May 12th marks the 31st anniversary of International Chronic Immunological and Neurological Diseases (CIND) Awareness Day

May 12th marks the 31st anniversary of International Chronic Immunological and Neurological Diseases (CIND) Awareness Day

Lorraine Nuthall Lorraine Nuthall

Lorraine Nuthall

Freelance Principal Medical Writer at M3 Medical Writing

发布日期: 2024年5月11日
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This year, Millions Missing has challenged patients and advocates to get creative, whether it be via art, music, or words, to share our stories and I was instantly reminded of Ren’s UK #1 album, Sick Boi (2023).

I first came across Ren in the 2017 documentary Unrest with his powerful track Patience which has since carried me through the most difficult parts of Myalgic Encephalomyelitis (M.E.).


Image description: Graffiti text on concrete wall; “I lay broken on the kitchen floor / I clawed at the laminate / Pain wandered my body, an uninvited guest / Bones were a home where the devil could rest”; “Have you ever felt pain? / Stomach wrenching, unrelenting, tell me / Have you ever felt pain? / Condescending, muscles clenching, tell me / Have you ever felt pain? / A rose emerges from the pavement cracks / They'll write my eulogy with broken glass / Eternal parallax, pain”; “Back then, the pain sprayed ricocheted like a MAC-10 / Hot lead hit the bed I was trapped in”. Lyrics from Seven Sins, Ren. 2023. Artwork by Venn @ SudioVenn, 2024.
Image description: chalk text on a chalkboard background; “I search for peace in the belly of the beast / Sick boi, sick boi, onomatopoeia / Running up a fever, followin' a leader /? Wanna be me, huh? Grass isn't greener / Bright light seizure, dynamite dealer / Dine at the table of the coroner, eat up, fuck / Thirteen years and I've been feelin' so stuck / Lucky number thirteen, just my luck / Empires tumble - rubbles and dust / The universe shrinks and the planets combust / In God we trust / God tied a noose to his neck and he walked to the edge and he jumped / Angels wept / I bear witness watching the whole thing unfold from my bed”; “A BED WHERE I NEVER DEEP REST / A BED WHERE I'M ALWAYS DEPRESSED / A BED WITH A HUMAN OPPRESSED / A BED FOR THE TOMB WHERE I SLEPT / A BED IN THIS ROOM THAT'S A WOMB FOR THIS MESS”; “Sick boi, bitten by a tick boy, tell me how it feels to be buried while you breathe / Stones and sticks, boy, pain is a gift, boy, hard to make a stand when you crawl on your knees and I kneel / I kneel at the altar of my own disease and I beg / I begged the sky for mercy, mercy never came, life did me dirty / Thirty-three and hurting, cursing”. Lyrics from Seven Sins, Ren. 2023. Artwork by Venn @ SudioVenn, 2024.
Image description: Left | glowing neon bubble font on a bright pink background with fun abstract shapes; “Oi! I’m a charming fella, I like drinking cans of Stella / See I'm living for the weekend, bad kebabs and salmonella / Cinderella story, rags to riches, spin it full propeller / I'm Nigela Lawson stacking mozzarella”; Right | Hnadwritten dark blue font on a grey and white gradient background: “Only joking, I'm an introvert / Alone inside my room because my insides hurt / I contemplate existence with consistence in my polo shirt / Then reassert my confidence with compliments I don't deserve / I calm my nerves by plotting for the day that I might leave this Earth”. Lyrics from Lost All Faith, Ren. 2023. Artwork by Venn @ SudioVenn, 2024.
Image description: Text in ticker tape font displaying over an abstract background depicting and ECG read-out; “[Ren] Sick boy, sick boy, bitten by a tick boy / Looking for that fix boy, anabolic sterr-or-oids / Stem Cell poster boy, pass out, white noisе / Quick fix, snake oil, I'm about to break boy / [Nurse] Oh, what a shame, hе's in pain, have another go / Take another pill, here, take a couple more / Let's see how you're doing in another week or so / You'll be feeling worse when the side effects will show / [Ren] De-realization, medical patient / Losing patience with the process, walking hand in hand with Satan / Complications with the medications, inflammation, dehydration / Inhalation aggravation, building up a toleration / Drown fucker, drown fucker, drown fucker, drown / I've been feeling like I'm drowning with my feet upon the ground / I've been screaming, I've been shouting, but I never make a sound / I've been looking for a way out, but I always seem to drown”. Lyrics from Sick Boi, Ren. 2023. Artwork by Venn @ SudioVenn, 2024.
Image description: White text in a sharp, handwritten font on a dark charcoal abstract background; “I lift up my eyes to the hills / Pain is my shepherd, my sword, and my shield / I find my refuge in patience and pills / A patient that's patiently waiting for help / I don't ever seem to feel well / Can anybody save me from myself? / There's blood on the leaves where I fell / Coming down / With God as my witness / I walk through the valley of the shadow of sickness”. Lyrics from Lost All Faith, Ren. 2023. Artwork by Venn @ SudioVenn, 2024.
Image description: Top | White text on a background of Rishi Sunak shouting; “Oi, pull yourself together, mate / Pull your socks up, stand up straight / Look at you, you're such a mug / God you're such a fucking state / Honestly, I wouldn't be seen dead with you in public / Depressed and disorderly, it's like you fucking love it (mug)”; Bottom | Black text on a black and white white-noise background; “Maybe you're right / Maybe it's Ren / Do it again and again and again / Maybe I'm high / Maybe I'm meant / To live in a cycle of anti-survival, amen”. Lyrics from Lost All Faith, Ren. 2023. Artwork by Venn @ SudioVenn, 2024.


