Useful Links

Dial 211 for county services for Community Resources such as food banks, rental assistance, affordable housing, health resources, etc.

Find a health center near you: https://www.findahealthcenter.hrsa.gov/

LONG COVID

Long COVID Essentials

This series of resource sheets provides foundational information about navigating Long COVID. Whether you’re newly experiencing confusing symptoms, have had this disease for years, or are helping others in your community, these sheets will direct you to information and resources to support you along the way. This series is produced by Long COVID Justice and The Sick Times. It is designed by and for people with Long COVID and associated diseases. All resource sheets have been reviewed by people living with Long COVID and/or caregivers, and by medical experts who provide Long COVID care.

The COVID-19 Longhauler Advocacy Project

The COVID-19 Longhauler Advocacy Project is dedicated to supporting those affected by long COVID through comprehensive resources and the latest information. Our new guide, the C19LAP Comprehensive Guide to Long COVID V2 – expanded from our V1 Guide – has been meticulously updated and expanded to ensure it addresses the evolving needs of our community. We believe in empowering individuals with knowledge and access to support systems that can make a real difference in their journey to recovery.

Labs

Selin Lab

Run by viral immunologists Liisa Selin, MD, PhD, and Anna Gil, PhD.

• Conducting cutting-edge research focused on understanding human adaptive immune responses and T cell responses in multiple neuroinflammatory and infection-associated chronic illnesses, such as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) long COVID and Multiple Sclerosis.
• Investigating the presence and role of T cell exhaustion and double positive CD4+/CD8+ T cells in ME/CFS, Long COVID and Multiple Sclerosis. We were the first to investigate CD8 T cell exhaustion in ME/CFS patients, defining T cell exhaustion by immunophenotype and functional assays.
• Our lab’s unique findings point to immune dysfunction in infection-associated chronic illness, specifically the possible cause of and potential treatments for ME/CFS, Long COVID, EBV, Chronic Lyme and Multiple Sclerosis. Notably, we found similar immune dysfunction in people with Long COVID and ME/CFS, two illnesses with striking similarities.

Marketplace

Chronic Market

Website: https://chronic.market/

Chronic Market is an open marketplace exclusively for people with ME/CFS. If you suffer from ME/CFS and have a unique product or service to offer, or just want to share your art and story, they want to hear from you! The Chronic Market is open to all ME/CFS warriors around the globe. The Open Market platform is there to help ME/CFS patients earn an income, not to make income off of your work, so you keep all proceeds with the exception of a small fee to cover basic operating costs (at present, 1%) and 5% that will be donated to the Open Medicine Foundation to help fund critical research for ME/CFS. They encourage buyers to make an OMF donation to cover the 5% fee so you can recoup an even larger share of the purchase price.

Free Stuff

Freecycle 

The Freecycle Network™ is made up of 5,325 groups with 8,915,686 members around the world, and next door to you. It’s a grassroots and entirely nonprofit movement of people who are giving (and getting) stuff for free in their own towns and neighborhoods. It’s all about reuse and keeping good stuff out of landfills. Each local group is moderated by local volunteers. Membership is free

Website: https://www.freecycle.org/

Medicare 

Website: https://www.medicare.gov/basics/get-started-with-medicare

Medicare Extra Help: https://www.ssa.gov/medicare/prescriptionhelp/

Medicare beneficiaries can qualify for Extra Help with their Medicare prescription drug plan costs. The Extra Help is estimated to be worth about $4,000 per year. To qualify for the Extra Help, a person must be receiving Medicare, have limited resources and income, and reside in one of the 50 States or the District of Columbia.

Medicare Guide https://medicareguide.com/medicare-coverage

This site provides a handy breakdown of the different part of Medicare (A,B, and D), as well as recent changes in Medicare. There are also a number of useful articles that cover how to choose coverage when you have multiple chronic conditions, pre-existing conditions, tests that Medicare covers, and much more.

Medical Debt Resources: Get Help Affording and Paying for Healthcare: https://www.fiscaltiger.com/medical-debt-resources/

This site has some excellent resources, including charities that can help with medical debt, how to find free clinics, how to remove medical debt from your credit report, and much more.

Medicare Supplemental Policies: Do You Need One? – a clear and concise article that explains all the supplemental parts of Medicare by Dr. David Belk

FREE MEDICATION

Partnership for Prescription Assistance
Phone: (888) 477-2669
Website: http://www.pparx.org/

“The Partnership for Prescription Assistance has assisted nearly seven million people in the medicines they need for free or nearly free.”

Rx Assist’s List of Patient Assistance Programs
Website:http://www.rxassist.org/

“RxAssist is a nationally recognized, web based medication assistance resource center. Established in 1999 with funding from The Robert Wood Johnson Foundation, RxAssist gives providers, advocates, consumer and caregivers comprehensive, up-to-date information in an easy to use format.”

