Pasinei nokuti iwe unonzi iyo isingagumi kuneta muviri, myalgic encephalomyelitis, ME / CFS, kana CFIDS, chirwere ichi chinodikanwa kutsvakurudza zvirwere zviri nani uye kuongororwa pamwe chete nekusimudzirwa kwevanhu nekugamuchirwa. Masangano ekutsvakurudza ari pakati pezvinangwa izvi, asi vane rubatsiro kubva kune mamwe masangano anokosha anokosha, zvakare. Masangano akadaro, akanyorwa pasi apa, anoshingairira kusimudzira kutsvakurudza nekuziva nechinangwa chekubatsira avo vane chirwere ichi chinogona kuparadza kuti vararame hupenyu huri nani.
International Association for Chronic Chronic Fatigue Syndrome / Myalgic Encephalomyelitis
I International Association for Chronic Chronic Fatigue Syndrome / Myalgic Encephalomyelitis (IACFS / ME) inotsanangura kuti iboka guru rezvepasi rose rehutano hwezvehutano rakatsaurirwa kutarisirwa nekutsvakurudza kwevanhu vane ME / CFS. Inokurudzira kuwedzera hurumende mari, zvipo zvinopa mari, uye inokamba misangano. Uyewo, inobudisa mabhuku akawanda egore uye inotsigira pepanhau rinotariswa nevezera rako Kusvuta: Biomedicine, Health, uye Behavior .
IACFS / ME inopa hutano kuvanachiremba navamwe vanopa iyo vanovapa kuti vawane pepanhau ravo pamwe chete nemari yakaderedzwa kumisangano yehurumende. Kune vasiri vashandi vezvokurapa, vatsigiri vatsigiro pamwe chete nezvipo zvakafanana zviripo.
Zvinhu zvinokurumidza kuIACFS / ME:
- Yakagadzwa: 1990 (saIACFS; ME yakawedzerwa muna 2005)
- Charity mamiriro: Oklahoma sangano risina purofiti, 501 (c) 3 isiri pfuma
- Nzvimbo: Bethesda, Maryland
Mission statement:
Basa reIACFS / ME nderokukurudzira, kukurudzira, uye kurongedza kupatsanurana kwemashoko akaenzana neCFS, ME, uye fibromyalgia (FM) kutsvakurudza, kutarisira varwere, uye kurapa. Mukuwedzera, IACFS / ME nguva nenguva inongororai kutsvakurudza ikozvino, kurapa mabhuku, uye mharidzo yemushumo kuitira kuti vabatsire masayendisiti, vanachiremba, uye varwere. IACFS / ME inotungamirirawo uye / kana inopindira munharaunda dzenharaunda, dzenyika, uye dzenyika dzakawanda dzesayenzi kuitira kuti dzikurudzire uye dziongorore kutsvakurudza mutsva uye kukurudzira kushandiswa kwekutsvakurudza uye mabasa ekubatsirana kufambira mberi kwesayenzi uye ruzivo rwechirwere nezvezvirwere izvi.
Zvinyorwa kwauri:
- Nhengo dzehutano uye dzisiri vadzidzisi
- Mashoko uye maonero ekutsvakurudza
- Kunyorwa kwezviitiko uye zviziviso pamusoro pekutsvakurudza uye mari
Nzira dzekugovera:
- Ipa mari paIndaneti
- Ipa mari kuburikidza ne mail
I National CFIDS Foundation
CFIDS yakanga iri zita rinowanzozivikanwa nekuda kwechiitiko ichi ME / CFS isati yave yakakurumbira. Inomirira "kusagadzikana kusingaperi uye immune dysfunction syndrome."
Zvinangwa zveNational CFIDS Foundation ndezvekubatsira kutsvakurudza ruzivo rwechikonzero nekurapa kwechirwere ichi, uye pakupedzisira, kubatsira kubatsira kuwana mushonga. Inoshandawo kupa ruzivo, dzidzo, uye kutsigirwa kuvanhu vane ME / CFS.
Maererano newebsite yedu, sangano iri rinopfuura kunze kwekutsvakurudza mari nekutsvaga mune zvakawanikwa kare zvisina kugoverwa kana kutsvaga vatsvakurudzi vane ruzivo rwakakosha uye kubhadhara basa ravo munzvimbo idzi. Inoshandiswa zvachose nevaya vanozvipira uye, pamwe chete ne ME / CFS, inosimudzira tsvakurudzo mumamiriro ezvinhu akafanana, kusanganisira Gulf War zvirwere uye multiple chemical sensitivity.
Zvichimbidzika kuNational CFIDS Foundation:
- Yakatangwa: 1997
- Charity mamiriro: 501 (c) 3 isiri pfuma
- Nzvimbo: Needham, Massachusettes
Zvinyorwa kwauri:
- Unhengo dzisingadhuri dzinosanganisira mbiri dzegore negore
- Informational articles
- Chirangaridzo
- Rwendo rwemaJapan remagariro ekurapa
Nzira dzekugovera:
- Ipa mari paIndaneti
- Iva nhengo
ME-CFS Knowledge Center
I ME-CFS Knowledge Center inopa ruzivo rwakasiyana-siyana rwehuwandu nemari kuburikidza newebsite yedu nechinangwa chekubatsira vanhu vasina maMe / CFS chete, asiwo zvirwere zvakabatana zve fibromyalgia neGulf War zvirwere.
