Mary Dimmock has published an extraordinary review of the last thirty years of ME history. With her permission, I’ve reported her announcement with the link to the full document below. I highly recommend reading as much of this document as you can, and saving it for future reference.
Five years ago, I was working in the pharmaceutical industry when my son fell victim to myalgic encephalomyelitis (ME). Overnight, everything I understood about medical care and about how diseases are researched and treatments developed was suddenly turned on its head. This wasn’t medicine or science as I knew them but rather medical disbelief and disdain and a quagmire of conflicting and irreconcilable disease labels, definitions, theories and research findings. My son’s life and his entire future was and is being held hostage by a parade of biases, disinterest, personal agendas, politics and sloppy science that had been going on since before he was even born.
The bald fact is that in the last thirty years, HHS has not only failed to produce a single meaningful outcome for patients but has turned ME into a pariah. We need a sweeping reboot of every single facet of HHS’s public policy toward this disease. But HHS has been unwilling to make any meaningful changes, let alone the magnitude of changes needed in the timescale needed to address the damage that has been done.
To change the future of ME patients, we have to change the politics and the public perception of this disease. We need to break down the walls of confusion and misinformation that have buried ME. We need to find new ways to tell the shameful story of what has been done to ME patients.
With the intent of providing a tool to help with such efforts, my son and I compiled a detailed, referenced document titled Thirty Years of Disdain: How HHS Buried ME. This document is intended to bring together in one place key events in the story of HHS’s failed public policy toward this disease.
The resulting document is long, making it more suitable as a deep background reference. We are creating shorter, targeted pieces to focus on congressional leaders and the media. The community is welcome to use it if it’s of benefit in their advocacy efforts. http://bit.ly/The_Burial_of_ME
Comments are welcome and can be sent to medimmock@gmail.com. I will do my best to respond.
Amazing work, Mary! This is sure to make waves and be a real resource for years to come.
Mary’s document is one of most comprehensive I have ever read; exceptional work. Thinking about how long ME has been marginalized made me think of something I read recently. This is taken from the book, “First Family” Abigail & John Adams, by Joseph J. Ellis. The first symptoms of rheumatoid arthritis appeared during her London years, but the chronic and degenerative disease advanced to new levels of intensity in the 1790s. “I have been so weakened and debilitated as to be unable to walk alone”, she reported in 1791, “and my Nerves so affected as to oblige me to seclude myself from all company except my most intimate companions.” Her rheumatic symptoms, chiefly swelling of the joints, ebbed and flowed in waves of pain and paralysis, often exacerbated by cold weather and the rigors of travel. During one especially acute attack she was confined to bed for six weeks. Even writing letters became difficult, because she could not hold a pen.
By 1792, the end of John’s first term as vice president, the extra weight she had put on in Paris and London was gone. “I have scarcely any flesh left in comparison of what I was,” she reported, probably a function of not being able to eat for prolong periods. The trip from Braintree to Philadelphia became an excruciating ordeal, limited to only a few hours of travel each day. This was the major reason for her decision to remain at Braintree for John’s entire second term. During her last season in Philadelphia she found her social obligations “an Egyptian task”? because of her chronic condition and she was forced to decline about half the invitations for health reasons. Better to remain at home, she decided, than become a burden.
Considering this was the late 1700s, I expect most unexplained body pain was called rheumatoid arthritis. Is it possible that our second “first lady” had ME ?
Diagnosing people by retrospective history is obviously a silly endeavor, but it’s funny that you should mention this description, Deborah. I was listening to an audiobook earlier this year about the chief builder of the Brooklyn Bridge. Several paragraphs later in the book were devoted to a discussion of a prolonged period of “post-caisson disease” (if i remember correctly), that sounded remarkably like ME. I understand from readings on underwater archaeology that prolonged periods at depth suppresses the immune system, which might be loosely analogous to the hit and run described by doctors and experienced by so many patients. He later recovered, but it is interesting to wonder how far back go the roots of this disease.
