Response to “Fighting Fatigue” on MindHacks.com

This article is a response to the article “Fighting Fatigue“, published on January 6, 2010, by Vaughn on MindHacks.com. I have seen it described on Twitter as well-balanced, thoughtful approach, first-base, …, but I don’t agree; I find it biased. I recommend you read the article first, before you read my response.

About the Author

After I read the article a second time, it was my guess that the author is a psychiatrist. I came to this conclusion based on the use of acronyms, terms, examples, and symptoms listed. I was wrong, the author is a clinical psychologist. Close, but no cigar.

About the Article “Fighting Fatigue”

The author consistently uses CFS, instead of ME/CFS and doesn’t even mention ME. I admit this is a bit of nitpicking on my side. Any use of ME/CFS in this post is made by me.
He does mention more symptoms than just fatigue, but limits it to symptoms everyone experiences once in while: diffuse body pain, persistent tiredness and loss of concentration. More on that later.

According to the article, there are 2 groups in the heated debate on the cause of the condition. There are the patients, who believe the condition is entirely caused by a biological disruption of the body, and on the other side, the researchers, who believe there is a significant psychological component. If that ain’t biased. The so-called researchers here are mostly psychiatrists and psychologists. There are a lot of scientists, professors and medical doctors in the patient’s camp.

Apparently we are a dangerous lot. Did you know we are part of an extreme community?

I was contacted by one CFS researcher wanting a copy of a paper I wrote on extreme communities because their family was under police protection following death threats, subsequent to a public suggestion that psychology might play a part in the condition.

What is the author thinking of? I have never heard of this. Does the author thinks this case is representative for the online ME/CFS community? A thoughtful approach?
What about the hundreds of thousands, even millions of ME/CFS patients whose disease isn’t taken seriously, who don’t get any form of disability or who live in constant uncertainty whether they will keep their disability because of the psycho lobby? Again, biased. Do psychologists and psychiatrists live in an ivory tower, not even considering the consequences of stigmatizing 3 to 4 people in every 1000 for having a psychological illness? Thus denying adequate medical care! What about the money, time, and energy wasted on useless therapies? What is the effect of the dominant psychological approach to ME/CFS on people’s lives, their income, their pensions, their families, and the economy?

The author then pits proponents of the psychological approach against patient groups.

… numerous controlled studies have found that a psychological approach, in the form of a cognitive behavioural therapy (CBT), is one of the most effective, if not the most effective treatment

versus

… [CBT] is often rated as one of the least preferred among patients groups.

Numerous controlled studies versus patient’s preference. What about the numerous studies that proved that CBT and GET are ineffective and can even make the condition worse?
On January 8, 2010 an article appeared in the Artsenkrant, the reference for family doctors and specialist in Belgium: “Belgian CFS Reference Centers: unscientific, immoral and unethical” by Michael Maes, a psychiatrist. I am curious to see what this stirs up. The article is on page 22 and 23, but only available in Dutch.

I am not a native English speaker, but I think the use of the word illness instead of disease is also a form of bias. In Dutch there is no difference, both words are translated to ziekte.
According to the The Free Online Dictionary:

disease: A pathological condition of a part, organ, or system of an organism resulting from various causes, such as infection, genetic defect, or environmental stress, and characterized by an identifiable group of signs or symptoms.
illness: Poor health resulting from disease of body or mind; sickness.

Maybe the author should read the Canadian Consensus Document and look for an identifiable group of signs or symptoms before writing on ME/CFS.
According to the Wikipedia article on disease:

Illness
Illness and sickness are generally used as synonyms [for disease]. However, this term is occasionally used to refer specifically to the patient’s personal experience of his or her disease. In this model, it is possible for a person to be diseased without being ill, (to have an objectively definable, but asymptomatic, medical condition), and to be ill without being diseased (such as when a person perceives a normal experience as a medical condition, or medicalizes a non-disease situation in his or her life). Illness is often not due to infection but a collection of evolved responses, sickness behavior, by the body aids the clearing of infection. Such aspects of illness can include lethargy, depression, anorexia, sleepiness, hyperalgesia, and inability to concentrate.

Bias in the use of illness instead of disease?

The paragraphs on the research on XMRV are acceptable, but there is more information on the differences between the WPI research and the UK study in a press release by the WPI. The author describes the comments on the UK study that failed to detect XMRV in CFS patients as “you can feel the anger simmering through.” There is a vocal pro XMRV group, but my attitude is best described as wait and see, and I am not alone in this. At this moment there is too much hype and not enough research. There are several ongoing research projects on XMRV and I think we will have a much clearer picture by the Summer of 2010. Meanwhile I try to make the most of each day.

From an outsider’s perspective, it’s interesting to see how CFS is considered by many to be a single condition that must have a single cause.

