Resources

I created a central hub of resources for people on their recovery journey from Chronic Fatigue Syndrome, Long Covid and related chronic illnesses. Many of the resources listed below did not exist (or I did not know about them) when I was on my recovery journey. 

My mission is to make things easier for people and provide hope. 

I know we are all unique and must decide what’s right for each of us. I hope you find something useful here.

1. The Unbecoming: Stories, thoughts, and inspiration on the journey of healing the mind and body, and uncovering our true selves by Lauren Giammarco. This book tells Lauren powerful story, and offers lifestyle, nutrition, sleep, and mindset wisdom throughout. I love the healing mantras she shares in this book.

2. Finding Freedom: Escaping from the Prison of Chronic Fatigue Syndrome by Raelan Agle. This shares Raelan’s entire recovery journey and her path out. It’s a very empowering and inspiring book.

3. Bird Hits Glass: A Novel by Beate Triantafilidis. This is a a fictional novel inspired by Bea’s own ME/CFS recovery journey.

4. Breaking Free: A Guide to Recovering From Chronic Fatigue Syndrome and Long Covid Symptoms by Jan Rothney. (*new*) Her book is inspired by her own recovery journey from post-viral ME/CFS (and a later relapse) and her experience helping many others. It includes Jan’s story, though is structured as a comprehensive guide to recovery. The book includes research-based explanations, neurolinguistic programming (NLP) insights, as well as practical lifestyle guidance. The book is a bit longer, but it includes summaries at the end of each chapter. If you’re in the UK, you can get Jan’s book directly from the publisher here

5. A Path Back to Life by Dr. Steven Sommer (*new*). Dr. Sommer recovered from ME/CFS after an 11 year journey. His recovery plan involves building a solid base by garnering social support, maximizing quality sleep, low GI nutrition, and an emphasis on mind-body strategies that he refers to as the ‘Rest/Activity Dance’ and ‘Defusing the Loop.’ He calls his plan ‘Micro Rehab.’ *Thanks to my Instagram buddy who recommended this book.

6. Faith Canter has four books about different aspects of her 6.5 year CFS/ME recovery journey from processing your emotions, to low-tox living, to fermenting.

7. Decode Your Fatigue: A Clinically Proven 12-Step Plan to Increase Your Energy, Heal Your Body and Transform Your Life by Alex Howard. Alex Howard runs The Optimum Health Clinic.

8. Brave New Medicine by Cynthia Li, MD. Dr. Li shares her personal recovery journey from Hashimoto’s thyroiditis, ME/CFS, and dysautonomia that left her housebound with young children. She draws upon cutting-edge science, ancient healing arts, and the power of intuition to offer a fresh perspective for doctors and patients. She discusses how doctors are trained to think, and why this needs to change. Her book includes 15 practical steps on how to heal. She was interviewed by Dr. Mr. Hyman here. *Thank you to my subscriber and friend who recommended this book.

9. CFS Unravelled by Dan Neuffer. Dan, who healed from severe ME/CFS, POTS, and fibromyalgia explains how the symptoms and dysfunction are all connected from a neurological perspective. He shares what strategies to explore and tailor to address the root, which he believes is autonomic nervous system dysfunction. The book contains a lot of practical advice and is focused on creating a robust recovery. It talks about why treatments that weren’t helpful in the past, may be helpful once you adjust your approach to the framework in the book.

E-books:

1. How to trick yourself into feeling your feelings by Vera Wilhelmsen. Vera healed from severe CFS. One key aspect was learning to process her feelings after a lifetime of emotional abuse. She shares more on her YouTube channel including Ayurveda insights.

2. Thriver, Not Survivor: How to Beat Chronic Fatigue Syndrome by Miguel Bautista. Miguel healed after 4 years of CFS which left him bed-bound and hospitalized. He shares the principles of how he got out (centered upon the nervous system and practical strategies). He also has a helpful YouTube channel where he shares bite-sized CFS recovery tips.

Note: Most of these (except Dan’s book) were published after I recovered. Nothing shared is medical advice nor meant to be prescriptive. I am just sharing for inspiration.

1Sleep Smarter by Shawn Stevenson

2The Vortex: Where the Law of Attraction Assembles All Cooperative Relationships by Esther Hicks

3. The Untethered Soul by Michael Singer

4. The Power of NowA Guide to Spiritual Enlightenment by Echkart Tolle

5. The Energy Codes by Dr. Sue Morter (The message in the beginning of the book is the most powerful stuff I’ve read on explaining why bad stuff happens to us and how to reconceptualize it. I personally skipped yoga stuff in later chapters, because it was hard for me to translate from 2-d drawings in the examples what to do.)

6. Well-Being Cards by Esther and Jerry Hicks (Not a book, an actual deck of well-designed cards with powerful reminders. They are amazing. Note: Abraham Hicks is their pen name.) 

The following books I found these after I recovered from my symptoms. Other people I know also recommended them:

7. The Presence Process by Michael Brown (I did more relaxed application of the continuous breathing, just let body do what it wanted without concern of a gap. One of my young subscribers recommended this book to me – she found success with the DNRS program and said this book was the final piece for her. Dr. Cathleen King incorporates some of his teaching into her Primal Trust program.)

8. How to do the Work: Recognize Your Patterns, Heal Your Past, and Create Yourself by Dr. Nicole LaPerla.  

9. Set Boundaries, Find Peace: A Guide to Reclaiming Yourself by Nedra Glover Tawwab 

10. The Power of Habit by Charles Duhigg

What books have you found helpful or inspiring? Email me at hi at my domain.

1. Postviral Podcast by Lindsay and Stu (amazing and useful. Each episode is focused on a core aspect of recovery from post-viral fatigue syndrome and ME/CFS.)

2. The Chronic Comeback by Phil Hadfield (recovery stories of all types from CFS/ME and other chronic conditions – I’m on there!)

3. The Cure for Chronic Pain by Nicole Sachs, LCSW (I haven’t listened, but multiple people have recommended this to me). She also has a simple journaling method to process emotions called JournalSpeak, which she sometimes talks about it on her podcast. Carly, a guest on my channel, recommends starting with Episode 160, Episode 15, Episode 33, Episode 125, Episode 37, Episode 42, Episode 45, Episode 106, Episode 107, and Episode 139. She applied Nicole Sach’s insights for chronic pain to healing from ME/CFS.

