When Scientists Forget to Science.

An Inquiring Mind by Ginny Smith

Science is a way of finding out about the world that might not be perfect, but is better than other ways.

It relies on carefully controlled experiments, and the collection of data. It’s one of the first things we are taught. Make sure your experiment is a fair test. Only vary one thing at a time. And repeat it- you can’t learn anything from doing something once. Pretty simple, right? It seems not.

Recently, an article was published by Paul Garner, Professor of Infectious Diseases at Liverpool School of Tropical Medicine, which, it seems to me, didn’t stick to these rules of good science. Garner fell ill with Covid in March, and subsequently developed Long Covid. Since then he has been writing about his experiences in the British Medical Journal. In a recent post , Garner writes that he has recovered fully. This is great news- when someone has been suffering for 9 months, of course I want them to get better. But the way he has written about his experiences has left me both sad and angry.

Long Covid isn’t well understood, but it seems there are a few different types of condition people can be left with after recovering from the acute symptoms of the virus. And one of these syndromes is incredibly familiar to me. Patients report fatigue like nothing they have felt before, muscle aches, brain fog, and, most importantly, symptoms that get worse when they exert themselves. These are some of the many symptoms I have lived with since coming down with a virus in 2009. In the aftermath, I was diagnosed with Post-viral fatigue syndrome (PVFS). 6 months later, it was ‘upgraded’ to Chronic Fatigue Syndrome (a.k.a Myalgic Encephalomyelitis (M.E)). M.E. is a devastating illness. I have only been mildly affected, but it still changed my life entirely. And there are others who are house-bound, bed-bound, or even living in complete isolation, unable to tolerate light or sound. And we don’t yet know what causes it- although research is starting to trickle in, suggesting something is stopping our cells from producing energy efficiently[i][ii].

An important point here is that not everyone who gets Post Viral Fatigue Syndrome develops M.E. In fact, many people recover, as Garner has done, within the first year. There is no good evidence as to why this is, but Garner writes that he has cracked the case, based on his incredibly “scientific” sample of one. His turning point, he writes, was when he:

“…learnt that I could change the symptoms I was experiencing with my brain, by retraining the bodily reactions with my conscious thoughts, feelings, and behaviour….I suddenly believed I would recover completely… I avoided reading stories about illness and discussing symptoms, research or treatments by dropping off the Facebook groups with other patients. I spent time seeking joy, happiness, humour, laughter, and overcame my fear of exercise” (from Paul Garner: on his recovery from long covid – The BMJ)

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I am all for the power of the brain. It is something I write about all the time. But it is hurtful to imply that those of us who have suffered debilitating symptoms for years do so because we weren’t good enough at positive thinking. It is also absurdly unscientific. And I think that if this piece had better covered the evidence, it would have told a different story. Because studies show CBT (cognitive behavioural therapy, which aims to change thought patterns) might help some people with M.E. manage their symptoms, but it doesn’t make us better[iii].

Even more worryingly, he advises exercise – something that many believe can cause damage to people with M.E. A large patient survey found that Graded Exercise Therapy made the majority of those who were put through it worse, rather than better[iv]. While surveys aren’t the pinnacle of scientific studies, and can be open to bias, I believe it is unethical for Garner’s piece to ignore these findings completely, and imply that his personal experience means he knows better.

In fact, based on flaws in the original study that claimed to prove CBT and Graded Exercise Therapy were effective treatments for CFS/ME[v], NICE have now changed their advice on the condition, stressing that exercise should not be recommended as a treatment[vi]. Despite this, Garner’s article states that his recovery was thanks to exercise:

“I got out of bed and went to Sefton Park to join a military fitness session. It was fabulous, and the exercise pushed the aches and fatigue aside. I slept well and felt better the following day”

I am so glad Garner is able to get back to activity he loves. I wish I could – Before I fell ill, I was dancing for 6 hours a week, alongside a demanding university degree and an active social life. But I also wish he could have seen me, in the early days of my illness, barely able to stand, or speak, after trying the yoga class everyone kept suggesting might cure me.  Now, I can manage the occasional dance class, if I limit my activity for the days either side of it, but that is something that would be well out of reach for most people with M.E.

It’s not just that the advice in his article unscientific, but it could also be dangerous. There may be people with Long Covid who listen to him, and push their bodies too far, making themselves worse. I don’t know what the best course of treatment is for Long Covid. No-one does. But for those with symptoms similar to Post Viral Fatigue Syndrome or M.E./C.F.S, I would urge you to listen to the evidence. To listen to your body. To pace yourselves. That doesn’t mean avoiding activity entirely, but staying within your energy envelope- not doing something that will make you feel worse.

My hope, and the hope of many people with M.E. is that the surge in interest in post viral syndromes triggered by Covid will bring an increase in funding, and an increase in research. And that this might, eventually, lead to a treatment. But until then I beg sufferers to remember that just because someone is a researcher, and they are writing in a medical journal, doesn’t mean they are doing good science. Look for the evidence, and remember, the plural of anecdote is not data.

[i] Metabolic features of chronic fatigue syndrome Robert K. Naviaux et al
[ii] Mandarano et al. “Myalgic encephalomyelitis/chronic fatigue syndrome patients exhibit altered T cell metabolism and cytokine associations,” Journal of Clinical Investigation. December 12, 2019
[iii] Cognitive behavioural therapy for myalgic encephalomyelitis/chronic fatigue syndrome is not effective. Re-analysis of a Cochrane review Mark Vink, Alexandra Vink-Niese Health Psychol Open. 2019 Jan-Jun; 6(1): 2055102919840614. Published online 2019 May 2. doi: 10.1177/2055102919840614
[iv] https://www.meaction.net/2019/04/03/get-and-cbt-are-not-safe-for-me-summary-of-survey-results/
[v]Wilshire, C.E., Kindlon, T., Courtney, R. et al. Rethinking the treatment of chronic fatigue syndrome—a reanalysis and evaluation of findings from a recent major trial of graded exercise and CBT. BMC Psychol 6, 6 (2018). https://doi.org/10.1186/s40359-018-0218-3
[vi] https://www.nice.org.uk/news/article/nice-draft-guidance-addresses-the-continuing-debate-about-the-best-approach-to-the-diagnosis-and-management-of-me-cfs

Ginny Smith is a science presenter and writer. A Natural Sciences and Psychology graduate of Cambridge, Ginny performs science shows all over the world and presents a wide range of science content for the likes of the Cosmic Shambles Network and the Naked Scientists. She is the co-author of three DK Publishing science books and her first major solo work, Overloaded, will be published by Bloomsbury in 2021. She is @GinnyFBSmith on Twitter.

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