Comparison of chronic fatigue syndrome/myalgic encephalopathy with other disorders: an observational study

Abstract:

OBJECTIVES: To examine the level of activity in online discussion forums for chronic fatigue syndrome/myalgic encephalopathy (CFS/ME) compared to other disorders. We hypothesized the level of activity to be higher in CFS/ME online discussion forums.

DESIGN: Observational study

SETTING: Norway, which has more than 80% household coverage in internet access, September 2009

PARTICIPANTS: Twelve Norwegian disorder-related online discussion forums

MAIN OUTCOME MEASURES: Number of registered users and number of posted messages on each discussion forum

RESULTS: Two forums were targeted towards individuals with CFS/ME. These forums had the highest number of registered users per estimated 1,000 cases in the population (50.5 per 1,000 and 29.7 per 1,000), followed by a site for drug dependency (5.4 per 1,000). Counting the number of posted messages per 1,000 cases gave similar indications of high online activity in the CFS/ME discussion forums.

CONCLUSIONS: CFS/ME online forums had more than ten times the relative activity of any other disorder or condition related forum. This high level of activity may have multiple explanations. Individuals suffering from a stigmatized condition of unknown aetiology may use the internet to look for explanations of symptoms or to seek out alternative treatments. Internet forum activity may also be reinforced by the creation of in-group identity and pre-morbid personality traits. More knowledge on the type and quality of information provided in online forums is urgently needed.

 

Source: Knudsen A, Lervik L, Harvey S, Løvvik C, Omenås A, Mykletun A. Comparison of chronic fatigue syndrome/myalgic encephalopathy with other disorders: an observational study. JRSM Short Rep. 2012 May;3(5):32. doi: 10.1258/shorts.2011.011167. Epub 2012 May 21. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3365790/ (Full article)

 

Adolescent chronic fatigue syndrome; a follow-up study displays concurrent improvement of circulatory abnormalities and clinical symptoms

Abstract:

BACKGROUND: 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.

METHODS: 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 20° head-up tilt-test (HUT).

RESULTS: 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.

CONCLUSIONS: 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.

 

Source: Sulheim D, Hurum H, Helland IB, Thaulow E, Wyller VB. Adolescent chronic fatigue syndrome; a follow-up study displays concurrent improvement of circulatory abnormalities and clinical symptoms. Biopsychosoc Med. 2012 Mar 21;6:10. doi: 10.1186/1751-0759-6-10. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3337799/ (Full article)

 

Chronic fatigue syndrome in the media: a content analysis of newspaper articles

Abstract:

OBJECTIVES: Although cognitive behavioural therapy and graded exercise treatment are recognized evidence-based treatments for chronic fatigue syndrome/myalgic encephalomyelitis (ME), their use is still considered controversial by some patient groups. This debate has been reflected in the media, where many patients gather health information. The aim of this study was to examine how treatment for chronic fatigue syndrome/ME is described in the newspaper media.

DESIGN: Content analysis of newspaper articles.

SETTING: The digitalized media archive Atekst was used to identify Norwegian newspaper articles where chronic fatigue syndrome/ME was mentioned.

PARTICIPANTS: Norwegian newspaper articles published over a 20-month period, from 1 January 2008 to 31 August 2009.

MAIN OUTCOME MEASURES: Statements regarding efficiency of various types of treatment for chronic fatigue syndrome/ME and the related source of the treatment advice. Statements were categorized as being either positive or negative towards evidence-based or alternative treatment.

RESULTS: One hundred and twenty-two statements regarding treatment of chronic fatigue syndrome/ME were identified among 123 newspaper articles. The most frequent statements were positive statements towards alternative treatment Lightning Process (26.2%), negative statements towards evidence-based treatments (22.1%), and positive statements towards other alternative treatment interventions (22.1%). Only 14.8% of the statements were positive towards evidence-based treatment. Case-subjects were the most frequently cited sources, accounting for 35.2% of the statements, followed by physicians and the Norwegian ME association.

CONCLUSIONS: Statements regarding treatment for chronic fatigue syndrome/ME in newspapers are mainly pro-alternative treatment and against evidence-based treatment. The media has great potential to influence individual choices. The unbalanced reporting of treatment options for chronic fatigue syndrome/ME in the media is potentially harmful.

 

Source: Knudsen AK, Omenås AN, Harvey SB, Løvvik CM, Lervik LV, Mykletun A. Chronic fatigue syndrome in the media: a content analysis of newspaper articles. JRSM Short Rep. 2011 May;2(5):42. doi: 10.1258/shorts.2011.011016. Epub 2011 May 25. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3105457/ (Full article)

 

Postinfectious and chronic fatigue syndromes: clinical experience from a tertiary-referral centre in Norway

Abstract:

BACKGROUND: We aimed to compare patients reporting acute infection with those reporting no infection at onset of chronic fatigue syndrome (CFS).

