Posts Tagged 'myalgic encephalomyelitis'

(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

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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/

The IOM report – Tuesday, 10 February 2015

The Institute of Medicine’s Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome will hold a public release event for its consensus report on February 10th, 2015 from 11:00 am-12:00 pm EST at the Keck Center of the National Academies in Washington, D.C.  (500 Fifth Street NW, Washington, DC).

Interested individuals will be able to attend the public release event in person or virtually via webcast. “

More info:

http://www.iom.edu/Activities/Disease/DiagnosisMyalgicEncephalomyelitisChronicFatigueSyndrome/2015-FEB-10.aspx

EDIT: Link for registration:

http://www.surveygizmo.com/s3/1957594/Public-Release-of-the-Report-by-the-Committee-on-the-Diagnostic-Criteria-for-Myalgic-Encephalomyelitis-Chronic-Fatigue-Syndrome

Many thanks to each of the advocates who searched for this link!

link to Miriam Tucker’s article Chronic Fatigue Syndrome: Wrong Name, Real Illness

 

http://www.medscape.com/viewarticle/837577_2
“Chronic Fatigue Syndrome: Wrong Name, Real Illness
Miriam E. Tucker
January 08, 2015

Introduction

Sufferers of what has been called chronic fatigue syndrome (CFS) are challenging patients, presenting with complaints of postexertional
malaise, persistent flulike symptoms, unrefreshing sleep, “brain fog,” and often a long list of other symptoms that don’t seem to fit any
recognizable pattern. Some appear ill, but many don’t. And the routine laboratory tests typically come back negative. ….”

http://www.medscape.com/viewarticle/837577_2

Evidence Review Comments Due Monday October 20th

You had a preview of the systematic evidence review comments that some advocates submitted and now you can read the full version (it is in two parts and is lengthy) by accessing the links in this post or by following this link:     

http://www.occupycfs.com/2014/10/18/comments-on-p2p-systematic-evidence-review/

 

Remember – comments are due Monday October 20th.

http://www.effectivehealthcare.ahrq.gov/research-available-for-comment/comment-draft-reports/?pageaction=displayDraftCommentForm&topicid=586&productID=1976

Voices from the Shadows available on Vimeo!

Voices from the Shadows available on Vimeo!

So many of us are immersed in the struggles (particularly in the USA) about definition, diagnosis and treatment (in addition to just trying to make it through the day).

We live the horror of this illness every day and often are at a loss on how to explain it to others. Fortunately Natalie and Josh Bolton made Voices from the Shadows – an excellent film about the severely ill.

The film Voices from the Shadows is currently available on Vimeo for $3.00 (for a one week rental)!

You can access this excellent film from the film website WELCOME page http://voicesfromtheshadowsfilm.co.ukor directly from – https://vimeo.com/ondemand/22513/108797012

 

Please watch and share widely!

They Know What They’re Doing (Not)

by Mary Dimmock (please re-post freely with attribution to Mary Dimmock)

Last week, Jennie Spotila and Erica Verillo posted summaries of just some of the issues with AHRQ’s Draft Systematic Evidence Review, conducted for P2P.

Jennie and Erica highlighted serious and sometimes insurmountable flaws with this Review, including:

  • The failure to be clear and specific about what disease was being studied.
  • The acceptance of 8 disparate ME or CFS definitions as equivalent in spite of dramatic differences in inclusion and exclusion criteria.
  • The bad science reflected in citing Oxford’s flaws and then using Oxford studies anyway.
  • The well-known problems with the PACE trial.
  • The flawed process that used non-experts on such a controversial and conflicted area.
  • Flawed search methods that focused on fatigue.
  • Outright errors in some of the basic information in the report and apparent inconsistencies in how inclusion criteria were applied.
  • Poorly designed and imprecise review questions.
  • Misinterpretation of cited literature.

In this post, I will describe several additional key problems with the AHRQ Evidence Review.

Keep in mind that comments must be submitted by October 20, 2014. Directions for doing so are at the end of this post.

We Don’t Need No Stinking Diagnostic Gold Standard

Best practices for diagnostic method reviews state that a diagnostic gold standard is required as the benchmark. But there is no agreed upon diagnostic gold standard for this disease, and the Review acknowledges this. So what did the Evidence Review do? The Review allowed any of 8 disparate CFS or ME definitions to be used as the gold standard and then evaluated diagnostic methods against and across the 8 definitions. But when a definition does not accurately reflect the disease being studied, that definition cannot be used as the standard. And when the 8 disparate definitions do not describe the same disease, you cannot draw conclusions about diagnostic methods across them.

