Julie Rehmeyer's 'Through the Shadowlands'
Writer Never Give Up talks about Julie Rehmeyer's new book "Through the Shadowlands: A Science Writer's Odyssey into an Illness Science Doesn't Understand" and shares an interview with Julie ...
Discuss the article on the Forums.

CFSAC wants your comments regarding medical education

Discussion in 'General ME/CFS News' started by Kati, Jun 13, 2017.

  1. Kati

    Kati Patient in training

    Messages:
    5,226
    Likes:
    17,584
    Good afternoon. The next CFSAC meeting will be held on June 29th and 30th. It will be a webinar. The dialing information will be posted on the CFSAC website in the upcoming days.


    The Medical Education Workgroup will be reporting to CFSAC on the work they have been doing thus far. The Working Group would like to hear from the public regarding the following:


    1.What are the three most important things you want physicians to know about your disease?

    2.Since P2P and IOM reports, have you found the access to clinical care easier, harder or about the same?

    3.Do you believe that the physicians you’re seeing are interested in learning about ME/CFS?

    4.Do you believe the attitude has changed since the P2P and IOM reports?


    If you would like to speak to the Committee and Work Group members on the issues above, please email the CFSAC inbox. Five minutes speaking opportunities will be granted on a first come first serve basis.


    The CFSAC Support Team

    Email: cfsac@hhs.gov

    Website: http://www.hhs.gov/ash/advisory-committees/cfsac/index.html

    Sign up for the CFSAC listserv to receive the latest updates about CFSAC:http://www.hhs.gov/advcomcfs/cfsac_email_list.html
     
  2. Kati

    Kati Patient in training

    Messages:
    5,226
    Likes:
    17,584
    My answers:


    1.What are the three most important things you want physicians to know about your disease?

    A) it's real. Not caused by lack of motivation or psychological factors. It's not just fatigue. It is not about fatigue.

    B) it's serious: a life sentence is just as bad as a death sentence and deserves just as much attention, research and commitment into finding cause and cure.

    C) it's debilitating. The metabolomics research need to be shared.


    2.Since P2P and IOM reports, have you found the access to clinical care easier, harder or about the same?

    About the same: no care at all. Doctors are not aware of P2P and IOM information .



    3. Do you believe that the physicians you’re seeing are interested in learning about ME/CFS?

    Not at all.


    4. Do you believe the attitude has changed since the P2P and IOM reports?

    Not at all. Same contempt, same stigma, same neglect.
     
    -Jessie-, Chezboo, mango and 12 others like this.
  3. A.B.

    A.B. Senior Member

    Messages:
    3,140
    Likes:
    18,077
    I want doctors to know that what little they have learned about CFS was probably bullshit meant to trivialize the illness, disseminated by psychiatrists on behalf of the insurance industry and similar interest groups.

    I have noticed some change since the P2P and IOM reports but not in doctors.
     
    -Jessie-, WillowTree, Sean and 4 others like this.
  4. Kati

    Kati Patient in training

    Messages:
    5,226
    Likes:
    17,584
    @A.B. what changes have you noticed and i hope you share these comments to CFSAC
     
  5. lnester7

    lnester7 Seven

    Messages:
    2,146
    Likes:
    2,853
    USA
    1.What are the three most important things you want physicians to know about your disease?
    What is PEM
    I can be ok one day and not the next based on energy utilization.
    There are things that can be helpful: Treat sleep issues, treat OI, any other comorbidies

    2.Since P2P and IOM reports, have you found the access to clinical care easier, harder or about the same?
    Harder, more patients are educated about might having CFS but not more doctors somehow.

    3.Do you believe that the physicians you’re seeing are interested in learning about ME/CFS?
    Yes, they actually ask me to educate them, and ask for their other patients they don't know what to do with.

    4.Do you believe the attitude has changed since the P2P and IOM reports?
    No, they should be disseminated through the Doctor association or whatever makes sure 100% doctors know about it.
     
  6. Laurie P

    Laurie P

    Messages:
    39
    Likes:
    294
    New England, USA
    Question 1.

    a. Failure to recognize ME/CFS as a biological disease is malpractice for which they will be held accountable.

    b. Unless doctors follow the RESEARCH, it is beyond their ability as doctors to see us as patients. We need our own experts; who we don't have to "educate" and "train" to take care of us. Doctors should realize this and be professionally raising awareness to this fact. They should be ADVOCATING for us to get the EXPERT CARE that we truly require in ALL medical settings; offices, hospitals, home care, nursing homes.

    c. Patients shouldn't be crashing and/or deteriorating in attempts to get medical care and disability benefits. I want doctors to know the following and advocate it:

    Telemedicine or home visits for those unable to participate in clinical trials/treatment in person and outreach to underserved communities are needed. New technologies to address underserved populations and unmet needs (e.g., mobile technology, online tracking tools) should be developed and employed to measure progress and to enable communication, especially for those who are not served in the clinic setting. (NIH Pathways To Prevention Workshop: Advancing the Research on ME/CFS, page 13).



    I can't call. After 34 years of this disease, I'm bedridden, no longer have any medical care and can barely talk. I hope people calling in will read this thread while considering what they want to say. Thank you @Kati for starting it.

    Lastly, the IOM and P2P reports haven't helped me or a friend of mine who can still access some medical care. Doctors don't know that ME/CFS is a disease and they go off on their own tangents. They don't know what the IOM and P2P reports are about. Furthermore, why would they even know when the government websites are a hodgepodge of information, misinformation, harmful information and contradictory information that makes no sense?
     
  7. Kati

    Kati Patient in training

    Messages:
    5,226
    Likes:
    17,584
    @Laurie P do make sure you send your comments by email
    cfsac@hhs.gov. People can either have a phone or email testimony
     
    Comet and Laurie P like this.
  8. taniaaust1

    taniaaust1

    Messages:
    11,733
    Likes:
    12,175
    Sth Australia
    Most do not recover
    Its serious - 25% are housebound/bedbound and hence need support or care eg cant access doctors
    Its symptoms are expansive (not just a few symptoms or so) and many testable eg POTS and BP irregularities


    same

    Most doctors are not interested in learning about this HENCE it needs to be put into a speciality field and specialists for this should be trained


    (I cant send any emails as I cant access my account again due to memory issues)
     
    Laurie P, Kati, Izola and 1 other person like this.
  9. ahimsa

    ahimsa Sick since 1990

    Messages:
    1,772
    Likes:
    3,782
    Oregon, USA
    Comet, Joh, taniaaust1 and 2 others like this.
  10. taniaaust1

    taniaaust1

    Messages:
    11,733
    Likes:
    12,175
    Sth Australia
    thanks ahimsa, I filled it out there, while leaving out the American states
     

See more popular forum discussions.

Share This Page