Ingaba ubiza ngokuba ngumzimba ongapheliyo wokukhathala, i-myalgic encephalomyelitis, i-ME / CFS, okanye i-CFIDS, esi sifo sidinga uphando malunga nokuphuculwa konyango kunye nokuxilongwa kunye nokuphakanyiswa koluntu nokwamkelwa. Amaziko ophando ayingundoqo kuloo njongo, kodwa banokuncedwa nakwezinye iinkampani ezibalulekileyo ezibalulekileyo. Le mibutho, echazwe ngezantsi, sebenza ngokunyanisekileyo ukukhuthaza uphando kunye nolwazi ngenjongo yokunceda abo banezifo eziphazamisayo ukuba baphile ubomi obungcono.
Umbutho Wamazwe Omhlaba weSyndic Syndrome / I-Myalgic Encephalomyelitis
I-International Association yoLondolozo oluSigxina lokuThathaka / i-Myalgic Encephalomyelitis (i-IACFS / ME) iyaphawula ukuba liqela elikhulu lamazwe ngamazwe aqeqeshelwa ngononophelo ozinikezele kunyango kunye nophando lwabantu abane-ME / CFS. Ikhuthaza ukunyuswa kwezimali karhulumente, izibonelelo zemali kunye neenkomfa zenkomfa. Kwakhona, ipapasha iincwadana zeendaba eziliqela ngonyaka kunye nabaxhasayo kwiphephancwadi ephononongwa ngontanga Ukukhathala: i-Biomedicine, iMpilo kunye nokuziphatha .
I-IACFS / ME inikeza ubulungu kubagqirha nakwabanye ababoneleli abawanikezela ukufikelela kwiphepha labo kunye neerhafu ezihlawulelwayo kwiinkomfa zentlangano. Kwiingcali ezingezizo zonyango, ukuxhaswa kwamalungu kunye nezibonelelo ezifanayo ziyafumaneka.
Iinkcukacha ngokukhawuleza kwi-IACFS / ME:
- Eyasungulwa: 1990 (njenge-IACFS; ME yongezwa ngo-2005)
- Isimo sobuNcedo: Inhlangano ye-Oklahoma engekho inzuzo, 501 (c) 3 engekho inzuzo
- Indawo: Bethesda, Maryland
Isiteyithimenti soxanduva:
Iinjongo ze-IACFS / ME kukukhuthaza, ukuvuselela kunye nokulungelelanisa ukutshintshwa kweengcamango ezinxulumene neCFS, ME, kunye nophando lwe-fibromyalgia (FM), ukunakekelwa kwezigulane kunye nokunyangwa. Ukongezelela, ii-IACFS / ME ziphonononga ngezihlandlo uphando lwangoku, unyango lwezokhuseleko, kunye neengxelo zeendaba ukuze kuxhamle izazinzulu, oogqirha kunye nezigulane. I-IACFS / ME iphinda iqhube kunye / okanye ithatha inxaxheba kwiinkomfa zenzululwazi zengingqi, kazwelonke nakwihlabathi jikelele ukwenzela ukukhuthaza nokuphonononga uphando olutsha kunye nokukhuthaza imisebenzi yophando kunye neenkqubo zokubambisana ukuze kuqhube phambili ulwazi lwezesayensi nolwazi lwezonyango.
Izibonelelo kuwe:
- Ubulungu obungcali kunye nonobungcali
- Ulwazi kunye neengcamango zophando
- Uluhlu lweziganeko kunye nezipapasho eziphathelele uphando kunye nenkxaso
Iindlela zokufaka isandla:
- Nika imali kwi-intanethi
- Nika imali ngeposi
I-National CFIDS Foundation
I-CFIDS yayigama eliqhelekileyo le meko phambi kokuba i-ME / CFS ithandwe. Imela "ukukhathala okungapheliyo kunye ne-immune disys function syndrome."
