{"id":38463,"date":"2023-03-15T07:49:15","date_gmt":"2023-03-15T07:49:15","guid":{"rendered":"https:\/\/wames.org.uk\/cms-english\/?p=38463"},"modified":"2023-03-15T07:49:15","modified_gmt":"2023-03-15T07:49:15","slug":"research-symptom-based-clusters-sub-groups-in-me-cfs","status":"publish","type":"post","link":"https:\/\/wames.org.uk\/cms-english\/research-symptom-based-clusters-sub-groups-in-me-cfs\/","title":{"rendered":"Research: Symptom-based clusters (sub-groups) in ME\/CFS"},"content":{"rendered":"

Finding sub-groups in ME\/CFS<\/strong><\/h2>\n

 <\/p>\n

\"\"Prof Leonard Jason<\/a> worked with Dutch researchers to identify sub-groups of ME\/CFS patients by symptom clusters. They used Leonard’s DePaul Symptom Questionnaire<\/a> and data analysis software SOM<\/a>. 45 subgroups were identified, some small. The researchers admit there are limitations with the study but have shown that sub-typing is possible.<\/p>\n

“Classification of ME\/CFS patients according to severity and symptoms patterns might be useful to develop tailored treatment options. Future studies are needed to investigate the relation between the identified symptom clusters and clinically relevant outcomes in patients with ME\/CFS, including health-related quality of life and daily functioning.”<\/p>\n

