User:Femke/MECFS move

Move request

• 1a: Chronic fatigue syndrome → Myalgic encephalomyelitis/chronic fatigue syndrome
• 1b: Chronic fatigue syndrome → ME/CFS
• 2: Status quo

I was surprised to see this article not named myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) when I was working with the long COVID literature. The title guideline for medical articles (WP:MEDTITLE) states: The article title should be the scientific or recognised medical name that is most commonly used in recent, high-quality, English-language medical sources. It turns out, ME/CFS is also the common name in our top sources specific to ME/CFS:

• NICE in the UK use myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome in their 2021 clinical guidelines.
• IQWiG in Germany use ME/CFS in their 2023 clinical guidance (the German report has the name full-out)
• In the US, the Institute of Medicine use myalgic encephalomyelitis/chronic fatigue syndrome in their 2015 report. The CDC uses this too, as well as the NIH

The name CFS seems to be used mostly still in alternative medicine and by a subset of psychologists (see my further source analysis). That name has fallen out of use due to concerns with neutrality (so related to WP:NPOVNAME), as simplistic (it refers to a single unspecific symptom of ME/CFS: fatigue) and trivialising (as it often triggers the response "everybody is tired").

• Support 1a as proposer, 1b as second choice. The compromise name myalgic encephalomyelitis/chronic fatigue syndrome is the standard name in high-quality MEDRS source. It has seen further cementing in 2023, since the last requested move. Given the possible confusion between chronic fatigue (a symptom), and "chronic fatigue syndrome", ME/CFS is a more precise name. We did a source analysis a few months back, in which most sources indicated POV problems with CFS.

Further source analysis

Recent national guidelines, or closest to it I could find

• The Canadian Institutes of Health Research seem to be the odd one out: they seem to use ME rather than ME/CFS. Couldn't find a clinical guideline.
• The 2020 Belgian clinical guidelines use myalgic encephalomyelitis/chronic fatigue syndrome in their English-language summary
• I can't find the current Dutch clinical guidelines, but the announcement of the development of the 2026 guidelines uses ME/CVS

PubMed reviews

Frequency of names for ME/CFS in reviews published between Jan 8, 2023 and Jan 7, 2024

I did a PubMed search of reviews published in 2023. There weer 83 search results in PubMed of the following query, limiting results to reviews, systemic reviews and meta-analysis.

(((("chronic fatigue syndrome") OR ("ME/CFS")) OR ("systemic exertional intolerance disease")) OR ("Myalgic encephalomyelitis")) OR ("Myalgic encephalomyopathy").

I tallied the names in the title given. 33 of them used a name for ME/CFS in the title. SEID was unused. CFS, used in 21% of papers, was popular under alternative medicine articles and in psychology/psychiatry papers. General articles and biomedical papers use the compromise name ME/CFS in various formats. Only one article used ME on its own. The unabbreviated name was slightly more common than the abbreviated name. —Femke 🐦 (talk) 15:14, 14 January 2024 (UTC)

What about accuracy?

The policy on naming only talks about accuracy once (in WP:COMMONNAME). It says: Ambiguous or inaccurate names for the article subject, as determined in reliable sources, are often avoided even though they may be more frequently used by reliable sources.. Both CFS and ME have been criticised as not that accurate (see § What do sourcing say about the naming question), and CFS also has some issues around ambiguity (as it's confused with chronic fatigue).

One of the key sticking points of using the name myalgic encephalomyelitis is the last bit, the inflammation of the brain and spinal cord. ME is the historical name of the disease, and was given mainly based on symptoms and similarity with poliomyelitis. It has been known for a long time that severe inflammation isn't present, like you would see in viral encephalitis. Techniques have only recently come in common use to study low to moderate neuroinflammation, especially the PET techniques. There are few lines of evidence that I'm aware of:

1. PET scans (older ones somewhat non-specific, newer direct evidence not yet reviewed)
2. Inflammatory cytokines (probably too fickle and variable to interpret)
3. MRS scans: People with ME/CFS have hightened lactate and cholines in their brains and CFS fluid. (this is "well-validated for neuroinflammation", or "known to be potential causes or biomarkers of neuroinflammation and mitochondrial oxidative stress")
4. There are problems with neurovascular coupling in ME/CFS (specifically, the blood oxygenation level-dependent response), which can cause neuroinflammation.
5. Tentative evidence of neuroinflammation in conditions that may share the same pathophysiology (Long COVID and Fibromyalgia). The level of evidence is not per se greater in these conditions as far as I'm aware.

