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My email to American College of Rheumatology

Discussion in 'Action Alerts and Advocacy' started by Andrew, Feb 8, 2010.

  1. Andrew

    Andrew Senior Member

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    I must emailed this to American College of Rheumatology. They are a professional organization, not school. I might try sending this to schools of rheumatology, but I'm not sure if there is an easy way to get the emails.



    To whom it may concern.

    Rheumatologists are the specialists to whom primary care physicians refer patients with chronic fatigue syndrome. Typically, rheumatologists have not been adequately trained in the care of chronic fatigue syndrome. They might tell the patient there is nothing to be done except SSRIs and sleep aids, or perhaps something like Provigil. The problem with this type of approach is it only scratches the surface, and the patients are left with a low level of care.

    I offer the following list of resources about the care and treatment of patients with chronic fatigue syndrome. Most of these can be downloaded for free and printed; one is a book that can be purchased.

    I hope you find it in your hearts to present this list to your members in an attention-getting way. It will go a long way to helping your members and their patients. I also hope you recommend that your members acquire all the resources listed below. The cost is almost nothing.

    1. The New Jersey Consensus Manual for the Treatment of Chronic Fatigue Syndrome.
    Go to this web address: http://njcfsa.org/
    Click on Physicians' Manual for Diagnosing and Treating CFS
    Then click on CFS Consensus Manual.pdf

    2. The Canadian Consensus Guide for ME/CFS
    Go to this web address: http://www.mefmaction.net/PhysiciansResearchers/Guides/tabid/531/Default.aspx
    Click on ME/CFS Consensus Document

    And/or if a doctor wants to quickly get started understanding the management of chronic fatigue syndrome, there is a brief “overview” version on the same page. To download this, click on : ME-CFS-Overview.pdf

    3. Chronic Fatigue Syndrome: A Treatment Guide by Varrillo and Gellman.
    This book is written for patients who want to help their doctors understand how to manage chronic fatigue syndrome. And as such, it is a good book for doctors to read. I suggest doctors at least skim the pharmaceutical section, and become familiar with basic testing.

    4. Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome
    Go to this web address: http://www.sciencemag.org/cgi/content/abstract/1179052
    This journal abstract covers an emerging area of investigation that looks more promising than past theories. Doctors should follow this development along with checking the Whittemore-Peterson Institute web site for updates: http://www.wpinstitute.org/

    5. Recovery from Chronic Fatigue Syndrome.
    Go to this web address: http://www.recoveryfromcfs.org/.
    Click where it says: Print or save from pdf file.
    Then click the link for saving the pdf.
    Or, simply read it from the web site.
    This is a guide that doctors can recommend to patients so patients can help themselves manage daily living with chronic fatigue syndrome.

    6. International Association for CFS/ME
    Go to web address: http://www.iacfsme.org
    This is an association for physicians and researchers with a professional interest in chronic fatigue syndrome. On this site are educational papers, newsletters, and notifications of conferences that focus on chronic fatigue syndrome.

    Thank you for your assistance.
     
  2. Kati

    Kati Patient in training

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    Andrew did they answer you?
     
  3. Andrew

    Andrew Senior Member

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    Since I last posted I've contacted them a few times. They ignore every contact I make.

    Here is the email address I sent to the first few times acr@rheumatology.org. Here is the email of the executive I sent a letter to: mandrejeski@rheumatology.org. Here is their contact page: http://www.rheumatology.org/about/stafflist.asp

    Below is my most recent letter, I don't plan to contact them again, except perhaps to tell them I hope they do more in the future.

    Below is the reading list I attached. A more recent version is in my blog here.

     
  4. YSL

    YSL

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    I thought that Fibromyalgia is a Rheumatology issue not CFS??? When I review the CFS physician referral lists, such as CO-CURE it seems that there are few Rheumatologists on the list. Maybe you should tackle the infectious disease docs, since the disease seems to have an infectious component!!!!
     
  5. Andrew

    Andrew Senior Member

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    Rheumatologists are the ones doctors refer to. That doesn't mean other doctors can't try to help.
     
  6. YSL

    YSL

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    Where are you getting this statics from??? I've communicated with tons of CFS patients and most were referred to psychiatrists, not Rheumatologists:)
     
  7. August59

    August59 Daughters High School Graduation

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    I'm making a geuss on this, but I think that they will start referring PWC's to "Infectious Disease" doctors if not now, they will pretty soon. This may also depend on whether your XMRV+ or not. Like I said it's just a guess. Here is the link to the " Infectious Diseases Society of America" http://www.idsociety.org/default.aspx. Their homepage has something about Lymes on it now.

    Edit: The mentioned Society is strongly opposed to the thinkings of LLMD (at least used to be - they do not believe in long term use of antibiotics)
     

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