4. Being Well Podcast by Dr. Rick Hanson and his son Forrest Hanson. A few people recommended this one to me. Rick Hanson and his son talk about health and happiness through a neuroscience lens and interview other thought leaders as well. Dr. Hanson is a Senior Fellow at UC Berkeley’s Greater Good Science Center and NYT best-selling author.

5. Happy Chill Fun Time (meditation visualizations, like vacations for your brain. Visualizations are a core component of some, though not all, neuroplasticity programs).

6. Our Power is Within (inspiring testimonials from people who healed themselves from chronic illness, with neuroscience, mind-body, and self-empowerment focus.)

7. The Model Health Show by Sean Stevenson (popular health wisdom podcast featuring world experts – topics include biohacking, neuroscience, hormone health, gut health, chronic fatigue recovery, and more)

8. Rewire the Podcast with Cait Ross and Lindsay Mitchell. Cait and Lindsay are knowledgable experts on rewiring your brain to heal from chronic illness and unlock your full potential. They share inspiring, nuanced wisdom. They also interview leaders in neuroscience, health, and personal development. Cait and Lindsay are authentic, relatable and have nice voices to listen to.

9. Long Covid Podcast by Jackie Baxter. This podcast features scientists, doctors, and other health care professionals paving the way for Long Covid research and treatment as well as personal stories from fellow Long Haulers. There are some recovery stories included (see episode 32).

James’ Health Recovery YouTube channel

James fully recovered from severe ME/CFS after an 8 year journey. I don’t know him personally, but his epiphanies resonate so much with my own. (This James does not have ANY social media and is not the food blogger James or the mind body coach James.) James’ videos really had an amazing impact on my recovery. His channel is full of truth bombs and gems. His recovery centers upon creating calmness in all aspects of life, digital detox, processing emotions, sleep, diet, and mindset. It seems he moved on with his life, has a family now, and no longer vlogs.  *Update: In July 2022, he posted on his channel that he plans to start sharing again more regularly.

Raelan Agle’s YouTube channel

Raelan Agle is one of the kindest and most dedicated people I have ever met. After fully healing from CFS, she has dedicated herself to produce amazing free video content for CFS recovery while working a full-time job. 

Her channel contains lots of practical advice for CFS recovery, inspirational recovery stories, reviews of books, and various healing methodologies. I am honored to have been one of her first recovery story interviews.

Victoria’s CFS Warrior YouTube channel 

“Inspiration and encouragement for those in the battle to take back their lives from Chronic Illness – especially CFS/ME.” Victoria has an amazing CFS recovery channel. Here is one of my favorite videos: The Fine Art of Letting People Down During CFS Recovery. She is a mom and a Christian who was once bed-bound/housebound with severe CFS and shares wisdom from her recovery journey. Her videos have relatable content for everyone on the journey at all stages. She has done both holistic lifestyle programs and brain retraining programs and now lives a vibrant life. 

Vera Wilhelmson’s YouTube Channel

Vera reclaimed her life from very severe ME/CFS (3 years 95% bed-bound), severe IBS, and CPTSD from years of emotional abuse and has heartfelt, resourceful, and fun videos on health recovery, narcissist abuse recovery, and Ayurveda (food and lifestyle-based medicine based on 5,000 years of Indian history). She is currently a film-student in Norway making her dreams come true. 

She has a recent video of the spontaneous California road trip we took together, if you want to see us living life and riding a Ferris wheel.

I have learned a lot from her about Ayurveda and rediscovering my true self. Here is her website. She has an affordable e-book How to Trick Yourself Into Feeling Your Feelings: Even After Decades of Numbness and Trauma. Trauma has physiological impacts on our body, not unlike a pathogen or physical injury. 

Dan Neuffer’s CFS Unravelled YouTube Channel

Dan’s channel is the first channel I came across that shared CFS recovery stories. He shares insights and information on CFS, Fibro, POTS, post-viral fatigue, and MCS. He has his own program ANS Rewire, but also shares recovery stories from people who healed with the help of other programs or on their own.

Heal With Liz YouTube Channel

Yep, mine! I mainly share ME/CFS recovery stories and related conditions. I plan to share recovery tips, insights, and more health visualization content, too. Subscribe to stay tuned.

Other recommended ones: 

I was told Alex Howard has two helpful recovery channels. He himself recovered from ME/CFS. His Alex Howard YouTube channel contains content about the emotional aspects of health recovery and addresses themes including the inner critic, self-love, and feeling your emotions. His Optimum Health Clinic YouTube channel is focused on ME, CFS, and Fibromyalgia recovery. 

Miguel Bautista has a CFS Recovery YouTube channel where he has many bite-sized short videos with CFS recovery tips with a brain retraining and lifestyle lens. Miguel came on my channel and here is our interview.

1. Faith Canter’s website – She healed from CFS/ME 8 years ago after a 6.5 year journey and shares wisdom and free recovery resources from digestive health, low tox-living, and self-love. If you subscribe to her website, she’ll send you her free 30-day CFS recovery program.

2. A Path to Healing by Dakota Knight – He is a dad who healed from ME/CFS, a journey that took him years and cost him a small fortune. He made a promise to God that if he ever recovered, he’d share how he did for free for other people on the road to recovery from CFS, ME, and POTS. On his website he shares a free PDF eBook detailing the steps of his recovery and resources including informational downloads, YouTube videos he found helpful, and visualization audios.

3. Rebecca Tolin’s website – Rebecca, a former science TV journalist, healed from CFS after 13 years and now helps others. Her website contains informative neuroscience-based content on the mind-body connection inspired by the work of Dr. John Sarno, Peter Levine, and Dr. Howard Schubiner. 

There are links to her interviews where she shares her powerful CFS recovery story and TMS insights (including her interview with me and also Raelan Agle). If you subscribe to her site, you’ll get a free somatic meditation. She does not send newsletters very often, but when she does they are so well-written and put together.

4. Carly’s website. Note: Carly’s is a professional trainer/coach for endurance runners and cross-country skiers. So when you go to her main website and see training plans, that is for her athlete clients, not people healing from CFS. 

