Kungakhathaliseki ukuthi uyibiza ngokuthi i-syndrome engapheliyo, i-myalgic encephalomyelitis, i-ME / CFS, noma i-CFIDS, lesi sifo sidinga ucwaningo lwezokwelapha ezingcono nokuxilonga kanye nokuqwashiswa komphakathi nokwamukelwa. Izikhungo zokucwaninga ziyinhloko kulezi zinhloso, kodwa zinezosizo kwezinye izinhlangano ezibalulekile zokusiza, nazo. Izinhlangano ezinjalo, ezibalwe ngezansi, zisebenze ngokuzimisela ukukhuthaza ucwaningo nokuqwashisa ngenhloso yokusiza labo abanenkinga yokulimaza okungenzeka baphile impilo engcono.
I-International Association for Chronic Chronic Fatigue Syndrome / i-Myalgic Encephalomyelitis
I-International Association for Chronic Chronic Fatigue Syndrome / I-Myalgic Encephalomyelitis (i-IACFS / ME) iyaphawula ukuthi yilona lizwe elikhulu kunazo zonke labasebenzi bezempilo abazinikele ekunakekeleni nasekucwaningweni kwabantu abane-ME / CFS. Ikhuthaza ukukhushulwa kwezimali zikaHulumeni, imiklomelo yesibonelelo semali, kanye nezintandokazi zezintambo. Futhi, ishicilela izincwadi eziningana ngonyaka kanye nabaxhasi bephephabhuku elibukeziwe ngontanga Ukukhathala: i-Biomedicine, i-Health, nokuziphatha .
I-IACFS / ME inikeza ubulungu kubodokotela nakwabanye abahlinzeki abazinikeza ukufinyelela kumagazini wabo kanye nemali ehlisiwe ekuncintisaneni kwenhlangano. Kwabachwepheshe abangewona wezokwelapha, ubulungu obusekelayo nezinzuzo ezifanayo ziyatholakala.
Amaqiniso okusheshayo ku-IACFS / ME:
- Kwasungulwa: 1990 (njenge-IACFS; ME yanezelwa ngo-2005)
- Isimo somusa: Inhlangano kahulumeni yase-Oklahoma ayiyona inzuzo, 501 (c) 3 engeyona inzuzo
- Indawo: Bethesda, Maryland
Isitatimende sezithunywa:
Injongo ye-IACFS / ME ukukhuthaza, ukugqugquzela, nokuxhumanisa ukushintshaniswa kwemibono ehlobene noCFS, ME, nocwaningo lwe-fibromyalgia (FM), ukunakekelwa kweziguli kanye nokwelashwa. Ngaphezu kwalokho, i-IACFS / ME ibuyekeza ngezikhathi ezithile ucwaningo lwamanje, izincwadi zokwelashwa, nemibiko yemidiya ukuze kuzuze ososayensi, odokotela kanye neziguli. I I-IACFS / ME ibuye iqhube futhi / iqhaza emibuthanweni yesayensi yendawo, kazwelonke, kanye nasemhlabeni wonke ukuze kukhuthazwe futhi kuhlolwe ucwaningo olusha futhi kukhuthaze ukucwaninga okuzayo kanye nemisebenzi yokubambisana ukuze kuthuthukiswe ulwazi lwesayensi nolwazi lwezokwelapha ngalezi zifo.
Izinsiza ngawe:
- Ubulungu obuchwepheshe nabangewona ubuchwepheshe
- Ulwazi kanye nemibono ocwaningweni
- Uhlu lwezenzakalo kanye nezimemezelo eziphathelene nokucwaninga nokuxhasa ngemali
Izindlela zokufaka isandla:
- Nika imali inthanethi
- Nika imali ngeposi
I-National CFIDS Foundation
I-CFIDS yayiyigama elivamile lale nkinga ngaphambi kokuba i-ME / CFS ithandwe. Imela "ukukhathala okungapheli nokuzivikela komzimba wokuzivikela komzimba."
