Day of awareness for severe ME/CFS

It was severe ME/CFS day last week (the 8th of August), and this week the 40th birthday of a lovely friend who has had severe ME/CFS for over a decade. We met at uni in our early 20s, in the in the mid 2000s, and bonded over our love of native plants, went for many plant-appreciation bushwalks, and also worked together on an ambitious project to build a community sustainability demonstration centre, with strawbale building, community garden, food co-op and pizza oven. Nowadays she is confined to a darkened room and completely dependent on her partner and ageing mother to take care of her.

My friend and I building the sustainability centre and planting the first crop of garlic in the community garden, around 2008.

Even though I am often frustrated with my limitations, and very sad about the things I can no longer do, comparing my capabilities with the 25% of ME/CFS patients who have severe ME/CFS and are completely bedbound, makes the things that I can do seem exceptionally & tenuously precious.

For now, I can drive myself to nearby places, walk a few hundred meters and sit on a rock by the estuary, or in the bush amongst the spring wattles. I can read books, write and connect with people on the internet. I can talk with my housemates and have occasional visits with friends. I can crochet, eat most things, stand up long enough to cook for myself, water my pot plants, manage my own finances, shower and live independently. Even at my worst I can drag myself outside onto the deck to watch the clouds move through the sky and feel the breeze on my face. These are precious, precious capabilities. I don't take them for granted, and I live in fear losing them from a long-term crash.

 

There are young people living in nursing homes, people stuck in darkened, quietened rooms, tube fed, unable to listen to music or read, and unable to communicate with anyone as their pain and brain fog is so extreme. Some people are virtually comatose, yet they are conscious and aware of their lives passing them by. Their quality of life has been compared to terminal, last-stage cancer patients, yet their suffering is ongoing for years and mostly unseen by society or the medical profession. The suicide rate is high. And still the diagnostic tests find nothing wrong with them.

This post is to acknowledge their strength, spirit and suffering, and to ardently hope for more research funding and meaningful research breakthroughs as soon as possible.

Nancy Klimas, a doctor who has worked with both HIV and me/cfs patients has said this: 

"My H.I.V. patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in the care of their families. I split my clinical time between the two illnesses, and I can tell you, if I had to choose between the two illnesses in 2009, I would rather have H.I.V."

Here is a link to a video about severe ME/CFS (8.5 minutes). https://youtu.be/CTxwlf7LSrA

For more information, a short book on ME/CFS was recently published called The Puzzle Solver. It's available in the Hobart state library, and tells the story of Whitney Dafoe, a very severe patient, and his father Ron Davis, a renowned genetic researcher, who now focuses all his research on ME/CFS. It also tells of the decades-long struggle by countless patients and doctors for the disease to be taken seriously. The Puzzle Solver - Wikipedia. This article provides a good summary of the book, with pictures. A geneticist’s biggest challenge: Curing his own son | Coronavirus pandemic | Al Jazeera

Research into the disease in chronically underfunded, and the patients are often not well treated by medical doctors who understand it poorly. Here is a graph of funding for ME/CFS compared to some other diseases: (Source: The Male Pattern Baldness Disease? Chronic Fatigue Syndrome's Chronic Lack of Research Funding - Health Rising)

Whitney Dafoe recently began trialing a drug which has enabled him to communicate a little more, and send messages of hope to the ME/CFS community. I visit my friend in her darkened room once a month or so, and she tells me tales of the family of Tasmanian pademelons, native hens and other wildlife she can watch at out her window at dusk.

These two people may be inspiring for their ability to find beauty and hope in life, despite years of imprisonment in very sick bodies, but any research breakthroughs that would enable them to live in even 1% less pain, with 1% more ability would mean the world to them.

Donations for ME/CFS advocacy and research in Australia can be made to Emerge Australia. Donate - Donate | Emerge Australia.

Ron Davis's foundation is called the Open Medicine Foundation. They recently discovered a method to diagnose abnormality in the cells of ME/CFS patients, but were declined a grant to further develop this technology to be available in doctors clinics. Donations to the OMF can be made here: Ways to Donate - Open Medicine Foundation (omf.ngo)

Finally, if anyone knows any GPs and can share with them, Emerge Australia has partnered with ThinkGP to produce a two-part accredited online education series based on best-practice clinical information to assist health professionals to accurately diagnose and support patients with ME/CFS. GP Education Program | Emerge Australia

Thank you for reading

(This is a Tasmanian pademelon in case anyone was wondering!)