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: 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").
 * 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


 * 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.

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

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.

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.