Free Medicine Program
Website:http://freemedicineprogram.org/

“Our mission at the Free Medicine Program is helping patients in obtaining prescription drugs and medications absolutely Free of charge.”

BenefitsCheckUp
Website:http://www.benefitscheckup.org/

BenefitsCheckUp is a free service of the National Council on Aging to help adults over 55 find help with prescriptions and other basic necessities. From the website: “There are over 2,000 federal, state and private benefits programs available to help adults over 55. But many people don’t know these programs exist or how they can apply.”

The Medicine Program
Website: http://www.themedicineprogram.com/

The Medicine Program is a patient advocate organization and is a free service. “Our goal is to assist you and your family find, apply and qualify for the right Patient Assistance Program(s). By working closely with you, your doctor and the drug manufacturers we help cut through the red tape and assist you in receiving your medicine free-of-charge.”

Needy Meds
Website: http://www.needymeds.org/

The mission of NeedyMeds is to make information about assistance programs available to low-income patients and their advocates at no cost. Databases such as Patient Assistance Programs, Disease-Based Assistance, Free and Low- Clinics, government programs and other types of assistance programs are the crux of the free information offered online.

Rx Hope
Website:https://www.rxhope.com/

Rx Hope specializes in helping small, emerging pharmaceutical companies manage their Patient Assistance Programs. From the website: “As an integral part of the Triplefin group of companies, we are a highly professional team of caring and concerned people dedicated to making the patient assistance process as easy and comfortable as possible for the patient, the healthcare provider and the pharmaceutical company.”

Patient Advocate Foundation
The Patient Advocate Foundation (PAF) Co-Pay Relief Program (CPR) currently provides direct financial support to insured patients, including Medicare Part D beneficiaries, who are financially and medically qualified for pharmaceutical treatments and/or prescription medication co-payments, co-insurance and deductibles relative to your diagnosis.
Website: http://www.copays.org/how-we-help

Rx Outreach
“We are a nonprofit charity that provides critical medicine for people who can’t afford it. We offer more than 500 medications through our mail order pharmacy delivered to all 50 states, Puerto Rico and the Virgin Islands. With support of generous donors, we help more than 85,000 people each year get the medications they need to stay healthy.”

Website: http://rxoutreach.org/

Disabled Discounts

“Our goal was to create one resource where people with disabilities, their caretakers, family and friends, could easily locate the discounts for which they qualify and save money.  And there are thousands of discounts!  They  cover  a wide range of products and services, in over 30 categories.  These are compiled by states and sorted by counties, in a site that is easy and comfortable to navigate. Each entry is either discounted or available at no cost.”

Website: https://disableddiscounts.com/index.asp

How to Get Free Government Cell Phone Service

While there may be minor differences from state to state, Lifeline is a federal government assistance program so qualifications are universal for the most part.

The most common way is participation in one of these government programs:

• Medicaid
• Supplemental Nutrition Assistance Program (or SNAP, formerly known as Food Stamps)
• Section 8 (Federal Public Housing Assistance)
• Supplemental Security Income (SSI)
• Veterans or Survivors Pension Benefits
• Bureau of Indian Affairs (BIA) General Assistance
• Tribal Temporary Assistance for Needy Families (TTANF)
• Tribal Head Start (must meet income thresholds)
• Food Distribution Program on Indian Reservations (FDPIR)

The second way to qualify is by your income.

Most states require that your total household income is less than 135% of federal poverty guidelines. So, for most states, 2018 income for a two-person household would need to be at or below $22,221 ($16,460 multiplied by 1.35).

Read more HERE: https://www.moneysavingpro.com/cell-phone-plans/free-service/

DISCOUNTED PRESCRIPTIONS

Good Rx
Website: https://www.goodrx.com/
If you have not already discovered GoodRx, you had better get with it!  Sign up at www.GoodRx.com or load the app onto your smartphone.  Then when you need to pick up a prescription, enter the drug name and dose plus your zip code to find lowest prices and coupons for the medication in your area. GoodRx also offers appropriate online or mail order service, if you wish.

Publix has everything from free meds to 90-day meds for $7.50.

Drug News
Website: http://www.drugnews.net/
News and information about warnings, lawsuits, and recent news on various drugs and medical devices.

Drug Dangers
Website: http://www.drugdangers.com/drugs/The web resource Drugdangers.com is sponsored by Seeger Weiss LLP. The site has pulled together as a single resource everything related to defective medical devices and drugs in order to promote education and awareness for victims, their families, and the general public. Our goal is to provide accurate, relevant information that can be used for general informational purposes, and to advocate for a greater awareness of the dangers of multiple drugs and devices that are still in use today. – See more at: http://www.drugdangers.com/about-us/Seeger and Weiss is a law firm representing clients in class action lawsuits. The site is well referenced and contains a lot of useful information.