Izinhloso zikazwelonke zeCFIDS Foundation zizosiza ukuxhasa ucwaningo ngokubangela imbangela kanye nokwelashwa kwalesi sifo futhi, ekugcineni, ukusiza ukuthola ukwelashwa. Isebenza futhi ukunikeza ulwazi, imfundo, nokusekela kubantu abane-ME / CFS.
Ngokusho kwewebhusayithi yayo, le nhlangano ihamba ngaphezu nje kokucwaninga ngemali ngokumba ekutholeni okudlule okungakaze kwabiwe noma ukuthola abacwaningi abanolwazi olufanele nokuxhasa umsebenzi wabo kulezi zindawo. Isebenza ngokuphelele yizivolontiya futhi, kanye ne-ME / CFS, ikhuthaza ucwaningo ezimweni ezihlobene, kuhlanganise nokugula kweGulf kanye nokuzwela kwamakhemikhali amaningi.
Amaqiniso okusheshayo ku-National CFIDS Foundation:
- Eyasungulwa: 1997
- Isimo sosizo: 501 (c) 3 engeyona inzuzo
- Indawo: Needham, Massachusettes
Izinsiza ngawe:
- Ubulungu obungabizi buhlanganisa amaphephandaba amabili ngonyaka
- Izihloko zokwaziswa
- Uhlu lwezikhumbuzo
- Uhlu lwama-terminology aseJapan
Izindlela zokufaka isandla:
- Nika imali inthanethi
- Yibani ilungu
Isikhungo Sokwaziswa se-ME-CFS
I-ME-CFS Knowledge Centre inikeza ulwazi olubanzi nolwazi ngokusebenzisa i-website yayo ngenhloso yokusiza abantu abangenaye kuphela i-ME / CFS, kodwa futhi nezifo ezihlobene ne-fibromyalgia ne-Gulf War ukugula.
Amaqiniso okusheshayo esikhungweni se-ME-CFS Knowledge:
- Isimo sosizo: 501 (c) 3 engeyona inzuzo
- Indawo: Loxahatchee, Florida
Isitatimende sezithunywa:
Umsebenzi wethu ukuhlinzeka labo abanenkinga enkulu, i-myalgic encephalomyelitis / chronic fatigue syndrome (ME / CFS), i-fibromyalgia (FM), kanye nezifo ezihlobene nezinsiza ezihlukahlukene emhlabeni jikelele okumele zibhekane nalezi zinkimbinkimbi, nazo zonke ngokuvamile, izimo ezingaqondakali kahle.
Izinsiza ngawe:
- Izihloko zokwaziswa
- Ukufakwa ohlwini kwamaqembu asekela ezweni lonke
- Uhlu lwezinsiza ezibandakanya abahlinzeki bezempilo kanye nabameli abavela ezweni lonke
- Ilabhulali yevidiyo ephelele
Izindlela zokufaka isandla:
- Nikela ngemali nge-PayPal
- Thenga esitolo se-intanethi
Sombulula i-ME / CFS Initiative
I-Solve ME / CFS Initiative (SMCI) ithi "isebenza ukusheshisa ukutholakala kwezokwelapha eziphephile futhi eziphumelelayo futhi izama ukukhuliswa okunamandla kwemali eya empilweni." Igcina ibhulogi ye-biobank nesiguli esisiza ukuletha abahlanganyeli nabacwaningi ukwenza ucwaningo lube lula futhi lubize kakhulu kubaphenyi ekwenzeni idatha kusuka kumasampula atholakale kwizifundo eziningi.
Izinhloso ze-SMCI ukuthuthukisa ucwaningo ngokutholakala kokuqala kwesifo, ukuhlonza kangcono, nokwenza imithi ephumelelayo. Inhlangano igxila ngokuyinhloko kwizinto eziphilayo, ukuzivikela kanye nokuvuvukala, ne-biological neuroendocrine. Futhi, njalo ibhadela abacwaningi abasebenza kulezi zindawo imali.