Amazing but I’m frustrated I can’t print out the last three pages to show other people without printing the whole document. I can’t wait for more people to discover this scholarship.
Thanks to Mary and her son for doing the arduous work of producing this amazing document. I am not at the point healthwise where I can read it, but I looked at the summary and glanced at a few other sections.
When I can read it, I will.
But what can be done with it to educate doctors and to compel HHS and NIH to take this disease seriously and do something, fund research, write directives to doctors, do a decent definition with symptoms, etc.
We all know what needs to be done but how can we get this across?
The HHS won’t even respond to their own panel, the IOM’s report, which
was good in many aspects.
We all have to do something.
Science is way ahead of the governmental bureaucracies! What can we do?
Again, thanks to Mary and her son.
I wish we could raise money and print this in the New York Times or on
billboards. I recognize the good article written by David Tuller and the
many other articles written by sympathetic journalists around the country.
Thank you, Mary, Matthew, and Jennie.
This beats the IOM report by far! – What a truly unique piece in ME literature, bringing together a masterly overview of the illness with a very poignant depiction of an intimate experience with it (and of course, an acute view of the decades long “disdain”). One of a kind. – You are a remarkable advocate, Mary Dimmock, and an extraordinary mother…
Wonderful work Mary and Matthew. I haven’t yet finished reading it in depth and know this will take some time — but I hope to take at least part of this May 12th Awareness Day to solidify my understanding of the (what often looks like sordid) history of ME and CFS. The parts I have read are very clear, well referenced, and easy to follow. Allowing free use of its contents is much appreciated. I hope everyone will take full advantage in their communications with policy makers and others. Thank you for posting, Jennie. I agree with your recommendation to save it for future reference.
Mary,
wonderful work and a great resource. Haven’t finished the article yet but thought I would mention that when you quoted something with the phrase Pwc, you did not mention what it stood for. For those of us who have been around for 30 years, we know. Newer folks would have no idea. The editor in me caught it.
Nancy, former masscfids board member
I am truly embarrassed for you. CFS/ME is not a disease. The cause of CFS/ME is Lyme disease and co infections.
All viewpoints are welcome here, Marie. However, I do ask that we be respectful even when we disagree. Telling us that we embarrass you because we are so wrong about our disease is condescending. There is a range of opinion about the role of Lyme in ME/CFS. Fact based discussion is welcome. Dismissiveness is not.
It is unfortunate that the reaction of so many people to the government’s implicit assumption that medically unexplained fatigue can only represent one disease (demonstrated through their creation and advancement of CFS definitions over thirty years) is the equally reductive claim that medically unexplained fatigue is all due to one pet cause. It is bad enough that people attempting to raise awareness and advocate for causes falling within this space harm our respective causes through lack of self-awareness and discrimination, but it is much worse when those same people sow discord to no purpose. In the years that I have been sick, I have seen people advancing Lyme, environmental mold, candida, antibiotics, ME, vaccines, Ehlers-Danlos, gluten, environmental chemicals, and many, many others as the sole explanation for all the problems within this space. This approach is as illogical as that which created this situation and will not advance us one iota. There may be many diseases under the “CFS” umbrella and we need to drive better diagnostics to distinguish between them.
Thanks for your comment Matt. I agree with you.
Really, NIH, a secret plan?
From page 113:
In reality, though, it is not possible to know exactly what is included in NIH’s
plan, because the NIH has not publicly shared their plan. In a personal email exchange in December 2012, NIH’s Dr. Maier said … that the prioritized plan could not be shared “because it is an internal, dynamic working document open to changes in light of new discovery.”
I well remember Richard Nixon’s “secret plan” to end US mass murder in Vietnam. His plan was so secret that it didn’t exist. Fortunately the Vietnamese had their own plan.
Has anyone tried to obtain the NIH Secret Plan via FOIA? What do they call it, “Cure with Honor”? (Nixon’s plan was called “Peace with Honor”)
Is the plan secret in order to protect National Security, or the privileged position of certain NIH administrators?