Table 2<\/h3>\n
\n

DSQ-2 symptoms<\/p>\n<\/div>\n

\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n
<\/th>\nDutch database (n\u2009=\u2009337)<\/th>\nUS database (n\u2009=\u2009252)<\/th>\n<\/tr>\n
Composite score
\nMean (SD)<\/th>\n		Participants at 2\/2 threshold (%)<\/th>\nComposite score
\nMean (SD)<\/th>\n		Participants at 2\/2 threshold (%)<\/th>\n<\/tr>\n<\/thead>\n
Fatigue\/extreme tiredness<\/td>\n75.4 (17.5)<\/td>\n90.7<\/td>\n81.4 (15.1)<\/td>\n98.4<\/td>\n<\/tr>\n
Post-exertional malaise<\/td>\n<\/tr>\n
\u00a0Dead, heavy feeling after starting exercise<\/td>\n50.1 (26.9)<\/td>\n58.3<\/td>\n76.2 (24.7)<\/td>\n87.7<\/td>\n<\/tr>\n
\u00a0Next-day soreness or fatigue after everyday activities<\/td>\n66.6 (20.8)<\/td>\n80.7<\/td>\n75.3 (21.6)<\/td>\n90.9<\/td>\n<\/tr>\n
\u00a0Mentally tired after the slightest effort<\/td>\n61.7 (23.7)<\/td>\n72.8<\/td>\n68.2 (23.0)<\/td>\n86.1<\/td>\n<\/tr>\n
\u00a0Physically tired after minimum exercise<\/td>\n67.0 (21.7)<\/td>\n81.2<\/td>\n77.8 (20.6)<\/td>\n92.9<\/td>\n<\/tr>\n
\u00a0Physically drained or sick after mild activity<\/td>\n59.8 (22.8)<\/td>\n70.3<\/td>\n73.2 (22.5)<\/td>\n88.9<\/td>\n<\/tr>\n
\u00a0Muscle fatigue after mild physical activity<\/td>\n63.1 (25.7)<\/td>\n74.4<\/td>\n72.2 (26.1)<\/td>\n86.1<\/td>\n<\/tr>\n
\u00a0Worsening of symptoms after mild physical activity<\/td>\n67.7 (23.7)<\/td>\n78.5<\/td>\n78.8 (21.9)<\/td>\n92.9<\/td>\n<\/tr>\n
\u00a0Worsening of symptoms after mild mental activity<\/td>\n59.1 (25.9)<\/td>\n66.5<\/td>\n63.4 (27.0)<\/td>\n76.6<\/td>\n<\/tr>\n
\u00a0Difficulty reading (dyslexia) after mild physical or mental activity<\/td>\n41.2 (30.8)<\/td>\n40.6<\/td>\n44.6 (33.4)<\/td>\n49.2<\/td>\n<\/tr>\n
Sleep<\/td>\n<\/tr>\n
\u00a0Unrefreshing sleep<\/td>\n73.9 (22.3)<\/td>\n88.0<\/td>\n81.7 (19.1)<\/td>\n94.8<\/td>\n<\/tr>\n
\u00a0Need to nap daily<\/td>\n56.2 (32.3)<\/td>\n56.4<\/td>\n58.1 (30.0)<\/td>\n66.7<\/td>\n<\/tr>\n
\u00a0Problems falling asleep<\/td>\n47.4 (28.0)<\/td>\n49.9<\/td>\n55.9 (29.3)<\/td>\n63.9<\/td>\n<\/tr>\n
\u00a0Problems staying asleep<\/td>\n52.7 (28.6)<\/td>\n56.4<\/td>\n58.4 (30.5)<\/td>\n65.1<\/td>\n<\/tr>\n
\u00a0Waking up early in the morning (e.g. 3 AM)<\/td>\n43.2 (28.3)<\/td>\n43.1<\/td>\n48.9 (30.2)<\/td>\n49.6<\/td>\n<\/tr>\n
\u00a0Sleeping all day and staying awake all night<\/td>\n18.4 (22.8)<\/td>\n9.5<\/td>\n17.7 (27.2)<\/td>\n16.3<\/td>\n<\/tr>\n
