Tuesday, February 10, 2015

Preface and Summary of IOM report

The committee "developed evidence-informed diagnostic criteria for this complex, multisystem, frequently
undiagnosed, often life-altering condition. The committee was able
to redefine the diagnostic criteria for this disease so that they are easy to
understand and apply and capture the essence of the disease's unique symptomatology.
The committee recommends an evidence-based, disinterested
procedure by which these criteria can be refined in the future on the basis
of new research.
These are doctors who have taken care of us.  They have seen the disease, and know the effects.  They recognize the severity, in ways that other committees have not.
Listening to the comments and testimony provided for this study, as
well as examining advocacy websites and the Voice of the Patient report,
the committee determined that the name "chronic fatigue syndrome" has
done a disservice to many patients
and that the name "myalgic encephalomyelitis"
does not accurately describe the major features of the disease. In
their place, the committee proposes "systemic exertion intolerance disease" as a name that more fully captures the full scope of this disorder."
Seeking and receiving a diagnosis can be a frustrating process for
several reasons, including skepticism of health care providers about the serious nature of ME/CFS and the misconception that it is a psychogenic illness or even a figment of the patient's imagination. Less than one-third of medical schools include ME/CFS-specific information in the curriculum
(Peterson et al., 2013), and only 40 percent of medical textbooks include
information on the disorder (Jason et al., 2010). ME/CFS often is seen as
a diagnosis of exclusion, which also can lead to delays in diagnosis or to
misdiagnosis of a psychological problem (Bayliss et al., 2014; Fossey et al.,
2004; Jason and Richman, 2008). Once diagnosed, patients frequently
complain that their health care providers do not know how to deliver
appropriate care for their condition, and often subject them to treatment
strategies that exacerbate their symptoms.
This has always been a big problem.  Doctors who don't know what they're dealing with will tell you to exercise your way back to health, which can land you in bed for years.  Having a diagnosis may be reassuring, "it has a name", but if the doctor has no clue what to do for you, having a diagnosis is ONLY of emotional benefit.  You're still sick.  
They "read the full text of these articles,
extracting their findings and using an adapted "GRADE grid" to
record judgments as to whether there was sufficient evidence that
certain symptoms and abnormalities define either ME/CFS or a
particular subtype of the disorder (see Appendix B for the grid
Chapter 7 presents the committee's recommendations, including new diagnostic criteria and a
new name for ME/CFS, and operationalizes the new criteria.
The primary message of this report is that ME/CFS is a serious, chronic,
complex, multisystem disease that frequently and dramatically limits the
activities of affected patients. In its most severe form, this disease can consume
the lives of those whom it afflicts. It is "real." It is not appropriate to
dismiss these patients by saying, "I am chronically fatigued, too."
It is never appropriate to dismiss ANY patient's symptoms.  There's a reason for them, and it's the doctor's responsibility to find that reason.  Do more tests.  Do even more tests.  Consult older and wiser doctors.  But do NOT tell the patient she's imagining things or exaggerating unless you have actual proof that this is true.
Recommendation 1: Physicians should diagnose myalgic encephalomyelitis/
chronic fatigue syndrome if diagnostic criteria are met following
an appropriate history, physical examination, and medical work-up.
A new code should be assigned to this disorder in the International
Classification of Diseases, Tenth Edition (ICD-10), that is not linked
to "chronic fatigue" or "neurasthenia."
Getting away from those old, psychobabble notions will be a great help to patients.
the committee was struck by the relative paucity of
research on ME/CFS conducted to date. Remarkably little research funding
has been made available
to study the etiology, pathophysiology, and
effective treatment of this disease, especially given the number of people
afflicted. Thus, the committee was unable to define subgroups of patients
or even to clearly define the natural history of the disease. More research
is essential.
This is what patients have been begging for since the beginning -- research.  You can't fix what you don't understand.  You'll never find what you're not looking for.
The criteria proposed here will not improve the diagnosis and care of patients unless health care providers use them.
And there's the problem.  Experts have known for a quarter-century that brain scans of various sorts were showing a problem; that information was not being used by the front-line doctors.  If a well-read patient suggests it to a doctor, the idea is often simply dismissed by the doctor.  And if the patient isn't well enough to do her own research or assertive enough to advocate for herself, the odds of getting that diagnostic test fall to zero. 
Personally, I knew to ask for cardiac testing, and my PCP was willing to order it, but the cardiologist paid no attention to my request for the specific test that Cheney recommended, and instead insisted on giving me a treadmill test because, after all, he's the doctor and he knows better than anyone else.  Except he didn't know better, and hadn't even read the multi-page form his office insisted had to be returned 2 weeks in advance of the appointment, which noted that I have had exercise-induced asthma since I was a child; that alone would have required giving me the stress test by injection while sitting in a chair (as I had requested) rather than on a treadmill.  His lack of information could have killed me.

Doctors MUST use the available information, even if it's given to them by patients.  Paternalistically patting her on the head and saying "don't believe everything you read online" ignores the fact that there is a lot of GOOD information online (including this IOM report).  Doctors MUST drop their prejudices about women patients and about internet-based information, in order to give the best care.  
The committee was convinced of the
value of creating a name that conveys the central elements of this disease, a
practice for which there is much precedent in medicine for disorders whose
etiology or pathophysiology is not yet well understood. After extensive
consideration and mindful of the concerns expressed by patients and their
advocates, the committee recommends that the disorder described in this report be named "systemic exertion intolerance disease" (SEID). "Systemic exertion intolerance" captures the fact that exertion of any sort—physical, cognitive, emotional—can adversely affect these patients in many organ systems and in many aspects of their lives. The committee intends for this name to convey the complexity and severity of this disorder.
My current insurance does not cover my favorite doctor, and has therefore assigned me a new PCP with whom they have been pushing me to schedule an appointment.  Armed with this new name, I will see whether I get better treatment.  I'll also take along the link to download this report, and see whether he's amenable to reading at least essential portions of it.

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