Decode ME Study Results: Marvellous or ‘Meh?’

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Fucked genetics

By the power of Spit! (who needs Grayskull) – we have the Power!

… Or at least, concrete proof of our fucked genetics – which is almost as good.

Thanks to initial DNA results announced from the world’s largest Decode ME study on the 6th August (link shared at the end), we now have official and unmistakeable proof that – shock horror – people with ME haven’t been fabricating or imagining their suffering for the last 50+ years: there actually IS something biologically wrong with us. Go figure. And … it’s in our genes.

After decades of disbelief, stigma and medical neglect, this is a gigantic breakthrough in ME research, and I should be feeling absolutely elated by it. But – rather weirdly – I’m not. Instead, I feel quite ‘meh’ about it.

So why is that?

… Well, I’ll come back to that in a bit.

But first …

Along with many thousands of others – I too, contributed to this study of ME. As requested, I posted the Decode ME team a sample of my saliva in the DNA kit provided, and completed a lengthy questionnaire. Such a simple thing, but combined with everyone else’s contributions, it played a role in their ground breaking and stigma-squashing results.

The Decode ME study’s results show conclusively, that there are at least 8 genetic differences between the DNA of people with ME and the general population.

… And for all the pessimists out there – yes, the sample size used to yield these results was large. VERY fucking large in fact. And I would bet my mortgage on the methodology used being perfectly sound as well.

The genetic signals identified as predisposing or causing a person to develop ME are involved in both the immune and nervous systems – which tallies in nicely with the various symptoms we report, as well as it being common for many people with ME to develop the disease following a viral or bacterial infection. The research team also state that NONE of the genes identified were related to depression or anxiety. Hallelujah! Proof beyond any reasonable doubt that this is a biological disease that has fuck all to do with being depressed or anxious.

… Ya know – like we’ve been saying for the last 50+ years. Once again – go figure.

A terrific turd

Despite feeling a bit ‘meh’ overall, I will cheerfully admit that it IS rather fantastic to know my genes helped towards formulating the massive turd that’s just been dumped on all the naysaying stigma-fuelling psychiatric arse wipes that have perpetuated the false idea for the last 50ish years that ME and the fucking hell that those of us living with this disease go through on a daily basis is, ‘all in our heads,’ along with plentiful shavings of beautiful shite on top of their belief that we just need to ‘think positive’ and do some ‘graded exercise therapy.’ Fuck yeah! Go my genes, and the genes of the thousands upon thousands who also posted their finest spit in the name of research and motherfucking justice! Woohoooo!!

A distant memory

Now, where was I again? I’m feeling rather delirious. It’s probably altitude sickness from the glorious height upon which my beautiful soap box stands. Let me just climb down a second and remember where I was going with this …

Oh yes, I remember now. Needless to say, this symptom-validating milestone has been a long time coming for the ME community. So, apart from my aforementioned glee … why aren’t I jumping for joy overall? I mean … what the fuck is WRONG with me?! (Spoiler alert: it’s not because I’m depressed or anxious.)

… It’s because, after 8 years of living (sometimes merely existing) with ME, I’m worn out. I’m physically, mentally and emotionally spent. I’m fresh out of spoons, and hope is a distant memory. A pleasant memory, but still – a very distant one.

When I was first diagnosed, I did my best to keep up with research developments. And there have been plenty. Way too many to detail here because this is not the place for a literature review. However, if you’re interested, then head over to the ME Association’s website where you’ll find a large index of published research that may fill you with the same eager anticipation that it once did me.

In the early days of my diagnosis, I used to get so excited whenever a new ‘breakthrough’ was found; I felt so optimistic about the future for myself and others with ME; so full of hope. Although it sucked balls to have ME, and life as I knew it had fallen apart at the seams as a result – it made things a little easier to know that I might be part of the first generation to ever benefit from some answers and a treatment or cure. I just had to be patient.

So … I waited. And waited. And waited. And waited.

Same shit, different day

But months turned into years. And years turned into more years. Eventually, it started to feel like ‘same shit, different day,’ on the research front. My hope dwindled. It was always the same story: lots of promising preliminary results, based on studies with relatively small sample sizes, and practically non-existent funding to expand on those findings. And that’s been a HUGE part of the problem … funding. How can any of the current and plentiful research findings EVER get off the ground, when no government has ever taken ME seriously (and actually proven it by putting their hands in their pockets and digging really fucking deep)?

I mean, fuck – I remember reading once that male pattern balding gets more research funding than ME. And as I lay in bed with Severe ME, too poorly to go downstairs – despite having a stairlift to help me – missing from my life, crying over the future I would no longer have while the world carried on living and having fun without me – I can honestly say it did not make me feel any better to know that although I may never get better, there’s a brighter future ahead for all the baldilocks wankers out there. (Okay, they’re probably not wankers, as it’s not their fault, bless them … but whoever decided to allocate more funding to them than to ME is most definitely a wanker of gargantuan proportions.)

NICE and not-so-nice

After way too many years of medical neglect, the NICE guidelines on ME were FINALLY updated in 2021 to reflect the true nature of this disease and how it presents when Mild, Moderate, Severe, and Very Severe. This seemed like a HUGE breakthrough at the time. Like, FINALLY, our country’s medical professionals will start recognising, diagnosing, and managing this condition for the biological – NOT psychological – hell hole that it is. People with ME will finally be treated with the kindness, compassion and care they deserve.

… So, why, four years on, am I still reading news articles about – and signing petitions to help – people with Very Severe ME in England who are still battling for their lives in NHS hospitals that refuse to take this condition seriously? After all the excitement when the NICE guidelines were updated … I feel so disappointed and utterly deflated by this, as well as furious and sad for those people and their families. No-one deserves the cruelty of this disease at any end of the severity spectrum. And nothing … and I mean NOTHING, can excuse the disgraceful treatment and medical neglect experienced by many ME sufferers in this country.

Don’t get me wrong – there are some absolute diamonds out there too. I know this because I met one: an old GP of mine in the early days of my diagnosis. Not only did she BELIEVE me when I told her my symptoms, but she actually wanted to help me. She was humble enough to not pretend she had all the answers, and wise enough to want to learn. Together, we looked through all the research I’d found in my quest for symptom relief, and she willingly prescribed me various medications to see if it would help. I didn’t find relief. But given all of the aforementioned stigma and medical neglect going on in the world (and it is the world – not just England), I felt lucky to have found a caring and compassionate doctor who didn’t try to fob me off, and – in the absence of any treatment or cure – it brought me so much comfort to know my doctor at least had my back. There are many doctors out there who could learn a lot from that beautiful woman. (She isn’t my GP anymore because she decided to go off travelling around New Zealand. And to this day, I hope she had an amazing time, as she truly deserves it.)

What I want

But anyways, back to these ground breaking Decode ME results. After all these years and all the false hope – I just feel like I’ve heard it all before.

… Even when I haven’t.

I hate that I feel this way. I WANT to be jumping for joy. I WANT to feel hopeful again. I WANT to feel like I can stop avoiding telling people I have ME for fear of being judged, disbelieved and stigmatised. I WANT to feel like the tide is turning and that we will finally be taken as seriously as anyone else with a disabling, debilitating, life-altering disease.

Every time my child has no energy and I’m worried that his health might go down the same toilet mine did … I WANT to not only hope, but KNOW that things will be different for him. I NEED to know that 50+ years of medical and societal neglect stops NOW.

… But will it?