\u00a0Daytime drowsiness<\/td>\n52.6 (26.9)<\/td>\n55.3<\/td>\n63.2 (26.9)<\/td>\n77.0<\/td>\n<\/tr>\n
Pain<\/td>\n<\/tr>\n
\u00a0Pain or aching in muscles<\/td>\n59.6 (24.8)<\/td>\n70.0<\/td>\n67.8 (26.0)<\/td>\n80.2<\/td>\n<\/tr>\n
\u00a0Joint pain<\/td>\n51.1 (29.9)<\/td>\n59.4<\/td>\n57.2 (32.9)<\/td>\n64.7<\/td>\n<\/tr>\n
\u00a0Eye pain<\/td>\n31.2 (24.6)<\/td>\n24.8<\/td>\n31.8 (28.8)<\/td>\n31.0<\/td>\n<\/tr>\n
\u00a0Chest pain<\/td>\n23.1 (21.8)<\/td>\n11.7<\/td>\n25.8 (25.7)<\/td>\n19.0<\/td>\n<\/tr>\n
\u00a0Bloating<\/td>\n38.2 (25.8)<\/td>\n37.6<\/td>\n47.1 (28.1)<\/td>\n50.4<\/td>\n<\/tr>\n
\u00a0Abdomen\/stomach pain<\/td>\n36.4 (23.2)<\/td>\n30.8<\/td>\n42.1 (27.7)<\/td>\n43.7<\/td>\n<\/tr>\n
\u00a0Headaches<\/td>\n24.8 (23.8)<\/td>\n42.8<\/td>\n50.5 (26.3)<\/td>\n55.2<\/td>\n<\/tr>\n
\u00a0Aching of the eyes or behind the eyes<\/td>\n29.0 (24.6)<\/td>\n17.4<\/td>\n36.8 (29.8)<\/td>\n36.9<\/td>\n<\/tr>\n
\u00a0Sensitivity to pain<\/td>\n27.0 (30.0)<\/td>\n24.0<\/td>\n51.3 (32.9)<\/td>\n59.5<\/td>\n<\/tr>\n
\u00a0Myofascial pain<\/td>\n15.7 (25.7)<\/td>\n12.5<\/td>\n26.3 (34.0)<\/td>\n30.2<\/td>\n<\/tr>\n
Neurocognitive<\/td>\n<\/tr>\n
\u00a0Muscle twitches<\/td>\n26.9 (22.3)<\/td>\n16.6<\/td>\n34.4 (25.5)<\/td>\n29.8<\/td>\n<\/tr>\n
\u00a0Muscle weakness<\/td>\n44.7 (27.4)<\/td>\n45.2<\/td>\n63.5 (27.2)<\/td>\n74.6<\/td>\n<\/tr>\n
\u00a0Sensitivity to noise<\/td>\n54.7 (26.8)<\/td>\n57.8<\/td>\n61.0 (26.8)<\/td>\n69.8<\/td>\n<\/tr>\n
\u00a0Sensitivity to bright lights<\/td>\n47.3 (28.4)<\/td>\n46.0<\/td>\n53.2 (29.0)<\/td>\n55.6<\/td>\n<\/tr>\n
\u00a0Problems remembering things<\/td>\n52.2 (22.5)<\/td>\n58.0<\/td>\n67.9 (24.1)<\/td>\n84.5<\/td>\n<\/tr>\n
\u00a0Difficulty paying attention for a long period of time<\/td>\n60.8 (24.0)<\/td>\n73.3<\/td>\n70.4 (24.3)<\/td>\n86.1<\/td>\n<\/tr>\n
\u00a0Difficulty finding the right word to say, or expressing thoughts<\/td>\n48.5 (22.4)<\/td>\n50.7<\/td>\n61.1 (24.7)<\/td>\n75.4<\/td>\n<\/tr>\n
\u00a0Difficulty understanding things<\/td>\n33.3 (21.5)<\/td>\n23.2<\/td>\n48.5 (25.1)<\/td>\n55.2<\/td>\n<\/tr>\n
\u00a0Only able to focus on one thing at a time<\/td>\n57.1 (25.2)<\/td>\n67.6<\/td>\n64.9 (25.1)<\/td>\n78.6<\/td>\n<\/tr>\n
\u00a0Unable to focus vision<\/td>\n21.5 (23.6)<\/td>\n13.6<\/td>\n35.1 (27.4)<\/td>\n31.7<\/td>\n<\/tr>\n
