Resources - Table Format

Feetures. CEP (includes shorts and leggings too). Bombas (Performance). Sockwell. Honorable mention: Copper Fit. Compression garments help some people with POTS or circulatory issues. They can also help if you aren’t moving much (eg on an airplane flight). Athletic grade compression socks may not work as strongly as toe-to-waist leggings or higher pressure socks, but they could still relieve pressure or keep the circulation moving in a comfortable and brain-feeding way. (Google the research and blog posts on this to know more about which ones to get, or check with a professional to know which pressure level you may benefit from.) I would try these while hanging around or in bed, but even more when starting to be more active and gradually increasing activity levels. I haven’t read research on this, but I wonder whether these could reduce PEM through the same mechanism that reduces DOMS (delayed onset muscle soreness) for healthy athletes.

Most are ugly. These are cute. Try a pair and see if they help.

Ask your doctor or physiotherapy team which pressure might help you

This follows excellent research at a good price point. 4-6 breathing in particular is a stabilizer of the nervous system. It’s used in the STASIS breathwork program and helps people in high-stress professions—it can possibly help you too. Note—I haven’t used the light personally.

Order the light and try it out

Try the light morning and night for a week

Think about where the money is: there is more funding and interest in supplies for camping and ultra athletic activities than for disability aids. (Follow the money!) As a result, it is hard to find beautiful, functional tools for everyday life. The good news is we can adapt a lot of these. Even better, these often have a health/fitness focus. For example, rehydrated meals for mountaineers will have the nutrients and macros people need, and will have lots of research money behind them. Protein bars made from whole ingredients are another example. Check out your local outdoor store/website for a start. Look for outlet deals and sales. The activities to search include mountain-climbing, sailing, hiking, camping, backpacking, ultralight.

Try lightweight cups and bowls, freeze-dried rehydrated meals and other supplies

More ideas: cooling/heating clothing, lightweight space blanket, folding lightweight furniture, water-free shampoo, tiny toothbrush (and there are many more)

HBOT yielded a statistically significant improvement in the Chalder fatigue scale (p=0.0059; d=1.75 (very large)), global cognition (p=0.0137; d=–1.07 (large)), executive function (p=0.0039; d=–1.06 (large)), attention (p=0.0020; d=–1.2 (very large)), information processing (p=0.0059; d=–1.25 (very large)) and verbal function (p=0.0098; d=–0.92 (large)).

"The results presented here suggest potential benefits of HBOT, with statistically significant results following 10 sessions.”

“At the end of the study, the patients who underwent the genuine hyperbaric oxygen therapy reported a marked improvement in cognitive function. The therapy also had a positive effect on energy levels, sleep disruption and mood.” I personally know several people who have benefited from HBOT, but it’s hard to find insurance coverage for it in the US.

Share this article with your provider

Look into HBOT farther afield—you may need to travel—or look into ways to get similar benefits at home. By bringing it up to providers and sharing reputable articles, you can help raise awareness so more people can ultimately access it

EECP is a non-invasive treatment that improves blood flow to your heart and throughout the body by applying blood pressure like cuffs on your lower extremities. In an analysis of over 1500 cardiac patients from Flow Therapy’s specialized EECP centers, fatigue was reduced by 36% (PROMIS Fatigue Score) and breathing difficulties by 50% (ROSE Dyspnea Score). Other benefits in functional capacity have also been demonstrated after a full course of EECP.

Ask your provider about it. NOTE: A major medical institution recommended this to me—it’s legit

See whether this could be covered by your insurance

Share this with providers, friends, family, anyone who may be able to use the resources or benefit from seeing how wide-reaching these conditions are

.. and Launch of Long COVID Clinical Trials Through the RECOVER Initiative

Read through the resources and see whether you can use any

A report commissioned by the US government to elevate "the narratives and expertise of people with long covid and what they want and need to live better, healthier lives.” Includes ecosystem analysis, frameworks of opportunity based on what Long Covid communities want, and recommendations for policymakers and community leaders.

If you are helping people with Long Covid, read this report—essential reading to hear directly from people with the condition

Read the quotes and think carefully about how you might serve and support people having the experiences you read about

This is from 2021 and there is even more information now. However, it is still a great summary. Look at the tables especially. This offers good information to bring to your physical therapist or rehab team. If you are not getting this kind of care, it can offer guidance while you look for better care. For example, think about “submaximal” exertion while you try to recover: going at less than your capacity until you have gotten to the point PEM isn’t a big problem. Tables: fatigue assessment recommendations (table 1), common symptoms, manifestations, systems, testing options, and referral options (table 2), diagnostic criteria for ME/CFS (table 3), fatigue treatment recommendations (table 4), and health equity considerations (appendix). Example of nuance in the article: ”In patients presenting with fatigue, it is important to consider the evaluation of fatigue and diminished activity tolerance as related but distinct conditions. As these two symptoms may intersect, the differential etiologies of fatigue should be considered in conjunction with a separate differential for lowered activity tolerance.”

Read over the tables and the concept of “submaximal effort” for treating fatigue

Print the report and highlight all the parts that resonate with you; show it to your medical team and ask them how your treatment plan will embody the thoroughness of this report’s recommendations

"This first report, the Report on Services and Supports for Longer-Term Impacts of COVID-19, outlines the services and mechanisms of support across agencies that assist the American public in addressing the longer-term effects of COVID-19, including mental health, substance use, bereavement, Long COVID and related conditions.” A lengthy document that lays out the condition with quotes, data and context. This may be very useful to share with someone who doesn’t understand Long Covid / postviral conditions.