I don’t know if that is correct. It is accepted in the community that there are similarities between ME/CFS, PVFS, Gulf War Syndrome, and FM; that the mix of symptoms and the severity of individual symptoms can be different for each patient; that medication, supplements, and diet that help one patient don’t necessarily work for other patients. I don’t dare to say that the single condition, single cause theory is accepted by many or the majority. It would be nice if a single cause for ME/CFS, and by extension PVFS, Gulf War Syndrome and FM, could be found, but I haven’t set my hopes on that.

But in reality, the diagnosis is just made on a collection of symptoms – tiredness, pain, impaired mental abilities and so on.

These symptoms are interesting because they occur in a whole range of conditions: in diabetes, after concussion, after a viral infection, after any of stroke, brain injury or Parkinson’s disease, alongside a range of mental illnesses, and so on.

It is usually a diagnosis of exclusion, based on some symptoms, but it shouldn’t be like that. Hasn’t the author heard of the Canadian Consensus Criteria?
The link the author provides for mental illnesses points to an article on Chronic Fatigue (CF) and neurasthenia: “The relationship between fatigue and psychiatric disorders: evidence for the concept of neurasthenia“, by, among others, … Simon Wessely. The author conveniently left out a whole range of symptoms to reach this conclusion: post-exertional malaise, myalgia, POTS, IBS, new allergies, loss of thermostatic ability, sensatory overload, neurocognitive impairment, hypoglycemia, … How do these symptoms compute for a mental illness?
I also notice that the adepts of the psychosocial approach use the expression mental impairment, while doctors of the biomedical school use the expression cognitive impairment. From mental impairment/problems/difficulties it is only a small step to a mental illness. This is not the case when you use cognitive.

The author wouldn’t be surprised if some cases of CFS are triggered by an unknown viral infection, but even then the virus will not be the sole explanation for the condition. So, no matter what causes CFS, patients will need psycho-therapy, and not only CFS patients:

… to deny a psychological component to any medical condition risks denying a useful tool to help those who need it most.

Recently, a Belgian psychiatrist and strong promoter of the psychosocial cult, wrote something similar. Any medical condition? So, if you have a cold, flu, cancer, or broken bone, you need psycho-therapy? Bit self-serving isn’t it?

No matter what the cause for CFS is, psychology will always play a key role. The important thing is to fight the prejudice associated with mental explanations. That is, according to the author. In my humble opinion there are other priorities when it comes to ME/CFS than to fight the prejudice against the psychobabble.

Confession

I admit, I am biased when it comes to professions that start with “psych”. I was diagnosed with CFS after only 9 months and was referred to the newly founded CFS Reference Center in Gent. My initial hope quickly disappeared when I learned that the only people who worked there were psychiatrists and psychologists. I had never met one before I was diagnosed, and since then have seen 5 of them. After 1 year I was already on my 4th psychiatrist; apparently they didn’t like to be in a CFS Reference Center anymore than I did.
The first one was okay, he taught me pacing and to keep a diary, to see if I could find a link between feeling a bit better or worse and something I’d done or eaten the previous day. But the next ones weren’t interested in physical symptoms at all. The post-exertional malaise, the fatigue, the insomnia, the new allergies, the brainfog, … got completely ignored. Why don’t you go out and make some friends? Why don’t you do this or that? How were you as a child? … How can you accomplish anything with pacing or even CBT when you ignore allergies and the post-exertional malaise? Complete wastes of time, money and precious energy.
As far as I am concerned; if psychiatrist have a bad reputation, they have only themselves to blame.

Conclusion

Thoughtfull? Well-balanced? First-base article?
I don’t think so. The examples and terminology used are chosen in favor of the psychological approach to ME/CFS, and the symptoms listed are chosen to create confusion with Chronic Fatigue (CF) and neurasthenia. I call this approach biased and misleading.
Stating that even when CFS is triggered by an unknown viral infection, a psychological approach should still be considered is absurd. Heck, according to the author there is a psychological component to any medical condition. I call that self-serving.

P.S.: On January 12, 2010 Slashdot published an article “US Youth Have Serious Mental Health Issues” with a link to a study that claims that five times as many high school students in the USA are dealing with anxiety and other mental issues than youth of the same age who were studied in the Great Depression era. The comments beneath the article are comforting; the average geek on Slashdot has a lot more common sense than psychiatrists and psychologists.

Resources

Image: Suat Eman / FreeDigitalPhotos.net

Other resources are linked to throughout the article.

If you tell a lie big enough and keep repeating it, people will eventually come to believe it.

Joseph Goebbels

Tagged as: Awareness, biomedical, pseudoscience, psychobabble, psychological, XMRV