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DecodeME

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Andy Devereux-Cooke; Sian Leary; Simon J. McGrath; Emma Northwood; Anna Redshaw; Charles Shepherd; Pippa Stacey; Claire Tripp; Jim Wilson; Margaret Mar; Danielle Boobyer; Sam Bromiley; Sonya Chowdhury; Claire Dransfield; Mohammed Almas; Øyvind Almelid; David Buchanan; Diana Garcia; John Ireland;
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The study announced receipt of funding in June 2020, and recruitment was opened on 12 September 2022. In January 2023, the team wrote that over 17,000 patients had completed the survey, of which almost 9,000 were sent collection kits. On 2 May 2023 they announced that over 10,000 people had been
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ME/CFS is a chronic medical condition that often causes significant disability, and whose cause is unknown. Genetic studies of ME/CFS have been done before, but without significant findings. The authors of a 2022 study suggested that research with more participants is needed to discover
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In June 2023, DecodeME made changes to their data analysis methodology that allowed them to invite additional participants to give DNA. Recruitment is expected to close on 15 November. Recruitment for the study closed on 15 November 2023.
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The investigators hope the study's findings will inform further research into the pathology of ME/CFS and potential treatments. They also hope that discovering a genetic connection will help dispel some of the stigma around ME/CFS.
128:. There will also be a survey to collect data on symptoms. Results are expected to be published by September 2024. If new risk factors are identified, it may enable further research into potential causes, tests, or treatments. 236:
Hajdarevic, Riad; Lande, Asgeir; Mehlsen, Jesper; Rydland, Anne; Sosa, Daisy D.; Strand, Elin B.; Mella, Olav; Pociot, Flemming; Fluge, Øystein; Lie, Benedicte A.; Viken, Marte K. (2022-05-01).
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DecodeME is a genome-wide association study with a case-control design. Expected recruitment is at least 20,000 patients whose onset was not associated with COVID-19, and 5,000 people with
47:. With a planned recruitment of 25,000 patients, it is expected to be the largest such study to date. Recruitment closed on 15 November 2023 and results are expected in 2024. 303: 809: 533:
Shona M. Kerr; Isabel Lewis; Ewan McDowall; Malgorzata Migdal; Phil Murray; David Perry; Chris P. Ponting; Veronique Vitart; Jareth C. Wolfe (19 Jul 2022).
671: 662: 83:. The researchers have also worked with Forward ME and a group of patient advocates, the latter of which contributed to the design of the study. 80: 212: 151: 213:"Recommendations | Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management | Guidance | NICE" 355: 76: 819: 238:"Genetic association study in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) identifies several potential risk loci" 180: 655: 21:
This article is about the ongoing study whether ME/CFS has a genetic risk factor. For the defunct genome testing service, see
648: 535:"DecodeME: community recruitment for a large genetics study of myalgic encephalomyelitis / chronic fatigue syndrome" 584: 737: 685: 331: 783: 508: 40: 383: 459: 304:"How will you ensure that you have the support of the community of people with ME/CFS for this project?" 804: 742: 814: 640: 773: 57: 44: 778: 695: 68: 433: 531: 608: 8: 409: 561: 534: 285: 63:
DecodeME aims to perform such a large study. It is being run as a partnership between
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as chief investigator, and with £3.2 million in funding from the UK's
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at home and control samples will be obtained from the
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will be collected by sending patients kits to collect