Skim this lengthy report from the US Department of Health & Human Services

Send the report to a provider or employer, and get some ideas to help yourself understand or act on your condition

“The U.S. Department of Labor is committed to ensuring equitable access to health and safety for America's workers and providing resources to respond to and recover from the Coronavirus pandemic.” Info for workers, employers, youth and policymakers.

Learn your rights and options

Check the page for resources to help your situation, make a plan based on them, and set a meeting with your doctor or employer to talk through it

A section on the US government’s official site for Covid. “Learn more about Long COVID and find the resources and supports you need.” Includes links to the government response. Resources for healthcare workers may help you know how to navigate the health system and get all the help you need.

Get information for sufferers, healthcare providers, researchers, innovators and government

Contact your political representatives and ask them to support this initiative

A blog-style repository created by a counselor supporting clients in grief, meaning-making, and “partnering with them to reclaim a vital lifestyle after loss.” Gentle, perceptive, and carefully curated with insights from best practices in managing loss.

Read poems and short articles about “balancing life’s joy and heartache”

Print a post or poem and tape it to your wall; or save it as your phone wallpaper

"Patients with CFS are often dismissed by peers and even by physicians who are unfamiliar with the disease.” Covers classification of ME/CFS, main symptoms, medication options, and the re-naming as “SEID” (systemic exertion intolerance disorder).

Skim the article to find treatments your doctor can try

Send the article to family and friends

“The ANS uses a “two neuron system” to relay electrical signals from the CNS to effectors (organs, glands, and vessels).”

Skim the page and imagine your physical nervous system healing, calming and connecting

Read the entire page. Is this relatable? If yes, find a way to support your nervous system based on what you’ve read

“Heart rate variability (HRV) is a physiological phenomenon that can be recorded, analyzed, and interpreted to help understand how your body is navigating the challenges of life and environment.”

Browse the images of HRV readings, to get a sense for what it is (related: Body Battery)

Read the entire webpage and search Postviral Toolkit for ways to measure HRV

“Comparing your nightly average and recent trends against your established baseline can give you insights into how your body is coping with your recent activity levels and stress. Being within your baseline range typically indicates your body is maintaining itself well under current conditions, while an unbalanced or low status can indicate a struggle to achieve equilibrium.”

See which Garmin watches can measure your HRV (a way to see how your body is coping and recovering)

Buy a watch and try it out

“Research on COVID-19 and Long COVID is evolving faster than research on any disease in history, with almost every academic medical center around the world somehow involved in COVID research, but there is still so much to learn. This site is not meant to be a comprehensive description of everything we know about Long COVID to date, but we will briefly summarize some key points.”

Read this short webpage from the Long Covid Research Fund

Explore a couple of the ideas and see if you can find a treatment or see a specialist

“These data support the hypothesis that LDN may have potential as a treatment for ME/CFS by characterising the underlying regulatory mechanisms of LDN treatment involving TRPM3 and opioid receptors in NK cells.”

Understand the mechanism they suggest is at work behind ME/CFS

Send this to your doctor and consider trying LDN

“We know how valuable it can be for patients and caregivers to connect with others in their own community who are facing similar challenges. That is why Dysautonomia International offers regional support groups led by experienced dysautonomia patient and caregiver volunteers. Our support groups are based on Facebook, but they also host in-person meetings and virtual meet-ups on Zoom, and you can contact them via email even if you are not on Facebook.”

Search for an online group in your region / language

Join one of the groups, sign up for an event, and see if you can find some information to help or encourage you

Dysautonomia International is a well regarded organization offering connections to resources and specialists.

Find your country and see who treats autonomic disorders. Use the text list or the map

Contact a couple of the practitioners in your region

I’m not sure who originated this concept. It helps keep you keep healing while managing the temptation to “go hard” right away, leading to a longer recovery timeline

When you do something new, increase by just 5% at a time—a little stretch

Try out the 5% stretch over a few weeks with what you eat, how you move, or the emotions you engage with

Covering the science of symptoms, managing central sensitization, medication options, herbs and supplements, non-medication treatment, moderation, CBT, biofeedback, movement, sleep, retraining your sense of smell, brain fog management, orthostatic intolerance management, integrative therapies, nutrition, and tools to reclaim your life.

Scan the menu of comprehensive self-guided modules

Read through one of the modules

Follow their 5-step process to get a remote review of your cytokine assessment panel; symptoms; and, a personalized treatment plan from the physician team. You are required to have a supportive treating physician (MD/DO only) prior to completing the following five steps.

Not verified! Led by a former Stanford medical director, take a mail-in blood test and have a virtual consult for possible treatment.

Share the website with your doctor and read about their cytokine-based strategies.

“Make memory training easy using evidence-based expanding intervals with built-in data tracking & timing.” This app from TactusTherapy is used for people with dementia and brain injury. Why not you too? Remember to take it easy.

Slowly re-train your memory with an evidence-based app

Make a list of all the things you might like to be able to remember, and try a new one each week

The Medical Medium is a controversial figure. He falls under my principle of “If it helps, it helps.” Sick people need relief. I don’t care where that relief comes from. It’s true he makes strong claims he doesn’t back up with data. But some of his claims do align with other research. I know people who’ve benefited from following his advice, including a good friend. Take it with a grain of salt, as you should everything you read online. Check that none of it is contra-indicated for you. If it’s not, you have little to lose (except time and money, and maybe your taste for celery).