Website: http://www.askapatient.com/
This is the best source for patient experiences with pharmaceuticals. (Not restricted to CFS/ME)

Website: https://www.chronichealthinfo.com/chronic-fatigue-syndrome-cfs-me
General information about treatments.

ME/CFSnet is the website of the ME/CFS Collaborative Research Centers The website contains information about the Centers, as well as ways to get involved in the research. Please visit the website at: https://mecfs.rti.org/

The CDC’s Patient Toolkit provides educational tools to help patients, their families, and caregivers manage their healthcare provider visits. Please visit the website at: https://www.cdc.gov/me-cfs/resources/patient-toolkit.htmlNEWS AND INFORMATION

ME Global Chronicle

News from around the world: Events, ME and children, ME and CBT/GET, Severe ME, Organizations, and more.

Phoenix Rising
Website:http://phoenixrising.me/

Phoenix Rising is one of the best overall information sites out there. This website has literally everything: research, advocacy, treatments, personal accounts and great boards.

Dr. Sarah Myhill
Website:http://drmyhill.co.uk/

Dr. Myhill runs a great website, with all her views and treatments available for the reading. She covers every topic thoroughly, with excellent, clear explanations of what causes symptoms and how to treat them. This site is essential reading for patients with CFS/ME as well as doctors and clinicians.

Dr. Jacob Teitelbaum
Website:http://www.endfatigue.com/
Dr.Teitelbaum’s informative articles can all be found here.

Co-Cure
Website: https://listserv.nodak.edu/archives/co-cure.html

Co-Cure is now a listserv. (Their website is no longer functioning.) You can search archived material by clicking on the link: https://web.archive.org/web/20140326134109/http://www.co-cure.org/

The CFS Report
Website:http://www.cfidsreport.com/

The CFS Report has a lot of everything: news reports, links, research, advocacy, as well as an interesting video of Dr. Montoya speaking at Stanford University about CFS/ME.

ME-CFS Knowledge Center
Website:http://cfsknowledgecenter.com/index.php

This site truly is a knowledge center. It provides general information, links to organizations, lists of support groups, and a video library.

Fibromyalgia
Website: https://www.fmaware.org/fibromyalgia-news/
General FM community resources.

ME Support
Website:http://www.mesupport.co.uk/
This is a resource site with links to every ME/CFS organization in the world and with extensive local links in the U.K.

The Medical Insider
Website:http://www.medicalinsider.com/index.html

This informative and well-organized website covers all bases: research, treatment, analysis, and links to practitioners in the U.K.. Great explanations of the mechanisms of CFS/ME (with pictures!). If you don’t understand Pall’s NO/ONOO‾ hypothesis, or Cheney’s theories on diastolic dysfunction, the Medical Insider will enlighten you. Also lists many European and U.K. online suppliers for supplements.

CFS/ME and Fibromyalgia Self Help
Website: http://cfidsselfhelp.org/

A website created by Bruce Campbell, who before becoming ill, was a consultant to self-help programs for chronic illness at the Stanford University Medical School. The site contains some good articles on coping techniques.

Health Rising
Website: http://www.cortjohnson.org/

Health Rising is Cort Johnson’s new website. It is focused on every aspect of treating CFS/ME – recent research, news, information on specialists, and treatments. Cort distributes an excellent free newsletter with the latest in CFS/ME news.

FORUMS

Do you want to know how other people cope with CFS/ME, how they recovered, what treatments they’ve tried, what doctors they’ve seen? Forums are where you get all that, and more.

Phoenix Rising Forums
Website:http://forums.phoenixrising.me/
You can’t beat these forums. Lots of great information by people who know what they’re talking about.

Hawkes’ Health Forum 
Website: http://www.hawkeshealth.net/community/index.php
Hawkes’ Health Forum has a good sub-section on CFIDS, as well as a lot of information on supplements and other related health concerns. Very welcoming.

PERSONAL WEBSITES

Fighting Fatigue
Website:http://www.fightingfatigue.org/
Sandy Robinson has written scores of articles about CFS, FM and interstitial cystitis. They are all on this site.

Living with CFS/ME
Website:http://www.fiikus.net/?cfs

Maija Haavisto, a Finnish journalist and medical writer with CFS/ME, has kept careful track of every treatment she has tried, and there have been many. Haavisto’s knack for organization is apparent on this website, which contains not only detailed information about CFS/ME treatments, but a clear description of relevant symptoms, book reviews, articles and useful links. A free ebook containing descriptions of hundreds of CFS/ME medications, Reviving the Broken Marionette: Treatments for CFS/ME and Fibromyalgia(abridged version) is available on her website.

SOCIAL NETWORKING

The ME-CFS Community
Website:http://www.me-cfscommunity.com/

This is a worldwide community for individuals who wish to learn from, and directly communicate with those who are afflicted with ME/CFS.

CRISIS LINES