NZ Listener - Ills thought out - Wilson 2019

[Hutan]

@Ravn brought this article in a NZ magazine to our attention in the New Zealand thread.

Marc Wilson is a regular columnist in the Listener, a mainstream magazine in New Zealand that is currently claiming to be New Zealand's Bestselling Current Affairs Magazine (although I imagine a lot of people only get their news online these days). Wilson's column in the May 11-17 edition talks generally about how poor thinking can impact on how people manage their illnesses.

For example, reviews of many studies show that people diagnosed with MS have consistently poorer outcomes if they not only feel more stressed, but also deal with their stress and condition through "maladaptive emotion-focused" coping strategies, such as wishful thinking or pretending it's not happening.

The irony of following that statement with an endorsement of CBT for CFS later in the article is sadly lost on Wilson.

As with diabetes, MS or even asthma, there's reason to believe that how you think affects the way you experience CFS and, perhaps, even whether you develop it at all.

Wilson talks about a study by Moss-Morris:

She and her colleagues followed more than 200 people diagnosed with glandular fever.. over six months. Having anxiety and depression meant a 20% greater likelihood of developing CFS, whereas perfectionism and all-or-nothing responses to illness (such as burning yourself out by overdoing things) contributed 10% and 14% more risk to future CFS.

And presumably CBT:

More recently, Moss-Morris, now a professor at the Institute of Psychiatry in South London, and others have also shown that being able to change the way you think about your symptoms results in a 15% improvement in quality of life six months after a CFS diagnosis.

On the positive side, Wilson doesn't doubt the seriousness of CFS, mentioning "hugely debilitating fatigue". He says that we don't know "exactly what's going on with CFS, but we do know sufferers have abnormal immune systems". He notes that there is no treatment for CFS (but does quote health navigator as saying that reducing stress and practising mindfulness meditation may help).

And, the reported 15% improvement in quality of life from changing how you think is hardly a cure. So, it could be worse.

The article may turn up online at noted.co.nz/the-listener.

Letters to the editor can be sent to letters@listener.co.nz. Letters under 300 words are preferred. You need to include your full name and residential address.

 

[Hutan]

I sent the following as a letter to the editor today:

Thanks to Marc Wilson in 'Ills thought out' for correctly reporting that CFS (or ME/CFS as it is better called) is 'hugely debilitating' and that currently there is no treatment.

The recent trans-national consensus document by the International Alliance for ME noted that no study has provided scientific evidence to support the theory that personality, psychological or behavioural factors predispose or perpetuate ME/CFS. This document was signed by 12 national societies including ANZMES, New Zealand's ME/CFS charity, and dozens of leading researchers.

Studies claiming to find evidence for poor-thinking causing ME/CFS tend to have a morass of design problems including small sample sizes (as was the case with the Moss-Morris paper quoted in Wilson's article which had just 17 people with 'CFS') and p-hacking. More robust studies fail to find such evidence. A recent study found that young people with ME/CFS did not have more perfectionist traits than healthy controls.

There are estimated to be 20,000 people with ME/CFS in New Zealand, people of all kinds, people who are sometimes perfectionists and people who are sometimes comfortable with mediocrity.

Thankfully, most people no longer believe that neurotic personalities predispose women to breast cancer although this had been widely held to be true. It is time to similarly move on from victim-blaming ideas related to ME/CFS.​

I would have liked to address the issue of CBT only producing small and short lived responses on subjective outcomes but didn't have enough words.

Perhaps more letters might make someone at the Listener think that a bigger better article is warranted.

 

[Trish]

Excellent letter, @Hutan. I hope they publish it.

 

[chrisb]

One is immediately suspicious of a title like "Ills thought out". Too clever by half. Perhaps that is where all the effort went. Clearly indicates the authors "thinking".

 

[Ravn]

I sent the following as a letter to the editor today:

You're a star

 

[ME/CFS Skeptic]

Good letter @Hutan. It seems that you and @Ravn are doing some excellent advocacy work in New-Zealand.

