How would recognition benefit patients? Does it move state funds towards research? - ThreadSky

jacksonriso.bsky.social • 21 days ago

How would recognition benefit patients?

Does it move state funds towards research?

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Part of the goal, according to some of the speakers, is just making people aware it exists, how many people it affects, and how devastating it is, because a recurring theme in the testimonies was how few people, including friends and doctors, even know what ME/CFS is, let alone what to do about it.

jacksonriso.bsky.social•20 days ago

I really struggle with this. In one sense, I really see the value of increased awareness.

And in another . . . If my doctor is aware of my condition but can’t treat me, that’s useless. I get that comes from a pace of privilege where I know the condition I have and many don’t.

jacksonriso.bsky.social•20 days ago

And as we have seen from the NIH’s Recover, increased awareness does not necessarily lead to an increased focus on developing treatments

dimapodolsky.bsky.social•20 days ago

A doctor can know to not tell a patient to just exercise, or know to not just prescribe an antidepressant, and know to recommend pacing. And the doctor can join everyone else in demanding research.

dimapodolsky.bsky.social•20 days ago

Every person that knows and wants treatments is a vote, in a way. Maybe some people's "vote" matters more for ultimately getting results, but it's still valuable to have as many people as possible aware of the situation to try to push it forward faster.

dimapodolsky.bsky.social•20 days ago

And from the perspective of each person, it should not have taken me ten years to figure out what I have is ME/CFS, being pushed to try random meds, therapy, and exercise all the while. Maybe if people were talking about an "ME/CFS Day" long ago, my doctor or I would have figured it out sooner.

jacksonriso.bsky.social•20 days ago

All excellent points!

tomkindlon.bsky.social•21 days ago

No idea. I just used the TV station’s headline. But at least to some sympathetic coverage in a local media outlet.

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