This is a compilation of websites, blogs, newsletters, catalogs, and books I refer to when I need to look something up, research a new topic or just browse the state of the illness. This is a work in progress. It will be amended, refined and expanded as I have the time, so please check back often!
- http://www.meaction.net/ and https://my.meaction.net/groups/mepedia
- #MEAction is an international network of patients fighting for health equality for Myalgic Encephalomyelitis (ME), also known as Chronic Fatigue Syndrome (CFS). We build community and empower patients and advocates with the technological tools and advocacy training needed to effectively mobilize for ME equality. We were founded with the belief that while we may find it difficult to advocate for ourselves in the physical world, in the virtual world, we can be an unstoppable force. MEPedia is a wiki for myalgic encephalomyelitis.
- http://phoenixrising.me/ and http://forums.phoenixrising.me/index.php
- Phoenix Rising is one of the most robust and lively patient platforms out there. Phoenix Rising forums are primarily for patients with Myalgic Encephalomyelitis and Chronic Fatigue Syndrome (ME/CFS). Caregivers, researchers, physicians, and other medical professionals are welcome to join as long as you plan to post about ME/CFS. Members of the public who join to post about health issues that are unrelated to ME/CFS will not have their posts accepted and will be asked to find a more appropriate website to ask questions and/or post information.
- This site is primarily written by Cort Johnson, a person with ME who has extensively educated himself about this disease and medical research. He blogs about new research findings and ME politics and has guest contributors who write personal accounts. Cort started Phoenix Rising.
- The Solve ME/CFS Initiative (SMCI) has been the leading organization focused on myalgic encephalomyelitis (ME), commonly called chronic fatigue syndrome (CFS), since being founded in 1987. SMCI seeks to actively engage the entire ME/CFS community in research, works to accelerate the discovery of safe and effective treatments, and strives for an aggressive expansion of funding toward a cure.
- The ME/CFS Community is reserved for individuals who wish to learn from, and directly communicate with, those who have ME/CFS. Access to the various sections and features of the ME/CFS Community beyond the Main Page is limited to registered members only to protect their privacy. The mission of the ME/CFS Community is to help members move beyond the challenges they face. We seek to facilitate the free and open exchange of information on ME/CFS, fibromyalgia and related illnesses among those who know the most about the true impact of these afflictions.
- This site is a treasure trove of information about all aspects of living as a person with a disability. It is designed for anyone who is homebound and for people with Myalgic Encephalomyelitis, Chronic Fatigue Syndrome, Lyme Disease, or other invisible illnesses.
Home medical supplies and equipment
- Lily has several areas of her blog devoted to obtaining home medical supplies and equipment, including how to get a scooter–with and without insurance–how to get insurance to cover things like canes, compression stockings, home modifications and even phone service.
- The women behind Pretty Sick Supply not only have a great sense of humor, they stock all the “incidentals” that can add positive things to our lifestyles. Fancy ostomy covers, jewelry that connects to a cochlear implant, canes, crutches and padding/styling options galore, compression fabric for holding you tight, and lots of other stuff you’d otherwise have to comb the internet. Who has time and spoons for that? They have things I didn’t know I needed until I saw them!
Fermented/cultured foods and beverages
Even though I had cooked for over 40 years without complaints from my family, I needed to learn new/old ways of preparing foods to maximize nutrition so that my body could begin to recover. I started with fermented, or cultured, foods.
- This was the first place I went to learn about cultured foods and drinks. I was impressed with Donna’s story of having a difficult pregnancy and feeling awful until she tried fermented foods. As Donna says, “Cultured foods, through the power of microbes and enzymes, not only help your body feel better but your mind too. I don’t go a day without these foods – they keep me healthy and happy.”
- This is another great site for purchasing culture and sourdough starters, along with how-to kits for soap making and body care. Lots of recipes and videos that walk you through the techniques you need to make your own kombucha, cheeses, sourdough baked goods and even yogurt.
- Body Ecology offers a back-to-basics approach to restoring health and vitality. The straightforward necessities we provide are all geared to one fundamental law of nature: that our digestive systems are intimately linked to our immune, endocrine, circulatory and central nervous systems. Profoundly affecting all these interlocking systems is an amazing world of benevolent bacteria: the microscopic “good guys” that must be present in your intestines for you to be healthy.