Find a recipe you think sounds tasty

Go through the recipes one by one, and see which ones you like the best

Read the Medical Medium page on EBV. EBV itself can lead to postviral illness and long recovery timelines. There’s also evidence that, for some people, Long Covid includes re-activation of EBV. Foods that help with one virus may also help with another. The Medical Medium is a controversial figure. He falls under my principle of “If it helps, it helps.” Sick people need relief. I don’t care where that relief comes from. It’s true he makes strong claims he doesn’t back up with data. But some of his claims do align with other research. I know people who’ve benefited from following his advice, including a good friend. Take it with a grain of salt, as you should everything you read online. Check that none of it is contra-indicated for you. If it’s not, you have little to lose (except time and money, and maybe your taste for celery).

See which foods you might like to add more of

Incorporate all 12 into your daily food for a few months

Personally, I extend these two well-known concepts even further: Tertiary suffering is the the interpersonal pain from how we interact with doctors, family and friends. Quaternary suffering is big picture forces and trends, like ablism in society, less research being conducted for women’s bodies, or disability benefits being hard to access.

The pain we feel (eg hopelessness) as a result of how we feel (eg homebound)

Often we can do something about our secondary suffering, even if our primary suffering is out of our control; this can feel wonderful and give us a sense of control. Look up meditations and online talks about secondary suffering.

"Every week, we post a short reading from various wisdom traditions that points to the sacred. Each excerpt is also accompanied by an audio recording, an illustration and translations.”

Choose a short reading to read or listen to

Listen to one each day for a week

"This online test will guide you through a process of self-discovery, inquiry, and honest reflection through the lens of Ayurveda. Your completed Ayurvedic Profile will equip you with customized resources for you to refer back to anytime, and personalized recommendations to support your health—body, mind, and spirit."

Share your email and take a quick quiz

Banyan Botanicals offers a quiz that you can retake over time to see where your imbalances are. You don't have to buy their products afterward—they have a lot of educational articles and nutrition suggestions, all free. You may gain insights to help make your self-lead supportive health/lifestyle plan.

This 18-minute TEDx Talk has stories, personal experiences, advice on finding a diagnosis, and lots of useful information for doctors and friends or family of people dealing with unexplained medical issues.

Listen to the video or read the script

"I believed that if you had a good doctor and a real illness, then diagnosis and recovery wouldn’t be far behind. So why wasn’t that happening for me?"

Read this short article and think about what aspects of your health are "dynamic"

How has having a dynamic illness affected you? Does this give you any new ways to talk about it to others? How do you feel after reading the article? And how do you feel about the word "disabled"—does it apply to you?

Topics: Chronic illness memoirs, books by NEIS podcast guests, cisability/culture, inside healthcare and medical bias, disability/chronic illness romance

Browse this list of curated books

Buy one of the books to read

Listen to a podcast interview with a chronically ill person

Make notes of inspiring quotes and useful tips

"Post-viral syndromes are associated with serotonin reduction, which may contribute to the neurological and cognitive symptoms seen in individuals with Long COVID.

Lack of serotonin may be behind some peoples’ Long Covid

Ask your doctor if they'd like to try some of the ideas to increase serotonin (eg Prozac)

The Institute of Exercise and Environmental Medicine is home to a global expert on POTS and dysautonomia. It was founded by Benjamin Levine, creator of the Levine Protocol for POTS. It "has become one of the premier laboratories in the world for the study of human clinical and integrative physiology."

See whether you might benefit from this DFW clinic’s approach to POTS and "I can't stand up" issues

Get in touch with the IEEM to see whether you may be able to be seen by them; or connect with its head, Benjamin Levine, through the UTSW Texas healthcare system

"The idea was to make these kinds of conversations searchable for everyone (you can read all the top and most recent posts right here) and to make it easier for everyone to crowdsource answers from the community regardless of follower count."

Learn about a Twitter/X community discussing life with chronic illness

Go check out the #NEISvoid conversation on Twitter/X.

"In PRT, the first focus is on education, evidence-gathering, and reappraising the pain sensations as non-dangerous (typically using somatic tracking). Other components of PRT are then engaged as needed (e.g., addressing threatening emotions, learning toattend to positive sensations). We then return the focus of treatment to the pain sensations as soon as appropriate." Attending to and appraising pain sensations through a lens of safety" is a powerful strategy that could be used from the very beginning of illness, or even before a potentially distressing event. It can help reduce "secondary suffering," or the suffering that we feel about how we feel. It will help to set your expectations the right way — if you want this to solve everything, and are pushing for it, you may be disappointed. Approach it with hope and realism instead. Always continue to see your doctors and other specialists.

Read this PDF, replacing "pain" with "fatigue" or your symptoms

This powerful neuroplasticity approach can help many people with at least some of their suffering. If possible I recommend listening to audio prompts or reading a book that introduces this in a "fun" way. This analytical style helps inform, but is written more for a practitioner than a client.

An expression of pain and empathy with people who have felt abandoned by friends and close ones in their illness.

Read or listen to a short essay about holding and listening to one another during challenges

This short essay uses metaphors to share about the power of holding close to the people going through hardship or struggle.

