ME/CFS diagnostic and treatment guidelines

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It has occurred to me that we don't seem to have a thread with the diagnostic and treament guidelines used in different countries, or the different Fukuda definitions.

I think it would be useful. Especially for the newly diagnosed.

I think it should be a no discussion page, like the media links thread. If there is something that we want to discuss, we can copy it to a new thread and do so there.

I'll post the Canadian and the South Australian one that is derived from the Canadian.

Hopefully, we'll get them from all countries.


islandfinn:)
 
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ME/CFS Canadian Consensus Document and Guidelines - no discussion

I was diagnosed using the ME/CFS Canadian Consensus Document (this link is to the full document published in the Journal of Chronic Fatigue Syndrome 11(1):7-115 2003.

In looking for a quote today I noticed that along with Dr Carruthers, Dr Peterson, Dr Klimas, Dr Lerner and Dr De Meirleir were among the 12 international expert authors. As well as being experts in the field, they reviewed over 400 research papers on ME/CFS.

A simplified form was put out for doctors: Myalgic Encephalomylitis / Chronic Fatigue Syndrome: A Clinical Case Definition and Guidelines for Medical Practioners, only 30 pages or so - lots of charts, bullets, lists of symptoms, ..... -I LOVE it as it is so easy to read and so comprehensive. The most accessible info I've seen in 8 years.
 

Cort

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gracenote

All shall be well . . .
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Japanese case definition for CFS

JAPANESE CASE DEFINITION FOR CHRONIC FATIGUE SYNDROME
prepared by CFS research group of Japan and the Ministry of Health, Labour and Welfare in 1991

CRITERIA

MAJOR

1 Chief complaint of at least 6 months of persistent or multiple relapsing and disabling fatigue
2 Exclusion of medical conditions that may explain the prolonged fatigue as major criteria

MINOR

Symptoms
1 Mild fever or chills
2 Sore throat
3 Lymph node swelling
4 Unknown muscle weakness
5 Myalgia
6 Prolonged (>24 h) fatigue after exercise
7 Headache
8 Migratory arthralgia
9 Neuropsychological symptoms (more than one); sensitivity to light, temporary visual blind spots, forgetfulness, excessive irritability, confusion, difficulty thinking, inability to concentrate or depression
10 Sleep disturbance
11 Sudden onset of symptoms

Signs (confirmed twice at least monthly intervals)
1 Low-grade fever
2 Nonexudative pharyngitis
3 Lymph node swelling

Two major criteria and 6 or more of the 11 symptom criteria and 2 or more of the 3 physical criteria; or 8 or more of 11 symptom criteria.
CFS, Chronic Fatigue Syndrome.

http://0-www3.interscience.wiley.com.iii.sonoma.edu/cgi-bin/fulltext/122322945/PDFSTART

Psychiatry and Clinical Neurosciences
Volume 63, Issue 3, Pages 365-373
Published Online: 13 Apr 2009

A TWO-YEAR FOLLOW-UP STUDY OF CHRONIC FATIGUE SYNDROME COMORBID WITH PSYCHIATRIC DISORDERS
BY Yasunori Matsuda, md, 1 * Tokuzo Matsui, md, phd, 1 Kouhei Kataoka, md , 1 Ryosuke Fukada, md , 1 Sanae Fukuda, phd, 2 Hirohiko Kuratsune, md, phd, 3 Seiki Tajima, md, phd, 3 Kouzi Yamaguti, md, phd, 3 Yukiko Hakariya Kato, md 4 and Nobuo Kiriike, md, phd, 1
1 Department of Neuropsychiatry, 2 Department of Physiology, 3 Department of Fatigue Clinical Center, Osaka City University Graduate School of Medicine, and 4 Department of Virology, Research Institute for Microbial Diseases, Osaka University, Osaka, Japan
Correspondence to *Yasunori Matsuda, MD, Department of Neuropsychiatry, Osaka City University Graduate School of Medicine, 1-4-3, Asahimachi, Abenoku, Osaka City, Osaka 545-8585, Japan.

ABSTRACT

Aims: Chronic fatigue syndrome patients often have comorbid psychiatric disorders such as major depressive disorders and anxiety disorders. However, the outcomes of chronic fatigue syndrome and the comorbid psychiatric disorders and the interactions between them are unknown. Therefore, a two-year prospective follow-up study was carried out on chronic fatigue syndrome patients with comorbid psychiatric disorders.

