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Mark Berry, Acting CEO of Phoenix Rising, presents the Board of Directors’ open letter to Queen Mary University of London (QMUL) urging them to release the PACE trial data, and hopes that other non-UK organisations will join British charities in the same request...
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CFSAC Wants Your Input!

Discussion in 'General ME/CFS News' started by Never Give Up, Jan 26, 2015.

  1. Never Give Up

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

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  2. Nielk

    Nielk

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    The image didn't come out.
     
  3. Never Give Up

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

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    This was forwarded to me via email.

    The Chronic Fatigue Syndrome Advisory Committee (CFSAC), a federal advisory committee established by the U.S. Department of Health and Human Services for the purpose of advising the U.S. Secretary of Health on matters related to Chronic Fatigue Syndrome (now, formally known in the United States as ME/CFS), has established a Working Group for generating compelling arguments for the establishment of Centers of Excellence within the United States for the care of patients with ME/CFS and to research the etiology of the illness and similar illnesses. To that end, an online survey instrument has been created to which we ask patients to respond. We seek responses from patients internationally so that international comparisons can be made.

    We ask your cooperation in distributing the attached announcement of the survey and solicitation of patient participation.


    Please accept my sincere thanks and gratitude for your cooperation and participation in this effort.


    Ken


    --

    Kenneth J. Friedman, Ph.D.
    Board Member, NJCFSA
    Board Member, ImmuneDysfunction.org
    Associate Professor of Pharmacology and Physiology, New Jersey Medical School (retired)



    Wanted: Patient Participation in Quality of ME/CFS Medical Care Survey
    The Chronic Fatigue Syndrome Advisory Committee’s Centers of Excellence Working Group invites the participation of all ME/CFS patients, 18 years of age and older, worldwide, but particularly within the United States, to participate in an online survey the purpose of which is to determine the ease of patient access to ME/CFS Specialists and to assess the quality of medical care received by individuals with ME/CFS from all of their healthcare providers. While it is of primary importance to establish the quality of care received by patients on a country-by-country basis, the intent of this survey is to establish the need for improved care within the United States based upon the quality of their care when compared to that of other illnesses within the United States, and based upon the comparison of their care to that received elsewhere in the world. The more robust the patient participation in this survey, the more significant the data and the more convincing the results drawn from it will be. We are hoping to obtain a minimum of 1,000 respondents in the United States. If you know ME/CFS patients, please encourage their participation. The results of this survey will inform us of the magnitude of need for ME/CFS Centers of Excellence, the services they should provide, and where they should be located.
    This online survey is anonymous. Participant identity will not be revealed. Patients will be asked about their experiences with: access to ME/CFS specialists, barriers to access to ME/CFS specialists, the quality of care they have received from ME/CFS specialists, and the quality of care they have received from healthcare providers who are not ME/CFS specialists.
    Patients will be asked to provide information, anonymously, about their current living circumstances (such as age, gender, and employment status), their ME/CFS diagnosis, ability to perform tasks of daily living, and illness onset characteristics. Patients will be provided with an opportunity to describe their medical care in their own words.
    To access the survey please follow the link:

    https://redcap.is.depaul.edu/surveys/?s=wGI2stCALK
     
    Last edited: Jan 26, 2015
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  4. Wally

    Wally Senior Member

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    @Never Give Up,
    Can you provide a reference/link to the statements you have provided above? I did not see information about CFSAC etc... in the link that you provided for the survey from DePaul University, but perhaps I missed this reference or it is came from another document?

    If the information in your post has been quoted from another source, would you be able to go back in and edit your post to put any quoted material in quote marks? Not sure if you have used the quote feature in the menu bar, but if not and you need help with doing this I would be glad to walk you thru the steps or a moderator can help you.
     
    Sasha likes this.
  5. Bob

    Bob

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    England (south coast)
  6. Wally

    Wally Senior Member

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    @Never Give Up
    Thanks for the edit to the post to explain that it was information you rec'd in an e-mail. It looked familiar to me, but I could not place where I thought I read this before. :confused:

    Thanks to @Bob who seems to continue to come to my rescue to help sort out my short term memory lapses and graciously delivers me to the link that I have forgotten. :hug:

    I did take a look on the HHS/CFSAC website and I did not see this questionnaire or any mention of this project. See, http://www.hhs.gov/advcomcfs/index.html
    Did I perhaps miss this information on the site? Or does anyone know if this information was posted somewhere else by the HHS?
     