That said, her website also includes a lot of free content specifically about her own CFS and dysautonomia recovery journey (which was triggered by Lyme and overtraining) and the things that helped / didn’t help her. My interview with Carly is here.

5. Living an Everyday Kind of Life by Ali Kempson. (A friend told me about her blog.) Ali had ME/Chronic Fatigue Syndrome for over 12 years. For many years, it was mild (she could work part-time), and then she had a bad setback. Then she found an alternative modality and things changed. Her supportive blog shares insights from her journey into living well with and recovering from ME/CFS. She has a great post “You can’t push your way to recovery” hereShe recently shared her own top 3 audio/video + written ME/CFS resources. She shared her recovery story on Raelan Agle’s YouTube channel.

6. The Mechanical Basis of ME/CFS by Jeff Wood – Jeff pioneered the theory of cranioservical instability as a root cause for ME/CFS. He himself got spinal surgery by a world expert to address his extreme craniocervical instability, which resolved his condition. 

He shares his story and resources on his blog. (Note: The surgery does not come without risks.)

In my personal opinion (not medical advice), if something is poking into your brain stem, it’s probably going to be harder for your body to send a message of safety to your nervous system which is important for healing.

No modality shared is a recommendation. Nothing is medical advice. This is for information only. All people, websites, and programs listed are independent of this website.

1. Nadine’s ME/CFS recovery site: Eine ME/CFS Genesung https://eine-mecfs-genesung.de (“An ME/CFS recovery”)

Note: This website is fully in German.

Deutsche: Auf dieser Webseite teile ich meine vollständige ME/CFS Genesungsreise, die annähernd 6 Jahre gedauert hat und voller Irrungen und Wirrungen war – ich habe weder eine Wunderpille noch ein Allheilmittel entdeckt.  Mein Weg bestand aus ganz viel Trial & Error, Selbstversuchen, immer wieder aufrappeln und ein ewiges auf und ab, bis sich schließlich immer mehr Besserung einstellte.  Alle Infos sind frei zugänglich für jedermann – kein Abo, kein Programm, keine Therapie, keine Beratung und auch kein Coaching.

English translation (via Google Translate): “On this website, I am sharing my complete ME/CFS recovery journey which has spanned 6+ years and has been full of trials and tribulations – I have not found a magic pill or cure-all. My path consisted of a lot of trial & error, self-experiments, getting back up again and again and an eternal up and down, until finally there was more and more improvement. All information is freely accessible to everyone – no subscription, no program, no therapy, no advice and no coaching.”

2. Martina’s ME/CFS recovery inspiration site: Ich Werde Gesund https://www.ich-werde-gesund.com (“I get healthy.”)

Martina is an amazing and brilliant woman has a recovery focused website for German speakers. Martina, who has a doctorate in human biology, has been on the road to recovery from CFS since 2009. She has significantly improved her condition and her mission is to give hope to others. 

She shares clear information on what is ME/CFS, recovery strategies, and has started to feature recovery stories in German with German-speaking guests. 

Note: She includes English translations for parts of her website.

1. List of ME/CFS medical doctors in the USIf you are looking for a medical doctor, a thoughtful person named Erica Verillo (not associated with my blog in any way) put together this list. 

2. Dr. Neil Nathan who was a guest on The Chronic Comeback podcast has a list of medical practitioners he recommends here who specialize in treating chronic illnesses including CFS. Note: He does not categorize them, but it appears his list includes functional doctors, osteopaths, Lyme and mold speciality clinics, POTS specialists, integrative doctors and more. He has retired from active practice, so can’t order tests himself, but consults for information purposes.

The two lists above are not full lists of all ME/CFS doctors, nor meant to be recommendations. It is for informative purposes only.

3. RHTM health is a Long Covid Telehealth clinic working with people in California, Arizona, Florida, Washington state, and Oregon. They have medical experts, dietitians, and mental health therapists. It was founded by a doctor who had and recovered from ME/CFS. There is currently a waitlist.

4. In the UK, there is the Optimum Health Clinicwhich includes integrative medicine, nutrition, and nervous system / emotional support for people with ME, CFS, and Fibromyalgia. The founder Alex Howard is a therapeutic coach and he works with a team of other professionals.

If you would like to recommend someone, please email me at hi at my domain.

Tips for navigating medical care (not medical advice): 

1. Most regular doctors are not equipped to diagnose ME/CFS or Long Covid. Getting a proper diagnosis and discovering any healing blockers (nutrient deficiencies, environmental exposures, parasites, etc.) from an integrative doctor or ME/CFS specialist can often be helpful. 

Note that it’s very common to hear there is “nothing wrong” with you from the standard medical system and “everything wrong” from the integrative//naturopathic/functional medical system. If a doctor tells you “it’s in your head” and dismisses you, find a new one. If a doctor says “you’ll have this for life” and makes you feel scared, also consider finding a new one.

2. Many specialists do not take insurance and are very expensive. When inquiring about costs, don’t just ask about initial costs (ie for the initial appointment and testing), but rather ask about the likely findings/outcomes and the cost of the treatment protocols for those findings.

3. Some people with ME/CFS may not be able to easy handle treatment recommended by these clinics (medication, herbs, supplements, etc.) due to their body’s hypersensitive state. Sometimes, people get worse with certain treatments before they see improvement. If your body rejects treatment, there are other things you can do to support your healing. Read the stories on my blog as a place to start.

Resources and clinics supporting Long Haulers.

1. RHTM health is a Long Covid Telehealth clinic working with people in California, Arizona, Florida, Washington state, and Oregon. They have medical experts, dietitians, and mental health therapists. It was founded by a doctor who had and recovered from ME/CFS. There is currently a waitlist. 

2. Long Covid Podcast by Jackie Baxter. This podcast features scientists, doctors, and other health care professionals paving the way for Long Covid research and treatment as well as personal stories from fellow Long Haulers. There are some recovery stories included (see episode 32).

3. Dr. Boon Lim, one of UK’s top-rated cardiologists, shares helpful information and useful resources about the connection on Long Covid, the heart, and the autonomic nervous system. He’s a POTS expert and the information he shares seems to also address the root of ME/CFS.

