May 12th is ME Awareness Day

We have endured more than 30 years of neglect, dreadful stigma, and woefully insufficient research funding for this horrid disabling disease.

One day for awareness doesn’t seem like enough to make enough of a difference in the current (inappropriate) status quo. We need a significant change!

I think we need a lengthy, aggressive awareness campaign as part of an intensive overall of policy regarding this disease.

Some thoughts on what an awareness campaign might entail are detailed here:

http://www.occupycfs.com/2015/05/05/awareness-reboot/

Stop mistreating ME

Mary Dimmock and her son have produced a valuable resource for us.

Mary explains the origins and significance of this resource:

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.  The document can be accessed at 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.”

Many thanks for Mary and Matthew!

Release date for final P2P report

After delays and process problems, the release date for the final P2P report has been announced. ODP (Office of Disease Prevention) says the final report will be in print and posted on Tuesday June 16, 2015.

Important Notice: The ODP recently discovered that one set of public comments was not forwarded to the panel for consideration. Because the ODP is committed to ensuring that all public comments have been considered, we paused the publication process in order to give the panel time to consider the new information and determine if changes are needed before the release of the final report.

Status Update (April 16, 2015): The new publication date for the panel’s final report will be Tuesday, June 16, 2015, in print in the Annals of Internal Medicine and online on the ODP website. Thank you for your patience to allow for consideration of all public comments.”

https://prevention.nih.gov/programs-events/pathways-to-prevention/workshops/me-cfs

Patient Tasha Kelemen on The Pulse WHYY (an NPR station)

Listen to The Pulse (on WHYY) Fridays at 9 a.m. and Sundays at 10 a.m. on WHYY-FM.

March 12, 2015 The Pulse

Chronic fatigue syndrome gets new name, enhanced recognition

Tasha Kelemen, 42, directs a local non profit. She doesn’t look sick, but she’s had a hard time convincing peers — even doctors — that anything is wrong with her.

“A typical experience will be the resident comes in, looks at my folder, sees that I have chronic fatigue syndrome listed as my primary diagnosis, and then says to me, ‘Well, I think that must be what I have,'” she recalls, laughing. “You sort of learn that there’s no point, that you sort of have to control your anger.”

The condition known as chronic fatigue syndrome is mysterious and complex. It has stumped the medical system for centuries. There’s no test for it, which Kelemen and others say, along with its current name, makes the condition easy to dismiss.”

Listen to the interview here:

http://www.newsworks.org/index.php/thepulse/item/79344-chronic-fatigue-syndrome-gets-new-name-enhanced-recognition

The final NIH P2P report will be out on Tuesday 14 April 2015

ODP had originally indicated that the final report would be published a couple of weeks after the end of the public comment period (16 Jan 2015). The time frame now seems to be more like 12 weeks after the end of the public comment period.

(fwiw – there was a similar delay in publication of the final opioid P2P report. It was due out in October 2014 and was not published until Jan. 2015).

From the ODP (Office of Disease Prevention) website:

Draft Report

Download the Draft Report (PDF – 3.45 MB)

An unbiased, independent panel developed a draft report of the 2014 NIH Pathways to Prevention Workshop: Advancing the Research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, which summarizes the workshop and identifies future research priorities. The public comment period is now closed. The final report will be available on the ODP website on Tuesday, April 14, 2015.”

https://prevention.nih.gov/programs-events/pathways-to-prevention/workshops/me-cfs/workshop-resources#draftreport

(re)Naming ME

There are intense reactions to the name IOM (Systemic Exertion Intolerance Disease, SEID) has proposed for this disease.

It seems that the naming of illnesses is more complex than we would like to believe. Pages 58-59 of the IOM report (http://books.nap.edu/openbook.php?record_id=19012) has Box 3-2 which lists the names submitted to the committee in response to their request for input on the name. Text near Box 3-2 describes the committee’s rationale for SEID.

Astoundingly among the names submitted were “chronic fatigue”, “chronic fatigue syndrome”. Several other submissions included the term “fatigue”. Seriously????

But people are not keen on SEID. In fact it seems that many people are wrapped up in discussions about the name and that the contents of the report seem to be of little interest or concern.

Dr. Lenny Jason has written a blog post about disease names and SEID:

“How disease names can stigmatize

By Leonard A. Jason

  • February 16th 2015

On 10 February 2015, the long awaited report from the Institute of Medicine (IOM) was released regarding a new name — Systemic Exertion Intolerance Disease — and case definition for chronic fatigue syndrome (CFS). Because I was quoted regarding this report in a New York Times article, in part due to having worked on these issues for many years, hundreds of patients contacted me over the next few days.

The reaction from patients was mixed at best, and some of the critical comments include:

  • This new name is an abomination!”
  • Absolutely outrageous and intolerable!”
  • I find it highly offensive and misleading.”
  • It is pathetic, degrading and demeaning.”
  • It is the equivalent of calling Parkinson’s Disease: Systemic Shaking Intolerance Disease.”
  • (It) is a clear invitation to the prejudiced and ignorant to assume ‘wimps’ and ‘lazy bums.’”
  • The word ‘exertion,’ to most people, means something substantial, like lifting something very heavy or running a marathon – not something trivial, like lifting a fork to your mouth or making your way across the hall to the bathroom. Since avoiding substantial exertion is not very difficult, the likelihood that people who are not already knowledgeable will underestimate the challenges of having this disease based on this name seems to me extremely high.”

Several individuals were even more critical in their reactions — suggesting that the Institute of Medicine-initiated name change effort represented another imperialistic US adventure, which began in 1988 when the Centers for Disease Control changed the illness name from myalgic encephalomyelitis (ME) to chronic fatigue syndrome. Patients and advocacy groups from around the world perceived this latest effort to rename their illness as alienating, expansionistic, and exploitive.

Please read the rest of the post here: http://blog.oup.com/2015/02/disease-name-chronic-fatigue-syndrome-me/#sthash.obiMRbIj.dpuf

A letter to the king of Norway from young Norwegians with ME

Letter to King Harald of Norway from Martin and 58 other young people with M.E.

ME mum’s confessions proudly presents an important letter to King Harald from Martin (17). The letter is also signed by 58 other children and youngsters with M.E. (Norwegian original)

A shortened version of the letter was published in the leading Norwegian newspaper aftenposten.no and was also in the printed paper. In the paper, this was an important contribution to the ongoing debate on M.E. We recommend reading the full version. Both the letter and the following quotes make a strong impression.

Dear King Harald,

I write to You because You are our King and have shown that you care about the weak in our society. I also know that you are concerned about children’s and young peoples’s situation in Norway. I write primarily on behalf of my brother and me, but also for many other children and young people suffering from the disease M.E. or myalgic encephalopathy. Having lived with this disease most of my life, I increasingly ask myself the question:

Is Norway really the best country in the world to live in for everyone?
Living with M.E. is a terrible situation by itself, but that’s not why I’m writing to you. I write because especially children with M.E. and their parents today are terribly distrusted and misjudged …”

http://fryvil.com/2015/02/05/letter-to-the-king/



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