Trial By Error: A Couple of Blog Posts Worth Reading

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

The honeymoon.

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?

The treatment. 

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.

The rest can be read here.

Comments on this entry are closed.

  • Alicia Butcher Ehrhardt, PhD 2 June 2020, 1:28 pm

    “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.”

    That’s the key reason why these fake ‘therapies’ gain government and health insurance company support: they can then deny care to a whole class of expensive people with difficult symptoms.

    Pretty disgusting way to ‘care’ for sick people.

  • CT 2 June 2020, 2:34 pm

    Alicia – They say that MUS patients are too expensive, but aren’t they really saying that patients are too expensive, that medicine is too expensive, because aren’t unexplained symptoms what diagnostic medicine is all about? I doubt their claims anyway, I don’t think their costing figures stack up. And if they’re hunting down expensive patients then why do they include ME sufferers in the MUS mix? From what I’ve seen, ME sufferers avoid doctors like the plague and have to be half dead before they go anywhere near a GP surgery or hospital because they know what will be facing them, (and it ain’t nice). But to answer my own question – I guess it’s to make sure that they don’t get any welfare support either.

  • CT 2 June 2020, 5:19 pm

    I’ve managed to read the 3 articles now. What seems to be common to them is the sense that we shouldn’t blame ordinary doctors for the way they behave – they’re just reacting to the situation they’re in through the lens of what they’ve been taught. Anil Van Der Zee describes so well the way that some doctors turn though – ‘from the “all smiles there’s Anil”. To “Oh gosh there’s Anil” ‘ and he perfectly encapsulates the reason why – ‘All kinds of character traits have been assigned to patients that suffer from diseases like ME.’ It’s hard for patients not to be angry at being treated so unjustly and being framed so that they have no hope of getting the care that they need, but it’s important for them to remember that this is coming from above, and doctors are trained to do what they’re told. Doctors are being terribly misled by those above them, as Goodelf’s articles describe, and sometimes they find this out to their own cost, sometimes too late -https://www.theguardian.com/healthcare-network/2018/jan/18/dad-gp-nhs-let-him-down-when-needed-most. They need to realize that there’s no reason to fear their patients. It’s their bosses and leaders who let them down, who cause their stress and who seek to distort the doctor-patient relationship by promoting unfair stereotypes, tired clichés and unnatural ways of communicating with patients that are bound to make their lives even more stressful and miserable.

  • Lady Shambles 3 June 2020, 7:45 am

    CT says: “They (doctors) need to realize that there’s no reason to fear their patients. ”

    Indeed, this may be so, but it is also true to observe that people with ME actually DO fear their doctors. However, the sensible direction of fear in these ‘relationships’ should really be from doctors in fear of those who provide them with such terrible top-down junk science. After all when patients suffer real and measurable harms at the hands of this nonsense, it isn’t the Establishment hierarchy who are held to account is it?: no it’s the gullible GP who thought they were doing good following the ‘rules’ to the letter.

    BUT!: It has to be acknowledged that some clinicians are fully au fait with what they’re doing and have links to those who promulgate daft ideas about somatizing patients making up as much as 40% of those accessing healthcare on the NHS. It is those doctors…those who refuse to test patients in the appropriate way, for example…who should be held to account. In fact I’d argue that if people with ME have met these clinicians in their long meanderings with the medical profession, then they should be encouraged (health permitting) to make formal complaints about their care. How else can iatrogenesis in this disease be formally measured otherwise? In this context doctors should fear patients & they should start to properly engage with their patient and give them the best of their care, test them as appropriate and diagnose them with real intelligence and compassion. People with ME aren’t slow to recognise the difference between a doctor whose hands have been tied by very bad NICE Guidelines and those who salivate at the thought of gaslighting another poor ‘victim’. People with ME will give the benefit of the doubt to the former, but not the latter.

  • CT 3 June 2020, 1:27 pm

    I know what you mean Lady Shambles, and the MUS model they follow allows all sorts of prejudices to rear their ugly heads. It’s just that I think that most doctors start off as quite well intentioned. Of course the ones that lie and manipulate to prevent patients getting access to care and investigations should be accountable for their actions and brought to book. It’s shameful that they’re taught and encouraged to do these things particularly with respect to ‘managing’ patients with ME or MUS. In these cases patients should indeed take action because there is currently no other measure of the harm that’s done.

  • Lady Shambles 4 June 2020, 7:22 am

    CT says: ” It’s just that I think that most doctors start off as quite well intentioned.”

    I’d like to think that was case. Sadly most people with ME will have met more doctors who are either disinterested or show an inclination to gas light than doctors who are genuinely well intentioned. I guess in that regard we’ve become a self-selecting conduit for bad practice based purely on our misfortune of having a disease that isn’t understood, yet. But I do know the odd good doctor… there are exceptions that prove the rule, even in the context of ME.