# Study investigates differences between CFS and ME



## M&M (Jan 20, 2002)

Another VERY interesting study/article posted to the Co-Cure list.


> quote:VARIABILITY IN DIAGNOSTIC CRITERIAFOR CHRONIC FATIGUE SYNDROME MAYRESULT IN SUBSTANTIAL DIFFERENCESIN PATTERNS OF SYMPTOMS AND DISABILITY~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~Leonard A Jason et alEvaluation and the Health Professions 2003:26:1:3-22Sage Publications( http://www.sagepub.com/cc/faq/SageFAQ.htm )Note: When this document was received, it was ina somewhat strange format without the customarycitation. It was therefore understood to be inpress, whereas in fact it had been published.This is an important paper which investigates examineddifferences between Chronic Fatigue Syndrome (CFS) asdefined by the 1994 Fukuda et al (CDC) criteria and a set ofcriteria stipulated in 1990 by Dowsett et al. Significantdifferences were revealed, suggesting that it might beinappropriate to synthesise results from studies of ME/CFS thatuse different definitions to select study cohorts.The authors state that to date there have not been anyinvestigations comparing the Fukuda CFS criteria with the MEcriteria, so they decided to examine a larger group of symptomsthan just those in the Fukuda criteria. This was based on theirown evidence (2002) that participants with CFS differed fromcontrols in the occurrence of symptoms such ascardiopulmonary, neurological and other symptoms not includedin the current case definition; an additional 115 symptoms wereexamined. The authors therefore compared three groups: -thosewho met the ME criteria (the ME group)-those who met the CDCFukuda 1994 criteria (the CFS group) and -those who had apsychiatric explanation for their chronic fatigue (theCF-Psychiatric group). Symptoms severity was assessed.Key findings include the following:* For a diagnosis of ME according to the London (Dowsett etal) 1990 criteria and for a diagnosis of CFS according to theAustralian (Lloyd et al) 1990 criteria, post-exertional malaise aswell as memory and concentration difficulties are essential. Incontrast, for the Fukuda et al (1994) criteria, both thesesymptoms are optional and are not required.* There were no significant differences in age, race, maritalstatus, number of children or employment status.* ME is typically thought to follow a viral infection and is usuallycoupled with a number of neurological and psychologicalsymptoms such as emotional lability, nominal dysphasia,disturbed sleep patterns, postural hypotension, photophobis andtinnitus.* Participants with ME were significantly more likely to reportsymptoms including weakness of the back and neck;post-exertional malaise; unrefreshing sleep, photophobia;disturbances in eyesight; difficulty in focusing on one thing at atime; forgetting recent conversations and events; disorientationin familiar surroundings; loss of train of thought; slow visual andauditory processing; lymph node pain; muscle pain; joint pain;high abdominal pain; tingling or numbness in arms and legs;feeling weak or dizzy after standing; feeling dizzy on suddenmovement of the head and loss of vitality* Compared with the CF-Psychiatric group, the CFS groupreported significantly more sharp shooting pains in the chest.* This study demonstrated important differences between theME group and the CFS group with regard to symptomfrequency.* The ME criteria appear to select a more symptomatic group.* ME individuals do not demonstrate more psychiatricimpairment than those who fulfil the Fukuda et al criteria* Overall, there were 22 significant symptom differencesbetween the ME and the CF-Psychiatric group and 8 significantsymptom differences between the ME group and the CFSgroup. These findings suggest that the ME criteria do select agroup of patients with more symptoms.* Given the seriousness of the neurological symptoms, it ispossible to conclude that the ME group has a more seriousillness pattern than the CFS group and that the ME group doeshave greater severity of symptoms. These symptoms caninterfere with daily living and with occupational performance.* Criteria variance (ie. differences in inclusion and exclusioncriteria used by clinicians) accounts for the largest proportion ofdiagnostic unreliability.* Collecting data on symptom severity on a 100-point ratingscale would allow investigators to determine the seriousness ofthe problem experienced.* In addition to a better definition of the criteria, the actualname of the disorder does seem to affect perception of theseriousness of it.* In summary, those patients meeting the ME criteria appear tobe more symptomatic than those meeting the Fukuda et al CFScriteria only, especially in the neurological and neuropsychiatric(cognitive) areas.* These differences do not appear to be influenced bypsychiatric variables.


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## Susan Purry (Nov 6, 2001)

Thank you! This is so important! I wish the bloody researchers would sort themselves out over criteria! I wonder if there are other conditions where diagnostic criteria varies according to country?


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## M&M (Jan 20, 2002)

I agree Susan. I think this is part of the problem why some doctors have trouble accepting ME/CFIDS as a real medical condition. And who can blame them? (up to a point, I mean) When you see people diagnosed with "the same" disease, and some are fine and some are wheelchair bound. Researchers really need to clean this up. It is truly ridiculous! As you say, Susan, the criteria for diabetes, MS, cancer, etc are not variables. You either have it, or you don't. Hopefully soon things will get better, I think the fact that it has been recognized as a problem is a good sign that perhaps a solution will be found soon.


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## SusanLawton (Dec 23, 2003)

> quote:* ME is typically thought to follow a viral infection and is usuallycoupled with a number of neurological and psychologicalsymptoms such as emotional lability, nominal dysphasia,disturbed sleep patterns, postural hypotension, photophobis andtinnitus.* Participants with ME were significantly more likely to reportsymptoms including weakness of the back and neck;post-exertional malaise; unrefreshing sleep, photophobia;disturbances in eyesight; difficulty in focusing on one thing at atime; forgetting recent conversations and events; disorientationin familiar surroundings; loss of train of thought; slow visual andauditory processing; lymph node pain; muscle pain; joint pain;high abdominal pain; tingling or numbness in arms and legs;feeling weak or dizzy after standing; feeling dizzy on suddenmovement of the head and loss of vitality


I read these two paragraphs, and recognized every single symptom listed. Oh, how I wish this set of criteria had existed in 1995 when I first "got sick" - my diagnosis would have been so much easier and less expensive. I got lucky with my doctor at the time, who knew what CFS was and had no problem diagnosing it, but all the specialists I saw in the following years for other problems flat out told me I was making it up, that it was all in my head, and they wanted no part of my treatment. Personally, I thought they should have lost their licenses to practice for treating me so badly, but if these criteria had been around, perhaps it would have made a difference.Hopefully, there will be some sort of consensus among health care providers and researchers soon, and the thousands of people who are stricken with this illness will benefit from quicker diagnoses and better treatment.Thanks so much for sharing these findings!Susan


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