– Check out Dr. Lim’s interview here on The Long Covid Podcast
– Here is a helpful PDF from Dr. Lim: Long Covid Autonomic Dysfunction Advice for Patients (Extremely useful. This would have been helpful for me in 2016 at the onset of my post-viral illness.)

POTS, or postural tachycardia syndrome, in layman’s terms, is rapid heart-beat and other symptoms when you go from lying to sitting or standing. There is evidence that both ME/CFS and POTS conditions are types of dysautonomia, or dysfunction of the autonomic nervous system. Many people with ME/CFS also have POTS.

1. POTS UK is a great resource for information about postural orthostatic tachycardia. According to their website: “POTS is due to an abnormal response by the autonomic (automatic) nervous system and is characterised by orthostatic intolerance (the development of symptoms when upright that are mostly relieved by lying down). Symptoms include palpitations, lightheadedness, fatigue, sweating, nausea, fainting and headaches, and are associated with a persistent increase in heart rate from the lying to upright position.”

2. Stop Fainting, is a free website by a committed, experienced, and passionate core group of clinicians that includes a Consultant Cardiologist, an electropysiologist, and clinical nurse specialists that provide the syncope and tilt test services at the Imperial College Healthcare NHS Trust in London (UK’s first Academic Health Science Centre). Many of their patients have Long Covid and/or POTS. Dr. Boom Lim, the consultant cardiologist is also thought-leader in Long Covid treatment (see previous section).

Nutritionists who specialize in helping people with ME/CFS:

1. Lauren Windas is a UK based certified nutritionist, naturopath, and NLP practioner, who healed from ME/CFS herself. She has a 1-2-1 nutrition clinic. She offers free discovery calls. She also has an 18-week online group therapy mindset coaching option for people with ME/CFS consisting of 9 fortnightly video calls, where she shares her recovery tools, there are group shares, a q&a, and she ends with a meditation. Here is her story on Raelan Agle’s YouTube channel. 

2. Jo Foster is a UK based registered nutritional therapist who offers functional testing and creates personalized nutrition and lifestyle plans for her clients. She herself healed from ME/CFS after 7 years. She offers video calls and secure instant messages for support between appointments. Here is her story on The Chronic Comeback podcast.

3. The Optimum Health Clinic, an integrative clinic for supporting people with ME/CFS (UK based, but does Skype consultations worldwide), also has a dedicated nutrition staff.

Is there anyone you would recommend? Reach out and me know.

This is for information only and not medical advice. People listed are independent of my website.

Note: These courses were created after I healed. Just sharing options.

Affordable online pacing programs:

1. Fatigue Reset: Crack Pacing self-study course by fatigue coach expert Pamela Rose (self-study). Cost: 49 pounds.

2. Three Week Fatigue Rescue also by Pamela Rose. This is a group course via Zoom with cohorts of about 16 people, run throughout the year. You can opt to just watch the recordings. Unlike her Fatigue Reset course which solely focuses on pacing, her Three Week Fatigue Rescue course includes other topics such as sleep, nutrition, movement, and how to calm your nervous system. Cost: 139 pounds. (Participants who take her Fatigue Reset self-study course get a discount.)

3. Raelan Agle’s Lifestyle Pacing: Optimizing Energy and Achieving Your Goals skillshare course. Cost: Free for first 30 days, then Skillshare charges you for a subscription (which gives you access to other courses on the platform).

Individual coaches:

1. Pamela Rose. Fatigue coach. She is typically booked up 1 to 2 months in advance for individual coaching (why she created an affordable self-study and group option). She herself fully recovered after 7 years of ME. She has helped hundreds of clients with her proven strategies. For 1-2-1 coaching, she customizes things for each individual. Pamela is based in the UK and offers Zoom sessions.

2. Jo Thomas. Fatigue coach. She herself reclaimed her health from POTS that gave her disabling fatigue. She has 20 years of experience as an NHS nurse and combines her western medical training, holistic knowledge, and NLP certification to help others. Jo is a mum based in the UK and offers Zoom sessions.

The people and programs listed above are independent of this site. Me including them is for information only and is not medical advice. I’m just sharing these to provide options for consideration and am receiving zero incentive to do so. 

Movement clinics:

ME/CFS is marked by a failure to properly recover from stress and exertion. It is not deconditioning (that is a downstream effect)

There has been a history of multiple clinics throughout the world with uninformed practitioners who push people with ME/CFS, causing their condition to get worse. I would advise against seeking out any type of physio clinic without being informed about their track record and their experience with helping people with ME/CFS. And also be aware at each clinic, practitioners vary by skill and experience. If you don’t feel like someone is a fit, I encourage you to trust your gut.

There are some clinics who seem to grasp the complexity of the condition, who factor pacing, calming the nervous system, and supporting the body’s repair mechanisms. 

In the Melbourne, Australia there is the Active Health Clinic for people recovering from ME, CFS, POTS, EDS, and Fibromyalgia which helps people pace and stabilize their condition, improve their sleep quality, and also gently and very gradually incorporate movement. This is not a recommendation or medical advice, I just heard about it from someone I trust, and am listing it here for consideration. 

Do you know of any good movement clinics or coaches who understand the condition? Note: Most of the programs I mention in the next toggle factor movement, in a holistic context.

Gentle movement support for chronic pain:

A portion of people with ME/CFS also have Ehlers-Danlos Syndrome (EDS) or hypermobility and chronic pain associated with it. And many people with ME/CFS have the symptom of chronic pain whether or not they have EDS/hypermobility.

A friend in the community Rach recommended The Zebra Club, which is an app by Jeannie Di Bon, that provides a friendly and supportive community for people around the world living with chronic pain caused by EDS or hypermobility and guides people through rehabilitation. It contains videos on guided relaxation, breathing, sleeping tips, stability, gentle chair exercises, and gentle pilates (much of which is lying down). Jeannie has a YouTube where she shares this content for free. 

