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 members of 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.
Symptoms
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 either 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.
Possible causes
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) has 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.”
Treatment
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?
References
- 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.
Ashley L. Peterson
BScPharm BSN MPN
Ashley is a former mental health nurse and pharmacist and the author of four books.
My oldest friend had ME/CFS after a bout of glandular fever when we were teenagers. He was one of the lucky minority where he did eventually recover.
I definitely agree that doctors who don’t have solutions on tap are more likely to victim-blame.
That’s good your friend was able to recover.
I wonder if the medical professional will ever evolve to the point that they stop victim-blaming. I’m inclined to doubt it.
Especially if you’re female and they can blame the uterus.
And its’ tendency to wander throughout the body. Get some smelling salts and chase it back down to the groin where it belongs!
😂😂😂
There is a very interesting new scientific theory about CFS explained in the book, ‘The Origins of Health and Disease’ by Michael Hyland. https://www.waterstones.com/book/the-origins-of-health-and-disease/michael-e-hyland/9780521719704
I found this very interesting, because I know so many people who have been diagnosed with CFS. All have had often frustrating experiences regarding treatment and silly things said to them which discouraged them deeply.
That’s such a shame.
Superb content! I have multiple sclerosis. Thusly, I empathize with those who suffer from fatigue (regardless of the cause).
🧡🧡🧡🧡🧡
I can definitely see how there would be a lot of similarity there!
You’ve given a great outline here. I’m glad NICE, and a few other bodies, now recognise that specialists advocating for more exercise are in fact just making a bad situation worse in many cases. It’s still seen as an umbrella diagnosis in society and some specialists don’t even believe in it, much like fibromyalgia, but I also think there’s a lot more awareness than there was even 5 years ago.
I was diagnosed with chronic fatigue and fibromyalgia, and it seemed I developed a host of various weird things after my 2015 surgery. In my case it seems to be like an allergic reaction to plastic in my body (autoimmune reaction to a foreign body), and the metal screws in my back led to some of the nerve damage. I’ve known of others who’ve had physical trauma, like a car accident, and others who’ve had a virus and were left with ME/CFS. There’s talk now of ‘long covid’ leaving people with something similar to ME, too. xx
As far as medicine has progressed, there’s so much more to learn about how all these kinds of things can tie in together.
That’s annoying when easy answers stubbornly refuse to present themselves.
Doctors thinking stuff is psychosomatic… this is why C’s super 1 in a million rare disease took 4 years to confirm even with a really good neurologist, because other doctors didn’t bloody believe C or the neurologist. Years of needless suffering.
Horrible.
One of the hospitals who also misdiagnosed her DID as psychosis still keeps that on her records. So that played a part in the delay of diagnosing the rare auto immune condition despite her having had symptoms even as a teenager (when they knew it was Guillain-Barre syndrome).
Wish she could file for something to get the money she needs, but sadly she can’t.
And her court case for historical abuse was closed because of the psychosis diagnosis. We know people who were abused by psych ward staff but blowing the whistle didn’t do anything because “psychosis”. Until it all exploded in the news recently when they found 1 of the predatory psych nurses.
I feel mental health stigma is ridiculous. Psychosomatic shouldn’t be the first thing medical staff jump to. And they didn’t do their damn job because while her condition is 1 in a million so diagnosis could take longer, they didn’t even do due diligence. Then not believing one of the best neurologists in the country even after various test results… ugh!!
It’s disturbing how much voluntary ignorance there is out there. And trying to fight back against a system that’s against you all the way ranges somewhere from utterly exhausting to completely impossible.
Yeah! Not sure what C, me and friends will do since various agencies in the system are shuffling her around in circular ways but, I dunno, we’ll figure something out ❤