We undoubtedly have a long way to go, thanks in no small part to the PACE trial scandal (Government-funded ME/CFS trial ‘one of greatest medical scandals of 21st century’ | 20 February 2018) – a Department for Work and Pensions (DWP)-funded trial in which researchers claimed that graded exercise therapy (GET) and cognitive behavioural therapy (CBT) were “moderately effective” forms of treatment for M.E. However, after a long legal battle, unpublished data from the trial was released and, when independently analysed, it showed no difference between the different treatments being tested and that reported recovery rates had been grossly inflated.

During a 2018 parliamentary debate, Westminster Hall heard how people with M.E. struggle to obtain benefits because of PACE-informed treatment guidelines, which wrongly suggested that exercise can lead to recovery.

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As Carol Monaghan (SNP MP for Glasgow North West) stated, “The failure of PACE… could simply be put down to bad science. But unfortunately, I believe there is far more to this. One wonders why the DWP would fund such a trial, unless of course it was seen as a way of removing people on long-term benefits and reducing the welfare bill.”

In 2021, NICE published the new M.E./CFS guideline, which finally did away with the cruel and dangerous PACE trial recommendations and, although over 50 years after the World Health Organisation did so, they declared M.E. a neurological, NOT psychological, illness.

But the message has been slow to spread and three years on from the NICE guidelines being published there is still very little understanding among doctors, politicians, and wider society? (I work in medical education and even I have been given mental health worksheets by employers to help manage M.E. symptoms at work, even after the new guidelines had been published). So, this May 12th, I would like to encourage every healthcare professional on my feed to take some time to connect with the lyrics from Sick Boi and truly empathise with the plight of CIND patients. It's time to #Teach M.E. #Treat M.E.!


Interested in learning more?


CME-accredited education is available from the Mayo Clinic.


#TeachMETreatME #TeachME #TreatME #MyalgicEncephalomyelitis #pwME #MECFS? #spoonie? #ChronicIllness #disability #ActionForME #MEAction #MillionsMissing #MedicalEducation #MedEd #MedComms #MEAssociation #CIND #MEAwareness #LongCovid #PACETrialScandal #WorldMEAlliance #WorldMEDay #InternationMEDay #May12th #LearnFromME #TakeAction #FundResearch #Ren #RenMakesMusic # RenLyrics #Venn@StudioVenn

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