\u00a0Unable to focus attention<\/td>\n34.6 (22.9)<\/td>\n27.2<\/td>\n50.9 (25.1)<\/td>\n63.1<\/td>\n<\/tr>\n
\u00a0Loss of depth perception<\/td>\n18.5 (25.6)<\/td>\n11.7<\/td>\n24.0 (29.5)<\/td>\n21.4<\/td>\n<\/tr>\n
\u00a0Slowness of thought<\/td>\n47.3 (26.4)<\/td>\n50.7<\/td>\n56.9 (25.5)<\/td>\n71.4<\/td>\n<\/tr>\n
\u00a0Absent-mindedness or forgetfulness<\/td>\n44.0 (22.6)<\/td>\n43.3<\/td>\n60.7 (24.5)<\/td>\n78.6<\/td>\n<\/tr>\n
\u00a0Feeling disoriented<\/td>\n20.2 (22.7)<\/td>\n11.2<\/td>\n35.9 (25.3)<\/td>\n29.4<\/td>\n<\/tr>\n
\u00a0Slowed speech<\/td>\n21.3 (22.7)<\/td>\n12.0<\/td>\n32.6 (27.1)<\/td>\n31.3<\/td>\n<\/tr>\n
\u00a0Poor coordination<\/td>\n30.0 (25.1)<\/td>\n21.3<\/td>\n46.2 (28.6)<\/td>\n52.8<\/td>\n<\/tr>\n
Autonomic<\/td>\n<\/tr>\n
\u00a0Bladder problems<\/td>\n22.1 (28.0)<\/td>\n18.3<\/td>\n35.6 (32.5)<\/td>\n34.5<\/td>\n<\/tr>\n
\u00a0Urinary urgency<\/td>\n34.5 (27.6)<\/td>\n31.3<\/td>\n39.7 (31.2)<\/td>\n42.9<\/td>\n<\/tr>\n
\u00a0Waking up at night to urinate<\/td>\n51.2 (29.2)<\/td>\n49.6<\/td>\n45.7 (32.0)<\/td>\n46.4<\/td>\n<\/tr>\n
\u00a0Irritable bowel problems<\/td>\n39.8 (29.7)<\/td>\n42.2<\/td>\n49.1 (32.7)<\/td>\n55.6<\/td>\n<\/tr>\n
\u00a0Nausea<\/td>\n28.4 (21.5)<\/td>\n16.6<\/td>\n33.8 (26.9)<\/td>\n30.6<\/td>\n<\/tr>\n
\u00a0Feeling unsteady on feet<\/td>\n34.2 (24.1)<\/td>\n23.7<\/td>\n44.0 (28.8)<\/td>\n46.4<\/td>\n<\/tr>\n
\u00a0Shortness of breath or trouble catching breath<\/td>\n27.9 (22.2)<\/td>\n17.7<\/td>\n39.8 (28.0)<\/td>\n37.7<\/td>\n<\/tr>\n
\u00a0Dizziness or fainting<\/td>\n31.3 (22.2)<\/td>\n19.6<\/td>\n42.1 (27.6)<\/td>\n43.7<\/td>\n<\/tr>\n
\u00a0Irregular heart beats<\/td>\n27.8 (23.0)<\/td>\n16.1<\/td>\n30.4 (26.8)<\/td>\n28.6<\/td>\n<\/tr>\n
\u00a0Heart beats quickly after standing<\/td>\n31.3 (28.9)<\/td>\n27.0<\/td>\n43.8 (32.6)<\/td>\n46.0<\/td>\n<\/tr>\n
\u00a0Blurred or tunnel vision after standing<\/td>\n21.9 (26.4)<\/td>\n16.6<\/td>\n30.5 (31.2)<\/td>\n29.0<\/td>\n<\/tr>\n
\u00a0Graying or blacking out after standing<\/td>\n32.5 (24.2)<\/td>\n23.2<\/td>\n22.7 (28.1)<\/td>\n17.5<\/td>\n<\/tr>\n
\u00a0Inability to tolerate an upright position<\/td>\n27.3 (27.9)<\/td>\n18.3<\/td>\n46.7 (34.3)<\/td>\n52.0<\/td>\n<\/tr>\n
Neuroendocrine<\/td>\n<\/tr>\n
\u00a0Losing weight without trying<\/td>\n7.1 (16.7)<\/td>\n4.1<\/td>\n13.2 (21.9)<\/td>\n7.5<\/td>\n<\/tr>\n
