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The Case for Centers of Excellence in the US

Discussion in 'General ME/CFS News' started by Kati, May 28, 2016.

  1. Kati

    Kati Patient in training

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    http://www.immunedysfunction.org/excellence.html

    From Dr Friedman's Facebook page. (Not sure if it's been posted before)
    There are a number of very powerful slides if you scroll down the link. Great work.

    Announcing CFSAC ME/CFS COE Recommendation

    On May 17, 2016, the Chronic Fatigue Syndrome Advisory Committee, a U.S. Department of Health advisory committee, whose purpose is to make recommendations to the U.S. Secretary of Health on matters related to ME/CFS (formerly known as Chronic Fatigue Syndrome), recommended to the Secretary the creation of 12 ME/CFS Centers of Excellence, each to be funded at a level no less than $1 million/year in direct costs, for no less than 5 years, requiring an investment of no less than $60 million in direct costs for these Centers and ME/CFS. It was further recommended that these Centers be geographically distributed throughout the United States to enable access by all ME/CFS patients, and that these Centers be comprehensive in the services they provide which include: both basic and clinical ME/CFS research, ME/CFS patient care, education of both patients and the public, physician training so that more physicians are able to provide advanced care for patients, and social services for patients. For those patients who are unable to travel to one of these Centers, the recommendation stipulates that there will bedbound and housebound patient care provided via telemedicine in the communities in which these patients live.

    ME/CFS Centers of Excellence, while primarily targeted for ME/CFS research and patients, may include the study of related illnesses such as Lyme disease, fibromyalgia, Gulf War Illness, and Multiple Chemical Sensitivity. Such an inclusive strategy recognizes the similarities of pathophysiological mechanisms of illnesses which exhibit similar symptoms, and the efficiency in advancing the understanding of mechanisms contributing to these illnesses by simultaneously studying multiple illnesses.

    ME/CFS Centers of Excellence have the potential to explore and reveal a new class of infectious disease agents: those viral and bacterial agents which produce chronic unwellness and disability by either persisting beyond the usual and recommended course of treatment and/or incapacitate the immune system such that it is no longer able to clear the infectious agent or agents from the human body. It is, therefore, to everyone’s benefit that such Centers be funded.

    According to Jason et al. (1), the societal cost of ME/CFS to the U.S. economy is approximately $7 billion per year. Therefore, from an economic point of view, it would be financially advantageous to fund ME/CFS Centers of Excellence at a fraction of this cost with the expectation that within 10 year’s time, the $7 billion annual loss to the U.S. economy would be substantially reduced or eliminated.

    For these reasons, we ask everyone to support the CFSAC’s recommendation for ME/CFS Centers of Excellence.
    The CFSAC approved the creation of 12 Centers based upon the presentation you may view at the following link:
    http://www.immunedysfunction.org/excellence.html

    We encourage you to read the identified reasons why ME/CFS Centers of Excellence should be established. Our hope is that after reading the presentation you will be a staunch supporter of these Centers, willing to inform your federal government representatives of your support for the creation of these Centers.
    Thank-you.

    1. Leonard A Jason, Mary C Benton, Lisa Valentine, Abra Johnson and Susan Torres-Harding (2008) The Economic impact of ME/CFS: Individual and societal costs. Dynamic Medicine 7:6
     
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  2. duncan

    duncan Senior Member

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    I wonder why Lyme is noted for possible inclusion. If Lyme, why not tertiary neurosyphilis or stage four pancreatic cancer or MS?

    I think there may be a political statement embedded here.

    On the surface this has little to do with the proposed CFS NIH study. Still, suggestions such as this may possibly reflect on why including NIH investigators like Breen or Marques may bring some unrelated maneuvering into what should be a strictly ME/CFS effort.
     
    Last edited: May 28, 2016
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  3. Valentijn

    Valentijn Senior Member

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    My bigger worry would be that a center of excellence encompassing a variety of illnesses would be too focused on looking for similarities in research. Then we end up with "fatigue" and "pain" centers, which are a short step away from "medically unexplained physical symptoms".

    It would also likely end up with research going more into some diseases than others, which might end up with ME/CFS getting shafted yet again.
     
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  4. duncan

    duncan Senior Member

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    Agreed, @Valentijn.

    My additional concern is that there are some that may be hoping to divest themselves of the responsibility to properly research Lyme, but it fits right where your point is.

    I have had more than one debate on Lyme forums with IDSA-types over their suggestion that anyone not cured with conventional therapy should be labeled with MUPS. One person even tried to make it seem like, by Lyme patients embracing MUPS, they would be accepted more readily in the medical community.

    The risk of diluting an ME/CFS center with other diseases is real. It is made all the more real when the suggestion is to be open to related conditions/diseases, when they are clearly not related, as is the case with Lyme. If their suggestion is that Lyme should be included at these centers because it can lead to ME/CFS, then they also should see cases of EBV and HHV-6 and enteroviruses and...

    I am torn by this, because the 60,000 or so Lyme patients (in the US alone!) who remain sick, post-treatment, year after year, often need some place to turn to for some kind of hope.

    It just seems that there is a faint-within-a-faint going on here.
     
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  5. A.B.

    A.B. Senior Member

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    The success of the centers will depend on the training and skill of the doctors.

    This is a difficult area. There needs to be special attention to attracting talented, motivated doctors, and giving them good training. These centers could easily be a failure if doctors there don't know how to actually handle the illness. The risk is that of doctors being persuaded by patient blaming ideologies that offer the illusion of knowledge and pseudo solutions for every problem.
     
    Last edited: May 28, 2016
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  6. Justin30

    Justin30 Senior Member

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    Thaks Kati for posting....we need these....

    This information needs to be in Obamas hands and Trudeaus and all other primeministers and presidents on the planet.
     
  7. Kati

    Kati Patient in training

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    Yes we need these, but we need them to be done right.
     
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  8. Justin30

    Justin30 Senior Member

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    I agree.

    I am just glad they are proposing it though centers need to be set up in many areas.

    If this illness was given 1.8 billion and a center of excellence that had inpatient facilities for severely ill.....they would likely solve 95% of the Mess of ME
    ......

    What keeps ringing in my ears is....Funnnndddinggggg....Funnnnnddiiingggg......
     
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