Kaya mumatcha matenda osatopa, myalgic encephalomyelitis, ME / CFS, kapena CFIDS, matendawa amafunika kufufuza kuti azitha kuchiritsidwa bwino komanso kuti azindikire bwino komanso kuti azindikire kuti ali ndi chidziwitso. Mabungwe ofufuza ndi ofunika pa zolinga izi, komabe ali ndi thandizo kuchokera ku mabungwe ena othandizira kwambiri, komanso. Mabungwe amenewa, omwe ali pansipa, amayesetsa kulimbikitsa kufufuza ndi kuzindikira ndi cholinga chothandizira omwe ali ndi matendawa omwe angathe kuwononga moyo wawo.
International Association for Chronic Chronic Fatigue Syndrome / Myalgic Encephalomyelitis
International Association for Chronic Fatigue Syndrome / Myalgic Encephalomyelitis (IACFS / ME) inati ndilo gulu lalikulu kwambiri la akatswiri a zachipatala odzipereka ku chisamaliro ndi kufufuza kwa anthu omwe ali ndi ME / CFS. Amalimbikitsa kuwonjezereka kwa ndalama za boma, mphotho zopereka ndalama, ndi makamu osonkhana. Komanso, imafalitsa nkhani zingapo pachaka ndipo imathandizira magazini owonetsedwa ndi anzanu : Kutopa: Biomedicine, Health, ndi Behavior .
IACFS / ME imapereka mwayi kwa madokotala ndi othandizira ena omwe amawapatsa mwayi wopezeka m'magazini yawo komanso malipiro opatsirana pa zokambirana za bungwe. Kwa osakhala achipatala, othandizira omwe ali ndi mapindu ofananawa alipo.
Mfundo zofulumira pa IACFS / ME:
- Yakhazikitsidwa: 1990 (monga IACFS; ME inawonjezeredwa mu 2005)
- Chikhalidwe chachikondi: bungwe la boma la Oklahoma, zopanda phindu, 501 (c) 3 osapindula
- Malo: Bethesda, Maryland
Mawu aumishonale:
Ntchito ya IACFS / ME ndiyo kulimbikitsa, kulimbikitsa, ndi kuyendetsa kusinthanitsa kwa malingaliro okhudzana ndi CFS, ME, ndi kufufuza kwa fibromyalgia (FM), chisamaliro cha odwala, ndi chithandizo. Kuphatikiza apo, IACFS / ME nthawi ndi nthawi amafufuza kafukufuku wamakono, mabuku ochizira, ndi mauthenga a pa TV kuti apindule asayansi, odwala, ndi odwala. IACFS / ME imapangitsanso / kapena kuchita nawo misonkhano ya sayansi, ya dziko, ndi yapadziko lonse pofuna kulimbikitsa ndi kufufuza kafukufuku watsopano ndi kulimbikitsa kafukufuku wamtsogolo ndi ntchito zothandizira kuti apititse patsogolo maphunziro azachipatala komanso zachipatala.
Zothandiza kwa inu:
- Ophunzira ndi osakhala amodzi
- Information ndi maganizo pa kafukufuku
- Kulemba zochitika ndi zolengeza zokhudza kufufuza ndi ndalama
Njira zopereka:
- Perekani ndalama pa Intaneti
- Perekani ndalama kudzera mwa makalata
National CFIDS Foundation
CFIDS anali dzina lofala pa vutoli pamaso pa ME / CFS. Chimaimira "matenda otopa ndi matenda opatsirana pogonana."
Zolinga za National CFIDS Foundation ndizothandizira kufufuza kafukufuku wokhudza matenda ndi matendawa, ndipo potsiriza, kuthandiza kupeza chithandizo. Zimagwiranso ntchito kupereka mfundo, maphunziro, ndi chithandizo kwa anthu omwe ali ndi ME / CFS.
Malingana ndi webusaiti yathu, bungwe ili limapitirira kungopereka ndalama zowonjezera pogwiritsa ntchito zofufuza zakale zomwe sizinagawidwe kapena kupeza akatswiri omwe ali ndi luso lothandizira ndikuthandizira ntchito zawo m'maderawa. Amagwiritsidwa ntchito ndi odzipereka ndipo, pamodzi ndi ME / CFS, amalimbikitsa kafukufuku ku zochitika zina, kuphatikizapo Gulf War matenda ndi multiple mankhwala kumva.
Mfundo zofulumira pa National CFIDS Foundation:
- Yakhazikitsidwa: 1997
- Chikondi: 501 (c) 3 osapindula
- Malo: Needham, Massachusettes
Zothandiza kwa inu:
- Mamembala otsika mtengo amaphatikizapo nkhani ziwiri za chaka
- Nkhani zamalonda
- Mndandanda wa Chikumbu
- Mndandanda wa mawu achipatala a ku Japan
Njira zopereka:
- Perekani ndalama pa Intaneti
- Khalani membala
Mzinda wa ME-CFS Knowledge
Bungwe la ME-CFS Knowledge Center limapereka zidziwitso zambiri ndi zowonjezera kudzera pa webusaiti yathu ndi cholinga chothandizira anthu omwe alibe ME / CFS okha, komanso matenda okhudzana ndi matenda a fibromyalgia ndi matenda a Gulf.