Awareness and community support charity:

LiveOn.org is a US based non-profit community established to support the millions of people chronically ill with multi-systemic diseases, including ME/CFS, long-COVID, POTS, EDS, MCAS, Chronic Neurological Lyme, and other illnesses that affect the brain, nerves, muscles and vital organs–manifesting as chronic pain, cognitive dysfunction, and fatigue. Through awareness, education, personal stories, and digital connection, they strive to help people with chronic illness, their caregivers, and the healthcare community come together to find solutions that shorten the journey to a better quality of life. They have a wonderful newsletter and Instagram with supportive content. It was created by a father and son, Scott and Jakob Kempema. Jakob’s mission is to connect and empower young people like himself going through chronic illnesses to a path of acceptance, purpose, and hope.

Disability testing charity:

The Workwell Foundation is a US charity that provides disability evaluations for people with fatigue related illnesses, including ME/CFS. They have one location in Flagstaff, Arizona and another in Ripon, California 1.5 hours east of San Francisco. They do a 2-day cardiopulmonary (CPET) exertion test to measure the severity of the cardinal symptom of ME/CFS, which is post-exertional malaise.

In my case, I could rely on my partner when I had to quit my job to support my recovery. I am glad I didn’t have to do a CPET test to overexert and crash so I could prove I had ME/CFS to collect disability to pay the bills. I know there were days I didn’t even have the stamina to even walk to my car, let alone do an exercise test. While doing such a test can help qualify one for disability, I believe there are medical specialists who go the extra step to help people qualify for disability (see medical specialists toggle above). The process of qualifying for disability in itself (particularly in the US and the UK) requires going through many hoops, and I’m thankful I didn’t have to do that with mental and physical energy I didn’t have at the time. I’m hoping there will be an easier diagnostic marker test soon and more support to help people.

They also have free video content on pacing.

Research charity:

OMF. Since 2012, The Open Medicine Foundation (OMF) has raised over $36 million to fund open and collaborative research and improve health care for millions with multi-system chronic, complex diseases including as Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS), Long COVID, Chronic Lyme Disease, and Fibromyalgia. They’ve facilitated and funded 6 research centers across the globe dedicated to diagnosing, treating, and ultimately preventing these related chronic, complex diseases. ME/CFS affects over 1 million people in the United States alone.

My hope for ME/CFS support:

I am excited about the research going on now, and what it could mean for the future. That said, I really hope that more money is invested into supporting people today so they can afford help and resources for their recovery. I think many people could greatly improve their outcomes if they had financial help early on to quit their job. And many people who are in solitude with ME/CFS could greatly benefit from physical help around the house and the company of helpers. Parents with ME/CFS could really benefit from help, too.

Holistic healing online programs for CFS recovery:

The programs below include mindset, diet, sleep, lifestyle, and factor movement and your baseline. All are primarily delivered in the format of online videos. All programs listed below specialize in CFS and related and downstream conditions and were created by people who themselves had and healed from CFS/ME.

Note: This is not based in order of preference nor meant to be prescriptive. 

1. The Chrysalis Effect by Elaine Wilkins (Includes a 30 minute call with a trained practitioner, 8 modules with video and audio content delivered weekly via email, access to live and recorded webinars, and a private Facebook forum. Cost: 27 pounds/month (~ $32 US), first 30 days free. [The NHS is currently doing a study on its efficacy.]

2. CFS Health by Toby Morrison (Focuses on core aspects of recovery: Baseline/Movement, Sleep, Nutrition, Mindset/Communication/Boundaries/Goal Setting. Also includes access to an active private Facebook group while you’re a member with other members and the leaders.) Cost: More expensive. $500 AU (~$340 US) per month for a minimum of 6 months.

3. ANS Rewire by Dan Neuffer (Also includes core brain training component and meditation library.) Cost: $470 AU (~ $320 US) for 2-year license.

4. Alignment Recovery Program by Daniel van Loosbroek. Cost: Donation based. Includes meditations, pacing, diet insights, neuroplasticity, hypnosis, emotional healing, and more.

5. Relief & Transformation: Managing Long Covid and ME/CFS Course by Lorrie Rivers. Her website has a field to sign up for the waitlist. She is the creator of the Long Covid and ME/CFS summit.

Most of these programs have either multiple free videos with relevant content to watch before purchasing the program and/or YouTube channels where they share a lot of information.

Note: The only program I tried listed above was ANS Rewire. I briefly talk about my experience in my interviews with Caitlin and Katie who shared their recovery stories on my YouTube channel.

Holistic healing coaches:

Chris Jamieson offers one-on-one holistic healing guidance for people on the road to recovery from CFS (he himself healed from CFS). He’s a great guy based in Melbourne and supports people from all over the world. He focuses on diet, sleep, baseline/movement, and mindset/meditation. 

See more coaches (of all types) on my CFS Recovery Coaches page.

The people and programs listed above are independent of this site. Me including them is for information only and is not medical advice. I’m just sharing these to provide options for consideration and am receiving zero incentive to do so. 

Brain retraining (also called brain training, brain rewiring, limbic system retraining, neural retraining, and neuroplasticity) programs offer a top-down approach to calm and regulate our nervous system and somatics is a more bottom up approach. This is not meant to be prescriptive.

Please read this post before considering a brain retraining program.

Note: They are not listed based in an order of recommendation. It’s for information only on options that are out there, if this is a modality you’re considering. 

Brain retraining programs:

1. Dynamic Neural Retraining System by Annie Hopper. 
– I wrote about my experience with DNRS here
– Lorelai, a guest on my channel, shared their story and experience with DNRS here. (note: Lorelai’s former name was Astra)
 
2. Primal Trust by Dr. Cathleen King (also includes somatics, polyvagal techniques, parts-work, values discovery, learning to be imperturbable, and a community). Dr. Cat shared her story on my YouTube channel.
 
3. Gupta Program (include parts work and holistic healing advice) by Ashtok Gupta. 
– Here is an interview with him on The Puzzle of Healing channel. 
– Here’s a Q&A with Ashtok Gupta on The Chronic Comeback channel.
 
4. ANS Rewire (also includes diet, sleep, how to approach movement, and lifestyle recommendations) by Dan Neuffer. I listed this in the holistic section, too.
– Q&A with Dan on Raelan Agle’s channel.
– Dan shares his own story on The Chronic Comeback channel.
 

5. Vital Side by Lindsay Mitchell. She has three programs with a community aspect. Her Vital Side Rewire Membership is a comprehensive brain retraining program for beginners. She has two newer programs with Bianca Spears. Elevate: Brain Retraining 2.0 for people to enhance their brain-retraining practice and Regulation Station has tools to incorporate in your day for maintenance. Lindsay shared her story on The Chronic Comeback.