    Bob likes this.
  7. Bob

    Bob

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    @Wally, it's all new to me... I only found the links by doing a Google search... And I can't see a notice on the CFSAC website either... It sounds like an interesting project.
     
    Last edited: Jan 27, 2015
  8. taniaaust1

    taniaaust1

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    I started to do the survey but Im already stuck on page 3 as there is no suitable option for me to select.

    There is no option as my answer would be.. that being.. Ive seen many CFS specialists in the past and saw them regularly. Im nowdays unable to get to my specialists due to the severity of the illness and not enough help available.
    ............

    edit.. thou I didnt tick a box in that section, it still allowed me to continue on and do the survey. At the end of the survey there is also an area to write comments. The survey didnt take long to do.
     
    Last edited: Jan 27, 2015
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  9. Denise

    Denise Senior Member

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    FWIW - the questionnaire is not from HHS or CFSAC but rather to gather input for the CFSAC Working Group on Centers of Excellence.
     
    Wally, SOC, Sing and 3 others like this.
  10. Sasha

    Sasha Fine, thank you

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    Argh, enormous sentences and gigantic blocks of text! I've edited this a little to split it into shorter sentences and have broken it up (hence I'm not putting it in quotation marks, since it's not a direct quotation).

    @Never Give Up - please feel free to cut and paste this into one of your early posts if you think people will find it easier to read than the original.

    [CFSAC] has established a Working Group for generating compelling arguments for the establishment of Centers of Excellence within the United States for the care of patients with ME/CFS and to research the etiology of the illness and similar illnesses.

    To that end, an online survey instrument has been created to which we ask patients to respond.

    We seek responses from patients internationally so that international comparisons can be made.

    [...]

    Kenneth J. Friedman, Ph.D.
    Board Member, NJCFSA
    Board Member, ImmuneDysfunction.org
    Associate Professor of Pharmacology and Physiology, New Jersey Medical School (retired)



    Wanted: Patient Participation in Quality of ME/CFS Medical Care Survey

    The Chronic Fatigue Syndrome Advisory Committee’s Centers of Excellence Working Group invites the participation of all ME/CFS patients, 18 years of age and older, worldwide, but particularly within the United States, to participate in an online survey[.]

    [The] purpose of [the survey] is to determine the ease of patient access to ME/CFS Specialists and to assess the quality of medical care received by individuals with ME/CFS from all of their healthcare providers.

    While it is of primary importance to establish the quality of care received by patients on a country-by-country basis, the intent of this survey is to establish the need for improved care within the United States based upon the quality of their care when compared to that of other illnesses within the United States, and based upon the comparison of their care to that received elsewhere in the world.

    The more robust the patient participation in this survey, the more significant the data and the more convincing the results drawn from it will be.

    We are hoping to obtain a minimum of 1,000 respondents in the United States.

    If you know ME/CFS patients, please encourage their participation.

    The results of this survey will inform us of the magnitude of need for ME/CFS Centers of Excellence, the services they should provide, and where they should be located.

    This online survey is anonymous. Participant identity will not be revealed.

    Patients will be asked about their experiences with: access to ME/CFS specialists, barriers to access to ME/CFS specialists, the quality of care they have received from ME/CFS specialists, and the quality of care they have received from healthcare providers who are not ME/CFS specialists.

    Patients will be asked to provide information, anonymously, about their current living circumstances (such as age, gender, and employment status), their ME/CFS diagnosis, ability to perform tasks of daily living, and illness onset characteristics.

    Patients will be provided with an opportunity to describe their medical care in their own words.

    To access the survey please follow the link: https://redcap.is.depaul.edu/surveys/?s=wGI2stCALK
     
    Never Give Up and Bob like this.
  11. Sasha

    Sasha Fine, thank you

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    From the info sheet on front of the survey (again, broken up for readability):

     
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  12. Sasha

    Sasha Fine, thank you

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    Just done it, very quick.

    Some of the options didn't suit me so I just described my experience in the comments box at the end.
     
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  13. ahimsa

    ahimsa Sick since 1990

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    Same here. It didn't take too long.
     
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  14. *GG*

    *GG* Senior Member

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    Yes, very easy. Done.

    GG
     
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