By Erica Verrillo
Change the definition – change the name! Sign this petition!
On May12th – International CFS/ME and FM Awareness Day – members of the ME/CFS community sent a letter to the Department of Health and Human Services asking for a change. They wanted the vague, out-of-date definition of CFS to be replaced with the more accurate Canadian Consensus Criteria for ME (myalgic encephalomyelitis). Theirs was a reasonable, well-argued letter, with all the facts, and with all the logic that a long-suffering population could bring to bear.
The current definition is simply too broad, the letter said, and equates CFS/ME with “fatigue,” thus lumping people with ME together with people with depression and simple deconditioning. The consequence is that, left untreated year after year, comorbidities develop, and people with ME may end up dying from premature heart failure, cancer, and suicide. They also die of ME. In 2005 Sophie Mirza became the first person in Great Britain to officially die of chronic fatigue syndrome.
The DHHS ignored the request. They ignored Sophie Mirza.
They also ignored Sophie Coldwell.
In March 2013, 17-year-old Sophie Coldwell was diagnosed with CFS. Ten days later she was dead. The cause of her death was leukemia. But she hadn’t been diagnosed with leukemia, she’d been diagnosed with CFS, because she was tired. Is Sophie an aberration, someone who somehow “slipped between the cracks”?
She is not.
In the U.S. over 30% of existing MS patients – that’s 1,584 people – were diagnosed with CFS before being correctly diagnosed with MS. These are people who, had they been properly diagnosed in the early stages of the illness, would have had access to treatments that might have slowed or even halted the progression of the disease. Instead, they were told they had “chronic fatigue syndrome,” an illness for which there is no treatment. Those 1,584 people have now had their diagnoses corrected to MS. Just imagine how many people with MS are currently being diagnosed with CFS.
But it doesn't end with hard-to-diagnose illnesses.
More than 10% of people coming to “fatigue centers” in Belgium have been found to have physiological injuries to their pituitary glands – cysts, tumors, and a shrunken pituitary (empty sella). They had been diagnosed with CFS because they were tired. And because they had CFS, nobody bothered to do an MRI of their brains. Is this gross oversight limited to Belgium? It is not. I personally know one man here in the U.S. who, in fact, had no pituitary due to empty sella. It was years before a doctor thought of doing an MRI, because this man had been diagnosed with CFS.
How many more people have to suffer – those of us with ME, those of us with cancer, Hashimoto’s disease, leukemia, MS – simply because the ridiculous diagnosis of “chronic fatigue syndrome” exists?
This needs to stop. Now.
Sign this petition. Tweet it. "Like" it. Reddit it. Send it to your family, friends, neighbors, co-workers. Let's put an end to this medical malarkey. We have 30 days to gather 25,000 signatures to change the definition and change the name. With everybody's help, we can do it.
Do it for yourself. Do it for ME.
Do it for Sophie.
Erica Verrillo is the author of Chronic Fatigue Syndrome: A Treatment Guide, 2nd Edition, now available at Amazon, Barnes & Noble, Kobo and Payhip. Visit her website at CFS Treatment Guide and her blog at Onward Through the Fog. She has signed this petition – and left a comment.