has occurred to me that it would be a good idea to keep a document on one's computer chronicling your personal story of illness and adding links from time to time which pertain to one's symptoms. Then it would be ready for times like this when you just aren't able to participate.
    WillowJ and SpecialK82 like this.
  12. SpecialK82

    SpecialK82 Senior Member

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    Great idea BEG! :thumbsup:
  13. Ember

    Ember Senior Member

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