Het Institute of Medicine publiceert dinsdag 10 februari haar voorstel
t.a.v. de nieuwe naam en de nieuwe diagnosecriteria voor "ME/CVS".
Deze nieuwe naam en de nieuwe definitie van "ME/CVS" zullen naar verwachting
de Fukuda-criteria voor "CVS" gaan vervangen,
in ieder geval in de VS.
Die Fukuda-criteria hebben de afgelopen decennia voor veel verwarring gezorgd,
zowel in het wetenschappelijk onderzoek als in de medische praktijk (CVS is géén ME).
De afgelopen twee jaar is er een storm van kritiek ontstaan t.a.v. de werkwijze van het IOM.
Als we de voortekenen
mogen geloven, ziet het er niet goed voor ME-patiënten:
een nieuwe naam ("chronische multisystemische ziekte") die nog minder zegt dan "CVS",
en criteria die zo vaag zijn dat ME-patiënten, en zelfs CVS-patiënten, op de grote hoop verdwijnen.
In een kort commentaar schetst Jennie Spotila de eisen die wat haar betreft
gesteld mogen worden aan de nieuwe naam en de nieuwe definitie/diagnosecriteria.
Kort samengevat komen haar eisen ongeveer op het volgende neer:
- De naam CVS moet vervangen worden door ME,
omdat die naam aansluit bij de aard van de ziekte en
de indeling van de Wereldgezondheidsorganisatie (WHO).
- Post-exertionele "malaise" (verergering van de symptomen na een kleine inspanning)
moet een verplicht symptoom zijn voor de diagnose "ME/CVS"
- Gebruik een minimale lijst van verplichte symptomen:
alléén symptomen die bij elke patiënt aanwezig lijken te zijn (post-exertionele "malaise",
cognitieve symptomen: geheugenproblemen etc., en slaapstoornissen) moeten verplicht zijn,
terwijl vaak voorkomende symptomen, zoals pijn en orthostatische intolerantie
(autonome dysfunctie), gebruikt moeten worden voor de definitie van subgroepen.
- Er moeten eisen gesteld worden aan de ernst en frequentie van de symptomen.
Ik kan me zeer goed vinden in de "kwaliteitseisen" van Jennie, met twee uitzonderingen:
- Slaapstoornissen lijken niet bij iedereen aanwezig te zijn, spierzwakte/"vermoeidheid" wel.
De Ramsay-definitie voor ME was
uiteindelijk zo gek nog niet...
- Als wiskundige geloof niet in vragenlijstjes en subjectieve scores.
Wat voor de één veel pijn is, is voor de ander niet eens het vermelden waard...
Gebruik, voor zover dat kan, objectieve maatstaven en testen voor een diagnose!
Update:
U kunt de presentatie van het rapport door het Institute of Medicine hier live bekijken:
http://www.iom.edu/Activities/Disease/DiagnosisMyalgicEncephalomyelitisChronicFatigueSyndrome/2015-FEB-10.aspx
IOM: The Big Day
Jennie Spotila
6 February 2015.
On February 10th,
the Institute of Medicine committee will release its report
Beyond ME/CFS: Redefining an Illness.
The release event will be webcast at 11am Eastern.
The report contents are under embargo until the release,
although rumors are flying about its possible contents.
HHS has already been briefed on the report,
and I believe members of Congress have also been briefed
(although I don't know how many).
Good or bad,
this report is likely to have a huge impact on ME/CFS advocacy.
But how do we define a good or bad report?
Some advocates have said that
anything other than an adoption of
the 2003 Canadian Consensus Criteria will be a failure.
This outcome seems unlikely to me,
only because it would be hard for anyone
to justify spending $1 million and more
than a year to simply adopt something that already exists.
I think everyone would agree that
a report that goes in the direction of
broad Oxford-like criteria or psychogenic language
will also be a complete failure.
Again, this seems unlikely to me
given that the committee includes a number of experts
who would never agree to such a move.
In fact, Dr. Klimas made comments at the P2P meeting
that suggested she thinks
narrow criteria would identify clean cohorts
for biomarker and treatment discovery.
Until we have the report,
we won't know where it falls on the good-bad continuum.
But I find it helpful to think about
critical elements for success in advance,
in order to more fairly judge the report on its merits (or lack thereof).
So here are my personal must haves for a successful report:
Post-exertional malaise:
This is nonnegotiable to me.
The new definition must require PEM.
The report should also explicitly define PEM,
distinguish it from the single symptom of fatigue, and
make suggestions on how it can be measured in clinic.
Core features:
Dr. Lenny Jason has shown in multiple papers that
criteria focusing on the core features of the disease are more precise,
without incorporating patients with primary psychiatric disorders.
Dr. Jason's work shows that
PEM, cognitive dysfunction and sleep disturbance
are the three core features.
Pain and autonomic dysfunction
are frequently experienced by some patients
but may be more useful in subsetting.
So I think
a successful definition should not present
a laundry list of required symptoms
like the 1988 Holmes or even the ME-ICC.
Frequency/Severity:
Another theme of Dr. Jason's work is
setting minimum thresholds for frequency and severity
in order to weed out people
who do not actually have this disease.
I hope the new definition will address issues
like how long someone has to be sick to qualify for diagnosis,
how frequently symptoms are experienced, etc.
Name:
CFS or anything like it has to go.
I argued in one of my memos to the IOM committee that
ME was a better name,
both because of evidence of inflammation in patients and
because a diagnostic code already exists.
I heard a rumor that
ME will not be the new name,
but the person who made that statement
did not cite a specific source for the information.
A new name will be problematic,
as we may languish codeless for years, and
still face the problem of
the code being listed under "symptoms"
instead of "neurological diseases."
Making the diagnosis:
The report should provide guidance to clinicians
on how to make the diagnosis.
What tests should be run?
What diseases should be eliminated?
hould we be referred to specialists, and which ones?
Previous studies have shown that
80% of people with this disease may be undiagnosed.
The report should provide recommendations on how to change that.
No psych:
Any credence given to
psychogenic explanations for the disease
will be a failure.
Agnostic statements on
whether this is a psychological disorder
will also be a failure.
Where To Next:
Ideally, the report should
make recommendations on where we go from here.
Should a new prevalence study be done?
Should CDC retool its multisite study?
How should research on
subjects that did not require PEM be interpreted
going forward?
How should the definition be rolled out to healthcare providers?
This may not be
a comprehensive list of essential elements for success.
What do you think is essential in a successful IOM report?
What deal breakers would make the report a failure?
http://www.occupycfs.com/2015/02/06/iom-the-big-day/
Jennie Spotila, who has had CFS for the past 20 years,
is a former chairman of The CFIDS Association of America and
has testified on many occasions
before the US Federal Government's CFS Advisory Committee in Washington.
She tweets as @knittahknits
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