Sunday, April 7, 2013

HAWMC Day 7th: The media and ME

Today's prompt as part of the Health Activist Writer's Month Challenge is all about sensationalizing.
And I got a very good example of that with this headline that is fresh from today:
Abused women linked to higher autism risk

Sigh. Who is NOT rolling their eyes? 
These kinds of articles happen all the time with myalgic encephalomyelitis. We are being portrayed by the media and to an extent, by society, as people who think they are sick but they are not. 
Over the years, there has been more media coverage linking ME and CFS to mental disorders and sexual abuse as a child than decent biomedical papers. The scary part is there are researchers behind these papers who do this kind of research. 

Let's take the paper above. So if you are abuse as a child and give birth to a kid (as an adult) apparently the kid has higher chances to have autism. This is just another "blame the mother" kind of paper. Just like the "refrigerator mothers" a few years back. The thing is, the autism rate is growing faster than any other diseases and there is no treatment other than behavioral for these poor kids and families. 

What does it serve to link sex abuse as a child- Are they going to sterilize these people in order to prevent autism? It is not like they have looked at whether getting treatment for said sex abuse has helped reducing the autism rate. Is that going to prevent abusers from sexually assaulting kids? Hell no! 

So what's the point of even funding these studies? Parents of autistic kids, they want concrete treatments for their children. Wouldn't you? (Of course I am preaching to the choir) 

In the Myalgic Encephalomyelitis case (also known as chronic fatigue syndrome) there has been a very persistant team of British psychiatrists claiming that ME is caused by childhood abuse, that patients have "false illness beliefs", that the only treatments for this disease are cognitive behavioral therapy and graded exercise therapy. 

Patients who have undergone these therapies have not gotten better. And it's not due to lack of trying. 
See, the UK government has spent over 7 million pounds into a trial called PACE trial. The psychiatrists recruited patients with chronic fatigue, chronic fatigue syndrome and ME but pretended they all had ME. They were randomized into different treatment groups. 
An explanation of the results can be found on the videos below.

In the end, the PACE trial was not designed to fail. And the investigators called it a success and said that the only proven treatments for ME were cognitive behavioral therapy and graded exercise therapy.They make a point in propagating the good news to the media all around the world.

Patient Advocate Tom Kindlon has been a fierce opposer of the Pace Trial and has written many rebuttals- if other patients with ME know links to find them, I will be happy to share it here.

And what does it mean for us patients who are sick? Well it means that governments do not want to fund biomedical research. It means that physicians want to prescribe anti-depressants and send us home. And it means that insurance companies send us for psychiatric evaluations.

Sadly even government agencies like the CDC is not immune to bullshit. Publications like these have been very hurtful and also contributed to the perpetuation that ME or CFS are not diseases worthy of biomedical research.

Nater UM, Jones JF, Lin JMS, Maloney E, Reeves WC, Heim C. Personality features and personality disorders in chronic fatigue syndrome: a population-based study. Psychother Psychosom 79:312-318, 2010.

Heim C, Nater UM, Maloney E, Boneva R, Jones JF, Reeves WC. Childhood trauma and risk for chronic fatigue syndrome: Association with neuroendocrine dysfunction. Arch Gen Psych 66:72-80, 2009.

Nater UM, Lin JMS, Maloney EM, Jones JF, Tian H, Raison CL, Reeves WC, Heim C. Psychiatric comorbidity in persons with chronic fatigue syndrome identified from the Georgia population. Psychosomatic Medicine. Jun;71(5):557-65 2009.

Heim C, Wagner D, Maloney E, Papanicolaou DA, Solomon L, Jones JF, Unger ER, Reeves WC. Early adverse experience and risk for chronic fatigue syndrome: results from a population-based study. Arch Gen Psychiatry. 2006 Nov;63(11):1258-66.

And I can tell you that with each of these publications, a press release was issued and sensational claims were written sometimes on the first page of serious papers such as WSJ or NYT or your city's paper. And uncle Bob made sure to phone to make sure you read that. All of this contributed to where we are in 2013, with minimal government funding, minimal physician experts, and a whole lot of physicians who either don't have a clue or don't have the skinny on what myalgic encephalomyelitis is all about.

And I would like to end on a positive note, by sharing articles who do make a difference. The first one is from last year. Sonia Poulton is a UK journalist who wrote a brilliant piece on ME.

The second one I am not entirely sure if I referred to him as part of the monthly challenge. Llewellyn King is a journalist in Washington DC, and has become a real advocate for all patients. He's written a really fine piece about ME. Worth of sharing twice titled Chronic Fatigue Syndrome: Hidden in Plain Sight


  1. One major problem with the four CDC studies mentioned above is that they used a very weird definition for chronic fatigue syndrome, the so-called "empiric" criteria. The CDC had previously estimated the prevalence of CFS as 0.235% of the population. Using very similar methods, the study by them that used these criteria found a prevalence of 2.54% i.e. 10.8 times the previous prevalence estimate. These new criteria have brought in all sorts of people who don't appear to have CFS at all i.e. have poor specificity. For example, one study found that 38% of those with a major depressive disorder, who wouldn't previously have been seen as CFS patients, were classified as having CFS under this new definition.

    Prof. Leonard Jason discusses the problems with the definition at: .

    This petition website includes further information and criticisms of the criteria: .

    Fortunately, the criteria have not been adopted by researchers outside the CDC, and it looks like the CDC may themselves stop using them.

  2. Thank you Tom, I admire and appreciate your eloquence. We patients with ME are lucky to have you around.