Dear Jeremy Hunt,
On the heels of Unrest, an Oscar-nominated documentary about ME/CFS being shown in Parliament, the removal of outdated treatment advice from the CDC website, and the reopening of NICE guidelines for review, I am writing to request your support for the MAIMES Campaign led by Dr. Sarah Myhill. MAIMES stands for Medical Abuse Against ME Sufferers and was inspired due to the lack of care available on the NHS for ME patients. This is medical abuse against the patients and also medical abuse against the doctors who do not have the adequate training to carry out their hippocratic oath to do no harm.
The current institutional support for NHS for both doctors and patients is nonexistent. One of my friends was an NHS doctor and had to leave her job due to having ME. She is shocked that, as an experienced physician, she was once responsible for training doctors and yet did not know very much about it. She had the disease for years and did not know she had it despite working in medicine!
I am a current Oxford student who has suffered from ME for the past 15 years but was forced to withdraw from school when I was studying at LSE last November. I had been going to the doctor for the past several years as my health declined but was always told I was fine and there was nothing that could be done to help me. Later I found out that the tests run at those appointments were the wrong tests for ME patients and the tests that were run were misinterpreted. By the time I withdrew from school my neurological symptoms were so intense I could not read. At one point I was trapped in an elevator due to being unable to interpret the buttons and, on the way to the doctor, I was afraid I would die due to being unable to understand the traffic signals to cross the street.
When I finally made it to the NHS I was told again that, despite all my symptoms, the only possible cause was psychological and that I would be best served by finding a therapist, avoiding exam stress, and getting better sleep. Realizing I was on my own, I spent the next year reading medical journals and medical books from my bed. Some days I could only read a paragraph a day. I felt overwhelmed by the medical and technical jargon and angry that the people who had been through school specifically for this purpose had left me on this journey alone. Thankfully, I was one of the lucky ones. Eventually I found a treatment that allowed me to leave my bedroom and have conversations during the day. I am back in school for now but there is no way to know how long these treatments will work. Thanks to the internet, I suspected I had ME months before I had an official diagnosis and put early treatment interventions in place mitigating much of the worst parts of the disease other patients experience. Not all patients have been so lucky.
Due to the lack of recognition in the medical community, my NHS doctor friend has joined thousands of other ME patients whose level of functioning has sharply declined due to not managing the disease correctly in its early stages. Current NICE guidelines promote treatments that are known to be harmful such as Graded Exercise Therapy. This is equivalent to prescribing gluten to a celiac patient or sugar to a diabetic under the short-sighted idea that exposure alone is enough to reverse the disease course. In the ME community, I regularly meet people who became wheelchair bound or bedridden after going through exercise therapy and never recovered to their previous state of health. Doctors following these guidelines are unwittingly causing damage to their patientâ€™s bodies that is potentially irreversible.
I am writing to urge you to open an investigation into the treatment of ME patients at the NHS. It is cruel to leave patients to fend for themselves to find their own way at the exact same time they are losing the neurological ability to learn new things or understand text. It is the responsibility of doctors and the medical community to know what tests need to be run and what treatments will work. This is not the responsibility of patients. Unfortunately, in the case of ME, it is the patients themselves who need to do all the work.
I have spent a long time thinking about whether MAIMES was the right approach. Maybe it is too confrontational? Maybe we should be trying more to partner with doctors instead of work against them? However, patients have been suffering for decades and the NHS has reacted only with indifference. Despite advancements in cancer, AIDS, and MS research in recent years the indifference of government and medical professionals have left ME patients with the same treatment prospects as 30 years ago.
This disease once took my ability to communicate and it may take it again. There are patients like me such as Tom Cammenzind, a Stanford student, who tried study with ME. He would stress himself out to finish an assignment and need to sleep the entire next day. Now, he cannot walk or speak. He eats through a tube. I go to school every day thinking, if I push myself too much will that happen to me? If it does not come to that, who is going to hire me when I am this sick? I dreamed my whole life of studying at a school like Oxford. Now that I am here, I may not be able to use my degree because my abilities are so limited. I may not be able to have a life at all.
I decided that I must speak out now, because I may not always be able. Recently, the first person I met with ME died due to medical neglect. It is long past time we call this abuse for what it is, at least until it is clear those in power have decided to listen.
I am calling on you to demand a public inquiry into the care of ME patients at the NHS. Will you lend your support to the MAIMES campaign?