6. The Lightning Process by Dr. Phil Parker. This is one of the original brain retraining programs. Several of the other program creators went through the Lightning Process themselves. It is taught by individual trained practitioners 1-2-1 or a small group of 2-5 people. Practitioners include Jodie Goss, Ian McCleary, Teodora Pile, and Laura Stoney (and more).  Jodie shared her story on my channel. Laura Stoney shared her story on The Chronic Comeback.

7. Reset to Thrive by Jan Rothney (also includes polyvagal techniques, breathing techniques, and lifestyle insights for a sustained recovery). This 12-module video course is a supplement to her comprehensive guidebook Breaking Free: A Guide to Recovering From Chronic Fatigue Syndrome and Long Covid Symptoms. Jan used her teacher’s pension to create her new book and video course. Interview with Jan coming soon, who healed from ME/CFS and a later setback.

8. Mind Body Rewire by Jenny Peterson (includes calming the amygdala, brain retraining, memory reframing, and subconscious patterns work). Individualized coaching program, customized from each person based on symptoms. Jenny shared her story on my channel.

9. CFS Recovery by Miguel Bautista (cohort based group program with an active group forum and group coaching, also includes holistic advice). Miguel shared his story on my channel.

10. Elevate Your Inner State by Katie Nickerson. New 4-week group course for brain retainers to release self-criticism, perfectionism, and other protective patterns and elevate their state. 

11. Alignment Recovery Program by Daniel van Loosbroek (13 DIY modules includes holistic advice, emotional healing, and more). It’s a free – donation based program. I listed this in the holistic section, too. Daniel shared his story on Raelan Agle’s channel. 

12. Nervous System Reboot by James Wilson (also movement / Qigong, inner child work, and breath work). James shared his story on Raelan Agle’s channel.

13. Create Your Rewire by Lori Clemmons (next group program starts July 29, 2022).
 
14. Re-Origin by Ben Ahrens (online program with group coaching option). Ben recently shared his story on Raelan Agle’s channel.
 
15CFS School by Jen Mann and Karden Rabin (also includes somatics, vagus nerve stimulation, nervous-system informed movement insights, and trauma work). Offers self-study and group options. Jen shared her story on my channel.
  

Somatics programs:

1. Rebecca Tolin has a 10 week course (somatic tracking and experiencing with brain retraining elements) 

Rebecca shared her story on my channel.

2. Irene Lyon has a 21-day self-study course and a 12 week course (nervous system regulation and somatics)

3. Sarah Jackson has a group coaching program called Restore that teaches somatics, trauma work, and how to implement brain retraining factoring emotions. Her program has recently exploded in popularity.

Detailed analysis of these brain retraining and somatics programs, holistic recovery programs, and 7 others (working on this with Lindsay from the Postviral Podcast), coming in November 2022. We’ve been working really hard on this and interviewed many people.

Subscribe to my newsletter to stay posted on when our programs guide is ready.

Individual coaches:

I am working on a list of individual 1-2-1 brain retraining and somatics coaches. Three are already included on my coaches page. Do you have a favorite coach?

Having a healthy relationship with social media:

On my journey, I actually avoided Facebook groups, got off the forums and Twitter, and wasn’t on Instagram. This was because I wasn’t aware of an uplifting healing-focused community, and also because reducing screen time was so helpful for my brain and wellbeing. Here is a post I wrote about reducing screen time.

For others who are keen to find a supportive community and hope, Instagram is a good place. However, it’s important to schedule breaks, be mindful of the time you spend, and try to avoid comparison. We all heal at our own pace. 

Furthermore, if you go on Instagram, you’ll begin to see many different healing modalities presented. Don’t feel you need to do everything everyone else is doing all at once. One day at a time. And, as I’ve said before, subtraction is often more important than addition when it comes to recovery. If you are looking for some inspiring accounts to follow, here are some to consider.

Inspiring and useful accounts to consider: 

People who healed from CFS/ME and related conditions, who share helpful and inspiring content:

1. @Raelan.Agle (CFS recovery inspiration & more – includes video clips from interviews of people who recovered). You may have found me from my interview on her channel. Raelan is such wonderful person, and her content is amazing.

2. @CFSHealth by Toby Morrison (general holistic CFS recovery advice on sleep, pacing/movement, nutrition, boundaries, and mindset – note: he is promoting his program)

3. Dan Neuffer @danneuffer.cfsunravelled (CFS, fibromyalgia, and POTS recovery stories and inspiration with a nervous system focus. He has his own program but shares stories outside his program, too.)

5. Chris Jamieson @healingwithrocdoc38 (CFS recovery inspiration). Was on my YouTube channel.

6. Pamela Rose, @MyLifeRescue (After she herself healed from ME, she became an expert pacing and lifestyle coach for ME/CFS and other fatigue-related conditions). Shared her story on my website.

7. Alex, @HealWithAlex

8. Carly Outside The Box @carlyoutside_thebox. (Sharing her life.) Was on my YouTube channel. 

9. Lauren Giammarco @heartbased_healing (wrote a book about her CFS recovery journey). Was on my YouTube channel.

ME, CFS, and post-viral illness awareness and support:

1. Live On @LiveOnOrg (ME and post-viral illness awareness non-profit with a supportive, compassionate, helpful, and hopeful lens)

2. @PostviralPodcast (Instagram account of Postviral Podcast which contains useful insights for ME/CFS/Long Covid warriors) by friends Lindsay Vine and Stu)

Neuroplasticity and somatics focused accounts for chronic illness recovery:

All accounts listed are people who recovered from chronic illnesses themselves. 

Keep in mind, I know more of these accounts because neuroplasticity was one of the methods that helped me. This is not implying people should only (or even should) approach recovery from a neuroplasticity or somatics focus. Just sharing in case it’s useful. These specific accounts share a lot of free tips, information, and/or inspiring messages. 

1. Jennifer Mann, @jcamylee (somatics, breathwork, brain retraining, and more with CFS recovery focus). Was on my YouTube channel.