Iinjongo zeSizwe zeCFIDS Foundation zikunceda ukuxhasa iingxowa zophando malunga nesizathu kunye nokunyangwa kwesi sifo kwaye, ekugqibeleni, ukunceda ukufumana unyango. Kusebenza kwakhona ukubonelela ngolwazi, imfundo kunye nenkxaso kubantu abane-ME / CFS.
Ngokuya kwiwebhusayithi yayo, le ntlangano idlulela ngaphaya nje kweengxowa-mali zophando ngokumba kwizinto ezithe zafunyanwa zangaphambili okanye ezingafunyanwa ngabaphandi abanolwazi olufanelekileyo kunye nenkxaso yabo ngemisebenzi kule mimandla. Kusebenza ngokupheleleyo ngamavolontiya kwaye, kunye ne-ME / CFS, ikhuthaza uphando kwiimeko ezinxulumene nazo, kuquka ukugula kweGulf kunye nokukhathazeka kwamakhemikhali amaninzi.
Iinkcukacha ngokukhawuleza kwiSizwe seCFIDS Foundation:
- Ekwasekwa: 1997
- Isimo sobuluntu: 501 (c) 3 engekho inzuzo
- Indawo: Needham, Massachusettes
Izibonelelo kuwe:
- Ubulungu obungabizi kubandakanya iincwadi ezimbini zeendaba
- Amanqaku olwazi
- Uluhlu lweSikhumbuzo
- Uluhlu lwesigama sesigqirha seJapan
Iindlela zokufaka isandla:
- Nika imali kwi-intanethi
- Yiba ilungu
Isiko soLwazi lwe-ME-CFS
Isiko soLwazi lwe-ME-CFS inikeza uluhlu olubanzi lweenkcukacha kunye nezibonelelo ngokusebenzisa iwebhusayithi yayo ngenjongo yokunceda abantu abangenaye kuphela i-ME / CFS, kodwa kunye nezifo ezinxulumene ne-fibromyalgia ne-Gulf War ukugula.
Iinkcukacha ngokukhawuleza kwiziko le-ME-CFS Ulwazi:
- Isimo sobuluntu: 501 (c) 3 engekho inzuzo
- Indawo: Loxahatchee, Florida
Isiteyithimenti soxanduva:
Injongo yethu kukubonelela abo baxineke kakhulu, i-myalgic encephalomyelitis / i-chronic fatigue syndrome (ME / CFS), i-fibromyalgia (FM) kunye nezifo ezinxulumene nezixhobo ezahlukahlukeneyo ezivela kwihlabathi jikelele ekufuneka zijongane nazo ezinzima, kwaye zonke kaninzi, iimeko ezingekho kakuhle.
Izibonelelo kuwe:
- Amanqaku olwazi
- Uludwe lweqela leenkxaso kulo lonke ilizwe
- Uluhlu lwezibonelelo ezibandakanya ababoneleli bezempilo kunye nabameli belizwe lonke
- Ilayibrari yevidiyo
Iindlela zokufaka isandla:
- Nika imali nge PayPal
- Thenga kwivenkile ye-intanethi
Sombulula i-ME / CFS Initiative
I-Solve ME / CFS Initiative (SMCI) ithi "isebenza ukukhawulezisa ukufumanisa unyango olukhuselekileyo kwaye luzama ukunyusa ukwandiswa kwemali kwiyeza." Igcina i-biobank kunye ne-registry registry eyenza ukuba abathathi-nxaxheba kunye nabaphandi bahlangane ukwenza uphando lula kwaye lubiza kakhulu kubaphandi ngaphezu kokwenza idatha kwiisampuli ezifumanekayo kwizifundo ezininzi.
Iinjongo ze-SMCI kukuqhubela phambili uphando malunga nokufumanisa kwangaphambili kwesi sifo, ukufumana ukuxilongwa okungcono, nokwenza unyango olungcono. Umbutho ujolise ngokukodwa kwi-bioenergetics, ukukhuseleka nokuvuvukala, kunye ne-biological neuroendocrine. Kwaye, ihlala ihlawula imali kubaphandi abasebenza kule mimandla.