Mfundo zowonjezera pa ME-CFS Knowledge Center:
- Chikondi: 501 (c) 3 osapindula
- Malo: Loxahatchee, Florida
Mawu aumishonale:
Cholinga chathu ndi kupereka odwala odwala, myalgic encephalomyelitis / matenda otupa (ME / CFS), fibromyalgia (FM), ndi matenda okhudzana ndi zinthu zosiyanasiyana zochokera padziko lonse lapansi zomwe zingathe kuthana ndi zovutazo, ndi zonse kawirikawiri, zinthu zosadziwika bwino.
Zothandiza kwa inu:
- Nkhani zamalonda
- Mndandanda wa magulu othandizira m'dziko lonselo
- Mndandanda wazinthu zophatikizapo kuphatikizapo othandizira zaumoyo ndi alangizi ochokera kudera lonselo
- Makanema avidiyo ambiri
Njira zopereka:
- Perekani ndalama kudzera pa PayPal
- Gulani mu sitolo yapa intaneti
Konzani Me / CFS Initiative
Chigawo cha Solve ME / CFS Initiative (SMCI) chimati "chimayesetsa kufulumizitsa kufotokoza kwa mankhwala abwino komanso ogwira mtima ndipo amayesetsa kuti chitukuko cha ndalama chitheke kuchipatala." Icho chimapanga biobank ndi odwala olemba mabuku omwe amathandiza kuti ophunzira ndi ochita kafukufuku athe kupanga kafukufuku mosavuta komanso osakwera mtengo kwa ofufuza pamwamba pa kupanga data kuchokera ku zitsanzo zomwe zikupezeka ku maphunziro angapo.
Zolinga za SMCI ndizopititsa patsogolo kufufuza koyambirira kwa matendawa, kupenda bwino, komanso kupanga mankhwala oyenera. Bungweli limayang'ana makamaka pazinthu zowonongeka, chitetezo chokwanira ndi kutupa, ndi sayansi ya neuroendocrine. Ndipo, nthawi zonse amapereka ndalama kwa ofufuza omwe amagwira ntchito m'maderawa.
Mfundo zofulumira pa SMCI:
- Yakhazikitsidwa: 1987
- Chikondi: 501 (c) 3 osapindula
- Malo: Los Angeles, California
Mawu aumishonale:
Ntchito yathu ndi kupanga ME / CFS kumvetsetsa bwino, kuyezetsa, ndi kuchiritsidwa. Tidzachita izi mwa kulimbikitsa kafukufuku wokhudzana ndi odwala, omwe ali ndi maganizo okhudzana ndi odwala, omwe amawunikira kale, kuwunikira cholinga, komanso chithandizo chamtundu wa ME / CFS kupyolera muchulukidwe cha anthu, zapadera, ndi zamalonda.
Zothandiza kwa inu:
- Nkhani zokhudzana ndi odwala, abwenzi ndi abambo, ofufuza, ndi othandizira zaumoyo
- Mndandanda wa zofufuza
- Webinars
- Pezani nawo malonda
- Nkhani yamakalata
Njira zopereka:
- Perekani ndalama pa intaneti kapena mwa makalata
Kafukufuku wa Simmaron
Simmaron Research ikuyang'ana pa maphunziro oyendetsa-kafukufuku wamng'ono omwe amasonyeza kuti mndandanda wina wafukufuku uli woyenera kutsata-chomwe chingakhale chomwe chimakopa mabungwe aphunziro, ndalama za boma, ndi chidwi kuchokera kwa makampani a mankhwala ku nkhani zoterezi.
Kuwonjezera apo, Simmaron ali ndi malo osungirako zamoyo kwa ofufuza komanso zomwe zilipo pa anthu oposa 1,000 omwe ali ndi ME / CFS. Amagwirizananso ndi a ME / CFS ofufuza padziko lonse lapansi.
Zofufuza mwamsanga pafukufuku wa Simmaron:
- Chikondi: 501 (c) 3 osapindula
- Malo: Incline Village, Nevada
Statement Mission:
Kuchita maphunziro oyendetsa ndege kumathandiza kwambiri kuti apeze matenda, kuchipatala, ndi kumvetsa za CFS / ME ndi matenda ena osokoneza bongo.
Zothandiza kwa inu:
- Mabuku pa ME / CFS ochokera ku bungwe ndi alangizi ake
- Bungwe loyang'ana kafukufuku
Njira zopereka:
- Perekani ndalama pa Intaneti
Mayiko ndi mayiko ena
Msonkhano wa ME / CFS umagwira anthu ammidzi kudera la US ndi kuzungulira dziko lonse lapansi. Kuti mumve tsatanetsatane wa maulendo awo, pitani ku Makampani a Chronicle Fatigue Syndrome ndi Myalgic Encephalomyelitis.
Mawu Ochokera
Kupereka zopereka ku mabungwe monga awa othandizira kungakhale mphatso yabwino kwa anthu omwe ali ndi ME / CFS kapena kulimbana ndi matendawa m'moyo wawo. Zopereka zothandizira zingathe kulembedwa mu chifuniro chanu. Musanapereke ndalama ku chithandizo chilichonse, onetsetsani kuti mukufufuza kuti muonetsetse kuti ndalama zanu zikugwiritsidwa ntchito momwe mudakonzekera.
Ngati muli m'gulu la anthu omwe ali ndi mwayi wothandizira, mndandandawu ukhoza kukuthandizani kupeza malo abwino oti muthandizire. Kwa iwo omwe satha kupereka ndalama, mukhoza kupeza njira zina zothandizira kapena kulimbikitsa magulu awa. Mwanjira iliyonse, mukhoza kuphunzira kuchokera kwa iwo ndikupindula ndi zomwe amapereka.