Category talk:Chronic fatigue syndrome

Why are Chronic fatigue syndrome and myalgic encephalomyelitis separate categories?

These categories need some cleanup. Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is considered to be one clinical entity, according to doctors and scientists, as evidenced by official sources. Most patient groups and patients also use the terms as two different names for the same disorder.

From the CDC: "Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a serious, long-term illness that affects many body systems."

From NICE: "Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS) is a long-term condition that affects about 250,000 people in the UK."

From the New York Department of Health: "Myalgic Encephalomyelitis (ME), commonly referred to as chronic fatigue syndrome or ME/CFS, is a widely misunderstood disease."

From MEAction, a patient advocacy group: "Myalgic encephalomyelitis (ME) or myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), is a complex chronic disease that presents with symptoms in multiple body systems."

From Solve ME/CFS Initiative, a research nonprofit: "Myalgic encephalomyelitis (ME), formerly known as chronic fatigue syndrome (CFS), is a chronic, complex, neuroimmune disease that profoundly limits the health and productivity of patients and is often triggered by an infection."

Some people considered ME and CFS to be different in the past, but they're now a very small minority. Modern diagnostic criteria, current guidance, and the great majority of scientific papers treat them as one. You can see, however, that there's some debate over which name is better. The combined term ME/CFS is most common in formal settings like academic and government sources.

Therefore, I propose merging Category:Myalgic encephalomyelitis and Category:Chronic fatigue syndrome, with possible exceptions for historical sources that do not treat them as one. I have no strong opinion on the name of the merged category, but Myalgic encephalomyelitis-Chronic fatigue syndrome is alright if it's not too wordy. Can categories be merged and how is this done? The Quirky Kitty (talk) 02:47, 9 September 2022 (UTC)

 Oppose None of the sources above has any authority with regard to this matter. The only official authority is the international classification of diseases of the WHO, which has separate mentions for ME and CFS, and none for ME/CFS. This is binding for all member countries. The latter is just a fashionable, unfortunately confusing name for CFS definitions that emphasize post-exertional malaise, which isn't even a symptom of ME. The CDC also has ME and CFS separate in their classification, by the way. The scientific authorities are the articles where these diagnoses were introduced, like Wickman (1905) for ME (then called superior polio) and Fukuda (1994) for CFS (replacing Holmes (1988)); the latest handbook is Hyde (2000), 'Understanding Myalgic Encephalomyelitis' which also explains the difference between these terms. The only patient organization with some authority is GAME (Global Advocates for ME), of which I happen to be the chair. I have published multiple times on the differences between ME and CFS, while your sources never have. Summarizing, ME is a specific vascular brain disorder of enteroviral cause. CFS is a research diagnosis to select patients for studies into unexplained fatigue and malaise. To diagnose ME, a SPECT scan is the most straightforward way, but PET, fMRI, NIRS, qEEG can also be used. None of these show any inflammation, vascular injury or viral infection for CFS patients, nor do CFS patients have pain as a major symptom. There are also several recent studies showing this decisively. I hope this helps. Don't change anything without consensus. Cheers, Guido den Broeder (talk) 12:00, 9 September 2022 (UTC)

In addition, let me point out that this is Commons, not en:Wikipedia. We have to adequately provide for projects with articles about ME, too. Guido den Broeder (talk) 13:07, 9 September 2022 (UTC)

"None of the sources above has any authority with regard to this matter. The only official authority is the international classification of diseases of the WHO, which has separate mentions for ME and CFS, and none for ME/CFS. This is binding for all member countries."

There seems to be two arguments here: 1) The ICD is so authoritative is overrules all other sources, and 2) The ICD considers ME and CFS to be different.

