Tomorrow April 8th is severe ME day. I’m still writing about this because no one else is, because no one is helping us, and because severe patients cannot advocate for themselves. It’s tempting to use today to describe how severe ME is, but today is not about that.
In the past 18 months, several people have asked me why I insist on referring to the treatment of these patients as medical abuse. Even my most supportive friends are suspicious that this characterization is too extreme. I have also been asked why I fly to California several times a year for treatment instead of seeking help through the NHS. This film answers those questions. It is hard to watch, but it is much harder to live.
“I thought the film was powerful and that it should be part of the medical curriculum in the United States. I think that we often forget why we went into medicine. We didn’t go into medicine for fame or money. We went into medicine because of the internal drive to decrease suffering in people. The film shows how medical arrogance compared with narrow vision can be toxic and can bring more suffering to a group of patients that are already suffering.”
– Jose Montoya, Professor of Medicine (Infectious Diseases and Geographic Medicine) at the Stanford University Medical Center.
To watch, click rent, when you get to the payment screen enter the promo code VOICES.
Australian media just published this emotional interview featuring journalist David Tuller moved to tears (link below). Tuller is one of the most outspoken and effective activists for integrity in ME/CFS research. Many prominent academics in this field have either produced lazy research or published outright fraudulent results. This harms patients because it wastes limited research funding. If we don’t we don’t have sound biomedical research, we can’t develop treatments, and we can’t get better. Thankfully, Tuller has forcefully spoken up, even when the medical establishment ignored this cause. I’m sharing my reaction to the interview here because we will only get help if healthy people can see us.
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:
BBC just published the headline, “Anti-depressants: Major study finds they work,” based on a study recently released in the Lancet, but the true effect is smaller than this headline would lead you to believe. Dr Steve Ilardi, a prominent academic at Duke, looked into the fine print. What wasn’t mentioned was that, “The average outcome difference between those on medicines vs placebo was about 2.4 points on 55-point HRSD depression rating scale. Britain’s National Institute for Clinical Excellence has called such effects “clinically insignificant.”
Panel discussion in Berkeley yesterday after Unrest screening between Lily Chu MD, Ron Davis PhD, José G. Montoya MD, and David Tuller MPH. If I were organizing a showing in this space, this would be my dream list of panelists. Credit is due to the team who put this together. The overarching themes were of medical neglect, challenges in activism, and the stigma faced by doctors and researchers who are brave enough to fight for us. Overall the responses were as strong as could be expected from this group. It helped that the audience asked excellent questions.
Right now there is a campaign asking ME patients to submit letters describing harm they have experienced at the NHS. In light of this, last night a friend asked me if he should report his doctor for medical abuse or not. He worried that it could negatively impact his ability to get treatment and, since he works in health, negatively impact his career. Continue reading “How does it get to this point?”
Coming home one evening in October, I realized that despite everything that happened, I felt grateful. After being stuck inside for months, I could get out again, I was still in school, I could still study, I could still bike. The air was cold on my skin, but I didn’t want to go home. I wanted to hold onto the feeling for as long as possible. I thought about the other patients, many who can’t speak, or leave their homes or see the light. There are so many others not as lucky. Months later, I’m still grateful every time I bike home. I almost lost these things. I could lose them again, but I have them now and I am savoring that.
This is a positive advocacy story since I do not have many. When I saw my hematologist last Spring she said at first I had mono. I said I wasn’t positive for active mono. I’d been to other doctors and been tested many times. She looked me up and down, paused, and said, “well… you’ve got it somewhere.” At the next appointment when I still was not better she stuck to the virus theory but then said, “unless you believe in Chronic Fatigue Syndrome.” Continue reading “A story about one of the good ones”
I’ve been feeling a bit better this past week. It’s such a nice change. I have no idea how long it will last but I’m grateful for any moment of improvement. Today somebody asked me what city I plan to live in after I graduate and I was able to answer honestly. Normally this question really hurts my feelings because I don’t know if I’ll be able to graduate. I don’t know if I’ll ever be able to work or live on my own. But today it didn’t. A professor at my university asked if I wanted to be in an ME study and I thought, “if my symptoms are getting better will I still be able to provide valuable data?” Continue reading “Partial Remission?”