Chronic Fatigue Syndrome: Well, At Least They Didn’t Put "Cure" in the Headline

A few weeks ago William Heisel posted "Complete Health Reporting: News Releases Should Spark, Not Replace Good Questions - in which he stated, "Reporters have a duty to their readers to ask questions and get answers that aren't found in a news release."

His admonishments were still fresh in my mind when I began reading stories generated from a February 29 press release from the Lancet.

With one stand out article, it was rapidly apparent that not everyone got the memo.

Yes, it was the Lancet and a randomized control trial (RCT), but it also involved a topic that is rather controversial.  That should have thrown a flag even without Mr. Heisel's suggestions.

Mr. Heisel says, "...it makes sense to contact the people quoted in a press release, but it's always a good idea to go beyond those sources." I would add particularly when diverging points of view are well known.

Just as a quick aside for context, myalgic encephalomyelitis, also known as chronic fatigue syndrome, is a condition essentially divided by two main reserach camps. The issue for journalists is not who is right or wrong, but the knowledge that researchers are very divided in terms of focus, ideology and theories indicating sources from each camp should be probably be contacted.

In general one group, composed primarily of psychiatrists and psychologists, believes ME and CFS to be psychosomatic or possibly a brief acute illness perpetuated by inappropriate beliefs about the severity of the illness.  The authors of this study and the accompanying editorial are among those researchers. The treatment focus is on exercise and CBT talking patients out of thinking they are ill.

The other group consists of both biomedical and behavioral researchers who consider ME/CFS to be a severe organic disease with the same psychosocial overlays found with any other severe disease.  This group is a little more diverse with some focusing on pathogens while others focus on the key characteristic of exercise intolerance for example.

In this case, former BBC journalist Nicky Broyd rose to the challenge in her article for Boots WebMD, "CFS/ME: Online treatment for teenagers: Study in the Netherlands finds internet treatment for adolescents with chronic fatigue syndrome is effective, but the findings are questioned by some UK experts." 

Here is one of the graphs from her article in stark contrast to what was in most other press release based articles said.

'Not believable'

There was scepticism too from Dr Charles Shepherd, medical adviser to The ME Association, who commented to us via email: "I find it hard to believe that an internet-delivered cognitive behaviour therapy (CBT) programme can produce a 63% recovery rate over a six month period - even if those involved were very carefully selected.

"The success rate is far in excess of any other published clinical trial involving the use of any form of CBT in ME/CFS and is not consistent with the results from several large patient surveys carried out in the UK, the largest of which [MEA Management Survey] found that only 2.8% were 'greatly improved' whereas 54.6% reported 'no change' in their condition.

"It should also be noted that a wide variety of clinical presentations and pathologies come under the ME/CFS umbrella and that while CBT may be of help to some people with this diagnosis it is not an appropriate or effective form of treatment for others."

The take at WebMD in the United States was very different with writer Salynn Boyles leading with "Internet-based behavioral therapy appears to be a highly effective new tool for the treatment of teenagers with chronic fatigue syndrome (CFS), according to a new study from the Netherlands."

Ms. Boyles clearly took the time to read the study – going beyond the bare bones of the release which was more than most, but did not include outside sources. 

So why was her conclusion so different from that of the U.S. based CFIDS Association, whose scientific director was formerly with the CDC CFS Research Program in the Division of High Consequence Pathogens? Did Ms. Boyles attempt to reach the Association for comment? Would it have strengthened the article?

The CFIDS Association analysis stated in part, "...the 66 percent recovery rate reported for FITNET might be more optimistic than warranted." They then went on to explore not only the studies strengths, but the limitations as well. This included noting that according to the psychiatrists who wrote the accompanying editorial, had the authors had used one standard deviation to measure "recovery," the results would have been less favorable – 36%. This means that the majority of patients did not improve significantly much less "recover", despite all their time and effort. 

So the lede could just have easily stated that nearly two thirds of participants did not "recover" with this treatment. Had the study been framed this way would journalists have avoided overhyping this treatment?