MsUnderstood
Senior Member (Voting Rights)
Perhaps this article demonstrates the value of @dave30th 's recent awareness-raising trip in Australia.
To the #MillionsMissing with ME/CFS, something remarkable is happening
https://www.theguardian.com/comment...-with-mecfs-something-remarkable-is-happening
"Even the name worked against you. Myalgic Encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS) combines the incomprehensible with the banal. Myalgic what? And fatigue … doesn’t sound so bad, as medical conditions go, right?
Between 94,000 and 242,000 Australians suffer from the condition . . . There’s a hint right there that something is deeply amiss – we don’t even know to within the nearest hundred thousand people how many are affected. Two things are clear, though: one, it’s a lot of people. And two, they’ve had enough of being treated as though they don’t exist.
. . . the formation of an expert advisory committee within the NHMRC in late 2017, after a focused lobbying effort. The committee brings a mix of clinical and patient expertise to the task of directing funds towards the most prospective areas of biomedical research and developing nationwide guidance for doctors struggling to provide accurate diagnosis and appropriate treatment. It may, at last, lay to rest the notion that people are imagining their symptoms or that a few push-ups might help."
The comments also make an interesting read, especially the conversation started by charleyb23 who stated "I think there are far more pressing chronic medical conditions that need funding than this."
To the #MillionsMissing with ME/CFS, something remarkable is happening
https://www.theguardian.com/comment...-with-mecfs-something-remarkable-is-happening
"Even the name worked against you. Myalgic Encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS) combines the incomprehensible with the banal. Myalgic what? And fatigue … doesn’t sound so bad, as medical conditions go, right?
Between 94,000 and 242,000 Australians suffer from the condition . . . There’s a hint right there that something is deeply amiss – we don’t even know to within the nearest hundred thousand people how many are affected. Two things are clear, though: one, it’s a lot of people. And two, they’ve had enough of being treated as though they don’t exist.
. . . the formation of an expert advisory committee within the NHMRC in late 2017, after a focused lobbying effort. The committee brings a mix of clinical and patient expertise to the task of directing funds towards the most prospective areas of biomedical research and developing nationwide guidance for doctors struggling to provide accurate diagnosis and appropriate treatment. It may, at last, lay to rest the notion that people are imagining their symptoms or that a few push-ups might help."
The comments also make an interesting read, especially the conversation started by charleyb23 who stated "I think there are far more pressing chronic medical conditions that need funding than this."
