A monthly speaker series on a wide variety of topics

Please join us on the 3rd Sunday of each month at 4:00 P.M. on Zoom

Free and open to everyone

Presentations will be recorded for later viewing

April Topic:

"Working With Your Healthcare Provider”

Presented by Alba Azola, M.D.

Sunday, April 24, 2022 at 4:00 P.M.

Dr. Azola, Co-director of a Long Covid clinic at Johns Hopkins, offers guidance on establishing a productive partnership between patient and provider and sharing realistic expectations as to how the treatments will progress, including what patients can provide in their first appointment that is the most helpful for the provider. This program will also touch on what patients collectively can do to encourage more providers to take on the challenge of treating complex, chronic illness.

The presentation will also be relevant to ME/CFS, Fibromyalgia, Long Covid, and Chronic Lyme Disease.

Did you know that MassME has a very active YouTube channel?

Check out our video playlists and be sure to subscribe to our channel in order to receive updates on new content. If you click the bell icon you will be notified when we upload new videos!

Website Update

We recently updated the Housing and Other Essential Needs section of our website.

Want to Get Involved?

We have need for one or two volunteers to help with counseling new patients and families, and providing physician referrals. For more information, please visit our Patient Services Information page.

We are also looking for a volunteer to help with scheduling and content selection for our Instagram and Facebook pages. Contact us if interested.

This past month saw coverage of some frustration with the federal government's engagement with Long Covid research and care. 

This STAT News article explores the slow progress of the NIH's four-year RECOVER initiative, funded by $1.15 billion directed by Congress. 

Also, Senators Markey, Kaine, and Duckworth, co-sponsors of the CARE for Long Covid Act, called on the Biden Administration to improve the guidance for Covid longhaulers applying for disability benefits. The guidance currently requires applicants to have a positive COVID-19 test or diagnosis -- something which many longhaulers are not able to produce due to early barriers to testing and difficulties with diagnosis.

The Senators' questions raise serious concerns, and the answers could have long-term consequences for those with ME/CFS also applying for disability benefits. Read the Senators' letter here.

May is Advocacy Month 2022

Remember to register for the upcoming advocacy day virtual meetings with our US Representatives and Senators on Tuesday, May 10th, Wednesday, May 11th and Tuesday, May 17th.

These meetings are incredibly important for raising awareness in Congress and personal stories have the most impact. If you are new to advocacy, there will be training sessions and you will most likely be paired with an experienced advocate. You can also register to have someone else advocate on your behalf. We need advocates from all states, but in New England, particularly Vermont, Maine and Connecticut!

Advocacy Month is organized by the Solve ME/CFS Initiative. Check out their month-long series of events for advocacy in 2022.

If you have questions or would like to coordinate your participation with others at MassME, please email us at Advocacy@massmecfs.org.

Millions Missing 2022 Virtual Event on May 12th

#MEAction is organizing a global virtual event for International ME/CFS Day on May 12th from 1:00pm - 3:00pm (ET).

RSVP here to join this community event to share stories, gain insights and connect with others.

Other events in May include a Virtual Artist Salon on May 16th from 3:00 - 4:30pm (ET), a Virtual Choir, and training events for sharing your story, taking a compelling photo, and writing a letter.

Watch the Millions Missing 2022 page for more details and mark your calendars for September when #MEAction will organize collective action events to raise awareness and push for change.

Tell NIH What You Think (about Long COVID and Women's Health)

The National Institutes of Health (NIH) Office of Research on Women’s Health (ORWH) is seeking public comments/input on research gaps, clinical practice needs, and research opportunities to inform research priority setting at the intersection of the severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2)/coronavirus disease 2019 (COVID-19) pandemic and/or post-acute sequelae of SARS-CoV-2 infection (PASC), aka long COVID, and the health of women.

Send your comments to ccrwhrfi@od.nih.gov. You can find more information here.

Recruiting participants for a Boston-area study

Dr. Athena Papas, a professor of dental research and the head of oral medicine at Tufts Dental School, has recently been collecting saliva samples for a metabolomics study and would like to include ME/CFS patients as controls. She needs 6 -10 ME/CFS patients, and would like to begin this work as soon as possible since this study is well underway.

The visit (at Tufts Dental School in Boston) is free, and participants also receive a $25 gift card to Target. The visit includes an oral exam and providing a saliva sample – non-invasive. Dr. Papas is a highly respected researcher who has been the principal investigator in over 65 studies.

This is a unique and important opportunity, since salivary gland disease is a “sleeper” symptom in ME/CFS – many patients have salivary gland issues (i.e. dry mouth) but may not connect that with ME/CFS. Dr. Papas is the only researcher pursuing this that we know of. Please Contact Us as soon as possible if you can help and we will provide all the details.

ECHO Webinar Series

The Long Covid and Fatiguing Illness Recovery Program ECHO continues their monthly webinar series with the following programs:

April 14, 2022:  Autonomic/Cardiac Manifestations.
May 12, 2022:  History of ME/CFS led by Dr Bateman.
June 9, 2022:  ME/CFS Patient Perspective.

Register here for all events

Recordings of past presentations are available on their website.

In addition, a 45-minute, self-paced Long Covid and Fatiguing Illness Recovery Program Quarterly Course is now available.

CDC ME/CFS Stakeholder Call
May 13, 2022 at 3:00pm (ET)

The next CDC ME/CFS Stakeholder Engagement and Communication Conference Call takes place on  Friday, May 13th at 3:00pm (ET). Elizabeth Unger (CDC) will present updates and Stephen Gluckman (University of Pennsylvania) will talk about "The Management Options (yes, there are management options) for People with ME/CFS."

No registration is required. Simply click on the zoom link to join the call or dial 1-669-254-5252 or 1-646-828-7666, and enter the Meeting ID: 161 023 4560 and Passcode: 55637917.

New Covid-19 Test to Treat Initiative and Locator Tool

A new federal Test to Treat program gives people a fast and easy way to get lifesaving treatment for Covid-19.

In this program, people can get tested at Test to Treat sites. If they test positive and treatments are appropriate for them, they can get a prescription from a healthcare provider and have the prescription filled all in one location. People can also bring test results obtained from a home testing kit to Test to Treat sites and get evaluated by a healthcare provider for treatment.

New Resource for Long-Covid

There is a new non-profit organization called Long Covid Families whose focus is on helping patients find ways to enjoy life while having a chronic illness.

New research hints at why Covid brain fog may persist

This article in MedPageToday suggests that an over-stimulated immune system - possibly triggered by ongoing vascular injury and repair - may be behind persistent post-Covid cognitive changes.