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ME/CFS, Long Covid, Lyme, and MCS Resources

An introduction to these illnesses.  Feel free to contact me with other ideas.

Image by Yuris Alhumaydy

ME/CFS and Long Covid Resources

Whitney Dafoe's Blog About Severe ME/CFS

Mary Dimmock's Excellent Book-Length Works "30 Years of Disdain" About How US/UK Psych Lobby Disinformation Shaped Decades of Policy Around ME/CFS

Long Version

Shorter Version

CDC's Page on Severe ME/CFS and on Postexertional Malaise (PEM)

Jennifer Spotila's Writings on postexertional malaise (PEM)

Former NYT Columnist David Tuller's Exceptional Writings on ME/CFS Research, Policy, and Politics

Ed Yong's Excellent Work in The Atlantic on ME/CFS and Long Covid

On The Atlantic Site

How To Get On - the absolute best guide to surviving the urgent and immediate issues of ME/CFS like SSDI, housing, and Medicaid care programs

Institute of Medicine 2015 Reports: Beyond ME/CFS: Redefining an Illness

Full Report

Clinician's Guide

Bateman Home Center's Guidebooks and Videos on ME/CFS and Long Covid, Including a Crash Guide

Montoya, Dimmock et al  "Caring for the Patient with Severe or Very Severe ME/CFS"

ME Wiki from ME Action

The Open Medicine Foundation

 

My friend

Hal Walker's Substack "Living In a Body"

Body Politic's Resource Page (Mostly on Long Covid, with ME/CFS Overlaps)

Phoenix Rising

"Remembering the Day We Were Married" by my late friend, the incomparable Nicole Reinert (ME/CFS for 20 years; died by suicide in 2016)

Farewell - A Last Post By Anne Ortegren - a severe Swedish ME patient who chose assisted suicide and used her last bit of energy to write a searing piece on the global reality of severe ME/CFS.  The end of this piece includes good resources on secondary depression and suicidality

Image by Erik Karits

Lyme and Coinfections Resources

Dr. Steven Phillips, MD (author of Chronic) has links to his lectures and HuffPost articles on his site, also, see his Substack "ZeroSpin

"The Lyme Wars: Meet the Players" a primer on the Lyme controversy

Better Health Guy

extensive information

Dr. Daniel Cameron's Site

tons of resources, video interviews with top Lyme doctors, and a science-backed blog

ILADS Find a Doctor Page

the best way to find a Lyme-literate doctor trained in correct testing and treatment protocols

Lymenet

a Lyme community since 1993

Dr. Ed Breitschwerdt Interview-- he is the O.G. of bartonella research and founder of Galaxy Labs

Invaluable Q & A with renowned Lyme herbalist Stephen Buhner on Planet Thrive before he passed away in 2022

My Late Friend Heather Askeland's Poem, "Reconciliation," about living with severe neurological Lyme

Man with Medical Mask

MCS Resources

My MCS/Accessibility Documents

How To Be Fragrance Free

Myths and Facts About Chemical Sensitivity

Planet Thrive

Toxics Information Project

UCLA's Chemical Entanglement Project

Environmental Health Center Dallas

(amazing collection of books and papers on MCS by the late Dr. Rea and staff)

The EI Wellspring (information on EI-safe communities and many other resources)

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BIPOC ME/CFS and Long Covid Resources

From the time I edited Stricken: Voices from the Hidden Epidemic of Chronic Fatigue Syndrome over two decades ago, researchers have known about increased prevalence of ME/CFS in BIPOC communities, and these communities have remained underserved ever since.  Now, research shows a similar increased incidence and impact of Long Covid on BIPOC communities.  

In 2021, MEAction stated its BIPOC Clinical Outreach Group to address healthcare disparities 

BIPOC Long Covid Facebook Group

Good piece on barriers to treatment for BIPOC Long Covid sufferers (2023)

Differences in Symptoms Between Black and White Patients with ME/CFS (2022 Research)

Aurora Levins Morales writing about these illnesses from Puerto Rico.

LGBTQI ME/CFS and Long Covid Resources

Long Covid Justice, an organization led by queer people with Long Covid, ME/CFS, and Associated Diseases 

Queer, Trans, and Sick with Long Covid

Queer people are more likely to have Long Covid, with resources

Illness/Disability and Violence Resources

The Anti-Filicide Toolkit

My Essay "Seeking Asylum" in The Revolution Starts at Home on IPV and Disability

"Why Do Narcissists Hate Sick People?" by Doctor Ramani on YouTube

Disability Power and Control Wheel from Safe Austin

ME/CFS and Long Covid Playlist

This playlist is an introduction to how severe ME/CFS can be, and how devastating it is for Long Covid patients realizing they've acquired a neglected illness that people almost never recover from.  I will probably update this playlist periodically.

Excellent video of Janet DaFoe - mother to severe ME/CFS patient Whitney DaFoe and wife of researcher Ron Davis - about what it's like to care for a very severe ME/CFS patient.

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Writing the shadow spaces of ME/CFS, chronic Lyme, and Long Covid

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