USA: News from the Workwell Foundation.

Andy

Andy

Retired committee member
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
 
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.
 
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.]
 
Andy said:
Two Workwell emails.

[...] 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.]
Click to expand...
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.
 
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.
 
Trish said:
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.
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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).
 
mango said:
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).
Click to expand...
Yes, sorry, I forgot that bit. I meant no personal identifying information like name or email address.
 
Trish said:
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.
Click to expand...
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.
 
Trish said:
Yes, sorry, I forgot that bit. I meant no personal identifying information like name or email address.
Click to expand...
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.
 
Midnattsol said:
Moderator note: Posts discussing the Heart Rate Monitor Factsheet has been moved to a new thread here: https://www.s4me.info/threads/heart-rate-monitor-factsheet-workwell-foundation.19443/
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rvallee said:
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.
Click to expand...
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.
 
Andy said:
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 "
Click to expand...

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:
insurancenewsnet.com said:
This session will inform and educate attorneys and other professionals about the latest scientific connections and legal trends and analysis of COVID-19 and the Long Term Disability insurance claim, appeal, and litigation process.

The goal of this session is to arm attorneys with as much information and insights as possible so that they can advise their clients effectively.
Click to expand...

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.
 
Heart Rate Biofeedback for Myalgic Encephalomyelitis: From Physiology to Practice

Webinar by Workwell Foundation's Todd Davenport & Mark Van Ness
with @MEforeningen (Norwegian Myalgic Encephalopathy Association)

November 16th
9 am PST (Corrected time! Original tweet says 8 am)

Register Here https://conta.cc/3Wo9TsF​

Tweet:


Summary from the registration page:
Todd Davenport and Mark Van Ness of the Workwell Foundation

Myalgic encephalomyelitis (ME) breaks many of the physiological 'rules' about how the human body usually responds to activity. Too much physical and cognitive activity can result in post exertional malaise (PEM). PEM is a whole host of disabling symptoms and signs that suggest an abnormal physiological recovery response from activity.

Information from heart rate responses to activity can be a useful tool to determine the level of physical exertion and the status of the nervous system. This information can be used to make informed decisions about whether and how to complete daily activities, which may reduce the intensity and duration of PEM episodes.

In this webinar, you will receive current information regarding the physiology of PEM, activity pacing, and how to use data from commercially available wearable sensors. We will illustrate these concepts with case examples from people who are living with ME.
Click to expand...
 
From a Workwell email.

"The Workwell group welcomes the New Year with new ways to promote hope and provide help for people living with PEM/PESE

We are pleased to announce the formation of Workwell Health. The purpose of WWHealth is to elevate the standard of care for people living with post exertional malaise and post exertional symptom exacerbation through high-quality clinician education and patient care services.

Check out our new website at wwhealth.co, which describes WWHealth and its components:
  • WWHealth Learning Community: a place for clinicians to engage in education, coaching, training, and interaction to help patients manage PEM/PESE. Patients are welcome! If you're interested, please ask us about our discount program for patients to join.
  • WWHealth Virtual Clinic: a place for patients to find help for their disablement related to PEM/PESE using leading-edge principles and practices, many of which are based on the trusted science Workwell helped to develop. The initial focus will be on physical therapy and occupational therapy, with anticipated expansion to other health disciplines.
We will begin rolling out each component of WWHealth throughout 2023. Stay tuned for more details.

Questions? Please contact 4wwhealth@gmail.com.

And thanks for your ongoing support of Workwell!"
 
From a Workwell Email:

Workwell Foundation said:
NEW TESTING LOCATION

Workwell is thrilled to announce a new testing location in beautiful Santa Rosa, California (north of San Francisco). Visit our website to learn more.
WWW.WORKWELLFOUNDATION.ORG

2841 Cleveland Ave, Suite 2
Santa Rosa, CA 95403
Click to expand...

This is approximately 160 km (100 mi) northwest of their location in Ripon, CA, meaning more people will be able to reach them. However, it doesn't mean much to anyone on the east coast who might want to get tested at Workwell. (Though they have Betsy Keller)
 
Dolphin said:
From Workwell Foundation:

Workwell teams up with @statwearable

Read about our new collaboration examining whether cerebral blood flow is reduced during post-exertional malaise and if this metric helps explain the worsened orthostatic symptoms many report while in PEM/PESE

https://workwellfoundation.org/workwell-teams-up-with-stat-health/
​
Click to expand...
Ooo, that looks a great thing to investigate, the idea resonates with my experience. I hope the methodology will be good so results can be useful/reliable
 
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