PATIENTS AND METHODS: This study includes 873 patients with CFS referred to a tertiary centre on average 4.8 years after symptom onset. Assessment was by both observer query and self-reports. Antibody analyses against infectious agents including Epstein-Barr virus and enterovirus were performed in a majority of patients.

RESULTS: Females comprised 75.3% of the patient group, and the mean age was 33 years. Initial infection was reported by 77%. There was no difference as to antibody analyses. Logistic regression showed that initial infection was independently associated with acute onset of fatigue, improvement of fatigue at referral, and the following symptoms at referral: fever, tender lymph nodes, and myalgia.

CONCLUSION: CFS patients with initial infection as a precipitating factor more often report acute onset of fatigue, more frequent accompanying symptoms, and more frequent improvement on referral than do patients without initial infection.

 

Source: Naess H, Sundal E, Myhr KM, Nyland HI. Postinfectious and chronic fatigue syndromes: clinical experience from a tertiary-referral centre in Norway. In Vivo. 2010 Mar-Apr;24(2):185-8. https://www.ncbi.nlm.nih.gov/pubmed/20363992

 

A step backwards for the patients

During the publication of the report on the diagnosis and treatment of chronic fatigue syndrome / myalgic encephalomyelitis (CFS / ME) 9.6.2006 I expressed strong concerns that the report would have negative consequences for patients. Especially I expressed the requirement to undergo graded exercise and cognitive behavioral therapy for the granting of benefits would have disastrous consequences for those affected.

It was unfortunately not many weeks before the statement was true – discounts in insurance law with reference to the findings of the report. In the meta-analysis of the Knowledge Centre  is included internationally criticized studies. They have methodological weaknesses, partly because treatment trials are done on heterogeneous populations (selection bias). It is problematic to generalize findings to patients with myalgic encephalomyelitis, because one cannot know which patients in a heterogeneous group that has benefited from the treatment. Those who wrote the report chose knowingly omitting information about major user surveys showing that graded exercise therapy and cognitive behavioral therapy generally either do not work or are injured.

You can read the rest of this comment herehttp://tidsskriftet.no/2006/10/brev-til-redaktoren/et-tilbakeskritt-pasientene

 

Source: Stormorken E. A step backwards for the patients. Tidsskr Nor Laegeforen. 2006 Oct 19;126(20):2688-9; author reply 2689. [Article in Norwegian] http://tidsskriftet.no/2006/10/brev-til-redaktoren/et-tilbakeskritt-pasientene (Full article)

Myalgic encephalopathy–an inexact report with doubtful conclusions

Norwegian Knowledge Centre for Health Services was recently commissioned to clarify the scientific basis for the diagnosis and treatment of Myalgic encephalopathy (ME). The report is unfortunately imprecise and conclusions questionable.

Myalgic encephalopathy (ICD-10: G 93.3) is a disease or a spectrum of diseases which are described in many clinical reports internationally. Patients have symptoms of multiple organ systems, often with widespread pain and neurocognitive disorders, and they have an abnormal response by physical or mental activity, with sometimes extreme fatigue and worsening of symptoms and long recovery time. The etiology is unclear.

You can read the rest of this comment here: http://tidsskriftet.no/2006/08/brev-til-redaktoren/myalgisk-encefalomyelopati-upresis-rapport-med-tvilsomme-konklusjoner

 

Source: Eriksen W. Myalgic encephalopathy–an inexact report with doubtful conclusions. Tidsskr Nor Laegeforen. 2006 Aug 24;126(16):2144; author reply 2144-5. [Article in Norwegian] http://tidsskriftet.no/2006/08/brev-til-redaktoren/myalgisk-encefalomyelopati-upresis-rapport-med-tvilsomme-konklusjoner (Full article)

Exhaustion–not fatigue

Erlend Hem & Jon Håvard Loge refutes the language gap in this Journal no. 18/2004 our argument that “chronic  exhaustion syndrome” should be the Norwegian term for “chronic fatigue syndrome” ( 1 , 2 ). In his speech, they write that “many patients with somatic diseases and fatigue would probably feel somewhat alien to mention symptom as fatigue, because fatigue usually linked to a prior activity” ( 2 ).

You can read the rest of this comment here: http://tidsskriftet.no/article/1095666

 

Source: Wyller VB, Wyller TB. Exhaustion–not fatigue. Tidsskr Nor Laegeforen. 2004 Nov 4;124(21):2802; author reply 2802. [Article in Norwegian] http://tidsskriftet.no/article/1095666 (Full article)