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

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

Picture of Kate  Benson

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?

Comments

Picture of Karen Lambert

The medical establishment will have you believe that Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) is some sort of mysterious illness, but it’s no mystery to me; CFS/ME leads to HIV-Negative AIDS, idiopathic CD lympocytopena (ICL), a clinical diagnosis that I possess.

 

How can the AIDS establishment continue with a stale "it's caused by HIV" theory when there are ICL cases cited in medical journals dating back to 1992? While millions of ailing immunodeficient CFS/ME patients get belittled and neglected, perfectly healthy HIV+ people are allocated billions of dollars in taxpayer money. How can it make sense to anyone?

 

In the U.S. last year, the NIH spent $3.1 Billion of our tax money drugging perfectly healthy HIV+ people. Sick, ailing immunodeficienct (some of us dying) CFIDS patients received $6 Million. How can it make sense to you? source: http://report.nih.gov/rcdc/categories/

 

It's so easy to see that the medical establishment simply has these paradigms (CFIDS, HIV) inverted. AIDS patients are simply more CFIDS patients, who also happen to harbor a seemingly harmless virus, HIV. AIDS patients are just the tip of the CFIDS iceberg, and it's already well-documented that HIV is not the cause of CFS/ME.

 

How else do you explain why there is no CFS/ME pandemic in the HIV+ population? CFS/ME does not discriminate. The answer is that there is; any otherwise perfectly healthy HIV+ person that is: 1) symptomatic, 2) better on ARV's, and/or 3) severely immunosuppressed (AIDS)...

 

...is a CFIDS patient.

 

Putting causal pathogens aside (for a minute), simply rename CFIDS, ME, and AIDS all to be "low natural killer cell disease" and only diagnosis patients with "low NK cells" with it. Everyone would clearly see that:

 

CFIDS + ME + AIDS = low NK cell disease = one catastrophic pandemic *

 

 

* not caused by HIV

 

Allied government sold-out global public health for sake of profit --> industry, oil, and Orwellian greed. If I weren't only 25% alive, I often wonder if I should 'Occupy' the White House.

 

Now that the mystery has been solved, could we please stop wasting time and re-allocate ALL HIV funding into CFIDS/ME/AIDS research?

 

I demand a revolution!

www.cfsstraighttalk.blogspot.com

Picture of Karen Lambert

Chronic Fatigue Immune Dysfunction Syndrome (CFIDS/CFS) is not a disease. CFIDS is a syndrome, as its name suggests.

 

Acquired Immune Deficiency Syndrome (AIDS) is not a disease. AIDS is a syndrome, as its name suggests.

 

Neither CFIDS nor AIDS are diseases. A syndrome is a syndrome.

 

Myalgic encephalomyelitis (ME) is a disease, just like MS or malaria.

 

CFS and ME are not the same (one a syndrome, the other a disease). CFS/ME terminology is not interchangeable, and is not accurate.

 

CFS (syndrome) patients like to align themselves with ME (disease) patients because it helps give our syndrome the dignity and respect that it currently lacks (i.e., due to the silly, belittling name our government labeled it). I coined this phenomenon 'disease envy.'

 

 

I don't entirely disagree that CFS patients should do this. CFS patients have to understand, however, that we are stealing the name of a legitimate disease, ME. This is the reason why ME patients typically don't like to be lumped in with the CFS patients, because CFS patients' dilute the meaning of ME's very well-defined disease. I don't blame them. If I were a ME patient, I wouldn't want a CFS patient lumped in with me either.

 

If you are a CFS patient and your doctor has not diagnosed you with ME, then you cannot arbitrarily decide that you have ME (e.g., I am a CFS patient, and I am far sicker than most ME patients that I know, so what difference does it make?). Although both illnesses have the same gravity, they are not the same diagnosis. There is currently a massive initiative to get CFS (syndrome) patients properly diagnosed as ME (disease) patients. Simply look-up: "ME ICC vs CFS Fukuda." You have to acknowledge however that not all CFS patients will quality for a ME diagnosis. I repeat CFS/ME terminology is not interchangeable, and is not accurate.

 

I see the big picture as to why CFS and ME terminology should not be severed (at least until the initiative is complete), as there is a high correlation and probable same causal pathogen shared between the two maladies. Allied government (political) simply named us two different things so we don't roll-up into the same category (i.e., by ICD-coding) on a world-wide level, which would garner more attention then require their public response.

 

Allied government sold-out global public health for the sake of profit.

 

AIDS and CFIDS (both syndromes) are 100% political paradigms.

 

www.cfsstraighttalk.blogspot.com

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