First, I don't believe the ICD is the most authoritative source when it comes to whether two medical terms reflect the same syndrome. At the very best, the ICD is a highly reputable source to be considered along with other sources of the same caliber, like national public health institutions and academic secondary sources. However, I would hesitate to use the ICD as the sole source for answering this question, because its main goal is to categorize illnesses for billing and stastistical purposes rather than analyze medical facts like this in detail. Nor would I consider the ICD universally binding, because after all, many countries have their own versions.

Second, it's not even true that the ICD treats ME and CFS differently. DX Revision Watch discusses this at length. Chronic fatigue syndrome is in the alphabetical list of conditions and redirects to G93.3, the code for ME. This is true in both the 2016 and 2019 revisions of the ICD-10. The ICD-10 2016 alphabetical index can be downloaded and anyone can verify that page 604 (610 in your PDF viewer) says that Syndrome, fatigue, chronic has the same code as ME. Looking up chronic fatigue syndrome in the ICD-10 2019 browser yields the same result--redirection to the code for ME.

"The latter is just a fashionable, unfortunately confusing name for CFS definitions that emphasize post-exertional malaise, which isn't even a symptom of ME."

The modern 2015 IOM and 2021 NICE guideline criteria treat ME/CFS as the same condition and consider PEM mandatory. The most recent criteria that use only the term ME would be the International Consensus Criteria, which requires post-exertional neuroimmune exhaustion, markedly similar to PEM.

"The CDC also has ME and CFS separate in their classification, by the way. The scientific authorities are the articles where these diagnoses were introduced, like Wickman (1905) for ME (then called superior polio) and Fukuda (1994) for CFS (replacing Holmes (1988)); the latest handbook is Hyde (2000), 'Understanding Myalgic Encephalomyelitis' which also explains the difference between these terms."

There doesn't seem to be any recent material from the CDC treating the conditions as separate. The current CDC website uses one set of symptoms and diagnostic criteria for both, which to me, is a strong implication that the CDC considers ME and CFS two terms for the same thing. All the sources your specifically reference are over 20 years old. I never said ME and CFS were never considered separate diseases, just that it's the current scientific consensus.

"The only patient organization with some authority is GAME (Global Advocates for ME), of which I happen to be the chair."

I'm not sure what you mean by authority here. There are other, much larger, patient advocate organizations out there.

"Summarizing, ME is a specific vascular brain disorder of enteroviral cause. CFS is a research diagnosis to select patients for studies into unexplained fatigue and malaise. To diagnose ME, a SPECT scan is the most straightforward way, but PET, fMRI, NIRS, qEEG can also be used. None of these show any inflammation, vascular injury or viral infection for CFS patients, nor do CFS patients have pain as a major symptom. There are also several recent studies showing this decisively. I hope this helps."

These ideas appear to be, at best, unproven hypotheses different from the guidance of government bodies and secondary academic sources. The Quirky Kitty (talk) 04:48, 10 September 2022 (UTC)

Separately, I would like to discuss my recategorization of several images. They were in Category:Myalgic encephalomyelitis and I added them to Category:Chronic fatigue syndrome without removing them from the ME category. For the sake of transparency, here are all the images I recategorized. Each one has some sort of connection to the term "Chronic fatigue syndrome":

File:F3.medium.gif

File:Representative_parametric_PET_images_of_11C-(R)-PK11195_binding_in_CFS.ME_patient_(A)_and_healthy_control_(B).jpg

File:Statistical_parametric_maps_of_BPND_of_11C-(R)-PK11195_in_CFS.ME_patients_and_healthy_controls.gif

From the description: "Relationships between 11C-(R)-PK11195 BPND and neuropsychologic symptoms in CFS/ME patients." These images come from a paper that treats "CFS/ME", another term for "ME/CFS", as one concept.

