If you have anything to do with the ME/CFS community, you can’t have missed hearing about Jen Brea’s TED Talk. Her speech, “What happens when you have a disease doctors can’t diagnose”, was the first of its kind to address ME/CFS. If you haven’t already, I would highly recommend you watch the whole video – Jen is an engaging speaker, and in 17 short minutes, she covers nearly every issue facing ME/CFS sufferers today.
However, I know that not everyone has the time in the day to watch a 17-minute video, and many ME/CFS patients cannot watch video or listen to speech at all. (If this is the case, and you still have the ability to read longer texts, I would recommend looking at the transcript of the speech.) So just for you, I’ve picked out my top ten take-aways from Jen’s speech.
1. ME/CFS is a “perfect custom prison”
Jen describes how she initially became sick: she ran a fever of 104.7F (40.4C); was so dizzy she could barely walk around her house, let alone leave it; had difficulty writing and speaking; and was some days totally paralysed. Her body reacted so violently to a single walk home she spent the next two years in bed. Like so many others with ME/CFS, she is imprisoned by a body that demands payback after the slightest exertion.
If my husband goes for a run, he might be sore for a couple of days. If I try to walk half a block, I might be bedridden for a week.
2. It can affect anyone
Before she fell ill, Jen was training to be a social scientist. Athletes, professionals, students, young and old, have been similarly affected. This disease does not discriminate.
I know ballet dancers who can’t dance, accountants who can’t add, medical students who never became doctors. It doesn’t matter what you once were; you can’t do it anymore.
3. It is common
Worldwide, 15-30 million people have ME/CFS, with 1 million residing in the United States. That makes it twice as common as MS.
4. It can be debilitating
25% of ME/CFS sufferers are house- or bed-bound, and 75-85% of patients cannot work, even part-time. Many patients live for decades with the quality of life of someone with congestive heart failure.
5. Outbreaks are usually dismissed as “mass hysteria”
Although they are not well known, there have been more than 70 historic incidences of outbreaks of ME/CFS-like symptoms. All have disproportionately affected women – and as such, have been characterised by the medical community as “mass hysteria”. Even today, ME/CFS patients such as Jen and myself have been diagnosed with conversion disorder, a modern retake on “hysteria.”
6. We are ignorant about ME/CFS by choice
ME/CFS is one of the least funded illnesses in the world. Biological research has been held back by biased beliefs in a psychological cause. Each year, the US spends $2,500 on each AIDS patient, $250 on each MS patient and just $5 on each ME/CFS patient. That means we know little about the genetics, aetiology or epidemiology of ME/CFS – by choice.
The ignorance surrounding my disease has been a choice, a choice made by the institutions that were supposed to protect us.
7. Ignorance can kill
As easy as it is for doctors to brush off genuine suffering as “hysteria”, this ignorance can lead to dire outcomes for the affected patients. A ’50s study of 85 patients diagnosed with “hysteria” found that many of these patients actually had undiagnosed medical conditions such as MS, epilepsy and brain tumours. Due to their misdiagnosis, 12 patients died and 30 became disabled.
8. Autoimmune diseases are too readily dismissed as hypochondria
Part of Jen’s illness journey has been the discovery of a group of young, chronically ill women who have been rejected by the medical community. Some have been irreparably injured by their doctors’ refusal to take their symptoms seriously, such as the woman who was told for years that her autoimmune disease (scleroderma) was all in her head. By the time she was finally treated, her oesophagus was so damaged, she could never eat again.
In fact, 45% of patients with an autoimmune disease are initially told they are hypochondriacs. Old attitudes about the suffering of women persist, and even though we might not be diagnosed with “wandering womb”, the fact that most autoimmune patients are women means that we struggle being taken seriously by doctors.
9. The ME/CFS community is strong
Despite our suffering, despite our dismissal by the medical organisation, the ME/CFS community is full of strong and resilient people. We gather in the only way we can: online. We share our stories, our treatments, we dissect research and support each other.
We became our own scientists and our own doctors because we had to be.
10. There is hope
ME/CFS is not only disease to have been once thought of as as psychological illness. Epilepsy, MS and even stomach ulcers used to be characterised as psychological in origin, until research proved these assumptions wrong. We may not have had much research into ME/CFS so far, but studies around the world are starting to demonstrate the biological nature of this disease.
Whether scientists are finding evidence of autoimmunity, nervous system inflammation, dysfunctional energy metabolism or even evidence of a chemotherapy drug as treatment, the future of ME/CFS research is looking promising. But we will only truly progress in our understanding of ME/CFS and other invisible illnesses when the biases which uphold our medical institutions are dismantled.
“I remember what it was like when I was stuck in that bedroom, when it had been months since I had seen the sun. I thought that I would die there. But here I am today, with you, and that is a miracle.”