The first was Merryn Crofts, who died May 23rd of last year. Her death was reported yesterday, circulated in a piece of compassionate reporting by the Manchester Evening News. The author describes the story of a women initially diagnosed with Conversion Disorder/Hysteria who recently died due to severe ME. It’s unusual for ME to be discussed in this way in the press, but is potentially becoming more common. This is hopefully a sign of desperately needed cultural change regarding this disease.
The article is short and I recommend reading the whole thing, but these are the parts that stood out:
“She was also ashamed of having ME. Quite often, if asked, she would say she had a neuroimmune disease. That’s because there is a still a stigma around ME, even in the medical community, and there is a lot of misinformation about ME out there. That has to change.”
“Having severe ME is like being trapped in your own body every single day,” she wrote. “There is no rest.”
“We kept thinking it can’t get any worse than this, but it always did.”
The mother’s last interaction with her daughter was, “She asked if I could call out the district nurse, then she said to me ‘I’ve got to be getting off now mum’, said Clare. I went downstairs to wait for the nurse. When we went back she was gone. Looking back it was like she was telling me in such a nice way. It’s like her last thought was how can I make this easy for my mum.”
The second patient died yesterday and his death was reported on the same day. His name was Ian Rudd. He suffered with ME for 23 years. His cousin, Thomas Anderson, wrote:
He was unfailingly positive and kind when able to communicate, despite extreme illness. I am full of grief. And anger that there are still no effective evidence-based treatments for a condition as serious as his — research has been hijacked and hindered by by biased psychiatrists while people like Ian just die. He was terribly ill and just left to rot.
If these death are recorded as caused by ME they will join Sophia Mirza in being the only three patients with this as their official cause of death. Prior to her passing, Mirza was sectioned under the Mental Health Act by her doctors who believed her condition was psychosomatic. Her health declined during this period and never recovered. An autopsy revealed, Sophia’s spinal cord was completely destroyed, and “showed inflammation caused by dorsal root ganglionitis.”
These next two did not happen this week, but were recent. One was posted by Craig Myhill on social media in the form of an anonymized letter submitted as part of Dr. Myhill’s formal GMC complaint.
Finally, Robert Courtney, was a prominent ME activist who recently took his life after a steep health decline. He helped recently publish, “Rethinking treatment of Chronic Fatigue Syndrome,” that examined confirmation bias in research and exposed the deceitful research methods used to justify withholding medical treatment and disability benefit payments from these patients. This report was immediately hugely influential and it is a shame that he was not alive to see its impact.
ME Action wrote in their tribute of Robert,
“It didn’t matter that most of us never met him in person or spoke with him on the phone. We may not have known his face or the sound of his voice, but we loved him. As one patient said, ‘It is the mark of the man that I, someone living on the other side of the world who only knew him through his online posting, should feel so deeply saddened by his death.’”
I never knew this man, but can relate to this description of his influence, because, since falling ill, many of my social interactions have moved online. Most of my friends with ME communicate with me only online. I have spent a great deal of time with them discussing the epidemic of suicide in our community. A close friend said he no longer talks people out of suicide, but rather, talks to them about suicide, because many have such thin financial and emotional support networks or such severe symptoms, that suicide becomes a rational choice.
There are millions of other patients living lives so limited they are almost indistinguishable from death. 75% of ME patients are not able to work, 25% are housebound or bedridden. 100% struggle to access appropriate medical care. This is a human rights crisis. I personally spend most of my available time attempting to increase awareness, reduce stigma, and increase funding for research. I join these efforts alongside many others. We are working as fast as we can. I regret that, for these patients, it was not fast enough.