dSavannah note: Elke was asked to share her story for MECFS Advocacy Day 2021 on Tuesday, April 20, urging elected officials to support funding and research of post-viral illnesses like MECFS and long COVID. The event was sponsored by Solve ME, along with other patient organizations, to amplify patient voices on Capitol Hill and put pressure on Congress to pass the COVID-19 Longhaulers Act (H.R.9027).
She graciously allowed me to share what she had written as part of this year’s #MillionsMissing advocacy.
My name is Elke Martinez. I am 46 years old and I have a wonderful husband, Mike, two cats (Oliver and Lincoln) and two dogs (Madigan and Sawyer). We live in Colorado.
When I first got sick in 2006, I was working as a specialty veterinary nurse in the internal medicine/critical care department. I loved my job – it was my passion. After receiving my state license, I decided to pursue an internal medicine license.
Unfortunately, my illness progressed and I had to pause my education. Some doctors told me nothing was wrong, it was anxiety/depression; many others dismissed me as having “some sort of chronic fatigue syndrome” and told me there was no treatment.
Eventually, I could no longer work in the hospital. I had to quit my job. My license lapsed.
Since 2013, my illness has become my full-time job. Since doctors couldn’t find anything wrong with me, I had to become my own doctor and advocate. It took 13 years for me to finally find a doctor who believed me, and this was only after I noticed an abnormality on my MRI.
I’m sure you’ve heard the terms “long hauler” and “long COVID”. You may or may not have heard the comparison to “myalgic encephalomyelitis” or “chronic fatigue syndrome” often referred to as “MECFS”. Well, I am a “long hauler” and I have been since 2006. Something has hijacked my body and I suspect it has to do with my immune system and involves a virus.
When I did this [advocacy] last year, COVID was just gaining traction in the states. I knew then what everyone else like myself knew. There was about to be a second pandemic. And here we are.
I’m sure you’ve had a cold or the flu; you get a headache, you get tired/weak/groggy, you can’t think straight, your muscles and joints ache, and the only thing you can do is go to bed for the next 2-3 days and hibernate until it’s over. Imagine being trapped in this space, not knowing why or if you’ll ever escape. Because with MECFS and long COVID, there is often no recovery.
My symptoms did progress and include vertigo and dizziness, blood pressure and heart rate problems and near fainting – this is dysautonomia. I have difficulty concentrating, focusing, retaining information and near constant grogginess. This is a suspected immune problem called mast cell activation. I also have insomnia, digestive issues, chronic headaches, and chronic pain.
For decades we have known that MECFS often follows a virus. When COVID hit, alarm bells started going off in our community because what we knew and feared was that at some point, patients would develop a neurological illness.
We know that somewhere between 25-35% of post COVID patients develop long COVID. We are seeing this play out on a global scale. My neurological symptoms progressed and in 2013, I could no longer work full time. I was lucky enough to find part time work from home, but it was at a 75% pay cut. I am now 90% housebound – only leaving my home for doctor appointments and short errands.
I’ve had to exist without supportive doctors, without understanding from anyone, and without treatment. I have been disbelieved, gaslit, embarrassed and humiliated. I was never referred to a doctor specializing in MECFS because the majority of people have no idea there are MECFS physicians and researchers. It is they who have laid the groundwork being used to research long COVID.
And we need them; we need MORE of them.
I estimate I’ve lost over $500,000 in income – which has cost the government tax dollars. I have no savings or retirement plan. I feel like a burden on my husband, and feel such incredible guilt at what we’ve lost. We don’t spend money to go on vacations. We don’t spend money to socialize with others. We weren’t able to have children. This is what I’ve lost due to this illness and what we see happening all over the world.
So much government spending could be saved if there were more research and patients could access treatment within months instead of years or decades.
Last year I spoke about how COVID “might” rapidly disable a large percentage of those affected. This is now a reality. This funding is CRUCIAL. I ask you to PLEASE support research funding for post viral illnesses, including MECFS, as an urgent COVID-19 response and to help the millions of us that have been long haulers prior to COVID.
Thank you, Elke, for sharing your story, and for this impassioned plea.
In her honor, and the honor of all other patients with MEcfs (like yours truly), tell your Congress members you want them to support the COVID-19 Longhaulers Act (H.R.9027) by signing this letter created by Solve ME.
Elke also asks that you please donate to: SolveMECFSInitiative and Open Medicine Foundation, research organizations looking for a biomarker and a cure; or #MEActionNet, an organization that focuses on advocacy and that is spearheading the #MillionsMissing campaign this week. Although they are not requesting donations, she recommends the US ME/CFS Clinician Coalition, as they have provided an amazing roadmap of diagnostics and treatment recommendations for non ME/CFS practitioners as well as a great overview for ME/CFS patients.
The timeline of actions from The #MEAction Network.
Today, Tuesday, 5/11, is a day to Attend Local Events!
PS: If you enjoyed or appreciated what you read, and aren’t currently a subscriber, then please follow my blog! Simply enter your email address in the box under “Follow dSavannah Rambles” that’s on top of the right-hand column. (Or, if on mobile, scroll aaallll the way down to the bottom of the page and enter your email address in the subscribe box.)
Your support keeps me going, even in tough times. Thank you for stopping by my blog. (As stated in the other blog posts I’ve published this week, if you see something wonky, please let me know so I can correct it!)