Take care before implementing a program without professional guidance. What works for POTS may not work for your condition. If you like this program, see if there's a practitioner in your insurance network that could give you some help in starting it. Read this article about what this protocol is and why it helps. You can see whether it may help you too. You can also look up Dr Levine's clinic in Dallas. They created the protocol.

See if one of these exercises looks easily do-able right now

Print the program and create a modified version for yourself, based on what you can actually do without impacting how you feel the next day

Key ideas from a book written by a doctor who treated long covid patients early in the pandemic.

"It can be a lovely thing to actually reassure somebody, ‘You need time, you need to give some respect to this process.’”

Read the book or just think about how you might "convalesce," old school Victorian style. Observe any feelings and beliefs that come along with that idea.

Claire Weekes is a pioneer in the field of nervous illness. While that term is not used much today, her books are still relevant and her advice to "stop struggling" is paired with details on exactly how to do that. This doesn’t replace or address physiological issues that require medical attention. Read it as more “stop struggling more than you have to,” not as a directive to somehow heal yourself right this moment

Listen to this brief strategy for anxiety/panic/adrenaline rushes

Look up more videos of Claire Weekes on YouTube

Get a PDF of the brief fatigue inventory. Read a study showing how the brief fatigue inventory was used with older adults, with good results about its usefulness. Get a PDF of the Chalder Fatigue Scale and read a post with critiques (namely, chronic fatigue patients rate "worst" right away and can't indicate when their symptoms get worse.) The CDC has a long ME/CFS symptom inventory that may help you organize and communicate about what's happening, or see that you don't share many of the symptoms of that specific diagnosis. I don't have any research or references on it. https://www.cdc.gov/me-cfs/pdfs/symptom-inventory-questionnaire-508.pdf

Click through for several formal inventories ("how does fatigue affect your life? how tired are you?") and links to research or critiques of them

Fill out the one that resonates and bring it to your doctor. If you don't have a doctor giving you similar inventories or asking these questions, the good news is you may be able to get better treatment somewhere. The bad news is you may need to seek it out proactively.

The experience of falling ill, lacking support, or fearing long-term challenges can cause trauma. Even if other treatments help, it's worth looking into these because they do have a strong research backing. Sometimes these are offered in non-conventional settings, like equine therapy, dance therapy and somatic therapy.

Learn three treatment areas for nervous system triggers

Bring this to your health insurance, referring doctor, or a friend. Or check whether your current provider can do these. You can also search at www.psychologytoday.com. If you can't access professional services, maybe you can still incorporate some of the ideas into your life.

If you're already experiencing post-traumatic growth, give yourself a high five because you have made it through quite a lot

Look ahead and imagine a day when you see these in yourself

Think back to a time in the past you went through a rough period and, afterward, saw some of these in yourself.

Poor sleep, exhaustion, tachycardia, palpitations, dizziness, nausea, GI disturbance, brain fog. exercise intolerance. Sound familiar? What you might not have realised is that all of these symptoms can be explained by disorder of the autonomic system. Our bodies, being stuck in a fight or flight state, are never resting, digesting or healing as they should. In episode 4 of this expert interviews series, the host talks to Dr Svetlana Blitshteyn about what's known about virally induced dysautonomia, what the prognosis is, how we diagnose it and how we treat it. Also covers intersections with Long Covid and postviral conditions in general, which have long been known to lead to dysautonomia.

Scroll down to the Chapters and choose just one to listen to

Read the transcript or finish watching every chapter in the video.

Bronfenbrenner conceptualized four ecological systems that an individual interacted with, each nested within the others. Originally these were microsystem (individual), mesosystem (immediate surroundings and relationships), exosystem (impact the individual indirectly), macrosystem (culture, society, norms). These were later adapted to "process - person - context - time."

Think about how to bring stability to each of the 4 nested systems in your life (process, person, context, time)

It can help to put your experience into a bigger picture. For example, the page sayd "Time influences the systemic interactions within an individual’s lifespan as well as across generations, such as in the case of “family values,” a set of morals or beliefs that are passed down between generations and shape development." What kinds of processes are taking place for you, which are following their own timeline whether or not you can describe it? How does the culture norm (macrosystem) of hustle culture or discomfort with disability impact your journey?

Read an academic paper going in-depth on what makes this model different. Body reprogramming is for those patients with a condition like central sensitivity syndrome or fibromyalgia. (Postviral conditions can include sensitization.) This project is associated with the NHS (health system in the UK). They also offer a course for doctors, physiotherapists, psychologists, occupational therapists and other healthcare professionals who manage patients with Fibromyalgia/Central Sensitivity Syndroms.

Browse the website and watch videos or read the resources

Videos, resources, clinician training, a patient guide and information on a course. This model is presented in non-academic language.

Explore AI apps, extensions and websites that can help you with your specific goals. Hot tip: Get a text extender app (like Text Blaze) to make shortcuts for your favorite prompts. Example: you could type “[ingredients]” to auto-populate a list of ingredients you want to incorporate into your meals. That list will be useful if you ask AI to make your weekly meal plan. These particular prompts are created by me, inspired by ones I’ve used.

Copy/paste these directly to ChatGPT for a cognitive shortcut for doctors, daily life and mental health

Modify the suggested prompts for your own needs

They say, “With the Sensate 2 anti-anxiety and stress relief device, you can achieve relaxation and peace in an easy, safe and enjoyable 10-minute daily session. No effort, training or experience is required.” Anecdotally, it helps some people and doesn’t help others.