File:Petition_presentation_by_M.E_Support_in_Glamorgan_16-9-2014_(15234526046).jpg

File:Petition_presentation_by_M.E_Support_in_Glamorgan_16-9-2014_(15254432771).jpg

File:Petition_presentation_by_M.E_Support_in_Glamorgan_16-9-2014_(15257136072).jpg

File:Petition presentation by M.E Support in Glamorgan 16-9-2014 (15257530195).jpg

File:Petition_presentation_by_M.E_Support_in_Glamorgan.jpg

These photos all deal with ME/CFS, or if you consider them separate, both ME and CFS. The poster in the background makes it clear they're protecting for both: "Our Vision: To promote and protect the physical and mental health of sufferers of ME (Myalgic encephalomyelitis), CFS (Chronic fatigue syndrome) and Fibromyalgia..." The Quirky Kitty (talk) 05:04, 10 September 2022 (UTC)

• There is only one ICD and it's used by all member countries. They signed for it at the WHO assemblee. A few countries like the US subsequently produce a more detailed version because they have more detailed billing. These don't replace the ICD itself.
• The ICD comes with instructions, explaining that the list of terms is not part of the actual classification and doesn't mean anything more than 'if you encountered that term, we suggest to look there'.
• CFS was introduced by the CDC in 1988 to deliberately hide a large outbreak of ME (see among others investigative journalist Hillary Johnson (2022), 'The Why', as well as Hyde (2020) who was present at the Holmes conference where this was decided). So in 1992 it made sense to point to ME as back then the majority of the patients misdiagnosed with CFS had ME. This is no longer the case, and hasn't been for ages. The definition of CFS was changed significantly in 1994 and the number of CFS diagnoses went through the roof, unrelated to any outbreak of ME. There are still ME patients intially getting misdiagnosed with CFS, but the vast majority of CFS patients don't have ME. They have Lyme, diabetes, Hashimoto, depression, MS, or any of a large number of other diseases and conditions. For that reason, CFS now has its own entry. While CFS is not a disease and always a misdiagnosis, there are still statistics and bills for it.
• ME/CFS, while equally not a disease, has been proposed to get its own entry as well separate from both ME and CFS in the ICD-10-CM and patients with that diagnosis have a right to guidance; the NICE guideline simply includes a mention that this is not a validated diagnosis. The NICE guideline for 'ME/CFS' says nothing about ME, it's solely intended for this newly recognized large group of patients. It was estimated in 2015 that of all people satisfying SEID criteria, only 2% had ME (Jason; Stichting ME Research); now this would be 1% as the numbers doubled because of longcovid.
• The ICD classification is the result of years-long deliberation among experts from all over the world, including myself.
• The ICD-10-CM of the CDC gets updated every quarter. I have participated in these discussions as well.
• What I'm saying about ME and CFS is not unproven, it is in their very definitions and explained in the sources that I mentioned and quite a few more - primary, secondary and tertiary - containing all the proof you could ever want. There are zero sources that come to a different conclusion. You can actually see some of the differences listed in the few images that are (therefore) correctly categorized for both ME and CFS.
• The size of patient organizations should be considered relative to their target group. There are easily 20 times more people satisfying CFS or ME/CFS criteria than there are ME patients. You also can't compare the size of local organizations of patients to the global organizations of patient experts (including scientists (like myself) and doctors that are patients). There are precious few international patient experts for ME because the disease is so very severe (whereas CFS or ME/CFS is often mild). But precious few is still hundreds.
• In summary, categorizing ME files as CFS makes just as much sense as categorizing anxiety files or cancer files as CFS would. I can also imagine that categorizing photos of ME petitioners as CFS would be considered an insult by the people portrayed. We take such things into account, the people in these images have rights.

Guido den Broeder (talk) 12:11, 10 September 2022 (UTC)

So far about the background. We don't need to discuss that further, it's something for the projects. From Commons' point of view, we can't merge these topics because they have different parent categories, nor do we want to because there is no need. What you could do instead from a technical perspective is to propose an additional category named 'ME v CFS debate' or similar where both ME and CFS are parent categories, as well as Category:Medical controversies. Guido den Broeder (talk) 13:41, 10 September 2022 (UTC)