Zvichimbidzika pamusoro pe ME-CFS Knowledge Center:
- Charity mamiriro: 501 (c) 3 isiri pfuma
- Nzvimbo: Loxahatchee, Florida
Mission statement:
Chinangwa chedu ndechekupa avo vanotambudzika nekuneta kukuru, myalgic encephalomyelitis / chronic fatigue syndrome (ME / CFS), fibromyalgia (FM), uye zvirwere zvakarongeka nemhando dzakasiyana siyana kubva munyika yose iyo inogona kutarisana nezvinhu izvi zvakaoma, uye zvose kazhinji, mamiriro ezvinhu asingazivikanwi.
Zvinyorwa kwauri:
- Informational articles
- Kunyoresa mapoka emapoka munyika yose
- Kunyorwa kwezviwanikwa zvinosanganisira vashandi vezvehutano uye varairi vanobva munyika yose
- Yakanyanyisa mabhidhiyo emavhidhiyo
Nzira dzekugovera:
- Ipa mari kuburikidza nePayPal
- Tenga muchitoro chendaneti
Sarudza ME / CFS Initiative
Sangano reSolve ME / CFS Initiative (SMCI) rinotaura kuti "rinoita kuti kukurumidza kuwanikwa kwehutano hwakachengeteka uye hunobudirira uye huchitsvaka kuwedzera kukurira kwemari kune chirwere." Inochengetedza biobank uye chirwere chekuregera chinobatsira vatori vechikamu nevatsvakurudzi pamwe kuti vatsvakurudze zviri nyore uye zvishoma kudhura kune vanotsvakurudza pamusoro pekugadzira data kubva kune zvidzidzo zvinowanikwa kuongororo dzakawanda.
Zvinangwa zve SMCI ndezvokufambisa mberi tsvakurudzo pakuonekwa kwechimbichimbi chechirwere ichi, kuti zvive nani kuongororwa, uye kuita mishonga inobatsira. Sangano rinonyanya kunyanya kuongorora bioenergetics, kudzivirira uye kuvhiringidza, uye neuroendocrine biology. Uye, inowanzopa mari kuvatsvakurudzi vanoshanda munzvimbo idzi.
Zvinhu zvinokurumidza pa SMCI:
- Yakagadzwa: 1987
- Charity mamiriro: 501 (c) 3 isiri pfuma
- Nzvimbo: Los Angeles, California
Mission statement:
Chinangwa chedu ndechekuita kuti ME / CFS inzwisise zvakanyanya, kuongororwa, uye kurapwa. Tichaita izvi kuburikidza nekukurudzira kubatanidzwa, kutsvaga-kutsvaga kutsvaga kunotarisirwa kutanga kuwanikwa, chinangwa chokuongororwa, uye kurapa kwakanaka kwe ME / CFS kuburikidza nekuwedzera kwevanhu, yega, uye yekutengeswa kwekutsvaga.
Zvinyorwa kwauri:
- Zvinyorwa zvemashoko zvevarwere, shamwari neshamwari, vatsvakurudzi, nevatsigiri vehutano
- Rwokutsvakurudza ruzivo
- Webinars
- Iva nechokuita nekutsigira
- Newsletter
Nzira dzekugovera:
- Ipa mari paIndaneti kana nekutumira
Simmaron Research
Simmaron Tsvakurudzo inotarisa pane zvidzidzo zvitsva-zvidzidzo zvishomanana zvinoratidza kuti dzimwe mitsara yekutsvakurudza inofanirwa kutsvaga-iyo inogona kuva iyo inokwezva masangano ezvidzidzo, hurumende mari, uye kufarira kubva kumakambani emishonga kune dzimwe nyaya.
Uyezve, Simmaron anochengetedza purogiramu yezvidzidzo zvehupenyu kune vatsvakurudzi uyewo ruzivo rwevanhu vanopfuura 1 000 vane ME / CFS. Inobatanidzwawo ne ME / CFS vatsvakurudzi munyika yose.
Zvichimbidzika paSimmaron Research:
- Charity mamiriro: 501 (c) 3 isiri pfuma
- Nzvimbo: Incline Village, Nevada
Mission Statement:
Kuitisa zvidzidzo zvepayiriya zvinotora basa rinokosha mukuongororwa, kurapwa, uye kunzwisisa kweCFS / ME nezvimwe zvirwere zvisingagadziriswi.
Zvinyorwa kwauri:
- Zvinyorwa pamusoro pe ME / CFS kubva kusangano nevanopa mazano
- Tsvakurudzo-yakatumira blog
Nzira dzekugovera:
- Ipa mari paIndaneti
Regional & International Organisations
Hondo yeMES / CFS masangano inoshumira mharaunda yemunharaunda kumativi eUnited States uye kumativi ose enyika. Kuti uwane ruzivo rwakawanda rwavo, shanyira Sangano re Chronic Chronic Fatigue Syndrome uye Myalgic Encephalomyelitis.
Shoko Rinobva
Kupa mipiro kumasangano akadai sezvipo izvi zvinogona kuva chipo chinoshamisa kune vanhu muhupenyu hwako vane ME / CFS kana kuti varwisana nechirwere ichi munguva yehupenyu hwavo. Mipiro yezvipo inogona kunyorwa kuda kwenyu. Iwe usati wapa mari kune chero rubatsiro, zvisinei, ona kuti iwe unotsvakurudza iyo kuti uone kuti chipo chako chiri kushandiswa kuti waida sei.
Kana iwe uri pakati pevakasununguka vanogona kupa, urongwa urwu hunogona kukubatsira kuwana nzvimbo inokosha yekutsigira. Kune avo vasingakwanisi kupa mari, unogona kuwana dzimwe nzira kubatsira kana kukurudzira mapoka aya. Chero nzira, unogona kukwanisa kudzidza kubva kwavari uye kubatsirwa kubva pane zvavanopa.