May is for Lyme and ME and Autoimmune
May 14, 2024 9:22 AM Subscribe
What happens when you're an amazing young musical talent who's discovered while busking and then signed to a record label deal but things go terribly wrong and you lose it all.
In this case, you spend 8 years searching for a way to not die and then proceed to produce a distinctive track upholding a promise to advocate and support the Millions Missing who are thusly forsaken. This may be the first time any song that brings a story about M.E. and Lyme Disease hits the top 40 of the official charts; brought to us by an independent artist who has been unable to tour.
May is Lyme Disease and M.E. awareness month. There are group of autoimmune diseases with varied and fluctuating symptoms that leave sufferers, their loved ones and health care professionals unsure of diagnosis. What happens to those with Long Covid, Fibromyalgia, Myalgic Encephalomyelitis (ME), Chronic Fatigue Syndrome (CFS) or misdiagnosed Lyme Disease when there’s no treatment path for a cure or actual diagnosis?
Awareness plus advocacy are a start. Valid diagnosis of ME/CFS depends on the rigor of the initial clinical assessment, and the efforts made to exclude other treatable conditions that might be causing the collection of symptoms. If the examination is cursory – and if the clinician is skeptical, alienated or just plain disinterested – the “diagnosis” can conclude that the problem is mental health related. Being aware of a condition is a first step towards diagnosis.
Lyme disease is endemic in many parts of the United Kingdom and US. If caught early, Lyme disease can be easy to treat. However, complications can occur if the infection is left untreated.
ME/CFS affects an estimated 250,000 people in the UK and over one million people in the USA – this is more than the number with HIV infection or multiple sclerosis.
US CDC estimates that about 90 percent of people with ME/CFS have not been properly diagnosed.
Other resources
Ren's Chapters (1 through 7) outlining his story are posted for anyone interested
The film UNREST by Jennifer Brea is about the experience of living with ME available for viewing via multiple platforms.
A brief video about the years of the lived experience of severe M.E. by Anil, whose health has somewhat stabilized
Jessica Taylor Bearman's book A Girl Behind Dark Glasses is a book about a teenage sufferer
May is Lyme Disease and M.E. awareness month. There are group of autoimmune diseases with varied and fluctuating symptoms that leave sufferers, their loved ones and health care professionals unsure of diagnosis. What happens to those with Long Covid, Fibromyalgia, Myalgic Encephalomyelitis (ME), Chronic Fatigue Syndrome (CFS) or misdiagnosed Lyme Disease when there’s no treatment path for a cure or actual diagnosis?
Awareness plus advocacy are a start. Valid diagnosis of ME/CFS depends on the rigor of the initial clinical assessment, and the efforts made to exclude other treatable conditions that might be causing the collection of symptoms. If the examination is cursory – and if the clinician is skeptical, alienated or just plain disinterested – the “diagnosis” can conclude that the problem is mental health related. Being aware of a condition is a first step towards diagnosis.
Lyme disease is endemic in many parts of the United Kingdom and US. If caught early, Lyme disease can be easy to treat. However, complications can occur if the infection is left untreated.
ME/CFS affects an estimated 250,000 people in the UK and over one million people in the USA – this is more than the number with HIV infection or multiple sclerosis.
US CDC estimates that about 90 percent of people with ME/CFS have not been properly diagnosed.
Other resources
Ren's Chapters (1 through 7) outlining his story are posted for anyone interested
The film UNREST by Jennifer Brea is about the experience of living with ME available for viewing via multiple platforms.
A brief video about the years of the lived experience of severe M.E. by Anil, whose health has somewhat stabilized
Jessica Taylor Bearman's book A Girl Behind Dark Glasses is a book about a teenage sufferer
A vaccine is in the works. We would have one already if it weren't for the fraudulent claims linking the MMR vaccine to autism. A vaccine called LYMErix was in final stages in the late 90s, but some participants in the trial reported worrying pain symptoms, and sued.
"Meanwhile, growing distrust of vaccines may have compounded LYMErix’s struggles. When a 1998 report in the Lancet identified a purported link between the common MMR vaccine and autism, the study — since retracted and considered fraudulent — sparked a spike in worry about the safety of vaccines.
An advisory panel convened in 2001 by the FDA did not find any evidence that LYMErix caused arthritis in humans or an unexpected number of adverse events. But growing suspicion of vaccines in general and publicity about possible side effects had already taken a toll on LYMErix’s uptake. SmithKline Beecham projected sales of only 10,000 doses for 2002. The company withdrew LYMErix in February 2002, citing poor market performance."
posted by cubby at 10:02 AM on May 14 [7 favorites]
"Meanwhile, growing distrust of vaccines may have compounded LYMErix’s struggles. When a 1998 report in the Lancet identified a purported link between the common MMR vaccine and autism, the study — since retracted and considered fraudulent — sparked a spike in worry about the safety of vaccines.
