I Was Medically Gaslit For Years – This Study Finally Proves ME/CFS Is A Real Illness

The duality of life with a chronic illness.“I mean, it’s all psychological really – have you thought about booking in some more cognitive behavioural therapy?”“Are you overdoing it at the moment? How often do you go out drinking?”“The issue is, Dayna, you really do seem fine and chatty.”These are just a few of the hundreds of disheartening sentences I’ve had from medical professionals in the decade since I was first diagnosed with myalgic encephalomyelitis (ME). ME is a long-term condition that can affect different parts of the body, with the most common symptom recognised as extreme tiredness that is not relieved by rest. Other key symptoms include sleep problems, chronic pain and intense brain fog.At just 22 years old I’d started taking ‘funny turns’ – suddenly struggling to stay awake, sleeping in toilets just to get through my work day as my body screamed like I hadn’t slept for weeks, despite getting almost 12 hours of sleep a night. Unsurprisingly, I struggled to keep a job during this period in my life.I’d be fine one moment and then suddenly feel a wave of fatigue hit out of nowhere – I’d become confused and delirious, often having to sit down wherever I was in order to avoid being a risk to myself. There were days at university where I had no choice but to go home, as I staggered about the halls feeling like my body was about to collapse.And then there was the pain – the crushing, burning pain that made my joints feel like they were set alight, despite having barely walked the length of myself some days. The scariest thing? As I was slapped with a diagnosis of ME, I was simultaneously told that what I was experiencing wasn’t seen as a real illness and that there was no cure. Like millions of others, I was told that what I had was a psychological condition that was creating physical effects in my body – a nice, good old case of ‘it’s all in your head.’ I took the limited advice I was offered (alongside being continually reminded it was likely just my brain playing tricks on my body). I was fortunate enough to be referred to an NHS clinic here in Edinburgh that helped teach me how to manage my physical and mental exertion to help control my attacks – a method known as ‘pacing’. However, most of my care has been self-informed as I’ve tried to learn what my body can and can’t handle on a daily basis. I still struggle and I’m definitely someone on the lighter end of the chronic illness spectrum.67 million people worldwide have ME or CFS (chronic fatigue syndrome) and here in the UK, the annual economic toll is calculated at more than £3bn. Despite this, no research had ever been done into why it exists in the first place or how to treat it. Until now.In a new ground-breaking study, it’s been found that people diagnosed with ME or CFS have significant differences in their DNA compared to those without the condition.There’s a genetic cause and for the first time ever, there’s no denying that this is a real illness. Our experiences are REAL.The Decode ME study, carried out by the University of Edinburgh and ME charities and in collaboration with people who have the conditions, found that there are eight areas of genetic code that make a diagnosis more likely.The eight genetic regions that stood out in those who have ME/CFS contain genes involved in immune defences and the nervous system.Although more work needs done to fully understand the biology, the findings suggest that some gene variants may make people more vulnerable to the conditions by compromising their ability to fight both bacterial and viral infections.Sonya Chowdhury, co-investigator on the study and chief executive of Action for ME, said: “For years, many people have been maligned and disbelieved, and our findings will change this.“We know that many people have experienced comments like ‘ME’s not real’. They’ve been to doctors and told that it’s not a real illness.“Being able to take this study into the treatment room and to say there are genetic causes that play a part in ME is going to be really significant. It will rebuff that lack of belief and stigma that exists.”For the new study, researchers analysed 15,579 DNA samples from the 27,000 people with ME/CFS participating in DecodeME. It’s a fact I know well – I was one of the 27,000 who donated their bodily fluids in what’s been described as the world’s largest data set of people with the disease. It was a no-brainer for me when I was asked to partake – I’ve always known something more than just my mind was at play and I’ve been desperate for something, anything, to prove that myself and my fellow ME sufferers are telling the truth.The DecodeME team is now calling on researchers from around the world to access its “rich” dataset and help drive forward targeted studies into ME/CFS.For people like me, we can only hope this is the first step in a long journey to finding a cure.And as Andy Devereux-Cooke, an ME patient who has worked as a co-investigator on the project, says: “This will be huge for the patient population.“Even though it does not provide all the answers, it is a welcome drop in the ocean towards turning the tide.”DecodeME is a collaboration between the University of Edinburgh, the charity Action for ME, the Forward ME alliance of charities, and people with ME/CFS. It is funded by the Medical Research Council and National Institute for Health and Care Research.Related...I Went On A Sexual Wellness Retreat. 5 Words Landed Me Back In Therapy.I Was Diagnosed With Autism At 46 – Here Are 5 Things I've Learned SinceI Was One Of The First People Ever In The UK To Be Diagnosed With ADHD

Comments

Breaking news

Here's What Ed Sheeran Had To Say About The Backlash Over Him Saying He 'Identifies Culturally As Irish'

Huffpost uk

Comments

Breaking news

Here's What Ed Sheeran Had To Say About The Backlash Over Him Saying He 'Identifies Culturally As Irish'

The Overlooked Insects Your Garden Could Save From Extinction

Interest Rates Just Fell – But Don't Get Your Hopes Up About The Economy Just Yet

The Thursday Murder Club Trailer: Mystery Drama's Cast Is Jam-Packed With UK National Treasures

Selena Gomez Throws Playful Shade At Her And Taylor Swift's Famous Exes

What could happen if Trump, Putin and Zelensky meet?