2. @KardenRabin (humorous and incisive posts on healing trauma, mind-body connection, and more)

3. Lindsay Mitchell, @MyVitalSide (brain retraining for chronic illness recovery). Was one of my guides, note: no longer does 1-2-1 sessions with people who aren’t in her program.

4. Vanessa, @The_Grateful_V (neuroplasticity and certified bereavement guide, shares healing wisdom for chronic illness). One of my personal favorites. Was on my YouTube channel.

5. Dr. Cathleen King, @primaltrust_drcat (brain retraining, somatics, and transformation focus for chronic illness recovery). Was on my YouTube channel.

6. Sarah Harvey, @iamsarahharvey (mind-body and somatic healing focus for women with chronic pain and other chronic symptoms)

7. Sarah Jackson @sarahjacksoncoaching (tips to release stored trauma, somatics practices, and brain-rewiring insights. She includes her faith in some posts.)

8. James Wilson, @TheMindBodyMan (mind-body insights, breathwork, and self-compassion for ME and other chronic illnesses). Note: James does not label himself as ‘healed’ which he explains in a pinned post. 

9. Alyssa, @LetsTrainTheBrain (brain retraining and self-help tips for chronic illness recovery)

10. Jenny Peterson, @TheMindBodyRewire (mind-body focus, subconscious patterns)

11. Larissa Joy, @beautifulvandalism (inner child healing & timeline hypnotherapist, her account doesn’t focus on promoting her business, it’s more her living her life). Was one of my guides.

12. Re-Origin by Ben Ahrens, @reorgin_official (practical, neuroscience-based brain retraining tips for chronic illness recovery, also features guest experts)

Boundaries, stress-reduction, and general mental health focus (not CFS focused, but in case helpful to anyone):

1. Dr. Anancia Stafford, @drstafford_ (general psychology insights, with focus on relationships)

2. Sophie Scott, @sophiescott2 (professor who shares stress reduction and burnout prevention tips with nervous system focus, boundaries advice, and more)

3. Dr. Nedra Glover Tawwab, @nedratawwab (therapist & bestselling author on boundaries – I found her book very useful.)

Note: I am currently holding off on including primarily diet focused accounts, because diet is not a one-sized-fits-all, and I do not want to imply there is one right diet for everyone at every stage. 

Nothing I share is medical or health advice. By listing these accounts, I’m not implying I endorse any method they share. Just sharing for information and inspiration.

1. CFS Warriors Academy Facebook Group: This is an encouraging community for people on the road to recovery from CFS centered on healing is possible. There are mentors (people who have healed) who share helpful info, too. It is not super active, but there is good content.

Most CFS Facebook support groups I’ve found, while contain many supportive people, do contain a lot of people in panic mode about scary symptoms and a few loud, active people people who don’t believe recovery is possible. For me these groups were helpful in the very beginning to know I wasn’t alone, but got to be very stressful and sometimes gave me a bit of PTSD, so I had to leave. 

Do you have any recommendations of helpful and uplifting CFS recovery focused Facebook groups?

Note: I personally recommend reducing social media and screen time, but am sharing in case this is helpful.

This is not meant to be prescriptive and is not meant to suggest brain retraining (also called brain rewiring, brain training, limbic system retraining, neural retraining, and neuroplasticity) is key for CFS recovery. It is not the right fit for everyone and timing matters. 

This just a list of options for people doing or very interested in brain retraining looking for community. Some are ME/CFS specific, others are not.

1. Neural Retraining Friends 

This is an active group for brain retrainers. It is not CFS specific, but also other chronic conditions driven by a maladaptive stress response like food sensitivities, chemical sensitivities, POTS, MCAS, chronic pain, and many more.

2. Neural Retraining Tools, Techniques, and Tips with Lori Clemmons

This is apparently a gentle and useful group for encouragement and support others for people who practice neural retraining. It is not condition specific but includes people healing from CFS, POTS, MCS, environmental sensitivities food sensitivities, and more. Lori Clemmons has a new group-program called Create Your Rewire which started July 29, 2022. I’ve never met her, but 3 separate people have told me she is a wonderful coach.

3. ME/CFS Neuroplasticity and Parasympathetic Repair

This is a group for brain retrainers on the road to recovery from ME/CFS.

4. MECFS Explored – ME, CFS, Fibromyalgia & Long Covid Recovery 

This is a group run by Simon Pimenta, who himself recovered from ME after 8 years, for people with ME/CFS, fibromyalgia, and post-viral illness exploring brain retraining. He also has a lot of free information on his YouTube.

5. Rewiring Your Wellness Facebook Group

This is a group for people experienced with brain retraining (some are more new, others are very experienced). It’s not condition specific. It is not for troubleshooting symptoms or struggles, but offers insights and encouragement. The creator of the group Ashley runs an annual Zoom retreat with speakers who share their journeys and insights. She has a free Rewiring Your Wellness blog with guest insights from experienced brain retrainers (several of whom healed from CFS and more) and info on community WhatsApp groups to connect with other brain retrainers.

6. Christian Brain Rewire for Whole Health Restoration 

This group was started by three Christian women who’ve overcome decades of chronic illness. It combines neuroscience/mind-body principles with biblical healing principles. I myself am not very religious, but I fully respect people who are and am the type of person who values other people’s values. One of the admins Stacey shares her healing journey from fibromyalgia and other chronic conditions and the resources she found helpful here

7. Brain Rewiring for Health and Happiness 

This rapidly growing private group was created by the creators of Limbic System Rewire, Brooklyn and Nick Hanna after she healed from Lyme, Mold Sensitivity, CFS, SIBO, and extreme food sensitivities. It’s for people who are interested in using concepts of neuroplasticity and brain rewiring to overcome chronic symptoms.  This group includes references to God. The creator shares a lot of free content on YouTube.

1. ZeroWater filter (does the job if you have decent local water)

2. AquaTru water filter (more expensive, works even if you have really bad local water)

3. ECOS dish soap

4. Puracy dishwasher detergent pods

5. Green Pan or Caraway for non-stick eco-friendly pots and pans

6. Air Doctor (expensive) for air purification (I think Dr. Will Cole, a popular integrative MD, has a major discount if you search his Facebook page for the code. If you go to Air Doctor’s website and have cookies enabled, you may a retargeted ad with a large discount a week or so later.)