Methods: A total of 155 patients who met the Japanese case definition of chronic fatigue syndrome were enrolled in this study. Comorbid psychiatric disorders were diagnosed according to the Diagnostic and Statistical Manual of Mental Disorders 4th edition criteria. Patients with comorbid psychiatric disorders received psychiatric treatment in addition to medical therapy for chronic fatigue syndrome. Seventy patients participated in a follow-up interview approximately 24 months later.

Results: Of the 70 patients with chronic fatigue syndrome, 33 patients were diagnosed as having comorbid psychiatric disorders including 18 major depressive disorders. Sixteen patients with psychiatric disorders and eight patients with major depressive disorders did not fulfill the criteria of any psychiatric disorders at the follow up. As for chronic fatigue syndrome, nine out of the 70 patients had recovered at the follow up. There is no significant influence of comorbid psychiatric disorders on the outcome of chronic fatigue syndrome.

Conclusions: Chronic fatigue syndrome patients have a relatively high prevalence of comorbid psychiatric disorders, especially major depressive disorders. The outcomes of chronic fatigue syndrome and psychiatric disorders are independent. Therefore treatment of comorbid psychiatric disorders is necessary in addition to the medical treatment given for chronic fatigue syndrome.

2009 Japanese Society of Psychiatry and Neurology
 

mezombie

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Xanadu: Myalgic Encephalomyelitis definitions (pre-"CFS")

Thanks for posting these definitions. They are forgotten by many and used by few, unfortunately. But it's important to remember that "CFS" was what the CDC decided to name the disease outbreak that took place in Incline Village in the early 1980s. Several physician/researchers felt quite strongly that this was an outbreak of Myalgic Encephalomyelitis, a disease recognized for 75 years in most parts of the world, but apparently not in the US.

There are some on this board who feel historic M.E. is much more descriptive of their illness than any of the CFS definitions.

Dr. Hyde has developed the Nightingale defintion of ME, which is also on the NAME-US.org site.
 
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Definitions used in research

Thanks everyone for the definitions! I have a hard time remembering them and knowing which are used in studies. A friend explained them to me so:

Definitions Used in Research

Holmes (1988?) - Prior lengthy CDC definition - not used any more

1994 (Fukuda) (aka International) - CDC definition used by virtually every researcher to study CFS, has little value as a clinical definition

Oxford (UK) - used only by a few UK researchers to study 'CFS'

Canadian Consensus Criteria - Clinical (non research) definition: an excellent detailed definition that features post-exertional malaise and cognitive dysfunction - very very rarely used to study CFS

Empirical Definition - very similar to the Canadian Consensus criteria, developed under the auspices of the IACFS/ME

Empirical Definition - Reeves developed (2003) research definition - reduces emphasis on fatigue and discounts post-exertional malaise dramatically, add emotional factors for the first time, provides quantitative assessment of functionality - only used by the CDC
 

IamME

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Don't know if anything more became of this:

http://www.informaworld.com/smpp/content~content=a903736319

The Development of an Epidemiological Definition for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

Authors: Tolu Osoba; Derek Pheby; Selena Gray; Luis Nacul
DOI: 10.1080/10573320802092112
Publication Frequency: 4 issues per year
Published in: journal Journal Of Chronic Fatigue Syndrome, Volume 14, Issue 4 June 2008 , pages 61 - 84
Formats available: HTML (English) : PDF (English)

The circumstances under which this title is published have changed:
Reason for change: Closed
Date of change: 2009

Abstract
An epidemiological case-definition was developed to distinguish myalgic encephalomyelitis/chronic fatigue syndrome from other chronic fatiguing conditions by evaluating the discriminatory potential of different criteria from previous definitions. A two-part model was derived using consensus and discriminant analytic approaches. The optimal discriminators for the first part were severe debilitating fatigue affecting physical and mental functioning, a reduction in activity to less than 50% of the patient's premorbid activity level, and muscle discomfort (sensitivity 92%, specificity 66%). The variables for the second part included a reduction in activity to less than 50% of the patient's premorbid activity, myalgia, generalized muscle weakness, migratory arthralgia, and swollen lymph nodes (sensitivity 77%, specificity 88%).

Keywords: Fatigue syndrome; chronic; myalgic encephalomyelitis; chronic fatigue; epidemiology
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