\u00a0Gaining weight without trying<\/td>\n18.3 (25.8)<\/td>\n13.9<\/td>\n36.3 (36.6)<\/td>\n41.3<\/td>\n<\/tr>\n
\u00a0Lack of appetite<\/td>\n19.3 (21.4)<\/td>\n11.4<\/td>\n30.3 (25.8)<\/td>\n25.4<\/td>\n<\/tr>\n
\u00a0Sweating hands<\/td>\n12.9 (21.2)<\/td>\n8.2<\/td>\n16.6 (25.7)<\/td>\n13.1<\/td>\n<\/tr>\n
\u00a0Night sweats<\/td>\n33.0 (27.3)<\/td>\n29.2<\/td>\n36.1 (30.5)<\/td>\n31.3<\/td>\n<\/tr>\n
\u00a0Cold limbs<\/td>\n51.9 (26.4)<\/td>\n58.3<\/td>\n46.9 (29.9)<\/td>\n48.4<\/td>\n<\/tr>\n
\u00a0Feeling chills or shivers<\/td>\n31.7 (23.1)<\/td>\n21.5<\/td>\n34.0 (26.3)<\/td>\n32.9<\/td>\n<\/tr>\n
\u00a0Feeling hot or cold for no reason<\/td>\n42.4 (24.8)<\/td>\n38.7<\/td>\n51.7 (26.9)<\/td>\n61.1<\/td>\n<\/tr>\n
\u00a0Felling like you have a high temperature<\/td>\n29.6 (22.6)<\/td>\n19.3<\/td>\n33.0 (27.2)<\/td>\n29.4<\/td>\n<\/tr>\n
\u00a0Feeling like you have a low temperature<\/td>\n20.7 (25.5)<\/td>\n15.8<\/td>\n24.7 (26.7)<\/td>\n21.8<\/td>\n<\/tr>\n
\u00a0Alcohol intolerance<\/td>\n15.1 (30.8)<\/td>\n14.2<\/td>\n40.1 (36.9)<\/td>\n34.1<\/td>\n<\/tr>\n
\u00a0Intolerance to extremes of temperature<\/td>\n42.3 (35.0)<\/td>\n41.7<\/td>\n64.9 (31.1)<\/td>\n72.2<\/td>\n<\/tr>\n
\u00a0Fluctuations in temperature throughout the day<\/td>\n30.3 (28.5)<\/td>\n26.4<\/td>\n45.2 (31.8)<\/td>\n48.0<\/td>\n<\/tr>\n
Immune<\/td>\n<\/tr>\n
\u00a0Sore throat<\/td>\n30.1 (20.4)<\/td>\n17.4<\/td>\n37.3 (25.7)<\/td>\n32.9<\/td>\n<\/tr>\n
\u00a0Tender\/sore lymph nodes<\/td>\n23.4 (22.9)<\/td>\n14.4<\/td>\n37.5 (30.5)<\/td>\n36.5<\/td>\n<\/tr>\n
\u00a0Fever<\/td>\n9.2 (16.9)<\/td>\n1.6<\/td>\n16.1 (22.1)<\/td>\n9.9<\/td>\n<\/tr>\n
\u00a0Flu-like symptoms<\/td>\n36.1 (23.7)<\/td>\n28.3<\/td>\n51.8 (27.3)<\/td>\n57.1<\/td>\n<\/tr>\n
\u00a0Sensitivity to smells, food, medications, or chemicals<\/td>\n25.6 (27.1)<\/td>\n19.1<\/td>\n45.0 (32.7)<\/td>\n46.8<\/td>\n<\/tr>\n
\u00a0Viral infections with prolonged recovery periods<\/td>\n16.9 (24.7)<\/td>\n9.5<\/td>\n35.0 (32.7)<\/td>\n32.5<\/td>\n<\/tr>\n
\u00a0Sinus infections<\/td>\n15.2 (24.0)<\/td>\n10.4<\/td>\n21.9 (26.2)<\/td>\n19.4<\/td>\n<\/tr>\n
Others<\/td>\n<\/tr>\n
\u00a0Sensitivity to mold<\/td>\n18.3 (28.9)<\/td>\n16.6<\/td>\n27.2 (36.3)<\/td>\n30.6<\/td>\n<\/tr>\n
\u00a0Sensitivity to vibration<\/td>\n22.9 (29.9)<\/td>\n18.3<\/td>\n30.6 (35.0)<\/td>\n32.9<\/td>\n<\/tr>\n<\/tbody>\n<\/table>\n<\/div>\n

