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USA: News from the Workwell Foundation.

Discussion in 'News from Organisations' started by Andy, Mar 5, 2021.

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  1. Andy

    Andy Committee Member (& Outreach when energy allows)

    Messages:
    14,351
    Location:
    Hampshire, UK
    From an email.

    NEW RELEASE
    Heart Rate Monitor Factsheet

    Workwell is pleased to announce our new factsheet on Activity Management with a Heart Rate Monitor!

    Heart rate monitoring provides real-time biofeedback that promotes symptom awareness and control. When heart rate is associated with symptoms and perceived exertion, it can be a powerful tool to manage post-exertional malaise (PEM), i.e., worsening symptoms after activity (for more, see our PEM Time Course Factsheet).

    We include advice on using your own CPET findings and what to do if you have not yet had a CPET.

    We urge people to avoid using heart rate formulas for estimating the anaerobic threshold, the point at which energy production becomes less efficient. Instead, we urge people with ME/CFS to use resting heart rate (RHR) as the relevant benchmark for activity management.

    We reviewed the heart rate factsheet discussing “the why, the how, and the what” in our recent VIP webinar on activity management with a heart rate monitor. The webinar was such a success that we will be providing a second webinar that will be open to more participants in April - stay tuned!

    Link to their educational material, including the factsheet, https://workwellfoundation.org/resources/#edmat
     
  2. Aslaug

    Aslaug Moderator Staff Member

    Messages:
    1,494
    Ravn, Hutan and Trish like this.
  3. Andy

    Andy Committee Member (& Outreach when energy allows)

    Messages:
    14,351
    Location:
    Hampshire, UK
    From an email.

    ME/CFS Activity Management through Heart Rate Monitoring Webinar

    Exclusive Heart Rate Monitoring Webinar - 55% price reduction!

    Our recent VIP Webinar (limited to 20 people @$45) on introductory heart rate monitoring (HRM) was such a success that we are offering it again as an Exclusive Webinar.

    This round will consist of a recorded 30-minute presentation by the Workwell Team - Drs. Christopher Snell, Todd Davenport, and Mark VanNess - followed by a live 30-minute Q&A session.

    As an Exclusive Webinar, we will limit the number of participants to 75 people.

    Date: April 15, 2021
    Time: 12:00 pm PST
    Cost: $25

    The webinar will cover:

    • How to combine symptom awareness with HRM to reduce post-exertional malaise (PEM)
    • How to determine resting heart rate and map it on to “good” days and “bad” days
    • Simple rules of thumb based on our research for determining pacing benchmarks with and without CPET
    • How to fine-tune pacing by tying activities to perceived exertion
    • Case study on activity management with an HRM

    To purchase your ticket, click here.

    Once you purchase your ticket, you will receive a Zoom registration link for the webinar.

    This is the first time we are rolling out a tiered access structure for our webinars:

    VIP webinars will be limited to a small number of participants (~20). We will offer a live presentation, Q&A, early access to educational materials.

    Exclusive webinars will be offered at a reduced rate for a larger but still limited number of participants with a recorded presentation and live Q&A session.
     
    Ravn, cfsandmore, Trish and 1 other person like this.
  4. Andy

    Andy Committee Member (& Outreach when energy allows)

    Messages:
    14,351
    Location:
    Hampshire, UK
    Two Workwell emails.

    #1

    Please help us grow our patient education by taking the survey below!

    As part of International ME/CFS Awareness Day, we would like to know about any questions people with ME/CFS and long COVID may have for our team.

    We have designed a short survey about different facets of our work, including 2-day CPET, disability testing, heart rate monitoring, post-exertional malaise (PEM), energy conservation and pacing, and exercise.

    Your response will help us develop new patient education materials in the coming year, including future webinar topics. We look forward to learning more about which areas interest you the most (and why!).

    To take the survey, click [link removed]

    For more information about Workwell's mission, we invite you to explore our website.

    We greatly appreciate your participation in our survey.

    In solidarity,

    The Workwell Team


    #2

    Our survey is live...and is working!

    Hello!

    Please forgive the faulty survey link we sent out earlier - we have fixed the problem, and the survey ready to go!

    We apologize to those who attempted to take the survey and hope that you will try again. The data we collect is anonymous.

    We value your time and feedback and forward to seeing your questions.

