The Disconnect between Rhetoric and Reality in Myalgic Encephalomyelitis (ME)
Posted Mar 21 2012 3:19pm
I am posting my upcoming column for Life Skills Magazine here today as a tribute, and in honor, to Emily Rose Collinridge, who passed away from Myalgic Encephalomyelitis (ME) this past week.
Photo Credit: Stonebird
In my column this month, I wanted to use my words to pay homage and honor to a fellow Myalgic Encephalomyelitis (ME) fighter who succumbed to the illness earlier this month. Every time I receive news of yet another patient dying as a result of this horrendous illness, my heart breaks. I find myself struggling to find a way, some way, to shed light on the truth that is Myalgic Encephalomyelitis (ME).
Today, I have decided to use my words to shed light on the truth that those of us who live with this illness, instinctually, innately and interminably understand that this is not an illness of somatization or fatigue. It is much, much worse and so much more.
I think, for me personally, the most challenging part of the news that Myalgic Encephalomyelitis (ME) has once again taken another life, is the realization that so many people truly do not understand this illness or the life threatening consequences that can occur as a result.
This is partly due to a move within the medical realm – specifically the psychiatric arm – to make this illness nothing more than a matter of mind over body. In the words of Professor Simon Wesley of the Kings College London, ME,
“[….] generally has some organic trigger, such as a virus but that the role of psychological and social factors are and treatments centered around these factors can be effective. He sees viral attribution in CFS as ‘somatization par excellence’” [link 1][underlining added for emphasis]
In essence, Wessley is saying that those who suffer with Myalgic Encephalomyelitis (ME), while the origin of their illness is real and valid, make the illness worse by placing more emphasis on being sicker then necessary, thus, making themselves much more ill or sicker for longer durations.
While this perspective is unfortunately growing within the medical arena, lives like Emily Rose Collingridge reveal the profound disconnect between patient and medical professionals. It is a disconnect between rhetoric and reality.
Emily became sick with Myalgic Encephalomyelitis (ME) when she was only six (6) years old. Take a moment and think about that. Most of us who have children would do everything in our power to ensure that our children are able to recover from any virus they get.
And yet, there is this huge population – some numbers now have those with ME at 17 million worldwide – who become sick and never recover. In addition, many of these same individuals are dying from the damage that this illness wreaks on the body.
Despite the evidence to the contrary, people like Professor Wesley continue to espouse harmful rhetoric that this illness is just about mind over matter. Anyone that knew Emily would know that is absolutely not the case.
One of the most interesting things I have encountered in meeting people with Myalgic Encephalomyelitis (ME) is that they are far from individuals who choose to focus on the illness, or who are not aggressively doing all they can to get well or have as normal a life as possible.
In fact, most people I meet with this illness have accomplished more in their limited capacity and lives than that of their healthy counterparts. Again, Emily is a perfect example. According to Indigo Jo,
“Emily Collingridge, the author of the book, had died. She passed away in hospital last Sunday afternoon, after a long admission. She was 30 years old and had been bedridden since her late teens, during which she had worked in a voluntary capacity for AYME (the Association for Young People with ME) and the family support charity, Home-Start. She did both of these jobs from her bed, but was forced to stop when she suffered a devastating relapse in 2005.
After her health improved somewhat (although she was still bedridden and in great pain), she wrote her book on severe ME, with the co-operation of experts including Dr. Nigel Speight, and numerous friends in the ME community including fellow sufferers and carers. It was published through AYME which sold it at cost to most of those who bought it, and at a subsidized price to severely affected members of AYME. The book received widespread acclaim, including from the 25% ME Group which is opposed to AYME’s position on matters such as the NICE Guidelines (the PACE trial had not been published by then). Having corresponded with Emily’s mother Jane and others on the Facebook group set up to promote the book, it was clear that the Collingridge’s subscribed to none of AYME’s revisionist views about ME; they regarded it as a neurological disease and expressed dissatisfaction at the lack of biomedical research and the influence of Prof Simon Wessely and others like him. They also discussed the possibility of setting up special units for environmentally sensitive patients, including those with ME.
She suffered another major relapse after the book was published, and initially reported that she had found her own book to be of great value in managing it. She never recovered, and wrote of her terrible suffering on Greg Crowhurst’s Stonebird website. She remarked that, if you saw her, you would think she was about to die. She was admitted to hospital sometime in late 2011, after being on the “urgent list” for some time, and her family turned over the group and promotion of the book to others.”
When one stops to consider all she did, from her bed and in the devastating shape her body was in more oft than not, one has to wonder if “it’s all in your head” is appropriate … or for that matter … even helpful.
Emily’s life shows us that people who contract this illness do not stop dreaming, living, or engaging with their lives as a result of the sometimes devastating consequences of ME in their bodies. Quite to the contrary, they adapt to the severe limitations set on them by a body that is broken and no longer able to function normally, and they find a way to fulfill their lives within these new constraints.
Despite popular (medical) belief, ME sufferers do not choose to focus on their symptoms making their illness worse. They, instead, choose to fight, write, paint, create, blog, encourage, enable, lift, inspire, educate, and much more. Often from within homes they can no longer leave; beds they can no longer get up out of; or from wheelchairs that they are now dependent on.
It is time for the medical arena to praise the determined spirit that breathes and beats within those who live with this illness. And it is most definitely time to stop regurgitating the ‘somatization’ rhetoric and go about the business of finding a causal link and cure.
Until then, compassion, empathy, and common sense treatment plans that make the lives of ME sufferers more bearable until a cure is found is the greatest tribute we can pay to the heroic ME fighters that have left our community … like … EMILY ROSE COLLINGRIDGE.
*To learn more about Emily or about Myalgic Encephalomyelitis (ME), please follow the links below.