Even though I’m a doctor myself, I felt anxiety when my primary care doctor retired and I had to find someone new.
By that point I was 15 years into my illness, had consulted dozens of health care professionals in all kinds of specialties who were well respected in their fields but whose ways of working didn’t work or didn’t help. I had a plan of action, a context for making sense of my symptoms, tools for healing, and an approach that felt like it was working.
By then, I wanted to do things my way, with support.
And here again, even though I was a doctor and had an empowered way of working with my illness, I was afraid.
I was afraid of what a new doctor might think because my illness has no visible symptoms, biomarkers or measurable abnormalities. Afraid a new doctor would think I was faking it or that I must not be trying hard enough. Afraid they would think I was dawdling on the coat tails of disability so I could just “lay back and relax.”
I was afraid of this even as I understood just how much those of us with chronic illness don’t feel well enough to “lay back,” or “relax” and tend to be profoundly motivated by symptoms and a desire to feel better.
What I wanted was a doctor who listened. Who could see me as a Person. Someone who might recognize how motivated I am to get well and how much I’m actively doing. A health care professional who wouldn’t grimace if I happened to explain I use unconventional methods because other things haven’t been helpful (or have caused problems).
I hoped I could find a doctor who “got” chronic fatigue syndrome (ME/CFS) enough they wouldn’t tell me it was in my head, that it was from not trying enough, or because I am weak-willed. I didn’t need them to actually “fix me,” I just wanted someone on the inside to help navigate the journey.
When you have a chronic illness, looking for your health care team is like the search for the Holy Grail. You don’t even know if such a person actually exists. You don’t know if it IS indeed possible to make sense of your symptoms. You aren’t sure if anyone has ever gotten better or if there are ways of working with your illness, which conventional doctors tell you is incurable.
But there is a voice inside that believes. And so you keep looking.
It can take a lot of trial and error to find your team.
For this and all the other reasons, along with having consulted a number of new doctors that weren’t a good fit for me, are why I was so happy when my family doctor came back.
She listens. She trusts me. She respects that I am listening to myself and finding the best fit for me and my body. She started studying trauma. Some of her views include what she’s learned by watching me gradually improve doing it this way. My way. She has asked me how the context I use might help when working with others. We’ve gotten together once outside of a medical appointment so I could explain the emerging science of how trauma affects the nervous system and how this can influence symptoms and chronic illness.
Finding someone who gets your particular illness, such as ME/CFS and the need to pace yourself, to try all things in small amounts first, to heal the effects of adversity on our cells and nervous systems, makes the journey easier.
Having a health professional who recognizes that different tools work for different people lends support to the challenging journeys we are walking as we explore what works best for us.
Having someone who has your back, who has been there before, or who knows through experience working with others just like you can be one of the biggest supports and gifts on our journeys.
It’s often one of the things we crave most: an ally.
Someone whose approach resonates with what feels right to you.
Someone who understands how adversity in the present, such as with Covid, and from the past, can make us feel so tired all the time and want to crawl under the covers.
This free online summit has over 40 speakers who understand fatigue, chronic fatigue syndrome, long Covid, chronic Lyme, Multiple sclerosis, and more.
They have different approaches that have worked for themselves or for others (or both). They have tips and tricks. Ways of working with your fatigue and health. insights based on experience. Ways of making sense of your symptoms.
Here’s where you can learn more.
The Fatigue Super Conference
Free Online Summit
Over 40 talks
on working with body systems that influence fatigue
(the gut, immune system, nervous system, toxins, emotions, the environment, …)
ways to decrease your fatigue
(nutrition, yoga, meditation, functional medicine, trauma therapies…)
I’ve presented at Alex’s online conference before and he and his team have taken steps to provide more diversity among speakers than has been common in summits.
Live Summit was April 2021
It may still be open
You also have the option to purchase all the talks. I receive 50% of the proceeds, which I will put into support for my blog.
The Fatigue Super Conference includes a short free video with stories shared by a musician, business professional and others who have had severe, disabling chronic fatigue syndrome (ME/CFS) and who have recovered.
Alex Howard, the founder of this conference is one of the ones speaking in this mini documentary who recovered from ME/CFS. He has co-founded an organization (Optimum Health) that facilitates health and healing for people with chronic fatigue syndrome. They also conduct research with the profits from the summit if you want to purchase access to all of the talks to watch on your own timing.
