Merry
Well-Known Member
For those of you who have not been following the Karina Hansen story (taken from her home, incarcerated in mental hospital, parents forbidden contact: https://www.facebook.com/JusticeForKarinaHansen?fref=ts ), Per Fink was her doctor in the mental hospital. She has been moved to another facility (for the brain-damaged?), so I don't know if Per Fink still has control over her. Per Fink is the Simon Wessley of Denmark.
Tate Mitchell has posted in Co-cure a complaint that Per Fink and Andreas Schroder wrote to the editors of the Journal of the American Medical Association about the IOM report's diagnostic criteria. Per Fink and Andreas Shroder don't believe that ME/CFS is a distinctive disease.
See below that letter and then the response of Ellen Wright Clayton, chair of the IOM ME/CFS report committee.
http://jama.jamanetwork.com/article.aspx?articleid=2382974
Redefining Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
To the Editor The Institute of Medicine (IOM) proposed a new name
(systemic exertion intolerance disease) and diagnostic criteria for
myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).' The IOM
panel aimed to -develop evidence- based clinical diagnostic criteria
for ME/CFS for use by clinicians, using a consensus-building
methodology.”
We agree that more valid diagnostic criteria for ME/CFS are needed and
welcome the panel’s effort to improve patient care through better
diagnostic tools. However, we do not believe that a new
consensus-driven proposal added to the many existing ones will help
reach these important aims. The poor acceptance of ME/CFS in the
scientific community is due to a lack of convincing evidence that
ME/CFS is a distinct syndrome that can be delimited from other similar
syndromes.
Even though the panel’s comprehensive literature review revealed
important data indicating the difficult experiences of patients with
ME/CFS, the crucial question regarding the nosological status of
ME/CFS remains unsolved2 and can be solved only through new scientific
studies, not by consensus.
To identify a distinct syndrome, 2 prerequisites need to be proved.
First, studies need to show that symptoms cluster (ie, appear together
more often than randomly), which can be done using a cluster or factor
analysis.1 None of the reported analyses show that the suggested
symptoms cluster (postexertion malaise, unrefreshing sleep, cognitive
impairment, and orthostatic intolerance).
Second, boundaries or points of rarity between the syndrome and
related syndromes need to be identified, which can be achieved with
latent class analysis or similar statistical techniques.3 This type of
analysis is not reported. Because the suggested symptoms are common in
numerous conditions, identifying these boundaries are of paramount
importance.
Patients with ME/CFS have multiple symptoms and many fulfill criteria
for multiple syndromes.2 4 The new diagnostic proposal does not answer
the important question of whether patients who have multisymptomatic
ME/CFS have the same illness as patients with few symptoms.
Is ME/CFS a distinct syndrome or part of a spectrum? To answer that
question, we need more research that complies with the basic rules on
how to establish and validate diagnoses.
Per Fink, PhD. DMSc
Andreas Schroder, MD, PhD
Author Affiliations: Research Clinic for Functional Disorders. Aarhus
University Hospital. Aarhus. Denmark
Corresponding Author: Per Fink. PhD. DMSc. Research Clinic for
Functional Disorders. Aarhus University Hospital. Noerrebrogade 44.
Aarhus C. Denmark 8000 (perklafi@rm.dk)
Conflict of Interest Disclosures: The authors have completed and
submitted the ICMJE Form for Disclosure of Potential Conflicts of
Interest and none were reported.
1. Clayton EW. Beyond myalgic encephalomyelitis/chronic fatigue
syndrome: an IOM report on redefining an illness JAMA. 2015:313(11)
1101 1102.
2. Wessely S. Nimnuan C. Sharpe M. Functional somatic syndromes: one
or many? Lancet. 1999:354<9182):936-939.
3. Kendell RF. Clinical validity. PsycholMed 1989;19{1) 45-55.
4. Fink P. Schroder A One single diagnosis, bodily distress syndrome,
succeeded to capture 10 diagnostic categories of functional somatic
syndromes and somatoform disorders. /Psychosom Res, 2010;68<5) 415
-126.
----
In Reply I concur with Drs Fink and Schroder that more research is
needed to understand the etiology and refine the diagnosis of
systemic exertion intolerance disease. I, however, cannot agree with
their conclusion that the IOM Committee’s case definition fails
because it was not based on a cluster or factor analysis or latent
class analysis or by using similar statistical techniques.
The Committee examined the existing literature that used these
techniques1(pp60-66) and found those studies inadequate for several
reasons. The Committee also recognized that the framing of salient
case definitions frequently relies on a variety of inputs, including
expert consensus, input from patients and stakeholders, and
evidence-based review of the literature that addresses etiology,
pathophysiology, and discriminating clinical characteristics.
The Committee cited 2 examples, the Jones criteria for rheumatic fever
and the Diagnostic and Statistical Manual of Mental Disorders, in
which case definitions had been made in the absence of clear
understanding of etiology.1(p38) In its comprehensive literature
review, which assessed the quality of available evidence, the
Committee focused on identifying symptoms that are found in virtually
every patient, with an emphasis on those that have objective findings
on testing in cases of ambiguity.
The criteria set forth in the report reflect that analysis. As
directed by the statement of task, the criteria and the
recommendations also reflect the voices of patients, advocates, and
experts inside and outside the Committee who were eloquent in their
statements about the seriousness, complexity, and chronicity of this
disease, and the misunderstanding and dismissiveness of clinicians
and others. I stand by the major contribution of the Committee’s work
for the the major contribution of the Committee’s work
for these patients.
