Det har 21 mars 2012 blitt publisert en oppfølgingstudie fra Enhet for Kronisk utmattelsessyndrom (CFS/ME) hos barn og ungdommer (under 18 år) ved Rikshospitalet (OUS) med tittel: «Adolescent chronic fatigue syndrome; a follow-up study displays concurrent improvement of circulatory abnormalities and clinical symptoms» skrevet av: Dag Sulheim, Harald Hurum, Ingrid B Helland, Erik Thaulow and Vegard BRUUN Wyller. I publikasjonen kan vi lese at det eneste inklusjonkriteriet er at deltakerne i studien tilfredstiller kun kravet til uforklart utmattelse som følger av fysisk eller mental aktivitet. De sykeste pasientene er ikke inkludert, samt at det er flere holdepunkter for at denne studien har inkludert pasienter med trøtthet og ikke sykdommen ME (G93.3).
Abstakt som følger:
The pathophysiology of chronic fatigue syndrome (CFS) in adolescents is unknown, and the clinical course and prognosis is still questioned. Recent research indicates that abnormalities of autonomic cardiovascular control may play an important role. The aim of this research project was to perform a follow-up study of adolescents with chronic fatigue syndrome, focusing on clinical symptoms and autonomic cardiovascular control.
47 adolescents (12-18 years old) with CFS were recruited from the outpatient clinic at the Department of Pediatrics, Oslo University Hospital. In a primary visit and a follow-up visit (3-17 months later), we evaluated: a) a wide range of complaints and symptoms and b) cardiovascular variables at baseline and during a 20o head-up tilt-test (HUT).
At the second visit, patients reported significant improvement regarding functional impairments, fatigue severity, muscular pain, concentration problems, post-exertional malaise and the problem of non-relieving rest. Also, at the second visit, baseline heart rate (HR), blood pressure, total peripheral resistance index (TPRI) and LF/HF (low-frequency:high-frequency heart rate variability ratio, an index of sinus node sympathovagal balance derived from spectral analyses of heart rate) were significant lower, and the increases in HR, mean blood pressure (MBP), diastolic blood pressure (DBP) and TPRI during tilt were significantly less pronounced as compared to the first visit. There was a significant correlation between changes in autonomic symptom score, fatigue severity score and functional impairment score from the first to the second visit.
The majority of adolescents with CFS experienced an improvement over time in functional impairment, self-reported fatigue and additional symptoms, and a concurrent improvement of autonomic cardiovascular control. A possible connection between clinical symptoms and abnormal autonomic control in CFS might represent a focus for further research.
Different case definitions of CFS exist.
The frequently used definition from the International Chronic Fatigue Syndrome Study Group (commonly referred to as the Fukuda-definition) requires at least six months of unexplained chronic or relapsing fatigue of new onset, severely affecting daily activities, as well as four or more of eight specific accompanying symptoms (headache, muscle pain, joint pain, sore throat, tender lymph nodes, impaired memory or concentration, unrefreshing sleep, and malaise after exertion) .
The validity of this definition has been questioned in adults  and children .
Therefore, in this study, the inclusion criterion was three or more consecutive months of unexplained disabling fatigue worsened by physical or mental exertion.
No other accompanying symptoms were required for inclusion.
This approach is in line with the clinical recommendations from The Royal College of Paediatrics and Child Health  and the National Institute for Health and Clinical Excellence , and was also proven feasible in previous studies from our group [6-10]
Fakuda-kriteriene er CDC-1994 er forløbig de kriteriene som er mest anvent i forskningssammenheng. I dette tilfellet velger alsta forknings-gruppen på Rikshospitalet å bruke kun ett av kravene kriteiene krever, altså uforklart utmattelse som følge av fysisk og/eller mental aktivitet.
Dette gir allerede publikasjonen stryk i feil bruk av kriterier for å finne de rette ME-pasientene for forskningsstudier.
Videre kan vi lese:
«At the time of the first visit, patients had high Fatigue severity score, and also a high score on items addressing other CFS symptoms, such as non-relieving rest, concentration problems and post-exertional malaise (Table 2). Also, they reported symptoms of orthostatic intolerance such as lightheadedness, as reflected in the ASP score. However, symptoms such as sore throat and enlarged lymphatic nodes, which both are criteria in the Fukuda definition of CFS , were uncommon among our patients.«
Her frekommer det altså at sår hals, ømme og/eller forstørrede lymfeknuter i denne pasientstudien var omtrent ikke tilstedeværende gir en sterk indikasjon på at dette ikke er pasienter med sykdommen ME, men en generell trøtthet som ikke er uvanlig hos barn og unge generelt til tider.
«During the time span from the first to the second visit, 27 of the patients had tried one or more therapeutic interventions, such as graded exercise therapy, cognitive behavioral therapy and drugs (propranolol, fludrocortisone). Treatment intensity and duration varied considerably; thus, estimating effect from each intervention is not feasible.«
Om studiens begrensninger står det følgende:
A challenge regarding CFS research is the diversity in case definition and inclusion criteria.
This study applied a modification of the Fukuda-definition, and our results cannot be readily compared with studies adhering strictly to this definition.
Of note, our patients had remarkably low scores on some of the additive criteria of the Fukuda definition of CFS, in particular sore throat and tender lymph nodes .
This adds to the ongoing discussion of the validity of this definition ; at least, our findings indicate that a strict application of these criteria may correspond to a small fraction of all adolescents with long-lasting, unexplained and disabling fatigue.
Thus, omission of these additive criteria, as applied in this study and advocated by the guidelines from the Royal College of Paediatrics and Child Health  and the National Institute for Health and Clinical Excellence , seems to increase the ecological validity and improves the generalizability of the results towards routine clinical care.
All participants in this study were recruited from a national referral center, possibly causing a selection bias: those being less severely affected from CFS might not have come to our attention.
This might shift our results towards worse outcome regarding the entire adolescent CFS population.
On the other hand, no one was permanently bed-ridden; thus, the most severely affected patients did not participate in this study.
Rikshospitalet i Oslo må bestemme seg for om de skal utføre studier på generell tretthet/utmattethet som hyppig kan forekomme periodevis hos barn og unge.
I den siste uttalelsen her om at de med lett ME/CFS ikke kanskje kommer til undersøkelse er en antagelse på hypotetisk grunnlag.
Hadde studien vært korrekt utført etter de verktøyene som normalt brukes for ME/CFS i klinisk medisinsk forskning, så er det ganske så sikkert at resultatet ville ha sett annerledes ut. det vedgåes her at ingen av pasientene var permanent sengeliggende/husbunden, altså har sykdomsgrad alvorlig til svært alvorlig.
Her kan en mistenke at det ikke er moderat grad med svigninger hos pasientene engang.
Når sant skal sies så svekker dette hele publikasjonens troverdighet.