Saturday, February 21, 2015
Friday, February 20, 2015
Thursday, February 19, 2015
Tuesday, February 17, 2015
But this is not the real story; the real story is the scandal of an entire patient population which has been marginalised, stigmatised and wilfully neglected for generations. The fact that the IOM, along with other agencies (the NIH's P2P is next up), has recently been charged with addressing that appalling deficit is an insidious distraction from that deeply unpalatable core issue.
During the presentation, chair of the IOM's committee, Dr Ellen Wright Clayton, said that the report gives advocates and patients a "tool" with which to "act up". No, Dr Clayton, we are the ones who are ill and we've been doing this for far too long. The way we have been – and continue to be – treated by government agencies in all countries is a scandal. Until that is publicly and universally acknowledged, we cannot move forward, however noble your stated intentions. The time for a complete top-down culture shift is way overdue.
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
- "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.
The IOM alleged that the term ME is not medically accurate, but the
names of many other diseases have not required scientific accuracy
(e.g., malaria means bad air). Regardless of how one feels about the
term ME, many patients firmly support it. Our research group has found
that a more medically-sounding term like ME is more likely to
influence medical interns to attribute a physiological cause to the
illness. In response to a past blog post that I wrote on the name
change topic, Justin Reilly provided an insightful historical comment:
for 25 years patients have experienced "malfeasance and nonfeasance"
(also well described in Hillary Johnson's Osler's Web). This is key to
understanding the patients' outrage and anger to the IOM.
So how could this have happened? The Institute of Medicine is one of
our nation's most prestigious organizations, and the IOM panel members
included some of the premier researchers and clinicians in the myalgic
encephalomyelitis and chronic fatigue syndrome arenas, many of whom
are my friends and colleagues. Their review of the literature was
overall comprehensive; their conclusions were well justified regarding
the seriousness of the illness, identification of fundamental
symptoms, and recommendations for the need for more funding. But these
important contributions might be tarnished by patient reactions to the
name change. The IOM solicited opinions from many patients as well as
scientists, and I was invited to address the IOM in the spring
regarding case definition issues. However, their process in making
critical decisions was secretive, and whereas for most IOM initiatives
this is understandable in order to be fair and unbiased in
deliberations, in this area — due to patients being historically
excluded and disempowered — there was a need for a more transparent,
interactive, and open process.
So what might be done at this time? Support structural capacities to
accomplish transformative change. Set up participatory mechanisms for
ongoing data collection and interactive feedback, ones that are vetted
by broad-based gatekeepers representing scientists, patients, and
government groups. Either the Chronic Fatigue Syndrome Advisory
Committee (that makes recommendations to the Secretary of US
Department of Health and Human Services) or the International
Association of ME/CFS (the scientific organization) may appoint a name
change working group with international membership to engage in a
process of polling patients and scientists, sharing the names and
results with large constituencies, and getting buy in — with a process
that is collaborative, open, interactive, and inclusive. Different
names might very well apply to different groups of patients, and there
is empirical evidence for this type of differentiation. Key
gatekeepers including the patients, scientists, clinicians, and
government officials could work collaboratively and in a transparent
way to build a consensus for change, and most critically, so that all
parties are involved in the decision-making process.
Leonard A. Jason is a professor of clinical and community psychology
at DePaul University, director of the Center for Community Research,
and the author of Principles of Social Change.
Monday, February 16, 2015
Most people seem to fall out with the word Exertion, but to me this has it's benefits. It occurs to me that this name hurts those promoting exercise therapies as the answer to our illness precisely because this word is present. No bad thing. No bad thing at all.
Systemic is good, and Disease is good. Very good in fact. It says this disease is complex and serious and that it is real.