The Summit Includes
- Short Video “Secrets to Recovery” (free on registering)
- Guided yoga
- Guided meditations
- Case study reviews for professionals
Talks at the Fatigue Super Conference
With more than 40 speakers it can be a little overwhelming to figure out who to listen to. Here are some I recommend. I don’t know which day we will be presenting but you will get the list of speakers for each day once you register and will have about 24 hours to watch and listen for free.
Veronique Mead, MD, MA
The Cell Danger Response and Fatigue
My talk with host Kirsty Cullen includes some of my story, a focus on the cell danger response (CDR), research behind it and how one study explains how ME/CFS reflects a state of relative “freeze” that is not in your head.
Making Sense of Symptoms so We Can Find Tools That Fit Us
- Working with freeze – how the act of “doing” can trigger more freeze
- Working to heal threat perceptions can take time. It’s like planting seeds. Sometimes shifts can happen quickly
- It takes courage to walk the path of chronic fatigue and chronic illness. As Kirsty puts it, “The people who come to our clinic are Brave.”
- Why different events can lead to the same illness
- Why onset may be fast for some and slow for others (like for me)
- The study that showed how chronic fatigue reflects a body caught in freeze, with 80% of abnormal metabolic waste products showing biological changes in the direction of hibernation-like freeze
- Why it’s not in your head
- The freeze response, the intelligence underneath it – and how it interrupts what is happening to lead some of us to get stuck in states of fight, flight, freeze or some combination of these in chronic illness
- How and why understanding trauma can help make sense of symptoms and offer hope and tools for healing
Diane Heller, Ph.D.
Surviving Isolation by Understanding Attachment Theory
I did part of my somatic experiencing (SE) training as a trauma therapist with Dr. Diane Poole Heller who has a massive amount of experience teaching about trauma and healing its effects. Her talk is about attachment trauma, which I refer to as adverse childhood relationship experiences (ACREs).
Irene Lyon, MSC
How Childhood Trauma Affects Fatigue
Irene Lyon combines her training in somatic experiencing, feldenkrais and beyond to makes sense of and work with chronic illness from trauma and nervous system perspectives. While I don’t know her personally I have seen some of her videos and blog posts, which provide super insights into symptoms and polyvagal theory.
Ameet Aggarwal, ND
How emotional stress affects your body
Ameet Aggarwal is a naturopathic doctor and homeopath. While I don’t know Ameet, his talk and work look to offer helpful insights because he incorporates the role of trauma in chronic illness with additional training as a psychotherapist doing EMDR and Family Constellations for working with multigenerational trauma.
Talks I Also Liked at the Fatigue Super Conference
Three world-renowned experts who “get” the need for going slow:
- Dr. Sarah Myhill (known for her work with ME/CFS)
- Dr Jacob Teitelbaum (known for his work with ME/CFS)
- Dr. Terry Wahls (known for her personal journey with multiple sclerosis)
- Sarah Ramey – a patient’s perspective and tips
Other speakers include:
- Dr Omowunmi Osinubi (Veterans, Environmental toxins, Gulf War Syndrome)
- Nick Ortner (EFT/Tapping for better sleep)
- Dr Armin Schwarzbach (chronic infections)
- Dr Tom O’Bryan (autoimmunity and balancing your gut)
- Gail Aylward (Yoga for deep rest and healing)
- Dr Christine Schaffner (Supporting immune function with long-COVID)
- Sarah Ramey (Practical tools for living with chronic illness; author of a memoir;)
- Gail Aylward (Yoga for deep rest and healing)
- Dr Evan Hirsch (Co-infections and how to address them)
- Dr Gabi Macaulay (a GP: How inflammation causes fatigue)
- Donna Gates (The Body Ecology Diet: Healing your gut to reduce inflammation)
- Lodro Rinzler (Mindfulness for deep rest and sleep)
- Dr Anu Arasu (Hormone balancing for pain and fatigue)
- Dr Carsten Nicolaus (How to address tick-borne diseases and fatigue)
- Laura Stirling (Functional laboratory testing for fatigue)
- Dr Suman Gupta (Practical strategies for managing COVID-19)
- Dr Jodie Dashore (Plant-based approach to autism, Lyme and mold illness)
- Dr Eva Detko (Vagus nerve stimulation to calm your nervous system)
- Dr Carrie Jones (Cortisol, mitochondria, and the stress response)
- Dr Gayetri Chudasama (Balancing digestion for better sleep and energy)
- and more