‘An M.E. patient feels effectively the same every day as an AIDS patient feels two weeks before death.’ Mark Loveless, Infectious Disease Specialist.

Today, August 8th is Severely Ill ME Day, a day created by the 25% ME Group to acknowledge, honor and bring to light the tremendous struggle severely ill people with ME are engaged in.

The Sophia Mirza Story

August 8th was chosen because it was the birthday of Sophia Mirza, a young woman who died of ME.  At the age of 26 Sophia became ill with the flu and bedridden.  Over time she became sensitive to many stimuli including sound, light and electromagnetic fields.  As many of the severely ill do, both physically and metaphorically she lived in darkness – untouched by the help of the medical community.

At the age of 23 on the advice of a psychiatrist Sophie was, against her will, removed to a mental institution for two weeks where she suffered a severe relapse. After leaving the mental institution she continued to deteriorate. On Nov 25th, 2005 she died. An inquest found Sophia had severe dehydration and renal failure and her death was attributed by the medical examiner to CFS. An autopsy later found damage to the dorsal root ganglion that may have explained her symptoms.

A Grim Existence

Having severe ME/CFS leads to a grim existence – an existence that consists more of hanging on than anything else.

Here’s from Mike Dessin one of the few people who experienced the sensory/neurological problems and emaciation that severe ME/CFS often brings  – and recovered:

“For me battling extreme neurological symptoms and complete reliance on a carer was the scariest thing I encountered.  I was constantly worried about being able to maintain a safe, dark and quiet environment. There are no words to describe my experience, but throw in the unfathomable neglect by those close to me and the medical community it’s a true miracle I’ve survived.  If it weren’t for my father supporting me through and finding an amazing doctor I would certainly be dead.”

A Portrait of the Severely Ill

Ben di Pasquale

“I’m amazed he’s kept his sanity” Ben di Pasquale’s father

It’s a difficult, extremely limited existence.Ben di Pasquale was an athletic teenager before he became ill. Now emaciated and weak, he left his house only twice in 2010, both times to see doctors. His father quit the police force to care for him full time.

A Lost Group

Getting help from the medical system when you have chronic fatigue syndrome is tough enough, but doing it after becoming bedridden is difficult, if it not at times impossible.  How, for instance, does a person with severe intolerance to stimuli who can barely move – make it to the doctors office?

Here’s what Jen Brea posted today about her efforts to get medical care when she was at her worse.

At that point I was bedridden 23 hours and 50 minutes a day. Despite occasional good days, I was getting worse and worse. At its worst, my tachycardia was so severe, I couldn’t even lift my head.

When I would try to access the medical system it was generally a disaster. I called every service in my area trying to find a doctor who would do a home visit. Not only were there none, but no one could understand why I couldn’t leave my home. “If you are really that sick, you should call 911.” I tried finding someone to do a home blood draw and I actually got laughed at, “You are clearly young and healthy” – apparently it’s possible to determine someone’s level of disability solely by their voice – “why do you need a home blood draw?”

Possibly the best and fullest account of someone with severely ill ME/CFS  found in the mainstream media highlighted Whitney Dafoe’s story. You can read that in the link below.

• Living on Empty: Newspaper Story Highlights Whitney Dafoe’s Severe ME/CFS

New Focus on the Severely Ill

There is some reason to hope, though. The severely ill have long been excluded from medical studies but that is changing.  Two remarkable studies, one comprehensive in one way and one comprehensive in another, have  recently begun:

CDC Multisite Study

The CDC multi-site study involving seven ME/CFS physicians in the United States will shine a bright light on large numbers of severely ill patients for the first time in the history of ME/CFS. Through this study the world will learn about the sometimes frightful impact ME/CFS can have – not through the lens of the media – but through sober, objective, scientific reports. This study is crucial not just to expand our understanding of the severely ill, but to get the word out about the very, very serious turns this disease can unfortunately take.

The End ME/CFS Severely Ill Big Data Study

In an attempt to pierce through the mystery of the severely ill,the End ME/CFS Severely Ill Big Data study is going to do something very simple and complex at the same time. Lead by geneticist Ron Davis, the project will gather data on virtually every molecular marker it can find. It will gather more molecular data on twenty severely ill patients than has ever been gathered before – perhaps in the history of medicine.

The good news is that a recent $500,000 donation put the project halfway to their goal of a million dollars. Find out more about the project and support it here.

Actions

#MEAction recommends – appropriately – several actions on this day.

1) JOIN THE TWITTER STORM

Tweet all day all the time using the hashtag #severeme. Show solidarity and help severe ME patients trend the hashtag.

2) REMEMBER THOSE WHO HAVE DIED

Today is an opportunity to remember and honor the lives of those who have died.

– National CFIDS Foundation Memorial List

– Hummingbird Foundation for ME Memorial List

3) BREAK THE SILENCE

Participate in the #sufferingthesilence campaign. Whether you are a caretaker, a patient, or a friend, you can take a photo of yourself in the pose above and share it on social media (Twitter, Facebook, Instagram, etc.).

Use hashtags #sufferingthesilence#MEAction and #severeme (email us or find us on Twitter or Facebook – we’d love to aggregate the photos!)