Insights into Psychology

What Is… ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue)

symptoms of ME/CFS - chronic fatigue syndrome

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.

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 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) 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.”

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?

Sources

The Psychology Corner: Insights into psychology and psychological tests

The Psychology Corner has an overview of terms covered in the What Is… series, along with a collection of scientifically validated psychological tests.

25 thoughts on “What Is… ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue)”

  1. 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.

    1. 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.

  2. Very interesting. I saw an episode of Lifetime’s “Strong Medicine” once about how the doctor to the free-clinic patients, Dr. Lou, wanted the doctor to the rich women to write a report for disability stating that one of Dr. Lou’s patients had fibromyalgia. (Dr. Lou felt the letter would have more clout from the rich people’s doctor.) But the doctor to the rich women said, “Eh, fibromyalgia doesn’t exist.” Dr. Lou was frustrated and agitated about this, so when her patient wound up in the ER in agonizing pain since her meds weren’t helping, Dr. Lou “disappeared”, which forced the other doctor to show up and treat her. Thus, the other doctor realized that fibromyalgia is freakin’ real from how much pain the patient was in, and she agreed to write the medical report for disability.

    And I love the two-part episode of “The Golden Girls” where Dorothy gets CFS. At the end of the episode she tells off the doctor who assured her it was all in her head and that there was nothing wrong with her. That scene is gorgeous. They’re at a restaurant, and the doctor keeps trying to get rid of Dorothy, but then the doctor’s date/wife makes a face at him and forces him to listen to what Dorothy’s saying. “Why can’t you just admit when you don’t know something instead of making your patients feel horrible about themselves?” Beautiful episodes.

    Anyway, I’m glad I could contribute the pop culture angle. (How much TV do I watch?!)

    I know I have some form of fatigue, and my best guess is that it’s interwoven with the schizophrenia. [Shrug.] Without my alertness aid, I need 11 to 13 hours of sleep a night, and woebetide if I don’t get it. With the alertness aid, I’m up to 9 to 11 hours, which is great, but I still often need a nap. It’s all good, though.

    Great blog post! I never knew that CFS was also known as Myalgic Encephalomyelitis! Also, I love the snail. Poor little fellow! 😀 He looks a bit rundown!

  3. 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.

  4. Superb content! I have multiple sclerosis. Thusly, I empathize with those who suffer from fatigue (regardless of the cause).

    🧡🧡🧡🧡🧡

  5. 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

  6. Good read for me! I’ve been working hard lately to determine the cause of my low energy level. Thank God after reading your post it doesn’t sound like I have ME or CFS. There’re (I don’t think I’ve ever written that conjunction) probably several causes for my low energy and I’m trying to tackle them all at once since focusing on one at a time doesn’t seem to make enough of a difference to say whether something is a cause or not.
    I’ll be writing more about it in my own “weekly wrapup” I’m trying to regularly post, but the short version is I had a whole panel of nutritional and hormonal tests and cut down on caffeine significantly. The tests only showed I was low in vitamin D and folic acid so I have supplements for those, but that hasn’t seemed to help so far (it’s only been a week). I was hoping I’d have low testosterone or a thyroid problem because that would be at least a reason, but both were perfect. It’s a bit depressing that this just might be my life from now on

  7. 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.

      1. 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!!

        1. 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.

          1. 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 ❤

Leave a Reply