Healing: sharing *my* MECFS story with Open Medicine Fdn (and 2 from ‘The Atlantic’)

My least favourite topic to discuss is my health situation, yet, unsurprisingly, it’s what I’m *always talking* about because well, honestly, as much as I want to “out-think” and out-meditate and out-positive the illness, it’s a constant companion and dictates everything that I do – from scheduling to nutrition to ability to earn/acquire money, and related equivalents.

{Yes yes, I know the mind is powerful, I spend hours a day in various forms of meditation, increasing theta brain waves, positive affirmations, complete sensory silence, reprogramming neural plasticity – and all of it. Not to mention the retinue (constantly changing) of medications and supplements and other treatments (name it, i’ve done it).

Also, at least one friend – knowing well my previous acumen and enthusiasm for building community – has suggested my community building skills might be well used around this illness but, emotionally for starters, it’s an incredible toll. Ergo: just keeping oneself going (especially as I’m dealing with settling as an immigrant in a new country and with a young family…)

Anyway, all said, was it last year i published the multi-part “healing ramble” series? the one where gave the background intell on all the different treatments and protocols did during the missing years… (I should couch that by saying there are definitely many treatment types and situations which I very specifically did not share as they’re still too painful to articulate, a few sit in various draft forms in a folder, which may never get published) – regardless of when, there was almost 0 attention or awareness or feedback or input about the series – but maybe it was good for my mental health to put it out there(?) – as through all the journeys – fruitful and fruitless as they might be –I was journaling, diarying, documenting, etc., both about the treatment types and various hospitals/clinics, as well as the logistics of how managed to go places in the condition i deal with.

Addendum: the erstwhile “community” around this illness can be very sensitive and cantankerous, as people are really living on the edge of their own mortality and emotional state, and tend to turn on each other and nitpick about terms and diagnoses etcetera so I’m also very tender how about this aspect.

As usual, this is just a long way of saying, “I shared some stuff with open medicine foundation (an organization focussed on scientific research, rather than some of the other great organizations who focus on patient advocacy, government lobbying, awareness building, and group support), which came out while I was on the BC trip which coincided with the 10 year anniversary of the onset of this illness (May 2013) and, like most everything I say out into the world, had very little reaction or input or whatever but hey, I did it.”

Further, during the so-called “long-haul C 19” illness that’s become prevalent in {italics} these days {close italics}, awareness and research for ME/CFS has increased as the illnesses present in very similar manners. (No, I’m not going to get into the details here, that’s not my job).

So, below are a couple of exceptional articles by Ed Yong writing for The Atlantic (he left The Atlantic within hours of publishing the 2nd one shared below but remains an advocate of folks dealing with this umbrella of illnesses as he really spent the time getting to know the dilemmas folks face from being “gaslit” by the medical industry, ignored by governments, dismissed by employers, plus domestic / familial conundrums, and the crushing sense of defeat and precipice of depression and hopelessness that comes from this/these illness/es.

So, I come to you today finally rounding up these three pieces so I have one link to send to people to say “this is my illness, this is my story, this is some more stuff to say that this just isn’t me”.

[Note: the articles from the venerable “The Atlantic” below might be behind a pay wall, but generally allowed 2 free articles before shutting you down, and Mr. Yong has also kindly offered to send a complementary version of the article to anyone who requests by email, deets below.]

1 x Open Medicine Foundation

A Decade of Living with ME/CFS
Finding Hope & Purpose in Japan

During OMF’s May Momentum campaign, we aim to raise awareness for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).

Today, we share the story of Dave Olson, an OMF supporter in Japan. Dave’s experience highlights not only the challenges faced by those with ME/CFS, but also the resilience and strength of our community.

Open Medicine Foundation: OMF.ngo ++ Donate | Txitter | YT |
Science Advisory Board | Press kit (pdf) | Bonus Ambassador Stuart Murdoch

Hi, I’m Dave, and I’ve been living with ME/CFS for 10 years now. Before my diagnosis, I was an enthusiastic and active individual, working as the Vice President of an exciting social media-related company in Vancouver, Canada. I had a plethora of hobbies, from hockey to hiking to public speaking. However, my life took an unexpected turn when I suddenly fell ill in May 2013, leading to a decade-long journey with ME/CFS.

I went from feeling “a little bit sick” to having an out-of-body experience passed out on the floor. I thought maybe it was a gastrointestinal issue or stress from work, but I just didn’t get better.

I really realized something was wrong when my brain started to “check out” and I was getting lost and disoriented just blocks from my house despite being a world traveler. It turned out that I was ill with ME/CFS.