Read the reviews of this small device meant to help with HRV, sleep, resilience, and anxiety

Check the return policy to see if you might be able to try out Sensate before committing

A delicious and nourishing dish to give the digestive system a break

Kitchari comes from the tradition and healing system of Ayurveda. Buy the spice mix or whole kit to save time.

Filled with nutrients

The recipe creators call this a “Mitochondria Miracle” — in any case it won’t hurt a healing body!

CSE explains how we respond to stress (the “stress” reflexes), how chronic muscle pain develops (resulting in Sensory Motor Amnesia) and most importantly, uses a technique highly effective in releasing muscle tension and restoring control, movement and sensation (Pandiculation).Get a copy of the mini course (free with email sign-up). Look up a practitioner in your area. Read some of the "why" behind it. See if they have an online workshop coming up. Read the articles.

Get a copy of the mini course (free with email sign-up)

Try a couple of the exercises from the mini course or look up more of them online. Research your symptoms to see if this has helped people. Write down your questions and concerns, and send them to a practitioner.

A studio offering in-person classes in Fort Worth, Texas; and online courses too.

Try a free consult and perhaps a somatic movement class ($13)

See the calendar here. UK and US times offered. Sign up for the free consult to get a free trial class.

If it’s good enough for my cat it’s good enough for me!

Move your body in a "full body yawn" like a cat does when it gets up from a nap

Pandiculation can be much more accessible than stretching, and very good for us. There are three elements to a pandiculation: 1. A voluntary contraction into the tension of your muscles (it doesn’t have to be vigorous!)… 2. Followed by a slow, controlled lengthening…. 3. And a complete relaxation. This gives your brain time to integrate the new feedback you just gave it.

This doctor shares a lot over his email list once you sign up. You can also get PDF guides for free. He interviews other doctors and practitioners, and links to other peoples’ work often. It’s refreshing to see someone draw the connections that you may be living eery day.

Read easily digestible blog posts (some as audio) to help yourself in an area you may not expect

Blog posts to get started: - Colds, Viruses & Sleep Apnea - Another Possible Explanation for Chronic Fatigue Syndrome - Is Your Throat Sore Just Before Your Period? - Expert Interview: Dr. Avram Gold on UARS, Chronic Fatigue & Functional Somatic Syndromes (audio) - Tonsils, Mono, and Chronic Fatigue - 5 Unexpected Causes of Autoimmunity - How Mouth Breathing May Put You At Risk for Viral Infections - 3 Facts You Should Know To End Sinusitis For Good (Also Covers Migraines) - Brain Damage in Chronic Fatigue Syndrome and Sleep Apnea

In this groundbreaking book, Dr. Steven Park outlines a simple, rational explanation for what's making you sick, and provides guidance for treatment options that address specific health problems.

Listen to this audiobook to learn how to make small changes that may have a big impact on your sleep and energy (spoiler: nasal strips, nasal rinse and nasal dilators)

Anything that narrows the throat and interrupts sleep, particularly breathing problems brought on by sleep position, illness, life changes, or your anatomy, may be key to understanding a host of common health issues.

See all published research by Nancy Klimas, who investigates causes and models in conditions like chronic fatigue and long covid.

Many doctors don’t know much about LDN. But for many it doesn’t cause bad side effects, doesn’t build dependence, and makes a life-changing difference.

This medication can help with many conditions, including Long Covid, PTSD and ME/CFS

Share these patient and physician guides with your doctor, along with links to the research. Join the patient-led Facebook group for personal experiences, research, and answers to questions.

Ashok suffered from ME, or Chronic Fatigue Syndrome, around 25 years ago when he was studying at Cambridge University. Through neurological research that he conducted, he managed to get himself 100% better. He then set up a clinic to treat others, and then published the well-known recovery program known as the Gupta Program in 2007.

Interview with the creator of a Long Covid Recovery Program (Gupta) in an academic journal

A good look at the research behind Gupta, elements of the program, tips for recovery and a chance to know whether you may like to try the Gupta program. He says to exhaust medical examination and then, "Once the doctor has said, 'Look, we’ve done as much as we can for you,' then you come to our program and look at the underlying wiring of the brain."

A patient-authored article looking at a "controversial" story and parsing out the science — lots of background and science on what may be behind ME/CFS and how it relates with our feelings about being sick. (Read Paul Garner's personal account here.)

Put on your science hat for a "who dun it" article about sickness, the nervous system and why each person's condition is unique

There is a lot of pain and trauma in the ME/CFS community, and for good reason. Read this article with compassion and mindfully process any hard emotions; take breaks and remember that someone else's story may not be your story. You may OR MAY NOT have a lifelong chronic illness. Take hope from this note at the end: "Perhaps the most critical fact about any recovery story is that it’s just one of many. Health Rising has 63 recovery stories on its website that run the gamut from antiviral, functional medicine, diet, fecal transplant, hormones, mold avoidance, surgical and yes, mind/body (13 of them). I have 10-15 more recovery stories waiting to be processed which include recoveries due to functional medicine, DNRS, blood volume enhancement, fasting, yoga, ketogenic-meditation-functional medicine, exercise-diet-pacing-mind/body, etc."