Iinkcukacha ngokukhawuleza kwi-SMCI:
- Yasekwa: 1987
- Isimo sobuluntu: 501 (c) 3 engekho inzuzo
- Indawo: Los Angeles, California
Isiteyithimenti soxanduva:
Injongo yethu kukukwenza ukuba i-ME / CFS iqondwe ngokubanzi, ixilongwe, kwaye ithathwe. Siza kwenza oku ngokuvuselela uphando olusisigxina, olujoliswe ngesigulane olujoliswe ekufumaneni kwangaphambili, ukuxilongwa kwinjongo kunye nokunyangwa ngempumelelo kwe-ME / CFS ngokusebenzisa uluntu olwandisiweyo, olwangasese kunye notyalo-mali.
Izibonelelo kuwe:
- Amanqaku olwazi malunga nezigulane, abahlobo kunye nosapho, abaphandi kunye nababoneleli ngezempilo
- Uluhlu lwezixhobo zophando
- Webinars
- Bandakanyeka nokukhuthaza
- Newsletter
Iindlela zokufaka isandla:
- Nika imali nge-intanethi okanye ngeposi
Ucwaningo lweSimmaron
Ucwaningo lweSimmaron lujolise kwizifundo zophando-izifundo ezincinci ezibonisa ukuba imida ethile yophando ifanelekile ukuyifumana-oko kunokubangela amaziko emfundo, inkxaso karhulumente kunye nomdla kwiinkampani zonyango kwizinto ezinjalo.
Ngaphezu koko, iSimmaron igcina i-sampula yeesampula ze-biological kubaphandi kwakunye nolwazi kubantu abangaphezu kwe-1 000 kunye ne-ME / CFS. Ikwasebenzisana nabaphandi be-ME / CFS kwihlabathi jikelele.
Iinkcukacha ngokukhawuleza kwiSimmaron yophando:
- Isimo sobuluntu: 501 (c) 3 engekho inzuzo
- Indawo: Incline Village, Nevada
Isiteyithimenti soxanduva:
Ukuqhuba izifundo zophononongo ezidlala indima ephambili ekuxilongweni, unyango, nokuqonda kweCFS / ME kunye nezinye izifo ezingenazo izifo.
Izibonelelo kuwe:
- Ushicilelo kwi-ME / CFS evela kumbutho kunye nabacebisi bayo
- Ibhlogi ejoliswe kuphando
Iindlela zokufaka isandla:
- Nika imali kwi-intanethi
Imibutho yeeMmandla kunye namazwe ngamazwe
Umbutho weM ME / CFS imibutho isebenza kuluntu lwasekuhlaleni kuwo wonke ama-US nakwihlabathi jikelele. Ukufumana uluhlu oluninzi lwazo, tyelela iiMibutho zeSyndy Syndrome kunye ne-Myalgic Encephalomyelitis.
ILizwi
Ukwenza iminikelo kwimibutho enjengalezi zibonelelo kunokusisipho esilungileyo kubantu bakho abane-ME / CFS okanye baxabene nesi sifo ngexesha lobomi babo. Iminikelo yokunceda nayo ingabhalwa kukuthanda kwakho. Ngaphambi kokuba unike imali nayiphi na inceba, ke, qiniseka ukuba uyayiphanda ukuqinisekisa ukuba umrhumo wakho usetyenziswa ngendlela owawufuna ngayo.
Ukuba uphakathi kwabanenhlanhla abanokukunikela, olu luhlu lunokunceda ufumane indawo efanelekileyo yokuxhasa. Kulabo abangakwazi ukunika imali, unokukwazi ukufumana ezinye iindlela zokunceda okanye ukukhuthaza la maqela. Ngayiphi na indlela, unokukwazi ukufunda kuzo kwaye uzuze kwizibonelelo abazibonelayo.