An advisory panel convened in 2001 by the FDA did not find any evidence that LYMErix caused arthritis in humans or an unexpected number of adverse events. But growing suspicion of vaccines in general and publicity about possible side effects had already taken a toll on LYMErix’s uptake. SmithKline Beecham projected sales of only 10,000 doses for 2002. The company withdrew LYMErix in February 2002, citing poor market performance."
posted by cubby at 10:02 AM on May 14 [7 favorites]
What does ME stand for?
posted by Silvery Fish at 10:11 AM on May 14 [1 favorite]
posted by Silvery Fish at 10:11 AM on May 14 [1 favorite]
But growing suspicion of vaccines in general and publicity about possible side effects had already taken a toll on LYMErix’s uptake. SmithKline Beecham projected sales of only 10,000 doses for 2002. The company withdrew LYMErix in February 2002, citing poor market performance.
I know someone who worked at SmithKline Beecham at the time, and he said that there was a problem with the dosing schedule (3 shots, maybe?) and timing of the expiration dates. Essentially, the final dose that pharmacies/doctors received was ALWAYS expired because they didn't last for the length of time of the dosing schedule, forcing them to buy more. In theory this could, at some point, work a bit better than I'm representing here (I have no idea if the content of each of the doses in the schedule was the same) but it caused a lot of bad will and expense for pharmacies and clinicians. It's also just difficult to get patients to return for multiple doses (ask me if I've completed the schedule for the shingles vaccine, which is 2 doses.)
I don't think we've ever lived (those of us alive now) in a more anti-vax time than during COVID, and yet millions got vaccinated. Perhaps suspicion of vaccines, disbelief that Lyme disease was common (initially associated with sparsely populated, rural areas) or serious (wrapped up, at the time, with arguments about chronic fatigue syndrome), AND a major flub in roll-out killed it.
posted by vitabellosi at 10:26 AM on May 14 [2 favorites]
I know someone who worked at SmithKline Beecham at the time, and he said that there was a problem with the dosing schedule (3 shots, maybe?) and timing of the expiration dates. Essentially, the final dose that pharmacies/doctors received was ALWAYS expired because they didn't last for the length of time of the dosing schedule, forcing them to buy more. In theory this could, at some point, work a bit better than I'm representing here (I have no idea if the content of each of the doses in the schedule was the same) but it caused a lot of bad will and expense for pharmacies and clinicians. It's also just difficult to get patients to return for multiple doses (ask me if I've completed the schedule for the shingles vaccine, which is 2 doses.)
I don't think we've ever lived (those of us alive now) in a more anti-vax time than during COVID, and yet millions got vaccinated. Perhaps suspicion of vaccines, disbelief that Lyme disease was common (initially associated with sparsely populated, rural areas) or serious (wrapped up, at the time, with arguments about chronic fatigue syndrome), AND a major flub in roll-out killed it.
posted by vitabellosi at 10:26 AM on May 14 [2 favorites]
A vaccine is in the works.
(Last year, I volunteered for the Pfizer/Valneva Lyme vaccine phase 3 trial but was not enrolled because my site was full. They were, the intake coordinator told me, overrun with people signing up for the trial.)
posted by minervous at 10:43 AM on May 14 [6 favorites]
(Last year, I volunteered for the Pfizer/Valneva Lyme vaccine phase 3 trial but was not enrolled because my site was full. They were, the intake coordinator told me, overrun with people signing up for the trial.)
posted by minervous at 10:43 AM on May 14 [6 favorites]
ME = Myalgic Encephalomyelitis
posted by Iris Gambol at 10:55 AM on May 14 [4 favorites]
posted by Iris Gambol at 10:55 AM on May 14 [4 favorites]
What is the name of the artist and the song referenced in the first paragraph? Apologies if I've missed something.
posted by muddgirl at 11:02 AM on May 14 [2 favorites]
posted by muddgirl at 11:02 AM on May 14 [2 favorites]
Artist is Ren - song is Troubles. The word TRACK in the second sentence of the FPP is a link to the Youtube video.
posted by davidmsc at 11:07 AM on May 14 [1 favorite]
posted by davidmsc at 11:07 AM on May 14 [1 favorite]
Appreciate it!
posted by muddgirl at 11:22 AM on May 14 [1 favorite]
posted by muddgirl at 11:22 AM on May 14 [1 favorite]
A vaccine is in the works.
(Last year, I volunteered for the Pfizer/Valneva Lyme vaccine phase 3 trial but was not enrolled because my site was full. They were, the intake coordinator told me, overrun with people signing up for the trial.)
same thing happened to me!
posted by youthenrage at 12:14 PM on May 14
(Last year, I volunteered for the Pfizer/Valneva Lyme vaccine phase 3 trial but was not enrolled because my site was full. They were, the intake coordinator told me, overrun with people signing up for the trial.)
same thing happened to me!
posted by youthenrage at 12:14 PM on May 14
Ren is the most brilliant musician alive imo - singing and speaking on so many topics that our whole societies avoid a very important man for these times, and a glimmer of hope.