Symptom-based clusters in people with ME\/CFS: an illustration of clinical variety in a cross-sectional cohort<\/a>, by Anouk W Vaes, Maarten Van Herck, Qichen Deng, Jeannet M Delbressine, Leonard A Jason, Martijn A Spruit in<\/span> J Transl Med<\/em>. 2023 Feb 10;21(1):112 [doi: 10.1186\/s12967-023-03946-6]<\/h3>\n

 <\/p>\n

Research abstract<\/strong><\/h3>\n

Background: <\/strong><\/p>\n

Myalgic encephalomyelitis (ME)\/chronic fatigue syndrome\u00a0(CFS) is a complex, heterogenous disease. It has been suggested that subgroups of people with ME\/CFS exist, displaying a specific cluster of symptoms. Investigating symptom-based clusters may provide a better understanding of ME\/CFS. Therefore, this study aimed to identify clusters in people with ME\/CFS based on the frequency and severity of symptoms.<\/p>\n

Methods: <\/strong><\/p>\n

Members of the Dutch ME\/CFS Foundation<\/a> completed an online version of the DePaul Symptom Questionnaire version 2<\/a>. Self-organizing maps<\/a> (SOM) were used to generate symptom-based clusters using severity and frequency scores of the 79 measured symptoms. An extra dataset (n = 252) was used to assess the reproducibility of the symptom-based clusters.<\/p>\n

Results<\/strong>:<\/p>\n

Data of 337 participants were analyzed (82% female; median\u00a0(IQR) age: 55 (44-63) years). 45 clusters were identified, of which 13 clusters included \u2265 10 patients. Fatigue<\/a> and PEM<\/a> were reported across all of the symptom-based clusters, but the clusters were defined by a distinct pattern of symptom severity and frequency, as well as differences in clinical characteristics. 11% of the patients could not be classified into one of the 13 largest clusters. Applying the trained SOM to validation sample, resulted in a similar symptom pattern compared the Dutch dataset.<\/p>\n

Conclusion: <\/strong><\/p>\n

This study demonstrated that in ME\/CFS there are subgroups of patients displaying a similar pattern of symptoms. These symptom-based clusters were confirmed in an independent ME\/CFS sample.\u00a0Classification of ME\/CFS patients according to severity and symptom patterns might be useful to develop tailored treatment options.<\/p>\n","protected":false},"excerpt":{"rendered":"

Finding sub-groups in ME\/CFS   Prof Leonard Jason worked with Dutch researchers to identify sub-groups of ME\/CFS patients by symptom clusters. They used Leonard’s DePaul Symptom Questionnaire and data analysis software SOM. 45 subgroups were identified, some small. The researchers … Continue reading →<\/span><\/a><\/p>\n","protected":false},"author":2,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"jetpack_post_was_ever_published":false,"_jetpack_newsletter_access":"","_jetpack_dont_email_post_to_subs":false,"_jetpack_newsletter_tier_id":0,"_jetpack_memberships_contains_paywalled_content":false,"_jetpack_memberships_contains_paid_content":false,"footnotes":"","jetpack_publicize_message":"","jetpack_publicize_feature_enabled":true,"jetpack_social_post_already_shared":true,"jetpack_social_options":{"image_generator_settings":{"template":"highway","default_image_id":0,"font":"","enabled":false},"version":2}},"categories":[1],"tags":[7481,7478,7480,7477,2241,7479,7476,7475,3210,7474],"class_list":["post-38463","post","type-post","status-publish","format-standard","hentry","category-news","tag-anouk-w-vaes","tag-jeannet-m-delbressine","tag-maarten-van-herck","tag-martijn-a-spruit","tag-prof-leonard-jason","tag-qichen-deng","tag-self-organizing-maps","tag-som-software","tag-sub-groups","tag-symptom-clusters"],"jetpack_publicize_connections":[],"jetpack_featured_media_url":"","jetpack_sharing_enabled":true,"jetpack_shortlink":"https:\/\/wp.me\/p5qkYK-a0n","_links":{"self":[{"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/posts\/38463","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/comments?post=38463"}],"version-history":[{"count":3,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/posts\/38463\/revisions"}],"predecessor-version":[{"id":38670,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/posts\/38463\/revisions\/38670"}],"wp:attachment":[{"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/media?parent=38463"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/categories?post=38463"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/tags?post=38463"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}