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Oz Factory Churns Out Article on Managing Chronic Fatigue Syndrome

Discussion in 'Institute of Medicine (IOM) Government Contract' started by Never Give Up, Apr 6, 2015.

  1. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

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    They are getting it much better than they did on the Dr. Oz show.

    Read it here:

    http://tucson.com/lifestyles/health...icle_26c1c1e1-83a5-5a19-8edb-f8f983a68215.htm

    They give a reasonable overview, considering that all they know of this disease is what they've read.

    For dealing with sleep problems they recommend sleep hygiene measures. If that worked, it would not be a disease criterion. If it doesn't work, they recommend seeing a sleep specialist. This does help if you have comorbid Sleep Apnea Syndrome, Restless Leg Syndrome, or Periodic Limb Movements in Sleep, seeing a sleep specialist is the only way to get a good diagnosis and treatment plan.

    They recommend GET, but say, "But don’t overdo it. Exercising too long or just going to the supermarket or making dinner when you’re not feeling well could trigger a relapse." So that is an improvement.

    They suggest controlling pain. OKAY.

    They also suggest finding emotional support through support groups and better friends. And learning to cope with the illness via CBT, stress reduction techniques, etc.

    They advise exercising caution with alternative therapies as they may not work and may be costly. Too bad there are no therapies proven to work.

    Overall this is much better than most. They don't fully get it, how could they? I think they are just trying to help with the only tools they have. That's a step in the right direction.
     
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  2. Nielk

    Nielk

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    GET:

    CBT:

     
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  3. Mij

    Mij Senior Member

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    I think Oz should stick to writing about stress and burn out relief.
     
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  4. adreno

    adreno PR activist

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    Or knitting recipes.
     
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  5. SOC

    SOC

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    GET, hah! All the slight increases in activity only made me worse. Gave up on the silly GET notion. Once my health improved without GET, I was able to do more and I didn't need GET to achieve that. Granted, I didn't drastically increase my activity overnight, but I did increase my activities of daily living as I could until I could cook, clean, shop for myself, and do some gentle work from home to earn a living.

    Stupid OZ article writer admits going to the supermarket or cooking can be too much, but then suggests a 2-5 minute walk? o_O Who exactly is doing my cooking and grocery shopping while I'm having a nice little walk around the block? Yeah, my life is that easy... not!

    Frankly, I'm disgusted with these suggestions that we walk 2-5 minutes every day or so when many of us can't even cook, clean, or grocery shop. Wouldn't our limited energy be better used for ADLs? Or do these people really not understand that it's not about not being able to go to the gym, it's about not being able to take a shower standing up?
     
    Last edited: Apr 6, 2015
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  6. jimells

    jimells Senior Member

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    :jaw-drop: Why didn't I think of that? Perhaps I can order a better friend from Amazon, although they may not fit in my mailbox...

    Anybody confused yet? How about the general public?
     
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  7. SOC

    SOC

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    :rofl::rofl::rofl:

    Damn it! These media people are making the situation worse with their ignorance. I wish people would quit saying SEID = CFS. It doesn't, anymore than ME=CFS. Both may be subsets of of an extremely broad umbrella CFS definition that includes many different fatiguing conditions, but that doesn't make them interchangeable.

    SEID is a definition of what most of us have, but there are plenty of people with CFS diagnoses who do not fit the SEID definition. Just because you have a CFS diagnosis doesn't mean you automatically get a SEID diagnosis. It's NOT just a name change, it is a clearer definition of a particular illness for which PEM is a defining characteristic. One of the reasons for the SEID definition was to distinguish patients with the PEM-related illness from patients with other fatiguing conditions that have been collected under CFS.
     
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  8. jimells

    jimells Senior Member

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    I suspect few clinicians will understand this. More likely, they will simply throw their hands up in disgust over all the confusion and miss the whole concept of PEM completely. With everything else doctors are expected to keep up with (especially administrative b.s.), how many will have the time and interest to wade through the mess?

    After I finished reading the article I realized it never said a word about going to see specialists. And now that I think about it, I've never read anything in the regular media about seeing specialists.

    The treatments discussed by Dr Oz would tend to point folks towards the "multidisciplinary-clinics-that-don't-include-neuros/immunlogists/etc." that the P2P report was promoting, until it got put on "indefinite delay". This might be a good time to invest in "fatigue clinics".
     
  9. Nielk

    Nielk

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    The new IOM/SEID criteria are purposefully aimed at General practitioners; not specialists. That was the charge from HHS to the IOM panel.

    I agree that very few will know how to recognize true PEM.

    In this article, it is explained as getting worse with activity. That describes many Chrinic illnesses, including most autoimmune diseases.
     
  10. minkeygirl

    minkeygirl But I Look So Good.

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    Oz is just further proving what a tool he is.

    Hello can you say Exertion?
     
  11. jimells

    jimells Senior Member

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    Yes, this is sensible from the short-term insurance company point of view. Not only do specialists charge more, they are much more likely to try expensive treatments. In my experience, few GPs will prescribe expensive antivirals and immune drugs that have to be closely monitored.
     
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  12. SOC

    SOC

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    I think that all came about because the HHS was shocked/appalled by the testimony from patients about how long it took to get a diagnosis and how few of us get treatment. So their focus became getting us "better" diagnosis and treatment by making it (theoretically) possible to get local treatment.

    Frankly, I think it was a mistake from both an advocacy POV, and as a path for HHS. We don't need more GPs who know nothing about the illness pretending to diagnose and treat this very serious illness. We need better research and specialist centers.

    Maybe I'm wrong. Maybe this movement on the part of HHS will get more patients some of the symptomatic treatments that can improve QOL to some extent -- sleep meds, pain meds, thyroid testing/meds, treatment for OI, and so on. That hardly addresses the main issues with this illness, but maybe it's worth getting those QOL improvements for more of us, even if it's only a 25% improvement. Still, it's going to take years to get enough local doctors trained to see any substantial improvement in care, so I'm not convinced it is where I want HHS spending all it's effort for the next 5-10 years.
     
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  13. Valentijn

    Valentijn The Diabolic Logic

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    I'm pretty sure that article was excreted, rather than churned out :D
     
    Last edited: Apr 7, 2015
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  14. jimells

    jimells Senior Member

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    So far there has been nothing from NIH or CDC. The CDC hasn't updated it's awful "Toolkit" and they haven't announced a plan to roll out the new name and/or a physician education program. So far these reports are nothing but a diversion from the failure of NIH and CDC to implement any recommendations from any of the previous reports.

    I apologize if I sound like a broken record.
     
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