 

[Carolyn Wilshire]

Pretty taken aback by this article. By a colleague in my own department too. I've also sent a letter. Its way too long, but I'm hoping they might give me special dispensation as a fellow psychologist!

I read with concern my colleague Marc Wilson’s article “Ills thought out”, which suggested that the disease called myalgic encephalomyelitis/chronic fatigue syndrome (henceforth MECFS) might be caused by “dysfunctional” thoughts and feelings. As a psychology researcher who has worked directly in this area, I would like to offer a very different perspective.

Psychology research loves a vacuum. MECFS, whose cause is still unclear, is the perfect candidate for our musings. Researchers have eagerly set about to show that certain undesirable personality traits, thinking patterns or behaviours might cause or perpetuate the illness. This research is easy to conduct: find a small group of MECFS patients and a healthy comparison group, and ask them to complete a swathe of questionnaires.

But there are two major problems with this approach. One is that the findings are not consistent across studies. One small study, mentioned in Marc Wilsons’ article, found that MECFS patients endorsed more items on a “perfectionism” questionnaire than healthy controls, but another larger study failed to replicate this finding. Replication is the cornerstone of good science. If fail to observe the same finding across different studies run by different researchers, then it’s probably just chance variation.

Another major problem with this research is that it often confuses cause and effect. Would it surprise any of us to learn that people with a severe chronic illness might feel despair about their current situation or future possibilities, or experience anxiety about their health? No, of course not. These are most likely consequences of having an illness, not causes. Similarly, it seems unsurprising that people might try to make the most of good periods, sometimes without anticipating the cost they might pay later. This would seem to be a natural part of the illness experience, not a cause of it.

Mental health professionals have also been eager to promote their own brands of “treatment” for MECFS. As Marc Wilson notes, some studies make bold claims: one recent study claimed that therapy designed to change people’s beliefs about their illness and symptoms could cure more than a fifth of patients. A similar result was claimed for a treatment that encouraged them to gradually increase their activity levels. However, as we recently showed in an article published in BMC Psychology, these claims fail to withstand scrutiny. Some patients report feeling a little better after the treatments, but the effect is short-lived, and the treatments do not actually help them to return to work or to their other previous activities.

There is a place for psychology in the management of MECFS. Patients are struggling with terrible adversity, and are of grieving the loss of their past lives – their social lives, their work lives, their family lives, their pastimes. They are desperate for help and support. Psychologists can really make a difference - if we’re able to use a little more common sense, and above all, show a little more humility. After all, this isn’t all about us!

 

[JemPD]

Well done @Hutan great letter!

& @Carolyn Wilshire thank you for talking to your colleagues in this wonderful way. Great to see a psychologist making sense.
With your permission i would like to copy it & print it out to give to a psychotherapist i may meet with to see if they can give me some support through some difficult life circumstances I'm currently experiencing. It debunks a lot of the nonsense in a short piece & written by a fellow psych professional it will carry more weight than my own opinions. If she is interested I will obviously link her in to read your main studies & work, but as an intro it would be so helpful.

 

[rvallee]

Pretty taken aback by this article. By a colleague in my own department too. I've also sent a letter. Its way too long, but I'm hoping they might give me special dispensation as a fellow psychologist!

Another major problem with this research is that it often confuses cause and effect.

This is the TL;DR of problems with this research. The entire body of research exists in that space, mixed in with cherry-picking random correlation and declaring it causative. By their broken reasoning shivering is what makes us cold.

It's absurd that this point has to be made over and over again but thank you for taking the time to make it loud and clear to your, uh, logically-challenged colleagues.

 

[Ravn]

Pretty taken aback by this article. By a colleague in my own department too. I've also sent a letter. Its way too long, but I'm hoping they might give me special dispensation as a fellow psychologist!

Thank you. I do hope they print it. Ideally as a guest columnist in place of Wilson in the next edition

Or maybe it at least gives them the idea to do a bigger - and more informed! - feature on ME one day? Maybe David Tuller's visit later in the year could provide a suitable occasion?

