To be fair I don't think the idea of doing this has come from the patient themselves - I'd guess it is a brainchild of either the organisation she works for (Songbirds UK) or the trust offering that service.Yes, definitely a smart idea in an illness that commonly features sound intolerance. Brilliant!
I recently got back to being able to not just tolerate, but enjoy music. It's been a blessing, though I'm very far from being able to play anything. And I can only listen a few days per week, not for long. For years, I couldn't even process music. It sounded chaotic and jumbled, caused me pain. Then I was able to sort of listen to it, but couldn't separate the instruments from the whole. It was still very limited.
As my symptoms improved over time, especially sound intolerance, I was slowly able to listen to a bit, then a bit more over time. Still not a lot compared to normal. This 'envelope' doesn't grow because I listened to music, I was able to listen to music because it grew. They have it completely backwards. As is tradition.
It comes across less as if the therapy cured her (I suspect even to laypersons, depsite the line about 'part of her recovery was designing a programme that included..') but that she is someone now doing that job who has been by the sounds of it 'received treatment' there at least at some point going by the talk about the environment, so relates to how it's nice for patients to have the soothing of the music including in ICU etc.
It is her manager who is mentioning how what this sort of thing offers (not specifically to ME patients but it sounds like inpatients) isn't 'just an add-on' but an important part of helping people recover. But I guess in the sense of that fluffy 'making the stay less 'stressful' gets people well faster' that's the sort of thing people have to say in order to justify their reason for being.
edit: just as so would having a nicer environment for lots of patients so it wasn’t too noisy to sleep etc. except I sometimes wonder if they get confused there that whilst they might get well faster the worry is they would ‘get out if there faster’ (because they were so desperate to get home to get a decent nights sleep and a clean bathroom etc) - these things always have to pitched to the ‘moving them along’ values too.
And I think it's more a story of 'someone who was once a patient now becomes staff' , and about what it can do regarding the inpatient experience across all conditions/departments than saying anything about ME/CFS specifically. And it is a good news story if she's been ill through her childhood and is now in the position where she can do this and it works for her needs, and she gets satisfaction from it etc. But I agree it is PR.
What this does flag is there is still.... and I really can't believe the disrespect that we are still here because noone cares and decides for us that 'it's OK' to keep getting it wrong that we've got this in the first para:
was housebound and in a wheelchair for several years due to the chronic fatigue condition, also known as myalgic encephalomyelitis which can cause extreme tiredness.
It's like taking all the ways of getting it wrong and then changing it to make it even worse
BUt then I cringed and still do for years and felt like I'd been made to be tarred and feathered by now being labelled as having to say the word 'syndrome' at the end of chronic fatigue - funny how even if people want to tell me in other contexts and for other illnesses that words means something different (although it's also used for 'Havana Syndrome' in the exact same tone), so I can see where someone might say ME then prefer chronic fatigue 'condition' eg can almost imagine a conversation in my head that just underlines what a state of play we are in regarding the name issue, how to describe it to someone who isn't going to listen to more than a few words etc.
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