What makes this worse is that the reviewers recognized the importance of PEM but failed to consider the implications of Fukuda’s and Oxford’s failure to require it. The reviewers also excluded, ignored or downplayed substantial evidence demonstrating that some of these definitions could not be applied consistently, as CDC’s Dr. Reeves demonstrated about Fukuda.

Beyond this, some diagnostic studies were excluded because they did not use the “right” statistics or because the reviewer judged the studies to be “etiological” studies, not diagnostic methods studies. Was NK-Cell function eliminated because it was an etiological study? Was Dr. Snell’s study on the discriminative value of CPET excluded because it used the wrong statistics? And all studies before 1988 were excluded. These inclusion/exclusion choices shaped what evidence was considered and what conclusions were drawn.

Erica pointed out that the Review misinterpreted some of the papers expressing harms associated with a diagnosis. The Review failed to acknowledge the relief and value of finally getting a diagnosis, particularly from a supportive doctor. The harm is not from receiving the diagnostic label, but rather from the subsequent reactions of most healthcare providers. At the same time, the Review did not consider other harms like Dr. Newton’s study of patients with other diseases being diagnosed with “CFS” or another study finding some MS patients were first misdiagnosed with CFS. The Review also failed to acknowledge the harm that patients face if they are given harmful treatments out of a belief that CFS is really a psychological or behavioral problem.

The Review is rife with problems: Failing to ask whether all definitions represent the same disease. Using any definition as the diagnostic gold standard against which to assess any diagnostic method. Excluding some of the most important ME studies. It is no surprise, then, that the Review concluded that no definition had proven superior and that there are no accepted diagnostic methods.

But remarkably, reviewers felt that there was sufficient evidence to state that those patients who meet CCC and ME-ICC criteria were not a separate group but rather a subgroup with more severe symptoms and functional limitations. By starting with the assumption that all 8 definitions encompass the same disease, this characterization of CCC and ICC patients was a foregone conclusion.

But Don’t Worry, These Treatment Trials Look Fine

You would think that at this point in the process, someone would stand up and ask about the scientific validity of comparing treatments across these definitions. After all, the Review acknowledged that Oxford can include patients with other causes of the symptom of chronic fatigue. But no, the Evidence Review continued on to compare treatments across definitions regardless of the patient population selected. Would we ever evaluate treatments for cancer patients by first throwing in studies with fatigued patients? The assessment of treatments was flawed from the start.

But the problems were then compounded by how the Review was conducted. The Review focused on subjective measures like general function, quality of life and fatigue, not objective measures like physical performance or activity levels. In addition, the Review explicitly decided to focus on changes in the symptom of fatigue, not PEM, pain or any other symptom. Quality issues with individual studies were either not considered or ignored. Counseling and CBT studies were all lumped into one treatment group, without consideration of the dramatic difference in therapeutic intent of the two. Some important studies like Rituxan were not considered because the treatment duration was considered too short, regardless of whether it was therapeutically appropriate.

And finally, the Review never questioned whether the disease theories underlying these treatments were applicable across all definitions. Is it really reasonable to expect that a disease that responds to Rituxan or Ampligen is going to also respond to therapies that reverse the patient’s “false illness beliefs” and deconditioning? Of course not.

If their own conclusions on the diagnostic methods and the problems with the Oxford definition were not enough to make them stop, the vast differences in disease theories and therapeutic mechanism of action should have made the reviewers step back and raise red flags.

At the Root of It All

This Review brings into sharp relief the widespread confusion on the nature of ME and the inappropriateness of having non-experts attempt to unravel a controversial and conflicting evidence base about which they know nothing.

But just as importantly, this Review speaks volumes about the paltry funding and institutional neglect of ME reflected in the fact that the study could find only 28 diagnostic studies and 9 medication studies to consider from the last 26 years. This Review speaks volumes about the institutional mishandling that fostered the proliferation of disparate and sometimes overly broad definitions, all branded with the same “CFS” label. The Review speaks volumes about the institutional bias that resulted in the biggest, most expensive and greatest number of treatment trials being those that studied behavioral and psychological pathology for a disease long proven to be the result of organic pathology.

This institutional neglect, mishandling and bias have brought us to where we are today. That the Evidence Review failed to recognize and acknowledge those issues is stunning.

Shout Out Your Protest!

This Evidence Review is due to be published in final format before the P2P workshop and it will affect our lives for years to come. Make your concerns known now.

  1. Submit public comments on the Evidence Review to the AHRQ website by October 20.
  2. Contact HHS and Congressional leaders with your concerns about the Evidence Review, the P2P Workshop and HHS’ overall handling of this disease. Erica Verillo’s recent post provides ideas and links for how to do this.

The following information provides additional background to prepare your comments:

However you choose to protest, make your concerns known!