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Covid-19 resources for people with me
Join our facebook support group for COVID-19. This group is a space for COVID-19 Long-haulers who suspect they may have ME, ME patients who have COVID-19, and people with ME who want to mentor long-haulers.
Welcome to #MEAction’s page for information about the coronavirus outbreak and its effect on people with ME. Below you will find links to useful governmental sites regarding the outbreak as well as resources and articles particularly developed for people with ME. Be sure to also follow your local health authority for information specific to your area, this should not be your only resource! We understand that this is a trying and scary time. If you are interested in connecting with more of the community, we encourage you to join a call and/or join us on social media.
Find the Hospital Form and Hospital Checklist here. To submit materials to be added to this curated page, click here.
- All RESOURCES
- Long Covid
- General Info
- USA
- UK
- ME-Specific
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- Parenting
- Mental Health
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- Chronic Illness
- Webinars
WHO: Coronavirus disease (COVID-19) outbreak
The World Health Organization contains general information about the outbreaks, including travel advice, situation reports, and an FAQ.
LONG COVID AND ME/CFS: WHAT’S THE CONNECTION?
#MEAction hosted a seminar for post-COVID-19 “long haulers” on Friday, August 7. Watch the seminar recording here to learn more about ME/CFS as a potential diagnosis, in partnership with Body Politic and the COVID-19 Working Group New York.
COVID-19 Can Last for Several Months
The disease’s “long-haulers” have endured relentless waves of debilitating symptoms—and disbelief from doctors and friends.
Johns Hopkins: Coronavirus Resource Center Tracking Map
Johns Hopkins is one of the foremost universities in the United States for the study of Epidemiology. They have several useful resources, including a tracking map created by Center for Systems Science and Engineering. You can monitor the number of cases here.
CDC: Coronavirus 2019
CDC’s site contains advice for people with chronic illnesses, an FAQ, what to do if you become ill, and updates as the situation develops.
UK Official page
Scotland Official page
Latest guidance about COVID-19 from NHS Scotland and the Scottish Government, including social distancing and stay at home advice.
#MEAction Hospital Admittance Form
You can fill this blank form out by typing on your computer and then printing, or you can print it out and fill it in by hand. This form has a portion of the "my experience" section already filled in.
Useful medical information when treating COVID-19 patients with ME/CFS
Useful medical information when treating COVID-19 in patients with underlying ME/CFS from the Bateman Horne Center. Click here for tips on managing patients with ME/CFS/severe FM who become acutely ill.
#MEAction Hospital Checklist
A suggested list for what to bring on a trip to the hospital (overnight or longer).
#MEAction: Resources for Parents with ME during COVID-19
Parents with ME have had to learn to be creative and flexible in their parenting. In order to support them we have started a collection of resources and ideas from the community.
ME-Pedia: Post-COVID-19 illness
There have been some reports of long term illness in survivors of COVID-19.
Institute for Neuro-immune Medicine: Dr. Klimas on Covid-19
Dr. Nancy Klimas COVID-19 videos messages:
What you should do if you have ME/CFS
What you should do if you are a veteran with Gulf War illness
Bateman Horne Center: What you need to know about Covid-19
Bateman Horne's resource page and 2-part video series on Covid-19.
Part 1: Awareness & Preparedness
Part 2: Shelter in Place
Bateman_Horne Covid19 webinar
The Bateman Horne Center teams up to address COVID 19. This 50-minute program is as follows: - Research Director, Dr. Vernon, covers SARS, CoV-2, and COVID-19.
- Medical Director, Dr. Bateman, and Physician, Dr. Yellman, provide an overview of COVID-19's impact on the medical system, guidance for personal safety, a preview of potential treatments, and answer frequently asked questions from people with ME/CFS and FM.
Occupy ME: Covid-19 and ME
ME advocate Jennie Spotila's posts on Covid-19:
A New Virus and ME
Safety in Isolation
NPR: How To Prepare Your Home For Coronavirus (Guide)
Full of useful and practical advice regarding how to take care of your home at this time. Answers questions about what you can use to wipe down surfaces, what you should stock up on, and how to get extra prescription meds in advance.
Sustainable Caregiving: Coronavirus Preparation & Prevention Plan
Not ME-specific, but geared to caregivers who are confronting the challenge of looking after someone who is especially vulnerable to COVID-19.
Mclean: Caring for Your Mental Health Despite the Coronavirus
“A virus that has spread across the globe, coupled with breaking news accessible to us at any time, has made many of us worried. ...Many people are feeling anxious, even if they rarely experience anxiety.”
How To Get On: Newest News In The Time of Coronavirus
Updates on the latests corona-virus support related resources from How to Get On.
How to Get Groceries Delivered with SNAP Food Stamps (EBT)
Having groceries delivered is a handy way to avoid large crowds. How to Get On explains how to get groceries delivered when you use food stamps — lots of great resources are linked here.
Affordable Internet During Coronavirus
How to Get On: A few kindhearted companies are now offering Faster and Cheaper Internet In the Time of Coronavirus
Healing Justice Podcast: Corona
The episode includes timely medical information delivered with kindness by Dr. Crissaris Sarnelli, grounding presence from Evvie Ormon, powerful words about living with chronic illness from JD Davids, reflections on organizing culture and disability justice from Elandria Williams, and a reading of Dori Midnight’s recent poem about handwashing.
Half-Assed Disabled Prepper Tips for Preparing for a Coronavirus Quarantine
Leah Lakshmi Peipzna-Samarasinha is a disability activist who has put together an incredibly thorough how-to for “sheltering in place”, including practical advice on how much water and food to store. Some may feel empowered from accomplishing concrete tasks to prepare, but it may make others feel anxious to consider the worst-case scenario. It’s up to how if you decide to follow all of Leah’s advice, some of what works for you, none of her advice, or choose not to read!
Forbes: 5 Things to Know about Coronavirus and People with Disabilities
Andrew Pulrang (Forbes) thought-provoking analysis of the ways in which coronavirus affects the disabled and those with chronic illness, including the ways an outbreak causes employers to focus on accommodation.
Coronavirus hits ill and disabled people hardest, so why is society writing us off? (The Guardian – Francis Ryan)
“In a culture where ableism (prejudice against disabled people) is rife, there’s a natural concern about framing a pandemic in the belief that disabled people’s lives aren’t as valuable as everyone else’s.”
Ryan, The Guardian
Cancel everything (The Atlantic)
This article from The Atlantic includes practical advice for slowing the progress of the virus throughout our communities.
COVID-19 (CORONAVIRUS) INFORMATION AND RESOURCES
NAMI, National Alliance on Mental Illness, a leading mental health non-profit in the USA, provides a general guide for mental health support during Covid-19.
Covid-19 Mutual Aid UK
Covid Mutual Aid UK is a group of volunteers supporting local community groups organising mutual aid throughout the covid-19 outbreak in the UK. They focus on providing resources and connecting people to their nearest local groups, willing volunteers and those in need. They are coordinating care efforts for people who are self isolating, especially if they are part of a more at risk demographic including the elderly, disabled and people with other pre existing health issues.
Met Opera To Launch Free Nightly Streams During Coronavirus Closure
The Metropolitan Opera's Nightly Met Opera Streams series, bringing opera to people's homes during the coronavirus pandemic, enters its second week with a lineup of all Wagner titles. So consider switching up your self-isolation routine with a total of 29.5 hours of German drama.