As I was becoming comfortable with fermenting, I recognized I needed more to really give my body the best raw materials possible to recover my health. This lead to learning about traditional ways of food preparation. Sarica, Naturally Living Today, was my first instructor, followed closely by Wardee from Traditional Cooking School.
- I love the name, Funky Kitchen, that Sarica called her site when we first connected. She’s expanded a lot since then. Whether it is fermentation, organic foods, acupuncture, LED light therapy, potent supplementation and herbal medicine, toxin-free products for home and body, weight optimization and cellular healing, mindfulness practices, essential oils, or healthy and balanced exercise, Sarica is there to guide you. Get her new book here. Get information on the Funky Kitchen itself here.
- Through the wealth of video lessons, Facebook live events and podcasts, I learned the “old” ways of preparing foods to retain nutrients and eliminate the anti-nutrients. Wardee has a series of lessons on a similar theme, such as making low-cost family meals, sourdough baked goods and even using the Instant Pot to cook just about anything.
- I subscribed to ATK’s magazine for years and their cookbook was my go-to before and after I got sick. All the recipes here are tested multiple times with multiple variations before a final recipe is published. I love watching their videos and the interaction between featured cooks.
- If you really want to go back to old-fashioned cooking, or if you, like me, just love to read cookbooks then follow this link for a trip back in time. The collection ranges from the 16th century to Betty Crocker’s Cookbook for Boys and Girls and includes famous French chef Auguste Escoffier’s Guide to Modern Cookery.
- How to Be Sick by Toni Bernhard
- This is a well-written, saved-my-life book that helps you deal with the frustrations, setbacks, and self-recrimination that we all feel about our chronic illness. Toni was a law professor who got ME/CFS and, like most of us, never fully recovered. She was an experienced Buddhist meditator but found she could no longer do the rigorous retreats and long meditations she once did. Instead, she used her practice to focus on Being Sick. Through truly understanding how to be sick, she found a way, even with many physical and energetic limitations, to live a life of equanimity, compassion, and joy. Here’s a video of the author.Watch how her face shows fatigue as the interview continues.
- The 36 Hour Day by Nancy Mace and Peter V. Rabins
- This was a ground-breaking work that addressed caregiving for a person with dementia when initially published in 1991 and has been updated and appended ever since. Naturally, it was required reading for my geriatric medicine classes. The book is a valuable resource and downright help for family members and caregivers to address the challenges of dementia in a loved one. At the same time, it offers help and hope so caregivers can simultaneously cope with their own emotions and needs. If you are a caregiver for someone with Alzheimer’s Disease, frontal lobe, vascular and Lewy-body dementia or the catch-all diagnosis of Dementia, NOS (not otherwise specified) you must read this book.
- This is the breakout, award-winning and Oscar-nominated documentary produced, directed and written by Jennifer Brea. Jen is about to marry the love of her life when she’s struck down by a fever that leaves her bedridden. When doctors tell her “it’s all in her head,” she turns her camera on herself and her community as she looks for answers and fights for a cure. Jen is also the dynamic (I know, a strange word to use for someone with ME/CFS) woman behind #MEAction and the Millions Missing campaign. She is one of my heroes. Unrest is available for rent on iTunes and as of this writing, June 2018, it is free to watch on Netflex.
If you REALLY want to get into gardening hardcore, then attending the Permaculture Design Course https://richsoil.com/pdc.jsp or the Appropriate Technology Course https://richsoil.com/atc.jsp or even the Peasant Permaculture Design Course https://richsoil.com/ppdc.jsp is the way to go. Just tell Paul I sent you. My username is MizEllie.
I also learn a lot from Marjory Wildcraft and her online The Grow Network. The site is full of advice and recommendations for living a healthy and sustainable lifestyle. Sure, I’ll never be able to do everything I want in this lifetime, but it’s nice to pretend and there are almost always advice and life lessons I can learn from. Here, in no particular order, are some of the information she offers.