Category: Media Coverage

‘You don’t want to get better’: the outdated treatment of ME/CFS patients is a national scandal

By George Monbiot

It’s the greatest medical scandal of the 21st century. For decades, patients with ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) have been told they can make themselves better by changing their attitudes. This devastating condition, which afflicts about 250,000 people in the UK, was psychologised by many doctors and scientists, adding to the burden of a terrible physiological illness.

Long after this approach was debunked in scientific literature, clinicians who championed it have refused to let go. They continue to influence healthcare systems, governments and health insurers. And patients still suffer as a result.

Read the full article in The Guardian HERE.

UK health standards body delays new ME guidance in therapy row

The National Institute for Health and Care Excellence (Nice) has withdrawn long-awaited landmark guidance on ME hours before its planned publication amid a backlash from medical groups.

Charities and patient groups fighting for greater recognition of the poorly understood condition as a medical illness rather than a psychological problem had welcomed the planned guidance, which was due to stop advising doctors to administer a controversial therapy.

This disputed therapy, called graded exercise therapy (GET), involves incremental increases in physical activity to gradually build up tolerance. Patient groups have argued its use suggests those with ME have no underlying physical problem but are having symptoms due to inactivity.

Read the rest of this article HERE.

A content analysis of chronic fatigue syndrome and myalgic encephalomyelitis in the news from 1987 to 2013

Abstract:

Objectives The aim of this study was to analyze the content of American newspaper articles ( n=214) from 1987 to 2013, in order to understand how the public digests information related to Chronic Fatigue syndrome, a controversial and misunderstood illness.

Methods A novel codebook derived from the scientific literature was applied to 214 newspaper articles collected from Lexis Nexis Academic®. These articles were coded quantitatively and frequency tables were created to delineate the variables as they appeared in the articles.

Results The etiology was portrayed as organic in 64.5% ( n=138) of the articles, and there was no mention of case definitions or diagnostic criteria in 56.1% ( n=120) of the articles. The most common comorbidity was depression, appearing in 22.9% ( n=49) of the articles. In 55.6% ( n=119) of the articles, there was no mention of prevalence rates. In 50.9% ( n=109) of the articles, there was no mention of any form of treatment for the illness. A total of 19.4% ( n=42) of the headlines mislabeled the name of the illness.

Discussion Based on descriptive statistics of all 214 coded articles, media communicated mixed messages for salient variables such as the name of the illness, its etiology and treatment.

 

Source: Siegel ZA, Brown A, Devendorf A, Collier J, Leonard J. A content analysis of chronic fatigue syndrome and myalgic encephalomyelitis in the news from 1987 to 2013. Chronic Illn. 2017 Jan 1:1742395317703175. doi: 10.1177/1742395317703175. [Epub ahead of print] https://www.ncbi.nlm.nih.gov/pubmed/28403636