 

[Hutan]

Great letter @Carolyn Wilshire. We in New Zealand are fortunate to have you here, embedded in the NZ psychology scene.

Or maybe it at least gives them the idea to do a bigger - and more informed! - feature on ME one day?

I hope that does happen. Even just a telling of the PACE story would be great, and it perfectly illustrates much bigger issues in psychology research.

 

[Ravn]

Particularly disappointing is that Wilson in previous columns expressed great concern - genuine I believe - for the mental welfare of young people constantly exposed to all sorts of pressures and messages of unattainable ideals.

Yet here he seems oblivious to the potentially damaging effect of his message that if you're ill with CFS it's because you're too perfectionistic or too depressed or too anxious or too all-or-nothing or just generally don't think right. He might argue he's talking about % risk increase but the message readers get is "you're all wrong as a person if you have CFS". How helpful is that going to be to a young person already struggling with serious illness?

Even if Wilson actually believes Moss-Morris' research conclusions to be valid (which would suggest that either he didn't actually read her article or that he doesn't understand methodology - and he definitely doesn't understand ME) - even if he did write in good-faith ignorance, it was still irresponsible to write the way he did.

 

[Ravn]

Great letter @Carolyn Wilshire. We in New Zealand are fortunate to have you here, embedded in the NZ psychology scene.

Or maybe it at least gives them the idea to do a bigger - and more informed! - feature on ME one day?

I hope that does happen. Even just a telling of the PACE story would be great, and it perfectly illustrates much bigger issues in psychology research.

My PEM must be lifting at last. At least I managed to write a letter to the Listener expressing my dismay at Wilson's piece and suggesting they contact @Carolyn Wilshire and @dave30th for a future feature to make up for Wilson's misstep.

My letter wasn't the sort to be published but more a letter of complaint crossed with a tip off for a story. I figured it was a good idea to approach the issue from different angles and since we already have two letters to the editor, thanks again @Hutan and @Carolyn Wilshire, I decided on a different tack.

Took all day but I got there, phew. And always feels good to achieve that first proper and completed task when emerging from PEM.

 

[Hutan]

Brilliant idea @Ravn. And good to hear the PEM is lifting.

 

[Gretel]

Just chiming in here - also as a psychologist . This kind of pop psychology that gets perpetuated, in my opinion discredits our profession. The two things that are most important to the profession are that we use science (evidence) to inform our practice and that we do no harm. No scientist should take information out of context and report it as if it has some merit.

 

[Inara]

For example, reviews of many studies show that people diagnosed with MS have consistently poorer outcomes if they not only feel more stressed, but also deal with their stress and condition through "maladaptive emotion-focused" coping strategies, such as wishful thinking or pretending it's not happening.

As with diabetes, MS or even asthma, there's reason to believe that how you think affects the way you experience CFS and, perhaps, even whether you develop it at all.

That's funny - and embarrassing for the author. But surely this needs to be viewed more differentially, like it's unhelpful to pretend it's not happening and helpful to pretend it's not happening. (Sarcasm)

 

[Ravn]

Welcome @Gretel. Good to have you here.

 

[Trish]

Hi @Gretel, welcome. It's good to have another psychologist here who talks sense!

 

[Carolyn Wilshire]

That's funny - and embarrassing for the author. But surely this needs to be viewed more differentially, like it's unhelpful to pretend it's not happening and helpful to pretend it's not happening. (Sarcasm)

Sooo... people with ME simultaneously catastrophise about what's happening and also pretend its not happening... they simultaneously lack perseverance and try way too hard... they simultaneously do too little exercise and overdo activities... these simultaneous paradoxical states are just doing my head in...

 

[Hoopoe]

It all makes sense! The CBT/GET model is a patient blaming device and it works very well: no patient is without blame in this model, because anything they do is wrong.

The solution for patients that do it wrong is of course CBT.