And such diverse capabilities, often multiple genres in one song, and some seriously hard hitting videos - many are hard to watch without losing it.
posted by unearthed at 12:19 PM on May 14 [2 favorites]
And such diverse capabilities, often multiple genres in one song, and some seriously hard hitting videos - many are hard to watch without losing it.
posted by unearthed at 12:19 PM on May 14 [2 favorites]
I was in the Lyme trial but they ended it early due to "irregularities" from the trial operator. Another one, run by a different company, launched and my wife signed up.
She might get the full course (I only got two shots), plus they are paying more. I am so jealous -- but mostly I just want the vaccine!!
posted by wenestvedt at 12:28 PM on May 14
She might get the full course (I only got two shots), plus they are paying more. I am so jealous -- but mostly I just want the vaccine!!
posted by wenestvedt at 12:28 PM on May 14
ME = Myalgic Encephalomyelitis
AKA chronic fatigue syndrome (CFS); these days you'll commonly see it referred to as CFS/ME or the other way around.
posted by trig at 1:11 PM on May 14
AKA chronic fatigue syndrome (CFS); these days you'll commonly see it referred to as CFS/ME or the other way around.
posted by trig at 1:11 PM on May 14
I think the most recognized artist to struggle with Lyme complications is Kathleen Hanna.
posted by ovvl at 1:35 PM on May 14
posted by ovvl at 1:35 PM on May 14
For those who were asking about the musician here is Ren's most viewed song video. And this is a mind-blowing tale that is three separate one-takes stitched together for the entire story. I must say we're fortunate to have this artist seeing the light of day now.
posted by mightshould at 2:27 PM on May 14 [1 favorite]
posted by mightshould at 2:27 PM on May 14 [1 favorite]
I'm sorry if this is a derail (?), maybe it's the vid mightshould posted (link is broken for me) but Jesus fucking Christ, Hi Ren.
I think that there are a page of content/trigger warnings that video might need - maybe don't click unless you're in a good space about your own mental health right now - but I need to go sit down, wipe away a few tears and process all of that for a minute. It's very very good. He's very very (unflinchingly) good.
posted by BlueBlueElectricBlue at 3:19 PM on May 14 [2 favorites]
I think that there are a page of content/trigger warnings that video might need - maybe don't click unless you're in a good space about your own mental health right now - but I need to go sit down, wipe away a few tears and process all of that for a minute. It's very very good. He's very very (unflinchingly) good.
posted by BlueBlueElectricBlue at 3:19 PM on May 14 [2 favorites]
BlueBlueElectricBlue I know, very little of Ren's work is safe in the way of almost anything else, also amazingly long tracking shots that don't give the mind any rest like Animal Flow, tracks like that that flavoured with atrocity and erotica enable him to slip lyrics in like.
I will burn the Houses of Parliament down
and it takes several listens until the cinema, the theatre, has less effect and the deeper messages emerge.
There are hour's long explorations of videos like Hi Ren and Sick Boi (major CW on both of those, every CW) as there are so many details, so many layers. Genesis is the first one I found that adresses mental illness - that video is not troubling although the lyrics explore a lot of mental issues. Also the constant breaking of the fourth wall - I can't think of anyone else who does this, although Benefits does but politics mainly, very shouty, very angry, very sweary.
posted by unearthed at 10:37 PM on May 14 [1 favorite]
I will burn the Houses of Parliament down
and it takes several listens until the cinema, the theatre, has less effect and the deeper messages emerge.
There are hour's long explorations of videos like Hi Ren and Sick Boi (major CW on both of those, every CW) as there are so many details, so many layers. Genesis is the first one I found that adresses mental illness - that video is not troubling although the lyrics explore a lot of mental issues. Also the constant breaking of the fourth wall - I can't think of anyone else who does this, although Benefits does but politics mainly, very shouty, very angry, very sweary.
posted by unearthed at 10:37 PM on May 14 [1 favorite]
cw for ren: my partner got really into ren and then discovered a number of his songs about violence against women (like, the kind where he’s bragging about it) and like, straight up violence along the lines of “i’m gonna go shoot up a public place, i’m a [slur]” and we both had to nope out of his music entirely despite some of it being relatable. it’s too bad. there isn’t a lot of music about illness. I do like Typhoon (lead singer also has Lyme) for a totally different style of music exploring illness and grief though.
posted by one-half-ole at 10:38 PM on May 14
posted by one-half-ole at 10:38 PM on May 14
one-half-ole; I know there's another artist who goes by the name of Ren. This artist is Ren Gill and I don't think they are the same.
posted by mightshould at 12:59 AM on May 15 [2 favorites]
posted by mightshould at 12:59 AM on May 15 [2 favorites]
Hi from the depths of chronic fatigue (symptom not syndrome), it is so hard.
posted by ellieBOA at 2:44 AM on May 15 [3 favorites]
posted by ellieBOA at 2:44 AM on May 15 [3 favorites]
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posted by EmpressCallipygos at 9:31 AM on May 14 [2 favorites]