#MEAwareness: Guest Post on Life with ME

MEAction

dSavannah note: You may have noticed I haven’t published anything since May 12, #MEAwareness / #MillionsMissing Day. All of that advocacy wore me slap out (and I don’t think I’ve recovered yet).

A friend in one of my MEcfs support groups, Jonathan, took almost two months to write this to share with his family and friends to educate them on his reality. I asked if I could publish it on my blog, and he said yes. What you are reading is exactly as he wrote it (so any typos are his, not mine for once. ha!).


Dear friends and family,

This is a message from Jonathan. The impetus for this message is that May was ME/CFS awareness month, but I also wanted to update you on what is happening to me. I don’t want my silence to be mistaken as a sign that I am doing well. I miss being in the world with you all more than I can say.

For the past 12 years, I’ve been living with increasingly severe ME/CFS. ME/CFS, or myalgic encephalomyelitis/ chronic fatigue syndrome, is a disease characterized by profound fatigue, cognitive dysfunction, sleep abnormalities, autonomic manifestations, pain, and other symptoms that are made worse by exertion of any sort. Despite the potential severity of the illness, patients are stigmatized and receive poor care, doctors are mostly uninformed, and there is very little money for research. This illness is recognized by the National Institute of Health and the CDC, but decades of neglect have made wider recognition and funding for research a very slow process.

Jonathan

This is Jonathan. He has severe ME/CFS.
NO ONE wants to live like this.

​This is a picture of me today. I have have now been ill, homebound, and missing from the world for half my life. Today, I am nearly entirely bed-bound. I am only able to leave my bed (with difficulty) to use the toilet. I can no longer bathe myself, use a computer, read, or listen to music. I am increasingly reliant on my mother to perform basic tasks for me. I spend every waking moment affected by many severe symptoms which taken together have an extremely large negative effect on my quality of life. There is currently no treatment for ME/CFS, and recovery is very rare.

Realistically, there is only one thing that will keep me from spending the rest of my life in this situation: the development of medical treatment through an improved scientific understanding of the illness. However, our government chooses to spend a pitiful sum of money on research into this poorly-understood disease—an amount that is nowhere near commensurate with its prevalence and severity:

ME funding vs disease burden

This graph is from a study which shows how much research funding ME/CFS receives versus how much it “deserves” based on how prevalent and debilitating it is.

This next graph is from a study which compared the average quality of life of people with various illnesses (including ME/CFS). A lower score means worse quality of life. For more information on how ME/CFS affects quality of life, see Kingdon et al., (2018) and Nacul et al., (2011).

ME quality of life

(dSavannah note: Do you see the staggering lowness of our scores? Do you? Worse than basically any.other.illness! And we’re forced to live like this with so little recognition and so little hope…)

​The following image illustrates how dire the funding situation is. Research suggests that ME/CFS has a larger negative impact on quality of life than multiple sclerosis, yet multiple sclerosis receives 20 times more funding despite it affecting less than half as many people:

ME Funding Prevalence

*emphasis mine

At this rate of funding, meaningful progress toward the development of treatment could take several decades. For ME/CFS patients as ill as I am, these decades will consist of unremitting suffering.

Thankfully, there are organizations now working on behalf of patients to speed up progress. Due to their efforts, there was recently a resolution introduced in the US senate—SR-508—which would provide official recognition of the seriousness of the illness and of our government’s obligation to work urgently toward discovering the cause of and a cure for it. If passed (if enough Senators vote “yes”), SR-508 would become a useful tool for advocates in their fight for more equitable funding. If you are able to, please visit this link and follow the instructions to encourage your Senators to vote in support of this resolution. It can be done in just a few clicks, and we would be very grateful if you did so.

–Jonathan


If you’d like to learn more about the illness:

A few months ago, this article about the state of ME/CFS research was published in the prestigious science journal Nature.

The award-winning documentary Unrest, created by Harvard PhD student Jennifer Brea, is a moving and informative portrayal of this illness. It’s currently available to watch on Netflix.

Recently, our government’s main health agencies (CDC, NIH, FDA, etc.) convened an expert committee to examine all published scientific research on ME/CFS and create a report to inform government policy. That report’s primary message: “ME/CFS is a chronic, complex, systemic disease that often can profoundly affect the lives of patients.” The committee also stressed that “more research is urgently needed.” (PDF download)


Thank you to Jonathan for letting me share his story and the information he’s gathered.

Want to help him and patients like him, and help me as well?

  1. Donate to Open Medicine Foundation - they are doing lots of great research into the causes and possible treatments of ME (tax deductible in the US)
  2. Donate to #MEAction - they are focusing on advocacy and education (tax deductible in the US)
  3. Donate to #MEAction’s  campaign to support their work for the remainder of the year as they expand their reach, build community, increase advocacy, educate doctors and scientists, and inspire new researchers and clinicians to join the field
  4. And, as Jonathan urged, contact your Senator via this easy online tool and ask them to support Resolution SR-508 to recognize this terrible disease

More ramblings / other posts you might want to read...

dSavannah

About dSavannah

~ #disabled #spoonie fighting numerous, chronic, painful #InvisibleIllnesses ~ also #wife #feminist #ally #advocate #papyrophiliac #DogCatTurtleWrangler
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2 Responses to #MEAwareness: Guest Post on Life with ME

  1. Char says:

    Thank you for such a well written and informative post. We can use all the help we can get! I have shared.

    • dSavannah dSavannah says:

      Thank you so much for stopping by and reading, and sharing. I appreciate it, and I’m sure Jonathan does too! <3

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