    Thank you in advance for taking our survey - to access it, please click here.


    The Workwell Team


    [I've completed the new survey myself and saw nothing to concern me about data security or privacy.]
     
    Hutan, Binkie4, Ravn and 3 others like this.
  5. mango

    mango Senior Member (Voting Rights)

    Messages:
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    I can't help noticing that there's an awful lot of encrypted data attached to the link. Also, the link in your post is different to mine.

    I don't think we can be sure that the data collected is anonymous.
     
    Ravn and Andy like this.
  6. Trish

    Trish Moderator Staff Member

    Messages:
    36,361
    Location:
    UK
    I have completed it. You are not asked for any personal information. The questions are all invitations to ask questions about aspects of CPET, exercise, heart rate monitoring etc.
     
    Binkie4, Ravn and mango like this.
  7. mango

    mango Senior Member (Voting Rights)

    Messages:
    1,623
    Ah, seems like they have removed the questions about age, where you're from and the free text box about biographical info?

    But they do still ask about your diagnoses and how long you've had them for -- I'd definitely call that personal information (arguably 'sensitive' personal information).
     
    Binkie4, Ravn and Trish like this.
  8. Trish

    Trish Moderator Staff Member

    Messages:
    36,361
    Location:
    UK
    Yes, sorry, I forgot that bit. I meant no personal identifying information like name or email address.
     
    Binkie4, Ravn and mango like this.
  9. rvallee

    rvallee Senior Member (Voting Rights)

    Messages:
    7,500
    Location:
    Canada
    To be precise, they ask what are your top questions about those topics in free form.

    I don't know what to answer to that. Does it mean research priorities? We have zero answers about any of those topics so I'm not sure what's the point. Everything is still open as far as I'm concerned.
     
    Binkie4 and Ravn like this.
  10. mango

    mango Senior Member (Voting Rights)

    Messages:
    1,623
    Just be aware that if you opened the questionnaire through the personalised link in an email from Workwell, it's still possible that they have linked your questionnaire responses with your email address ie your identity. Also, the link in the email doesn't go straight to the Google form but through a commercial marketing company (Constant Contact) that tracks and collects data for profit. (Not uncommon, most companies and others use email marketing services to manage their newsletters etc.)

    Sorry I'm so grumpy about this, but it definitely rings alarm bells for me when there's an accidental privacy incident where sensitive personally identifiable information is revealed, and they don't even bother being transparent about what happened, and don't even contact the people whose personal information was exposed to apologise and/or explain why it happened and what steps they have taken to ensure it won't happen again.

    I expect better from Workwell. I expect them to take privacy issues seriously.
     
    Starlight, Hutan, Ravn and 3 others like this.
  11. Ravn

    Ravn Senior Member (Voting Rights)

    Messages:
    1,440
    I didn't know how to answer either so I filled in just the last question of the survey, which was basically is there anything else you want to tell us/ask us.
    I took it as an opportunity to tell them my concerns about their fact sheet.
     
    Starlight and Trish like this.
  12. Andy

    Andy Committee Member (& Outreach when energy allows)

    Messages:
    14,351
    Location:
    Hampshire, UK
    From a Workwell email.

    "COVID-19 and ME/CFS Disability Webinar Recording Now Available

    The recording can be viewed HERE
    The slides can be accessed HERE "
     
  13. ahimsa

    ahimsa Senior Member (Voting Rights)

    Messages:
    1,487
    Location:
    Oregon, USA
    I have not watched the video myself so I don't know what was discussed during this webinar.

    But here's an excerpt from an earlier announcement:
    https://insurancenewsnet.com/oartic...-insurance-for-those-with-covid-19-and-me-cfs

    Advice for folks in the USA: If your long term disability (LTD) benefits are covered by ERISA laws then make sure you hire a lawyer before your claim is denied, not afterwards. Most folks don't have any employer provided LTD benefits (only social security). But if you do then those benefits are likely covered by ERISA laws.

    ERISA laws are complex. Many years ago my lawyer told me that most cases are won/lost on technical legal issues (e.g., deadlines, or what's allowed to be entered in your case file) that have nothing to do with your health status or whether you are too sick to work. (not sure whether that's still true)

    It is much more difficult to win ERISA LTD benefits than social security disability benefits.
     
    Yessica, Michelle, shak8 and 2 others like this.

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