Authors reviewed 2,711 titles and abstracts for inclusion with 152 selected for full-text review. 102 articles were subsequently removed as this did not meet inclusion criteria. Thus, fifty studies were analysed, 34 of which were described as cohort studies or prospective cohort studies, 14 were described as cross-sectional studies, one was described as a case control study, and one was described as a retrospective observational study. In total, >100 symptoms were identified and there was considerable heterogeneity in symptom prevalence and setting of study. Ten studies reported cardiovascular symptoms, four examined pulmonary symptoms, 25 reported respiratory symptoms, 24 reported pain-related symptoms, 21 reported fatigue, 16 reported general infection symptoms, 10 reported symptoms of psychological disorders, nine reported cognitive impairment, 31 reported a sensory impairment, seven reported a dermatological complaint, 11 reported a functional impairment, and 18 reported a symptom which did not fit into any of the above categories. Most studies report symptoms analogous to those apparent in acute COVID-19 infection (i.e., sensory impairment and respiratory symptoms). Yet, our data suggest a larger spectrum of symptoms, evidenced by >100 reported symptoms. Symptom prevalence varied significantly and was not explained by data collection approaches, study design or other methodological approaches, and may be related to unknown cohort-specific factors.

They chose 34 cohort studies and looked at all the symptoms they showed. There were 100+ different symptoms and they varied widely

Most studies report symptoms analogous to those apparent in acute COVID-19 infection (i.e., sensory impairment and respiratory symptoms). Yet, our data suggest a larger spectrum of symptoms, evidenced by >100 reported symptoms.

Total rest isn't the best for you. Do *what you can* to attempt to move throughout the day. “The #everyBODYmoves campaign is a grassroots effort that aims to address immobility harm in the acute hospital and post-acute setting. Our goal is to develop a forum for clinicians and organizations to share best practice that nurses, therapists and medical colleagues can embrace.” Note from Postviral Toolkit: Stay within your energy envelope. This is a very delicate balance. If these are not right for you, start with yoga nidra and breathwork—things you can do within your current, true capacity.

View the tips, bed exercises and encouragement to build toward mobility—even if you can't move right now

Print the posters for your wall: Bed Rest Is Bad, Set A Mobility Goal, Did You Get Out of Bed Today, Did You Walk Around the Room Today?

The Johns Hopkins Post-Acute COVID-19 Team (JH PACT) Program is a collaboration between the Division of Pulmonary & Critical Care Medicine and the Department of Physical Medicine and Rehabilitation. Our goal is to provide interdisciplinary, standardized care to address the unique needs of COVID-19 survivors. JH PACT consists of two core service lines: physician (telemedicine for pulmonary and rehab) and therapy (physical, occupational, speech language and neuropsychology).

Read recovery stories, share articles and contact them for services

Contact PACT or share their approach with your doctor, to find equivalent services near you

Visible is designed to help you understand your energy-limiting illness, by keeping track of your symptoms and activity levels. An exciting new app still being updated as of 2023. A reviewer says, "The symptom tracking is comprehensive and very easy to use, even with severe brain fog."

Claims to do a lot of the pacing/tracking for you—if you try it, balance out the symptom tracking by also tracking what feels good each day

Download the app and try it for a week or two

App for women with readiness data, wellness and symptom tracking, movement recommendations, hormone levels and integration of menstrual cycle impacts. Nice to be able to track the whole body/mind system—not just the parts that feel bad!

Start with the free version, just adding your wellness and symptoms each day

Sync it up with a wearable like Garmin

Look through the audios

Listen to a few, and save the ones you like

Check the class offerings of virtual yoga and community for Long Covid

Sign up for an account. Choose an offering (course, group or class) and sign up. Remember to add it to your calendar.

Join the Facebook group and look around

Search for posts on topics that you care about

A simple way of breathing that has helped thousands of covid long-haulers.

Lie on your back. Breathe through your nose, gently. Inhale 4 seconds, exhale 6 seconds. Feel your belly and back press outward. Take it easy. Do this 10 minutes when you wake, 10 minutes before bed. Do it daily

For $5, watch STASIS’ quick demo videos and get their week-by-week program. Contact us if you need help getting started. This program has helped many people and is easy once you start.

Our multidisciplinary team approach gives patients recovering from COVID-19 access to all of our specialists in one place.

Look at the services, treatment arenas and providers

Inquire about joining the clinic as a new patient, or ask about similar clinics in your area

Take the version with Ubiquinol. Start with 200-300 mg/day, then ramp down to 100 mg/day after 3 weeks. A small dose is 100-150 mg and a large dose is 150-300 mg. Read more about dosing, studies and what it helps with. Or read background from Life Extension.

This supplement is well-tolerated and has widespread benefits for people with ME/CFS and Long Covid; have it with fat and try for 4 weeks

An antioxidant. Helps with free radicals and maybe mitochondria. Often taken for aging. Cleans up the mess of how cells produce energy while sick, leading to an increase in energy. “Suggested doses for healthy people appear to be around 100 mg/day. For those under stress and those wishing to receive CoQ10’s possible anti-aging properties, the suggested dose is 200-300 mg/day. The study parameters suggest that four weeks should be allowed for CoQ10 (ubiquinol) to reach its maximum levels in the bloodstream. Because ubiquinol is fat soluble, it should always be taken with high-fat meals.” (Health Rising)

Voted Top Doctor in Cardiology in 2017 by his peers and awarded a certificate of excellence for care provision by patients in 2018. Dr Boon Lim was again awarded Top Doctor of the year in 2018, and 2021 for cardiology, making it the three years that Dr Lim has been awarded this accolade voted by physician peers across the UK.