Calls for homelessness minister to resign after she ‘kicked out tenants’ and upped rent by £700

The heartbreaking and worrying reason blue whales are going silent

I Was Medically Gaslit For Years – This Study Finally Proves ME/CFS Is A Real Illness

Should The UK Introduce ‘Menstrual Leave’? Yes, But First Fix Toxic Work Culture

Tourists ‘blinded and poisoned’ after drinking fake grappa at Putin’s favourite resort

Map of France wildfires shows where the Aude region is as blaze intensifies

US news giants grow revenue despite AI-driven turmoil

Kari Lake claims ‘80,000 Americans’ have signed up to join ICE

A climate-friendly home starts with an energy assessment. Here's how my 100-year-old house did

United Airlines tech issue that impacted more than 1,000 flights resolved, residual delays expected

Where Trump and Putin could meet as presidents expected to reunite for Ukraine ceasefire summit

High demand expected for new daily weight loss pill

Ion Iliescu's death exposes Romania's deep divisions over his legacy as former leader laid to rest

Moment bear uses door handle to walk into home

Million-year-old stone tools found on Indonesian island could unravel mystery of ‘hobbit’ humans

Trump demands new census using ‘2024 election information’ and to weed out migrants in population totals

Prosecutors in Thailand issue indictments for dozens in deadly building collapse

‘Shock’ as study reveals how weight-loss pill stacks up against injections

Stephen Miller’s wife has left Elon Musk’s side after just months on the job to launch a new podcast

Are Trump’s tariffs pushing rivals India and China closer together?

US applications for jobless benefits rise modestly, but remain in a range considered healthy

July was Earth's third-warmest on record, EU scientists say

The most complained-about mobile providers revealed

Roblox rolls out open-source AI system to protect kids from predators in chats

Netanyahu to seek approval for expanded Gaza military operations as 29 Palestinians are killed

Homelessness Minister Said To Have Kicked Out Her Own Tenants, Then Hiked Up The Rent

This Oscar Winner Came Seriously Close To Landing Leonardo DiCaprio's Role In Titanic

The Healthiest (And Unhealthiest) Ways To Serve Spuds, According To Science

'I Was So Mad': Mariah Carey Opens Up About Brighton Pride Wardrobe Malfunction

Destination X: How Does The New Adventure Reality Show Actually Work?

Cooking Oil Can Make Or Break Your Dish, Here's How To Pick The Right One

Mum-of-three hit neighbour over the head with a spade after campaign of abuse

Four London Tube lines down after ‘points failure’ at Edgware Road

Interest rates fall even further – what does that mean for you?

Scientists have created ‘super alcohol’ – but your nearest pub is in deep space

Tarantulas with giant penises discovered and we’re scared stiff

Bingo players ‘gutted’ after glitch meant their £10,000 winnings didn’t exist

China's exports and imports picked up in July, helped by the pause in Trump's higher tariffs

WPP reveals around 4,000 roles cut in past six months as profits tumble

Mapped: Worst areas for rat infestations in the UK as over half a million reported

Thailand and Cambodia to deploy ceasefire monitors despite deadlock over captured soldiers

Overflowing bins and climate change: Why might rats be getting bigger in the UK?

Scientists study snail that can grow its eyes back in hope of helping humans with eye injuries

US auctions off $325M seized Russian superyacht – including helipad, gym and spa

Outrage as town in Spain bans Muslim celebrations in public spaces

Trump's push for drilling, mining sharpens debate for Alaska Natives about land they view as sacred

Schools are using AI surveillance to protect students. It also leads to false alarms — and arrests

The Bank of England cuts its main interest rate to 4%, the lowest level since March 2023

Takeaways from AP’s report on Alaska Natives’ response to oil and mining proposals

What risk does chikungunya pose to the UK after virus outbreak in China?

Interest rates cut to 4% as UK inflation picks up

Woman offered $2 million for being wrongfully imprisoned for 20 years

Ukraine-Russia war latest: Trump and Putin to meet ‘in coming days’ but no sign Zelensky will be invited

Level up your business with Intuit QuickBooks’ AI Agents