Queremos pesquisas. Queremos a cura! #Repost from @✨Amy ✨Spoonie For 17 Years 🇬🇧 @swiftsave_app “Imagine if all we offered patients with cancer was exercise and counselling. That is the equivalent of what is happening to patients with ME/CFS. Patients want biomedical research into effective treatments, education for doctors and medical staff, and access to information and government support services such as the NDIS which are currently being unfairly denied.” For decades, people with the condition have lingered in a twilight of misdiagnosis and misunderstanding, where clinical treatment was either absent or actively harmful and government neglect was part of the larger void in understanding across our whole society. The condition is described as “a complex, multi-system, neuroimmune condition with a multitude of symptoms related to the dysfunction of the brain, gastro-intestinal system, immune system, and endocrine and cardiac systems…” The technical language only goes part way to describing a forbidding condition that afflicts people in wildly differing ways, with the common factor that rest doesn’t recharge your body properly. Sleep just doesn’t work. The symptom-set reads like a list of everything that could possibly go wrong with your health, starting with “overwhelming post-exertional malaise”. It can mean anything from having to take things a bit slowly to being permanently bed-ridden, shut off from all forms of stimulus; when even the effort required to process sight and sound can become overwhelming...” 🔹Fantastic article by Scott Ludlum @guardian PLEASE READ (if able) to help gain & spread awareness 💙 LIVE LINK IN MY BIO ⬆️⬆️ Permanent link ➡️➡️ https://www.theguardian.com/commentisfree/2018/may/12/to-the-millionsmissing-with-mecfs-something-remarkable-is-happening 🔹 * #spoonie #meawarenessmonth #meawareness #millionsmissing #missingbutnolongersilent #endcfs #mecfs #meadvocacy #maymomentum #openmed #actionforme #endtheneglect #cfsme #thetruthoflifewithME #canyouseeMEnow #timeforunrest (em Curitiba, Brazil)
