ME/CFS AUSTRALIA (SA) INC
Registered Charity 698
PO Box 28,
South Australia 5007
Closed while relocating
1300 128 339
ME/CFS Australia (SA) Inc supports the needs of sufferers of Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and related illnesses. We do this by providing services and information to members.
ME/CFS Australia (SA) Inc aims to keep members informed of the various research projects, diets, medications, therapies etc. All communication, both verbal and written, is merely to disseminate information and not to make recommendations or directives.
Unless otherwise stated, the views expressed on this Web site are not necessarily the official views of the Society or its Committee and are not simply an endorsement of products or services.
Petition against the CDC's definition of CFS
Monday 25 May 2009
The petition can be found at: www.ipetitions.com/petition/empirical_defn_and_CFS_research.
I have Chronic Fatigue Syndrome (CFS) for over 20 years.
I want a lot of research progress in my lifetime and believe the empirical definition (2005) (also known as the Reeves definition (2005)) decreases the chances that this will occur: abnormalities that would show up using a more strictly defined definition won't show up using the empirical/Reeves definition; and abnormalities that might show up in the broad group covered by the empirical/Reeves definition are not necessarily representative of CFS patients.
Similarly treatments that might work on a more strictly defined group of patients might not show up using the very broad empirical/Reeves definition and treatments that might appear to work overall on the group defined using the empirical/Reeves definition might not be suitable for people who satisfy a stricter definition. This messes up the CFS literature even further.
The petition's page has this explanation:
CDC CFS research should not involve the empirical definition (2005)
We call on the Centers for Disease Control and Prevention (CDC) to stop using the "empirical" definition (also known as the Reeves 2005 definition) to define Chronic Fatigue Syndrome (CFS) patients in CFS research.
The CDC claim it is simply a way of operationalizing the Fukuda (1994) definition. However the prevalence rates suggest otherwise: the "empirical" definition gives a prevalence rate of 2.54% of the adult population compared to 0.235% (95% confidence interval, 0.142%-0.327%) and 0.422% (95% confidence interval, 0.29%-0.56%) when the Fukuda definition was used in previous population studies in the US[4,5].
The definition lacks specificity. For example, one research study found that 38% of those with a diagnosis of a Major Depressive Disorder were misclassified as having CFS using the empirical/Reeves definition.
And here's a comment by Kasper Ezelius (that came from this page) urging people to sign the petition:
Sign the petition against CDC's new definition of CFS!
Tom Kindlon has set up a petition on the Internet in order to stop CDC to use the new definition of CFS. At this time there are 636 signatures, and it would be wonderful if at least 1000 signatures could be achieved.
Tom Kindlon from Ireland has written comments to several research articles relating to the new definition of CFS made by Reeves et al. 2005, and adopted by the Centers for Disease Control and Prevention (CDC) in the USA. Tom Kindlon is one of the few knowledgeable about the CFS-Reeves definition.
Leonard Jason from USA has written articles about how the new CDC CFS definition is a flaw.
The CFS-Reeves definition does not require malaise, mental fog and post-exertional malaise exceeding 24 hours, which make it hard to believe that it has something to do with ME/CFS as the patients know it. It does not even require the symtoms to be chronic, because it does not require the symtoms to have lasted for at least 6 months. It only looks 1 month back in time.
The CFS-Reeves definition lacks specificity (<16%). Already the Fukuda definition was lacking specificity, and the expected way to go would to have increased specificity in order to speed up research. With the CFS-Reeves low specificity, the ME/CFS part will be dissipated in the stastistical data. As no meaningful scientific results will be produced with the "Reeves illness melange", one can expect that CFS will cease to be exist as an interesting entity to study.
I think all ME/CFS-patients are hoping for research to go forward, not to stop up and dissipate because a TOTALLY FLAWED DEFINITION is accepted and used by CDC.
Please, help to get more signatures by letting people know about this petition.
Sign at the bottom of this page. Note: When you are urged to donate money to the site, you can simply skip that. Your signature will be registered anyhow.
Kasper Ezelius, Örebro, Sweden
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