Ellen Wright Clayton. MD, JD
Tate Mitchell has posted in Co-cure a complaint that Per Fink and Andreas Schroder wrote to the editors of the Journal of the American Medical Association about the IOM report's diagnostic criteria. Per Fink and Andreas Shroder don't believe that ME/CFS is a distinctive disease.
See below that letter and then the response of Ellen Wright Clayton, chair of the IOM ME/CFS report committee.
http://jama.jamanetwork.com/article.aspx?articleid=2382974
Redefining Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
To the Editor The Institute of Medicine (IOM) proposed a new name
(systemic exertion intolerance disease) and diagnostic criteria for
myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).' The IOM
panel aimed to -develop evidence- based clinical diagnostic criteria
for ME/CFS for use by clinicians, using a consensus-building
methodology.”
We agree that more valid diagnostic criteria for ME/CFS are needed and
welcome the panel’s effort to improve patient care through better
diagnostic tools. However, we do not believe that a new
consensus-driven proposal added to the many existing ones will help
reach these important aims. The poor acceptance of ME/CFS in the
scientific community is due to a lack of convincing evidence that
ME/CFS is a distinct syndrome that can be delimited from other similar
syndromes.
Even though the panel’s comprehensive literature review revealed
important data indicating the difficult experiences of patients with
ME/CFS, the crucial question regarding the nosological status of
ME/CFS remains unsolved2 and can be solved only through new scientific
studies, not by consensus.
To identify a distinct syndrome, 2 prerequisites need to be proved.
First, studies need to show that symptoms cluster (ie, appear together
more often than randomly), which can be done using a cluster or factor
analysis.1 None of the reported analyses show that the suggested
symptoms cluster (postexertion malaise, unrefreshing sleep, cognitive
impairment, and orthostatic intolerance).
Second, boundaries or points of rarity between the syndrome and
related syndromes need to be identified, which can be achieved with
latent class analysis or similar statistical techniques.3 This type of
analysis is not reported. Because the suggested symptoms are common in
numerous conditions, identifying these boundaries are of paramount
importance.
Patients with ME/CFS have multiple symptoms and many fulfill criteria
for multiple syndromes.2 4 The new diagnostic proposal does not answer
the important question of whether patients who have multisymptomatic
ME/CFS have the same illness as patients with few symptoms.
Is ME/CFS a distinct syndrome or part of a spectrum? To answer that
question, we need more research that complies with the basic rules on
how to establish and validate diagnoses.
Per Fink, PhD. DMSc
Andreas Schroder, MD, PhD
Author Affiliations: Research Clinic for Functional Disorders. Aarhus
University Hospital. Aarhus. Denmark
Corresponding Author: Per Fink. PhD. DMSc. Research Clinic for
Functional Disorders. Aarhus University Hospital. Noerrebrogade 44.
Aarhus C. Denmark 8000 (perklafi@rm.dk)
Conflict of Interest Disclosures: The authors have completed and
submitted the ICMJE Form for Disclosure of Potential Conflicts of
Interest and none were reported.
1. Clayton EW. Beyond myalgic encephalomyelitis/chronic fatigue
syndrome: an IOM report on redefining an illness JAMA. 2015:313(11)
1101 1102.
2. Wessely S. Nimnuan C. Sharpe M. Functional somatic syndromes: one
or many? Lancet. 1999:354<9182):936-939.
3. Kendell RF. Clinical validity. PsycholMed 1989;19{1) 45-55.
4. Fink P. Schroder A One single diagnosis, bodily distress syndrome,
succeeded to capture 10 diagnostic categories of functional somatic
syndromes and somatoform disorders. /Psychosom Res, 2010;68<5) 415
-126.
----
In Reply I concur with Drs Fink and Schroder that more research is
needed to understand the etiology and refine the diagnosis of
systemic exertion intolerance disease. I, however, cannot agree with
their conclusion that the IOM Committee’s case definition fails
because it was not based on a cluster or factor analysis or latent
class analysis or by using similar statistical techniques.
The Committee examined the existing literature that used these
techniques1(pp60-66) and found those studies inadequate for several
reasons. The Committee also recognized that the framing of salient
case definitions frequently relies on a variety of inputs, including
expert consensus, input from patients and stakeholders, and
evidence-based review of the literature that addresses etiology,
pathophysiology, and discriminating clinical characteristics.
The Committee cited 2 examples, the Jones criteria for rheumatic fever
and the Diagnostic and Statistical Manual of Mental Disorders, in
which case definitions had been made in the absence of clear
understanding of etiology.1(p38) In its comprehensive literature
review, which assessed the quality of available evidence, the
Committee focused on identifying symptoms that are found in virtually
every patient, with an emphasis on those that have objective findings
on testing in cases of ambiguity.
The criteria set forth in the report reflect that analysis. As
directed by the statement of task, the criteria and the
recommendations also reflect the voices of patients, advocates, and
experts inside and outside the Committee who were eloquent in their
statements about the seriousness, complexity, and chronicity of this
disease, and the misunderstanding and dismissiveness of clinicians
and others. I stand by the major contribution of the Committee’s work
for the the major contribution of the Committee’s work
for these patients.
Ellen Wright Clayton. MD, JD
![ME/CFS lecture | Dr Nancy Klimas | 2011 [Chronic Fatigue Syndrome / SEID / New Zealand] - YouTube](data:image/gif;base64,R0lGODlhAQABAIAAAAAAAP///yH5BAEAAAAALAAAAAABAAEAAAIBRAA7)