181:"Chronic fatigue syndrome: Search for genetic clues" 810:Myalgic encephalomyelitis/chronic fatigue syndrome 672:Myalgic encephalomyelitis/chronic fatigue syndrome 796: 585:"How long will the GWAS study take to complete?" 509:"Closing participant recruitment - Thank you!" 656: 178: 663: 649: 460:"Inviting More Participants to Donate DNA" 329: 560: 550: 263: 253: 506: 434:"We've reached 10,000 DNA participants!" 27: 356:"Major study hopes to tackle ME stigma" 43:searching for genetic risk factors for 797: 81:National Institute for Health Research 644: 457: 407: 112:who were diagnosed with ME/CFS after 378: 376: 325: 323: 174: 172: 146: 144: 142: 140: 13: 14: 831: 629: 373: 330:Carmichael, Hannah (2022-09-11). 320: 169: 137: 71:'s MRC Human Genetics Unit, with 601: 577: 525: 500: 476: 451: 426: 820:Research in the United Kingdom 401: 348: 296: 229: 205: 103: 1: 784:Whittemore Peterson Institute 507:Connolly, Anne (2023-11-15). 242:Brain, Behavior, and Immunity 131: 50: 41:genome-wide association study 179:O'Neill, Sean (2020-06-23). 7: 10: 836: 552:10.1186/s12883-022-02763-6 458:Lewis, Issy (2023-06-16). 410:"What We Achieved in 2022" 408:Lewis, Issy (2023-01-31). 96:asked to provide samples. 90: 20: 751: 725: 709: 678: 255:10.1016/j.bbi.2022.03.010 58:statistically significant 32:The study's official logo 774:Open Medicine Foundation 77:Medical Research Council 779:Solve ME/CFS Initiative 696:Post-exertional malaise 69:University of Edinburgh 16:Genetic study on ME/CFS 33: 686:Clinical descriptions 31: 726:Society and history 34: 805:Clinical research 792: 791: 613:Happiful Magazine 827: 815:Genetics studies 743:Notable patients 665: 658: 651: 642: 641: 624: 623: 621: 620: 605: 599: 598: 596: 595: 581: 575: 574: 564: 554: 529: 523: 522: 520: 519: 504: 498: 497: 495: 494: 480: 474: 473: 471: 470: 455: 449: 448: 446: 445: 430: 424: 423: 421: 420: 405: 399: 398: 396: 395: 380: 371: 370: 368: 367: 352: 346: 345: 343: 342: 336:Evening Standard 327: 318: 317: 315: 314: 300: 294: 293: 267: 257: 233: 227: 226: 224: 223: 209: 203: 202: 200: 199: 176: 167: 166: 164: 163: 148: 835: 834: 830: 829: 828: 826: 825: 824: 795: 794: 793: 788: 747: 721: 705: 674: 669: 632: 627: 618: 616: 607: 606: 602: 593: 591: 583: 582: 578: 530: 526: 517: 515: 505: 501: 492: 490: 482: 481: 477: 468: 466: 456: 452: 443: 441: 432: 431: 427: 418: 416: 406: 402: 393: 391: 388:The Independent 382: 381: 374: 365: 363: 360:The Independent 354: 353: 349: 340: 338: 328: 321: 312: 310: 302: 301: 297: 234: 230: 221: 219: 217:www.nice.org.uk 211: 210: 206: 197: 195: 177: 170: 161: 159: 150: 149: 138: 134: 106: 93: 53: 26: 23:deCODE genetics 17: 12: 11: 5: 833: 823: 822: 817: 812: 807: 790: 789: 787: 786: 781: 776: 771: 769:ME Research UK 766: 764:ME Association 761: 755: 753: 749: 748: 746: 745: 740: 735: 729: 727: 723: 722: 720: 719: 713: 711: 707: 706: 704: 703: 698: 693: 688: 682: 680: 679:Medical issues 676: 675: 668: 667: 660: 653: 645: 639: 638: 631: 630:External links 628: 626: 625: 600: 576: 524: 499: 475: 450: 425: 400: 372: 347: 319: 295: 228: 204: 168: 135: 133: 130: 105: 102: 92: 89: 52: 49: 39:is an ongoing 15: 9: 6: 4: 3: 2: 832: 821: 818: 816: 813: 811: 808: 806: 803: 802: 800: 785: 782: 780: 777: 775: 772: 770: 767: 765: 762: 760: 759:Action for ME 757: 756: 754: 752:Organizations 750: 744: 741: 739: 738:Controversies 736: 734: 731: 730: 728: 724: 718: 715: 714: 712: 708: 702: 699: 697: 694: 692: 689: 687: 684: 683: 681: 677: 673: 666: 661: 659: 654: 652: 647: 646: 643: 637: 636:Official Site 634: 633: 614: 610: 604: 590: 586: 580: 572: 568: 563: 558: 553: 548: 544: 540: 539:BMC Neurology 536: 528: 514: 510: 503: 489: 485: 479: 465: 461: 454: 439: 435: 429: 415: 411: 404: 389: 385: 379: 377: 361: 357: 351: 337: 333: 326: 324: 309: 305: 299: 291: 287: 283: 279: 275: 271: 266: 261: 256: 251: 247: 243: 239: 232: 218: 214: 208: 194: 190: 186: 182: 175: 173: 157: 153: 147: 145: 143: 141: 136: 129: 127: 123: 119: 115: 111: 101: 97: 88: 84: 82: 78: 74: 73:Chris Ponting 70: 66: 65:Action for ME 61: 60:differences. 59: 48: 46: 42: 38: 30: 24: 19: 716: 617:. 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Index

deCODE genetics
Logo saying DecodeME: The ME/CFS Study, with ME in a green circle
genome-wide association study
ME/CFS
statistically significant
Action for ME
University of Edinburgh
Chris Ponting
Medical Research Council
National Institute for Health Research
long COVID
COVID-19
DNA
saliva
UK Biobank




"UK to launch world's largest genetic study into chronic fatigue syndrome"


"Chronic fatigue syndrome: Search for genetic clues"
ISSN
0140-0460
"Recommendations | Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management | Guidance | NICE"
"Genetic association study in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) identifies several potential risk loci"
doi
10.1016/j.bbi.2022.03.010
hdl

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