Now, ten years later – after hundreds of medical appointments, tracking down specialists and programs of every possible kind, I’ve lost everything from my career, to my support system, self-worth, and hobbies.

Read more: Healing: sharing *my* MECFS story with Open Medicine Fdn (and 2 from ‘The Atlantic’)

Rebuilding my Life Across the World

Despite all the loss I have suffered over the past decade, I’ve managed to rebuild my life in Japan with my wonderful wife and adorable 2-1/2-year-old son.

I recently started a specialized ME/CFS medical program at Okayama University research hospital, which has given me hope for a brighter future.

Throughout this journey, I’ve turned “optimizing the household” into my hobby, finding ways to streamline daily tasks while conserving my limited energy. I also enjoy creating and sharing art, writing postcards, and blogging about my experiences at daveostory.com.

 Navigating life with ME/CFS in Japan has had its challenges. It took some time to find the right medical resources, but I’ve made significant progress with the attentive care of doctors at the Okayama University research hospital. While there is a growing recognition of ME/CFS in Japan, I hope that sharing my story will encourage more understanding and foster better communication.

Words of Wisdom: How to Find Creative Expression with ME/CFS

 Blogging has played a significant role in my life with ME/CFS. I’ve been able to share my experiences, art, and insights through my blog, connecting with others and reminding myself that I’m still alive and relevant.

 For example, in my spare time, I take great pleasure in writing postcards. This hobby not only fuels my creativity and hones my motor skills, but also provides “three waves of joy”. The first wave of happiness comes from the process of preparing and sending the card. The second surge follows when the recipient gets the card. The third thrill arrives when I receive a response!

 An example of Dave’s postcard art 

For anyone with ME/CFS who wants to pursue their passions through art or any form of personal expression, I suggest starting small. Instead of working on large canvases, murals, or novels, consider decorating postcards, writing poems (even haiku) or creating scrapbooks or collages.

 When you’re resting, plan your creations so you can use your limited energy on the actual creative process rather than deciding what to make. Focus on projects that can be completed quickly, from beginning to end, and are easy to share by mail, remote exhibitions, or as gifts. I’ve published poems and submitted art to exhibits all from my bed and have given my art to medical practitioners to show my gratitude.

 Additionally, consider learning a new skill that can be done easily on a table or lap, allowing you to connect with others.

A Note to the Newly Diagnosed

 For those newly diagnosed with ME/CFS, be prepared to face challenges and losses, including friends, family, career, and even dreams. Despite it all, remember that no matter what, you are important and your perspective on the world is so valuable.

 We are pioneers on a journey we didn’t choose. Take the advice of a counselor who deals with chronic and complex illnesses: “Go where the current takes you.“ If needed, find a counselor who understands your situation, as friends and family may not have the practical skills or emotional ability to provide adequate support.

Finding Hope in Open Medicine Foundation

 Remember that there are also people who are working around the clock to help us and find a cure. I first heard about Open Medicine Foundation (OMF) during my search for a community that focused on scientific information, research, and practical solutions for ME/CFS. OMF’s transparent and thoughtful approach to fundraising and communication resonated with me, and I am grateful for their dedication to finding a cure for this debilitating condition.

As I reflect on my 10-year journey with ME/CFS, I’m filled with gratitude for the support I’ve received and hope for the future. To all the scientists, researchers, fundraisers, community organizers, patient advocates, and individuals who contribute to this cause, I raise a cup of Tulsi tea to you.

 With fond regards from my cottage in Okayama, Japan,

Dave Olson

During May Momentum, please consider making a generous donation in honor of Dave and the millions like him who are waiting for answers. Our research momentum is powered by you. Thank you for your generosity and for standing with us in our mission to end ME/CFS. 

more bonus from Stuart Murdoch of Belle and Sebastian sharing his support as a fellow traveller

2 x The Atlantic

Fatigue Can Shatter a Person

Everyday tiredness is nothing like the depleting symptom that people with long COVID and ME/CFS experience.

By Ed Yong, July 27, 2023

Long COVID Has Forced a Reckoning for One of Medicine’s Most Neglected Diseases

Only a couple dozen doctors specialize in chronic fatigue syndrome (ME/CFS). Now their knowledge could be crucial to treating millions more patients.

By Ed Yong, Sept. 26, 2022

PS Ed Yong is a former staff writer at The Atlantic. He won the Pulitzer Prize for Explanatory Reporting for his coverage of the COVID-19 pandemic.

But hey Ed Yong has a newsletter “Ed’s Up” because *everyone needs a newsletter, right?*