Protest song about ME & Angel on the Water

R

Robert 1973

Senior Member (Voting Rights)
As some of you may have seen on Twitter, I recently wrote a song about a friend of mine who has ME:



Please share if you like it.

YouTube description:

I met Alex in hospital in 1999, in a neurology ward for patients diagnosed with Myalgic Encephalomyelitis (also known as ME/CFS). We were given cognitive behavioural therapy (CBT) and told that if we followed the advice we were given we would recover. We both did everything we were told but neither of us have recovered or even improved sufficiently to see each other again since we were discharged from hospital nearly two decades ago.

Alex loved to ride horses before she was unwell. Seeing a photograph of her sitting on a horse on the beach inspired me to write this song. Knowing her has given me great strength during some very difficult times.

I wrote a little about my experience of being in the hospital where we met in my essay, Perceptions of Myalgic Encephalomyelitis: http://strangerandstranger.net/miscellanea.htm#perceptions


Proposed project for a protest song

I'm currently working on an arrangement of Blowin' in the Wind with my own lyrics about some of the issues affecting people with ME. I'm thinking about turning it into a collaborative project, using the voices of people with ME from around the world.

My idea was for a different person to sing each line of the song, and for everybody to sing the chorus as a virtual choir.

If anybody would like to get involved, please let me know. My knowledge of music production is limited to recording on my iPad with Garageband and a USB mic in my bedroom, and I'm very limited in my capacity, so if anyone feels that they could help on the technical/production side, that would be great.

I will post my solo recording of the song shortly, so please watch this thread for updates.

I'm also working on some other songs about ME, but they may take a bit longer to come to fruition.
 
There were at least 2 protest songs written for the first #millionsmissing protests, one by an Irish woman, sorry name forgotten but @Tom Kindlon would know, and the other about 'boots' written I think by an American woman to fit in with the empty shoes theme.

Sorry I cannot give more detail. I think songs are a great way of conveying a message.


EDIT:The two songs were very different. I think Naomi was the name of the Irish singer; the US song was more punchy. Someone else will remember more than me. ( One sentence deleted)

EDIT2): Naomi may not be the right name
 
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Hi @Robert 1973,

As I've written on Twitter (ME_Inactivist), I love your song and your voice! :heart:

Regarding the collaborative project, the idea sounds awesome! I remember two great collaborative songs with voices from all over the world, maybe they know how to manage the recording.

The ME Recovery Song (I think produced by @Graham? :)):


And a song by the Chronic Creatives Choir:
 
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Binkie4 said:
There were at least 2 protest songs written for the first #millionsmissing protests, one by an Irish woman, sorry name forgotten but @Tom Kindlon would know, and the other about 'boots' written I think by an American woman to fit in with the empty shoes theme.

Sorry I cannot give more detail. I think songs are a great way of conveying a message.


EDIT:The two songs were very different. I think Naomi was the name of the Irish singer; the US song was more punchy. Someone else will remember more than me. ( One sentence deleted)

EDIT2): Naomi may not be the right name
Click to expand...

Laura Vitalie
 
Robert 1973 said:
As some of you may have seen on Twitter, I recently wrote a song about a friend of mine who has ME:



Please share if you like it.

YouTube description:

I met Alex in hospital in 1999, in a neurology ward for patients diagnosed with Myalgic Encephalomyelitis (also known as ME/CFS). We were given cognitive behavioural therapy (CBT) and told that if we followed the advice we were given we would recover. We both did everything we were told but neither of us have recovered or even improved sufficiently to see each other again since we were discharged from hospital nearly two decades ago.

Alex loved to ride horses before she was unwell. Seeing a photograph of her sitting on a horse on the beach inspired me to write this song. Knowing her has given me great strength during some very difficult times.

I wrote a little about my experience of being in the hospital where we met in my essay, Perceptions of Myalgic Encephalomyelitis: http://strangerandstranger.net/miscellanea.htm#perceptions


Proposed project for a protest song

I'm currently working on an arrangement of Blowin' in the Wind with my own lyrics about some of the issues affecting people with ME. I'm thinking about turning it into a collaborative project, using the voices of people with ME from around the world.

My idea was for a different person to sing each line of the song, and for everybody to sing the chorus as a virtual choir.

If anybody would like to get involved, please let me know. My knowledge of music production is limited to recording on my iPad with Garageband and a USB mic in my bedroom, and I'm very limited in my capacity, so if anyone feels that they could help on the technical/production side, that would be great.

I will post my solo recording of the song shortly, so please watch this thread for updates.

I'm also working on some other songs about ME, but they may take a bit longer to come to fruition.
Click to expand...


Thank you for posting and starting this thread. I enjoyed the song and can’t wait to hear more. I wrote a protest poem in 2016 for Millions Missing, but couldn’t find anyone to compose music to it. So when I locate the poem, I will post it here in your thread.

MEPedia is “crowd sourced”, meaning anyone can add pages and make changes. Here is the music page, in case you feel like adding a few links. You first need to create an account, login, and then make edits.

http://me-pedia.org/wiki/ME_and_CFS_music
 
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Hi @Robert 1973 : there are probably a lot of differences between us (such as age, hair, ...) but the big difference is that I am about as musical as a dead parrot. I'm happy to share any experiences that I had in putting the sunflower singalong together, but the biggest one was that it took far, far, far longer to get everyone to sing their bit than I expected. Sometimes it was because the technology didn't work, but mostly it was due to random strikes of bad ME spells.

Another difference is that my songs are generally satirical, so my version of "Blowing in the wind" was "Psychs who pull a PACE". I can't sing: I just wish I could play an instrument - I'm trying to learn the Ewi (it's light and doesn't take much breath), but all I can do is slowly increase the number of tunes that I can't quite play correctly.

I'd say that, early on, you need to have a couple (at least) of really good singers who can "carry the song", and I find that Amadeus Pro is really useful in editing, adjusting tone, pitch etc.

I doubt if there's much else I can say that is useful. But it was a lot of fun.
 
In 2016 for the SF ME event, the Millions Missing organizers were required to substitute the word “Rally” for “Protest” , in order to gain political support. I still prefer “Protest”, but understand it can be misinterpreted.

IMO, if complimenting the “Rally” theme was the main objective, then focusing on the present impact would be a better fit. For example, what’s missing is my inability to use my career skills as a woman to contribute to the field of X. Also, I am unable to care and provide for others, which causes my elderly parent to often feel lonely and isolated. Regarding research, solving ME would benefit the broader research community to better understand other complex diseases.

I could be wrong, and I mean no offense to anyone, but I feel a better sell would encompass why today it’s a good investment to fund ME research. If we keep hashing and rehashing the past, it’s too easy for others to turn a deaf ear, because too many have heard it before. I fully understand the grief and pain, and my heart goes out to everyone, but I can’t see how telling the same painful past narrative over in repeat mode will change the minds of politicians.

From a cold Biz perspective, in any investment, before people commit, they want to know what they will get out of it. How much will it cost in time and money, what are the risks, how long will it take, and what will they get in return. If we can’t communucate this basic information to potential investors (Politicians), then I am unclear how we will gain their support.

I have no idea how to write a poem/chant/song in this scenario, for a ME Rally, but I will give it some thought.

I don’t know how other countries operate, with research funded by the government. I am most familiar with the US, and my ideas posted here are for the US ME Rallies.
 
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