By David Tuller, DrPH
I’ve been writing about so-called “medically unexplained symptoms,” or MUS, for the last couple of years. Much of that has come in the form of critiques of specific studies making excessive claims about the healing powers of cognitive behavior therapy.
Recently, a blogger named Goodelf has posted a couple of revealing posts about the overall approach to MUS in the UK, especially about how proponents of the concept have presenting data in misleading ways. Both articles have been posted on the Opposing Mega site, originally established a few years ago to counter a stupid proposal from the then-leadership of the CFS/ME Research Collaborative. The first article was about a seminal study on the supposed prevalence of MUS and on rates of misdiagnosis.
I’ve posted below the opening of the second article, which elaborates on the issue and is titled “A Letter to Jeremy Hunt.”
In my first online post, “Untangling the MUS Web” – https://opposingmega.wordpress.com/2020/05/01/untangling-the-mus-web/ , I revealed how doctors, healthcare commissioners and other healthcare workers have been misled regarding the risks of adopting the current UK strategy towards ‘medically unexplained symptoms’ (MUS) of quickly identifying patients with MUS and diverting them away from biomedical care to cheaper psychological therapies instead. By splitting their write-up of a key MUS study between two separate papers, the authors – Nimnuan, Hotopf and Wessely – enabled researchers and authors to cite a 2001 paper for its finding of high MUS prevalence rates (averaging 52%) in secondary care without readers being aware of the unacceptably high MUS misdiagnosis rates that accompanied the study that were documented in a sister paper that was published in 2000. The Nimnuan et al 2001 paper has been referenced hundreds of times and is still being used as evidence of high MUS prevalence rates, but whenever it is cited readers should be made aware of the appalling levels of MUS misdiagnosis that the study uncovered which averaged over 25% of patients initially diagnosed with MUS being wrongly diagnosed and in two specialties reached as high as 40%.
The following is just one incidence of how the Nimnuan et al 2001 paper has been used to persuade or mislead the UK Government to adopt the MUS strategy at policy level…The rest can be read here.
I met Anil van der Zee four years ago, when he invited me to do a video presentation for an Amsterdam event. Since I love Amsterdam, I showed up in person. *He was too ill for me to visit him, even briefly, during that trip, but I was able to on a couple of subsequent trips. [*I initially wrote that I met Anil briefly on that first trip. After I posted this blog, Anil reminded me that he was unable to meet me the first time. I apologize for my memory slip.] Anil, a dancer by training, has been homebound for years. I would have loved to have seen him dance in person. He is also an amazing photographer and a sweetheart.
Below is the beginning of his recent post, “The Fear in My Doctor’s Eyes.”
The Fear in My Doctor’s Eyes
Before becoming ill, my relationship with the medical world was always great. It was pretty much straightforward really.
During my profession as a dancer, injuries were of course always of a concern. I had to be in close contact with doctors, physiotherapists, massage therapists, chiropractors. The only way was up. Back to full health and recovery. I was considered a reliable dancer with a focus on “the show must go on” and a patient with great resilience.
When I contracted a cytomegaloviral infection and didn’t seem to be recovering, that all came to a squeaking halt. I tried all the go-to treatments like graded exercise therapy (GET) which didn’t really seem to work. In fact the building up of my activity levels made me significantly worse!
I suddenly became a patient that nobody knew how to really treat anymore. Walking into the office of my doctor had a whole different feel to it. From the “all smiles there’s Anil”. To “Oh gosh there’s Anil”. There was a certain fear in my doctor’s eyes!
At the time I wasn’t really aware that patients with a disease like ME could be considered “difficult” patients. Not only because of the fact that they might be hard to treat, but difficult as a person. All kinds of character traits have been assigned to patients that suffer from diseases like ME.
For example, a lack of resilience to deal with symptoms and that they’re doctor shoppers with or without the intention of secondary gains. Some even talk about us as being needy and even hateful. It’s not uncommon when you mention the fact that you have ME, that the treatment you’re going to get will change in an instant.
Now luckily this is not the case with every practitioner and I do think things are slowly changing. That being said I’ve always wondered how it got to this point in the first place. Why do some practitioners almost seem to hate their patients. Are these really the characteristics of patients with a disease like ME? Is this exclusively for a disease like ME? Are there likely ways to improve communication?
One of the biggest issues is the treatment of ME. There aren’t any FDA approved treatments for ME. The only “proven’ and “preferential” treatments are cognitive behavioural therapy (CBT) and GET. According to psychiatry, these treatments have the ability to even cure patients from their chronic fatigue (CF).
The CBT/GET model suggests that after an initial infection you will have physically started doing less. The disease is then said to be caused by false or unhelpful illness beliefs about the patient having a somatic illness. In other words, you are said to be no longer ill and that patients can recover if they are able to overcome their fear of activities and that any worsening after exertion is just a normal reaction of the body because you’re deconditioned. It’s not a sign that you’re making things worse.
The core symptom of the illness is not “fatigue” but the relapses which patients suffer from after over-exerting themselves, often referred to as post exertional malaise (PEM), which makes CBT/GET clearly contra-indicated as a treatments.
CBT is used in various diseases, but when applied to multiple sclerosis, diabetes or rheumatism, CBT does not claim to be a cure. By reducing the disease, ME, to just fatigue, they project the image of having a cure for the disease itself. That is not the case. Fatigue is just a symptom of many diseases. It’s not a disease in itself.
Now besides the fact that the model doesn’t fit with the disease mechanism of ME and the methodological flaws of these trials are even more astonishing, many patients are aware of these issues in regards to the behavioral science, but what about the medical world? If you step into a doctor’s office it’s not unlikely that doctors will suggest trying CBT and GET.
One of my GPs in the Netherlands suggested that I should try CBT although I already explained to her that CBT (with a GET component) made me significantly worse. Her argument was that CBT has also shown to be effective in cancer. I wasn’t as aware of the science behind the CBT/GET trials at the time so I kind of let that comment slide but when looking back it clearly showed that she wasn’t aware of the flawed rationale behind the science.
Regardless of the fact that the treatments made me worse because of the PEM, she still recommended it. The question is, could I really blame her for not not knowing?
Doctors just simply don’t really have the time to read through all the latest and greatest news of every single disease. They need clear information filtered down through clinical guidelines or recommendations from the National Institute for Health and Care Excellence (NICE), the Centers for Disease Control and Prevention (CDC), Cochrane or wherever, assuming the information is sound.