7. Germ Guardian for air purification (a lot more affordable, does the job)

You can go to EWG.org to research the eco-friendly rating of many popular household and personal products.

My experience with supplements:

If you are constantly searching for supplements, you are not alone. This was me for the first 2.5 years of my journey. I’d spend my days googling for people with the symptoms I had to find what supplements helped them. This lead me to spend many thousands of dollars on premium supplements, Amazon supplements, herbs from Africa, and almost poison myself by eating elderberries (you’re not supposed to eat the actual berry).

Supplements gave me temporary boosts. They also helped me cling on before I discovered the things that would ultimately heal me, but they weren’t the way out for me.

There was long time I was taking mountains of supplements (around 40 per day) including an expensive multivitamin, methylated B vitamins, D-Ribose for a few months (the effect wore off after a while), glutathione, Standard Process brand Echinacea from my acupuncturist for temporary immune support, astralagus for spleen (contra-indicated for high blood pressure) – note: I took some randomly one day after I healed and my body didn’t like it anymore, olive leaf extract (I had so much of this but I think the effect wore off), CoQ10, digestive enzymes, probiotics, Carlson’s cod liver oil (proceeded to reduce vitamin A) with vitamin D and Omega 3’s, black radish and more. I once tried taking licorice, since it was a popular one mentioned by several bloggers for antiviral properties, but I had a bad reaction (heart / head / blood pressure wise). I took herbs for parasites at one point. 

^This is not to encourage you to go out and get these or not get these, this is more to show that I was once there.

After reducing stress (all forms: physical, mental, emotional, environmental) and doing a neuroplasticity program to to support my nervous system (read my story), I gradually got off them over several months. In my opinion, when my nervous system was in a parasympathetic rest-and-digest healing state, my body was able to much more easily digest and absorb nutrients from food. But there was a long time it wasn’t.

It seems like 90-95% of people with chronic illness, other stuff is required than correcting deficiencies/the right herb (though I have heard of a few cases where this did the job.) Also consider for many people the stress of supplements can actually cause setbacks. Specifically, the mental stress of trying to figure out the right ones or the stress on the body of all the supplements. That said, roughly about half of people who recover find some supplements helpful. 

Some supplements that helped me:

Magnesium was particularly helpful for me and is the only one I continue to take daily. Magnesium in our soil has declined by 90% in the past 60 years. I also take Vitamin D in the winter. Here are the ones I found helpful.

Pure Essentials – Magnesium Glycinate. This type of Magnesium helps our neurological and musculoskeletal system and is slower absorbing. (This is just the Amazon link. It is not an affiliate link. I never plan to personally make money off supplements.)

Plexus BioCleanse – which contains Vitamin C and Magnesium Oxide. Magnesium Oxide causes the body to release water into your colon for easier digestion if you run slow. (Note: This is my friend Aurora’s ambassador link. Here is Rorie’s gut health story.) I also used Plexus ProBio5 – a probiotic with 5 strains and enzymes. Note: People often find taking certain steps to heal their gut first to be helpful before adding probiotics.

Pure Essentials – Zinc (for temporary use to support immune system). It comes in 15 mg and 30 mg. Note (not medical advice): It apparently is not recommended to take daily high amounts of Zinc as this can disrupt the balance of other minerals that are important for our health (including Magnesium, Copper, Iodine, and Selenium).

Friendly reminder: Nothing I share is medical advice and we are all unique. Consult a trusted medical professional before trying any supplements and listen to your gut. Be aware that supplements are not regulated in the US. Also be aware that many professionals get kick-backs on supplements they sell. 

How to determine your deficiencies: 

Licensed medical professionals can order tests to identify deficiencies. Naturopaths, integrative doctors, and functional medical doctors are often more familiar with these than regular doctors, and what the ideal range is. 

In the US and some other countries, you can now order test kits from companies like LetsGetChecked and EverlyWell to test for certain deficiencies without a doctor’s order or having to go into a lab. You basically prick yourself and mail the kit back to their lab in a prepaid mailer. You can use my friend Raelan Agle’s LetsGetChecked discount code RAELAN for a 25% discount on your entire order.

1. General Well-Being meditation by Esther Hicks. 

Guided meditation on letting go of resistance. I often listened to it before bed and during difficult times physically

It is a downloadable audio track that comes with: “Getting into the Vortex: Guided Meditations Audio Download and User Guide.” Get it here. Once you get the guide (Kindle or book option), there are simple instructions to download the audio tracks. Or you can listen to it for free on YouTube here. I recommend getting the audio file since YouTube can be distracting.

2. Manifest Your Deepest Desires by Melissa Ambrosini on Insight Timer. Listen here.

Manifestation and embodiment guided meditation. Great for mornings. I listened to this a lot on my upward trajectory.

3. Happy Chill Fun Time podcast on Spotify, iTunes, and more. Listen here.

Calming and joyful visualization meditations. The podcast creator Holly did the DNRS program. I absolutely love Holly’s calming voice and vivid joyful and peaceful visualizations. 

4. Two minutes to shift your state by Vanessa (The Grateful V). Watch here.

Vanessa also shares wonderful wisdom on her Instagram

The meditation resources below I learned about from others:

5. Daniel van Loosbroek, who himself healed from ME/CFS, has a library of free meditations. Listen here.

6. Lori Clemmons has lovely free guided meditations on her YouTube channel. Watch here.

She also has three courses that included meditations with a neuroplasticity element, including a free course. You can find them here.

7. Jim Prussacks has multiple guided somatic tracking meditations on his YouTube channel.

Several people I know have said this is a good one: Part 2: Somatic Tracking Practice/Expression for Chronic Pain/Symptoms Watch here. 

Friendly reminder: These resources are for information only. They are not an endorsement. Nothing on my website is medical advice. 

Financial disclaimer: I don’t charge anyone to be featured on my website or other channels. I have two affiliate links on my entire website (things that genuinely helped me) that cover a fraction of my website maintenance costs. I just wanted to present a bunch of options together in an easy to view way, to spare people from traversing though Google and random forums for countless hours like I once was.

Have any favorite health recovery resources? Or would you like to see more resources in a certain area? Email me at hi at my domain.

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