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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

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    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

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    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

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    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

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    @A.B. what changes have you noticed and i hope you share these comments to CFSAC
     
  5. lnester7

    lnester7 Seven

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    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

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    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

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    @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

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    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

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    Comet, Joh, taniaaust1 and 2 others like this.
  10. taniaaust1

    taniaaust1

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    thanks ahimsa, I filled it out there, while leaving out the American states
     
    ahimsa likes this.
  11. Laurie P

    Laurie P

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    June 26, 2017

    Dear CFSAC Members,

    Below are my answers to the CFSAC questions regarding medical education for the June 2017 CFSAC meeting. I can't keep an appointment and I only have limited speaking ability so I am submitting my response in writing and not requesting a speaking time. Please only use my first name and last initial in public disclosure. Thank you.

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

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

    2. 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.

    3. Patients shouldn't be crashing and some deteriorating, having more of their lives stolen, 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).

    Questions 2-4 regarding the IOM and P2P Reports as well as Patient Care:

    The IOM and P2P reports haven't helped me. I have no medical care or dental care as my condition continues to worsen. Nor have the IOM and P2P reports helped a friend of mine, who can still access minimal medical care and dental care (dental taking over a year and still in process), with great difficulty through providers who are hostile, or who lack knowledge of ME/CFS, and lastly, with insurance policy juggling. Doctors and dentists don't know that ME/CFS is a disease and they go off on their own tangents. They don't listen to us if it doesn't fit their cookbook medicine. They don't want to or have time to learn about ME/CFS. We may as well be talking to the walls which continually keep falling on us burying us along with this disease. 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? Doctors don't know about the bogus PACE trial, what is going on in real biomedical research, and that the government won't fund our disease and has been misrepresenting and stigmatizing patients for decades. They don't understand and/or care that they don't help us, that they make some of us crash and suffer trying to get help, that some patients are confined to their homes and can't get help, or that some of us die. They practice in their niches with blinders on perpetuating our never ending lack of care. The neglect, abuse, harm, trivialization and mischaracterization by professionals, family members, the media and society who don't understand this disease and refuse to accept our medical needs is unrelenting. We desperately need ME/CFS experts taking care of us, writing up our disability reports, contacting and/or filing complaints against abusive providers or caretakers where appropriate and we need an overhaul in ME/CFS disability evaluation.

    I have been sick since 1983, when I had mono and a severe strep throat at the same time. I'm a severe, bedridden ME/CFS patient trying not to become very severe. I continually inquire about medical care through email or someone verbally inquires for me. I can't find appropriate medical care and the minimal care that I once had, I no longer have as my condition has worsened over the years. Since becoming bedridden, I have only relied on an ambulance and the emergency room, where, in the ambulance and ER, they had no understanding of ME/CFS, wouldn't listen to my needs, answer or get answers to my questions, fought with me (in the ambulance) and caused me a great deal of needless suffering and harm. I only went out of desperation because I couldn't breathe. I also had severe chest pain radiating down my arm and up my neck into my head. I had (still have?) pericarditis. I was too crashed and ill for follow up care and I had to forgo medication that I was given in the hospital and supposed to take to help me breathe because my doctor wouldn't call in the prescription without seeing me even though he had my hospital records. The ER doesn't write prescriptions and gave me a limited amount of medication to leave with. I am no longer a patient in any office. As I've said, inquiries to try to get medical care have all been fruitless and I have no faith hospital care has changed either. Put another way, I can't take any more harm from trying to get care; I'm too ill now. It's an inhumane and immoral currency. (For more see my 2016 NIH RFI Patient Response bottom of p.127; ER experience p.131.)

    I'm bedridden in a darkened room, emaciated, and I can't cook or take care of myself. I am very cognitively impaired. I'm in constant pain, SUFFER from chronic migraines, which were never controlled by prescription medications I've tried and my migraines can be accompanied by extensive vomiting. I have fibromyalgia, vertigo, numerous allergies, trouble breathing and a long list of other symptoms. I can only eat a few foods, which take me all day to eat, a little at a time, and I drink water. I'm not emaciated from lack of eating. I can only speak a little for brief amounts of time. I can't follow a conversation and I get confused and forgetful very easily.

    My caretakers are all disabled themselves and two of them are also elderly; one of whom was just released from the hospital and into a nursing home for the next month and the other who is home now still recovering from the 2nd of 3 needed surgeries. My caretakers need caretakers and my primary caretaker is severely ill and is being harmed having to take care of me. The only other help we have is from an elderly neighbor who is also taking care of his terminally ill wife. Almost everyone in my neighborhood is elderly; they're people my parents went to school with.

    My disability case is under review again and has been for over a year. I'm not able to reprove what's already been proven in decade's worth of records. Every month I fear my check won't come. I further fear what will happen to me when one of my parents dies. I fear losing the place I make my home now and the things that I still have that remind me of who I was. I've already lost my marriage and the house that I used to own as well as many of my belongings over the years as I've been forced to move repeatedly, finally moving into an apartment in my parent's house. So many people are in situations that never should have happened and keep on happening because the message about ME/CFS isn't getting out fast enough and accurately enough. This shouldn't be my life. I should have been able to finish graduate school at least and be living on that salary not the disability I started getting in 2003 that's less than half the minimum wage for my state. My last income when I was trying to work part time in 1990 was more than double the minimum wage at that time with full medical and dental care. This was when I was in and out of college and in and out of jobs doing my best to do what I could when I thought I could try to do something. I shouldn't have been trying to do so much. There should have been care and accommodations and RESEARCH. I should have my own family now and be sending the children that I never got to have off to college. I should be surrounded by people my own age and helping my elderly parents in their time of need as they've helped me for so many years. My life should be full of happy memories and happy times instead of memories of struggle and memories of turning myself and my life inside out and upside down trying to find help and trying everything that I could to find a solution to this disease. I shouldn't be left in isolation to have to continually fight and struggle like this with no safety and no ability to plan for the future which from here appears frightening. The worst part is that I fear that one more large crash or time will cause me to become very severe and after already suffering for decades, I can't live like that.

    Desperately (and in tears),

    Laurie P.
     
  12. Kati

    Kati Patient in training

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    @Laurie P thank you so much for sharing your testimony and i am so very sorry for your current situation. It is absolutely appalling that to this day, things are not much different than the 1980's. The stigma and neglect from health professionals, governments agencies and decision makers is untenable.
     
    Hutan, ahimsa, mango and 2 others like this.

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