Look through the resources and choose a few key terms; or watch this cardiologist’s video interview

Contact Dr Boon Lim about a virtual or in-person consultation

A great article to help build empathy and understanding of a debilitating symptom

Email edyong210@gmail.com to get free access to the audio version or the written article; share widely!

Ed Yong wrote a tweet encouraging people to contact him for free access. This is a rare article with an audio version included, as a gift for people with cognitive barriers.

Huge list of potential treatments in wiki style—scroll to the bottom to see them!

Take hope at how many options there are that could help you. Choose a few to look into more thoroughly. Return periodically to look through a few more.

Free 45-minute video workshop with demonstrations, exercises, and exercises for breathing techniques to improve function and ease symptoms

Put in your email, then watch the video that appears on the next page; stop when you have a good breath exercise to start with

Watch the entire 45 minute video

Look through the posters and choose one exercise to try this week—do it once, then rest for a week before trying again

Print all the posters and put them on your wall

Read the encouraging article about the science and practice of how a doctor prevented long covid

Decide how you could implement mindfulness or meditation, or look into the program the article mentions

19 sessions, 4 leaders, 12 peers join for group coaching, reconditioning, yoga, breathwork and restorative rest

Think about whether this small group, personalized online program might help you

Read the testimonials and look into the timing of the next cohort. See if it fits into your schedule. List out what you’d like to get from it and email them to see whether it is a match right now.

Turn video on, move your device away, and just listen to the interview or yoga class

Try a few more yoga classes or interviews

Look through the audios

Listen to a few, and save the ones you like

Rotate type of energy used, every 15 minutes. Eg: physical, mental, emotional, back to physical

Read the PDF, especially the parts about “Stop Signals” — your goal is to get fewer of those in your life, so your body’s “computer program” can get out of shutdown mode.

Read about the approach, listen to a podcast about it, and download the app

Try the app for a week or two

How to use apps and wearables to collect data, self-advocate and monitor your health; comprehensive and user friendly

Visit the website. Read through the apps or laugh at the memes

Download some of the apps. Set aside 20 minutes every few days to read through the sections. Buy the book.

Unique, patient-proven dysautonomia physical therapy

Scroll down at the link to read “PARR PT Method for EDS, Dysautonomia & POTS”

Contact Parr to see about their virtual services

A gentle, short, self-paced audio course taught by a sleep and dream educator. Her work is based on research but the presentation is more intuitive and less science-y — a welcome break for the soul.

Listen to the intro and read the outline to this mini course

Listen to the 13 lessons over 10 days.

A research-based protocol created by a university researcher to address symptoms of MS. The full system goes beyond food to include lifestyle.

Look up Wahls Protocol recipes on Google. Or put a list of approved foods into AI with this prompt: “Here is a list of ingredients. I need 3 recipes that won’t take any thought and will not make me move much or lift things.”

Read or listen to the books. The true protocol has a few other things beyond food. All helpful to heal or cope better with your health. Look up ingredient lists and try to eat food that uses them. Some AI tools let you paste a list of ingredients and send them straight to Instacart. Read about the foods and why they are recommended (or excluded): Testing the Effect of Nutrition and Lifestyle Interventions to Treat MS and Other Progressive Health Problems. Read more about the science: Functional Approach to Treating Neurogenerative Disorders.

The target audience for Mayo Clinic Proceedings is primarily internal medicine physicians and other clinicians who wish to advance their current knowledge of clinical medicine and who wish to stay abreast of advances in medical research.

Print and bring to your doctor—it was written by Mayo Clinic for medical experts!

Covers current therapies (seek these for yourself!), connection to historic infections, the impact on society, what is actually making people sick, the symptoms and how to evaluate.

Concrete, affirming research, resources, expert tips and testing for fatigue-related illnesses like ME/CFS and Long Covid.

Read the tip sheets. Print the PEM info sheet. Share it with people

Follow the heart rate monitoring tips to know your energy limits and begin the road to recovery. Get a 2-day heart test to support disability claims.

Read a little — does it sound helpful? Would you need to adapt it for your own limits and goals?

Talk with someone who has done it, or contact the organization. Read up thoroughly as some people have very critical input on the approach. Remember to pace and follow YOUR internal guidance first.

Check the timing of the next course, and listen to some sample audios at the website.

Sign up for the course and block off the times on your calendar

Download the app and try taking a measurement; requires Polar H10 chest strap (less than $100)

Take ongoing measurements and add tags about what is happening at each time — later, look at the trends and see what to do more or less of.

Wide ranging, patient-led, inclusive resources for Long Covid patients and caregivers

Read through resources including: exercise and pacing, dysautonomia, employment and disability benefits, and peer support

Share the courses and groups with your providers, loved ones and care team.

Read through a few tweets from this physiotherapist

Save the threads you find most helpful and share them with someone else

Read a little — does it sound helpful? Would you need to adapt it for your own limits and goals?

Talk with someone who has done it, or contact the organization. Read up thoroughly. Remember to pace and follow YOUR internal guidance first. Pick and choose from what helps you.

Download the app and take a reading

Use the app for 1 week. Is it working? Do you like it? Does it give you hope and good information?

Dozens of interviews, summaries, recommendations in video form

Turn a video on, move your device away, and just listen to the interview

Share some of the videos with people you love, or your medical team. Try some of the recommendations. Which apply for you?

Download the app; it shows the cause-effect of “what you do” and “how you feel”

Try tracking for a week. Then see what takeaways the app gives you. What can you change? Did anything surprise you?

