The U.S. Department of Labor (DOL) has opened a national online dialogue on “Understanding and Addressing the Workplace Challenges Related to Long COVID.” The online dialogue is a text-based forum that will remain open for posting ideas and voting and commenting on those ideas until August 10th.

In addition to people with Long COVID, #MEAction encourages workers and former workers with ME/CFS to participate in this dialogue and share their experiences, insights and possible solutions to the workplace challenges posed by infection-associated chronic illnesses. The ME community has decades of lived experience with these workplace challenges and DOL needs to hear from us!

In this article:

1. How to support #MEAction in the dialogue
2. How do I register for the dialogue?
3. What about other ideas?
4. Why isn’t there an online dialogue on ME/CFS?
5. How do I connect ME/CFS with Long COVID?
6. Other #MEAction advocacy to DOL

How to support #MEAction in the dialogue

#MEAction needs your support for ideas we’re proposing to DOL in this dialogue. You can do this by:

1. Registering for the online dialogue (help creating an account)
2. Up-voting #MEAction’s idea
3. Leaving a comment in support of our idea

DOL will keep track of which ideas get the most votes and comments, and will produce a report listing the top-ranked ideas that come out of the online dialogue. Evidence of strong community support for #MEAction and our ideas will empower us to better advocate for people with ME.

Support these #MEAction ideas on the DOL dialogue by voting and commenting:

1. Endorse #MEAction as stakeholder DOL should work with
2. Launch national public information campaign: Stop. Rest. Pace.
3. Provide short-term disability insurance policies

There are other good ideas on the dialogue forum we encourage you to check out. We will also submit additional ideas in the days ahead if capacity allows. The online dialogue will remain open until August 10.

VOTING:

To up-vote an idea you just need to click the “up arrow” located in the top right corner of the idea. You can also click on the idea to read the full details and leave a comment or reaction. You must first register for the dialogue by creating an account before you can vote or comment.

What the Up-Voting box looks like:

How do I register for the dialogue?

In order to participate in the DOL’s online dialogue in any way you must first register by creating an account.

1. Register at https://longcovidatwork.ideascale.com/a/register
   1. Provide an email address and password to create your account
   2. Provide additional info about yourself (DOL will keep this info private)
      1. STAKEHOLDER GROUP: Most individuals should select either “employee” or “other or none of the above” but select any that apply to you.
      2. INDUSTRY: Select industries you have experience working in or choose “other or none of the above” (eg. Education, Retail)
      3. COMMUNITY: Select any communities you are part of or choose “do not wish to disclose” (eg. Black, LGBT+)
      4. LOCATION: Select the best description of your location (e.g. urban, rural)
   3. Check your email inbox to verify your address (verification email will come from [email protected]) 

Now you’re all set to vote on our DOL online dialogue ideas:

1. Endorse #MEAction as stakeholder DOL should work with
2. Launch national public information campaign: Stop. Rest. Pace.
3. Provide short-term disability insurance policies

What about other ideas?

We hope to propose additional ideas in the coming days that you can also support. Anyone can propose their own idea in this dialogue, if you have a useful idea please share it!

We also encourage you to support other good ideas, especially ones proposed by other patient-led and community-accountable Long COVID organizations we collaborate with such as: Body Politic, COVID-19 Longhauler Advocacy Project, and Patient-Led Research Collaborative.

Ideas are organized into five separate topics: 1) Employee Challenges & Solutions, 2) Employer Challenges & Solutions, 3) Identifying Partners, 4) Informing Stakeholders*, 5) Employee Benefit Challenges
*NOTE: Under DOL terminology vote for #MEAction as an “informing stakeholder” not a “partner.”

The online dialogue will remain open until August 10.

Why isn’t there an online dialogue on ME/CFS?

We know that for far too long federal agencies have ignored or done too little to address the ME/CFS. We deserve to be part of the conversation too. The best way we can advocate for people with ME is to express our support for DOL hosting this important dialogue on Long COVID AND show up to make sure our voices and experiences are part of the dialogue.

How do I connect ME/CFS with Long COVID?

The ideas #MEAction posts will explain the connection between ME/CFS and Long COVID. You just need to vote for them. If you leave a comment you can simply talk about your personal experience with ME/CFS. If you are posting your own idea to the dialogue, we provide some suggested language below you could use to briefly connect ME/CFS and Long COVID.

Sample language connecting ME/CFS to Long COVID:

• PwME: I am a disabled [worker/former worker] with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), a chronic condition often triggered by an infection that has been reported in close to half of people with Long COVID.
• Caregiver/Ally: Long COVID is bringing much needed attention to this long-neglected issue of workers with infection-associated chronic illness such as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).
• COVID-19 onset ME: I am a person with Long COVID who has [been diagnosed with/developed symptoms of] myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

Other #MEAction advocacy to DOL

This year, #MEAction has expanded our federal agency advocacy to include the DOL. We’ve met with DOL officials, made policy recommendations, and gotten DOL to update information on ME/CFS for workers and employees. We were even able to get the DOL to extend the deadline for this dialogue from August 1st to August 10th explaining that the original time period wasn’t sufficiently accessible for people with chronic illness.

#MEAction will continue to advocate to DOL, but we need the ME community to show up and engage in this national dialogue.