In this series, I dig a little deeper into the meaning of psychology-related terms… but not this week. Instead, we’ll take a look at ME/CFS, and why it’s absolutely not all in someone’s head.
The National Institutes of Health describes ME/CFS as “a debilitating disease that lacks a universally accepted case definition, cause, diagnosis, or treatment.” Science isn’t sure yet what causes myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Unfortunately, when the medical profession don’t know what causes something, some of them are inclined to think it’s psychosomatic, as in it’s all in people’s heads. All in your head and that kind of nonsense is something I like to talk about, so that’s why this is making an appearance in this series.
According to the US Centers for Disease Control (CDC), there are three core symptoms that are required for diagnosis:
- significant drop in ability to do activities, lasting at least six months
- post-exertional malaise: significant, often completely incapacitating, energy crash that occurs around 12-48 hours after activities involving mental or physical exertion that would not typically warrant anywhere near such a reaction
- sleep does not restore energy, and often there are difficulties with sleep
Diagnosis also requires one of cognitive impairment or worsening of symptoms when standing/sitting upright. In addition, there are a variety of other symptoms that may be experienced, with pain being particularly common.
The CDC identifies several potential causative factors:
- onset may be triggered by an infection; in particular, Epstein-Barr virus, Ross River virus, and Coxiella burnetti have been linked to ME/CFS
- changes in immune system functioning, in particular involving natural killer cells, changes in T cell activation, or chronic inflammatory cytokine production
- changes in the functioning of the HPA axis, which links the brain and the adrenal glands, and regulates the production of the stress hormone cortisol
- a combination of genetic and environmental factors play a role
Taking a quick browse through Google Scholar, problems related to the immune system and autoimmunity seem to be a frequent theme. Dysfunction in the mitochondria (the powerhouses of cells) have also been looked at, and a potential link has been suggested between ME/CFS and chronic COVID infection, and also between ME/CFS and prolonged ICU patients.
NICE guideline in the UK
In the UK, the last National Institute for Health and Care Excellence (NICE) guideline for ME/CFSS was released in 2007. In November 2020, NICE released an updated draft guideline for consultation. The symptom criteria for diagnosis they identified are pretty much the same as the CDC’s.
I found this bit from the principles of care particularly interesting:
“Recognise that people with ME/CFS may have experienced prejudice and disbelief and feel stigmatised by people who do not understand their illness. Take into account:
- how this could affect the person with ME/CFS
- that they may have lost trust in health and social services and be hesitant about involving them.”
In the section on access to care, the guideline tells providers “Do not discharge someone who misses appointments because their symptoms have worsened.” It adds that providers should “Be aware that people with ME/CFS are unlikely to be seen at their worst.” The unspoken but implied message is “haul your head out of your arse.”
There is no cure or even any real treatment. Instead, the focus is on managing the impact of the condition and dealing with symptoms. The NICE draft guideline clearly warns that telling people to just go exercise more will make the condition worse.
Cognitive behavioural therapy (CBT) is sometimes recommended for ME/CFS, but the authors of a rather delightful strongly worded paper in the journal Neuro Endocrinology Letters called bullshit on that. They wrote that not only does CBT not work for these patients, it makes things worse. They wrote, “We conclude that it is unethical to treat patients with ME/CFS with ineffective, non-evidence-based and potentially harmful ‘rehabilitation therapies’, such as CBT/[Graded Exercise Therapy].”
ME/CFS is a prime example of the harm that comes from doctors deciding that things are all in patients’ heads. Fibromyalgia is another such example. Perhaps what it will take for doctors to get it through their heads is if researchers finally find out what the cause is, and what the effective treatments are. I don’t think the medical profession in general is great with things that they can’t understand the cause of, because it means they don’t know what to do about it, and they don’t like feeling impotent, so that can lead to blaming the patient.
Have you heard of ME/CFS before, perhaps as chronic fatigue syndrome? If so, did any of the messaging that you were exposed to leave the impression it wasn’t a “real” condition?
- Centers for Disease Control and Prevention: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
- National Institute for Health and Care Excellence (NICE): ME/CFS draft guideline for consultation
- National Institutes of Health: About ME/CFS
- Twisk, F. N., & Maes, M. (2009). A review on cognitive behavorial therapy (CBT) and graded exercise therapy (GET) in myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS): CBT/GET is not only ineffective and not evidence-based, but also potentially harmful for many patients with ME/CFS. Neuro Endocrinology Letters, 30(3), 284-299.
The Psychology Corner has an overview of terms covered in the What Is… series, along with a collection of scientifically validated psychological tests.