Look at the page and screenshots — does this project management approach look helpful?

Download ClickUp and get the template. This setup works best on a computer, but later you can use it on a phone. Fill in the template and adapt it to your goals.

This calms and balances the nervous system for lower heart rate and calmer nervous system.

Cover right nostril. Breathe in through left. Cover left nostril, uncover right. Breathe out through right. Breathe in through right. Cover right nostril, uncover left. Breathe out through left. Start again.

Watch a tutorial on YouTube or search it on TikTok.

Try humming for 1 minute — one of the first exercises

Try some of the other exercises, sticking to the ones that don’t give you any symptoms.

The ME/CFS Crash Survival Guide is designed for the patient, their support network, and care team to: • Understand ME/CFS and its defining characteristic of post-exertional malaise (PEM). • Help the individual prepare in advance for a crash/PEM episode ensuring their critical needs are met. • Offer adaptive guidance in carrying out everyday living activities that support energy conservation with ME/CFS.

Read the intro and one of the sections — maybe “Crash Care Kit Essentials” (page 30)

Complete the entire guide, share it with your care team and family, share it with medical providers

Email edyong210@gmail.com for free access to the audio version

Ed Yong wrote a tweet encouraging people to contact him for free access. This is a rare article with an audio version included, as a gift for people with cognitive barriers.

Do your symptoms change, move, increase, lessen? If so you may benefit—take the quiz to know more

Get the audiobook or physical book and start to read; it is a positive, happy book and easy to understand

Living outside the limits imposed by illness often leads to repeated cycles of push and crash. Pacing offers an alternative, a way to live a more stable and predictable life. With pacing, you can live your life according to a plan, rather than in response to symptoms.

Read the outline of the tutorial, and the benefits of pacing; which one would help you the most?

Read the entire tutorial or buy the audio version. Spend the next week practicing a new strategy.

For people with ME/CFS: forum, treatment, research, “Do I have CFS?” and more

Read up on ME/CFS pacing and treatments

Look for positive recovery stories, and action steps based on your personal needs and goals

Over 20 virtual live classes, dozens of on-demand library classes, encouragement and discussion—recommended by doctors and clinics, led by people who had Long Covid.

Start with level 0 (joining from bed while sleeping through the class :))—one of the only programs to truly meet you where you are, and open to all health conditions

Try your first week free with code: firstweekfreeRRR. After that it’s about $10/week.

Download the app and take a measurement with your phone camera

See examples of how this app shows impacts of Long Covid and acute covid: blog post. Get a Polar H10 strap and take measurements each morning for a few weeks.

Easy-to-read website with simple instructions for people with a new covid infection, recovering later, or with Long Covid; written by someone who recovered from LC

Choose a positive idea and repeat it to yourself

Read through the instructions for your specific stage

Look through the audios

Listen to a few, and save the ones you like

Videos with exercises demonstrated by a physical therapist, helpful for returning to movement once the body is ready: breathing, flexibility, mobility, conditioning

Just start with breathing exercises, and just one rep to start; rest one day, then try one rep again

Do more reps and add more exercises

A short PDF summarizing key info for people with ME/CFS

Skim the PDF and pull out a couple things that seem relevant to you; take action on them or ask your doctor

Choose an area to focus on for the next few weeks

Work within your limits — stop before you get tired, let your “energy bank account” grow back up, and only then get back to action

Look up pacing strategies online; talk with a friend about how to do this; make an audit of your day and see where you can pace better; get occupational therapy if you are struggling to do it on your own; encourage yourself with the knowledge that, by pacing, your limits will expand and you will be able to do more—just not right now

This was created specifically for heartrate monitoring in the context of illness—a secondary use that is not always the focus of the companies that make these devices

Browse the spreadsheet to understand what it shows—watches, straps, apps, devices recommended by people with CFS

Find a couple options that fit your need, and look them up or buy them

Choose the easiest exercise to try for 15 seconds

Print the posters, put them on your wall and start incorporating them into your day one at a time—take it easy at first!

Understand the metaphor: if your energy is a bank account, you want to keep it in the black. Never a negative number (in the red). Don’t overdraw! Rest before you get “into the red.”

Reducing PEM (also known as “crashes”), can improve baseline functionality of CFS patients. This toolkit is designed to help patients improve their functioning through managing PEM.

Fill out the checklists and worksheet—you’ll come away with better understanding and a strategy for your body

Complete several weeks of tracking using the worksheets; at the end you will have learned to build crash avoidance plans, monitor triggers, and understand symptoms to enhance recovery.

This 2023 article brings together many of the themes Yong has already covered, with the latest research and treatment updates; read for ideas and share for people to understand your situation

Email edyong210@gmail.com for free access to the audio version

Ed Yong wrote a tweet encouraging people to contact him for free access. This is a rare article with an audio version included, as a gift for people with cognitive barriers.

Virtual support and education groups, costing less than $100 for 10 weeks. Some add an online support group to continue after the course.

Read through the website. Does it resonate with you?

Send an email to ask about timing.

Many of these are quotes and I have the attribution available upon request. I will try to add it to the posters themselves at a later time.

Meeting you where you are! Look around, find one you like, and think about what it says; feel the meaning in your breath, place a hand on your heart and speak it to yourself

Print all the posters and put them on your wall

Think about whether you would like to know your heart rate and HRV—a measure of your body’s readiness for the day

Budget for the cost (less than $100) and order your chest strap from Polar or Amazon.