Overall, two not great choices. That's probably why the research community has switched to a compromise name.

What do sources say about the naming question?

Copying over from what I wrote on talk when we rewrote the naming subsection:

Currently, the naming section is written with mostly older sourcing. I think some of the themes in that section are described slightly differently in newer sourcing. Given the wide view on naming here on Wikipedia, as judged by the April requested move, I wanted to do a thorough analysis of what current sources say and get opinions before I changed the article. I've limited my search to sources for the last 10 years, but generally cite the more recent papers.

Source	Date	Quote
NICE	2021	Many people with ME/CFS consider the name 'chronic fatigue syndrome' too broad, simplistic and judgemental. For consistency, the abbreviation ME/CFS is used in this guideline.
IOM	2015	Surveys conducted by ME/CFS advocacy organizations have found that 85 to 92 percent of respondents want that name [chronic fatigue syndrome] to be changed (Jason et al., 2004). Their most common complaints are that this name is stigmatizing and trivializing, causing people not to take the disorder serious.
BMJ best practice	2021	Many patients consider the name chronic fatigue syndrome overly simplistic, as well as pejorative. The term myalgic encephalomyelitis is also problematic given the limited evidence for brain inflammation.
EUROMENE	2021	The term ME, an abbreviation for myalgic encephalomyelitis, in particular, is unsatisfactory as it suggests that pathological process underlying the disease is an inflammatory process affecting the brain. There is lack of convincing evidence for this.…The term CFS, short for chronic fatigue syndrome, is equally unsatisfactory, as it implies that fatigue is the main symptom of the illness, whereas in fact its clinical features are far more wide-ranging.
Bhatia et al	2023	Following the naming of CFS by the CDC, many patients felt the name trivialized the seriousness of their illness and compounded the stigma they already faced in dealings with skeptical medical professionals .. Hybrid terms such as ME/CFS retain the naming component which describes a common symptom and is also well known in scientific and public spheres (CFS), while also including a name that respects the history of the illness and does not trivialize the medical nature of the patient experience (ME). It should be noted that despite increased worldwide popularity in usage, some have been critical of the name ME/CFS, as activists have indicated that it can refer to what are the two separate illnesses
Noor et al	2021	CFS alone tends to oversimplify the complexity of the disease and undermine the constellation of symptoms experienced by patients. Thus, more recent merging of CFS and ME, also known as ME/CFS has been described to better encompass the complexity of the disease and its neuroinflammatory components.
Jason et all	2016	Only 22% of the US sample and 6% of the International sample liked or definitely liked the illness label CFS.
Brown et al	2016	96% .. disliked or strongly disliked the label CFS to the 1% who liked the name. .. Previous research suggests that the label CFS is harmful to the patient community as it negatively influences the opinions of healthcare providers that are responsible for providing care.
Jason et al (now cited, behind paywall)	2007	Patients believed that the term CFS trivialized the seriousness of this illness, as the illness is typified by many severe symptoms in addition to fatigue, and fatigue is a common symptom experienced by many otherwise healthy individuals in the general population.
Jason and Johnson	2020	Since these recommendations have been made [for a name change to SEID], the proposed name change has not been widely adopted by the scientific or patient community .. Patients have been dissatisfied with the term CFS because focusing on just one symptom of the illness tends to downplay its overall debilitating nature. Several patient polls that were completed after the IOM name change recommendations found overall negative attitudes toward SEID

Overall, sources discuss how CFS is simplistic and may downplay the disease. They also discuss patient dissatisfaction with the old name, and and indicate that some patient regard it as pejorative or derogatory.