Amaqiniso okusheshayo ku-SMCI:
- Isekelwe: 1987
- Isimo sosizo: 501 (c) 3 engeyona inzuzo
- Indawo: Los Angeles, California
Isitatimende sezithunywa:
Inhloso yethu ukwenza iM ME / CFS iqondwe kabanzi, ihloliswe futhi ilashwe. Sizokwenza lokhu ngokugqugquzela ucwaningo olubambe iqhaza, olugxilwe ngesineke oluhloselwe ukutholakala kokuqala, ukuxilongwa komgomo kanye nokwelashwa okuphumelelayo kwe-ME / CFS ngokusebenzisa ukwandiswa kwezimali zomphakathi, ezizimele nezokuhweba.
Izinsiza ngawe:
- Izihloko zokwaziswa ngeziguli, abangane nomndeni, abacwaningi, nabahlinzeki bezempilo
- Uhlu lwemithombo yocwaningo
- Ama-Webinars
- Zibandakanyeke nokukhuthaza
- Izindaba
Izindlela zokufaka isandla:
- Nika imali nge-intanethi noma ngeposi
USimmaron Research
USimmaron Ucwaningo lugxile ekuqhubeni izifundo-izifundo ezincane ezibonisa ukuthi imigqa ethile yocwaningo kufanele ilandelwe-okungase kube yilokho okuheha izikhungo zemfundo, izimali zikahulumeni, kanye nesithakazelo ezinkampanini zemithi ezihlokweni ezinjalo.
Ngaphezu kwalokho, uSimmaron ugcina i-sampula yamasampula eziphilayo kubacwaningi kanye nolwazi kubantu abangaphezu kuka-1 000 abane-ME / CFS. Iphinde ibambisane nabacwaningi be-ME / CFS emhlabeni jikelele.
Amaqiniso okusheshayo ku-Simmaron Research:
- Isimo sosizo: 501 (c) 3 engeyona inzuzo
- Indawo: Incline Village, Nevada
Isitatimende sezithunywa:
Ukuqhuba izifundo zokushayela ezidlala indima ebalulekile ekuxilongweni, ukwelashwa, nokuqonda kwe-CFS / ME nezinye izifo ezingenayo i-neuroimmune.
Izinsiza ngawe:
- Izincwadi ezivela kuM ME / CFS ezivela enhlanganweni nabeluleki bayo
- I-blog egxile ekucwaningweni
Izindlela zokufaka isandla:
- Nika imali inthanethi
Izinhlangano Ezizizwe Nezizwe
Umhlangano we ME / CFS izinhlangano zikhonza imiphakathi yasendaweni yonkana e-US nasemhlabeni jikelele. Ukuze uthole uhlu oluthe xaxa lwawo, vakashela Izinhlangano Zokugula Okungapheli Sokugula kanye ne-Myalgic Encephalomyelitis.
Izwi elivela
Ukwenza iminikelo ezinhlanganweni ezinjengalezi zisiza kungaba isipho esimangalisayo kubantu abaphila nge-ME / CFS noma balwa nalesi sifo empilweni yabo. Iminikelo yokunakekela nayo ingabhalwa ekufuneni kwakho. Ngaphambi kokuba unikeze imali kunoma yiluphi usizo, nokho, qiniseka ukuthi uyucwaninga ukuze uqinisekise ukuthi umnikelo wakho usetshenziswa kanjani ukuthi uhlose kanjani.
Uma uphakathi kwabanenhlanhla abanganikela, lolu hlu lungakusiza ukuthola indawo efanelekayo ukusekela. Kulabo abangakwazi ukunikeza imali, ungase ukwazi ukuthola ezinye izindlela ukusiza noma ukugqugquzela la maqembu. Ngandlela-thile, ungakwazi ukufunda kuzo futhi uzuze ezinsizeni abanikezayo.