#decode me

[phleb0tomist]

oh yeah the results just came out for the biggest study on myalgic encephalomyelitis to date, Decode ME, and since it’s severe ME day it seems a good time to share. they weren’t sure they’d find a genetic component but they did! i can’t express how much this means. there are decades of stigma and poor science attached to the ME diagnosis with most doctors receiving no education on it and thus believing the popular (dangerous) misconstruction of ME as a bad attitude or a refusal to ‘believe’ in oneself. people die preventable deaths bc of the popular view that ME is behavioural or caused by pessimism. but this study is a meaningful piece of evidence to the contrary.

the study analysed the dna of 15,000 patients and found that people with ME have significant genetic differences. they identified eight genetic signals involved with the immune and neurological systems, which is in line with the expert consensus (and the belief of patients) that ME is primarily a neuroimmune condition and is not psychosomatic. the signals that predispose a person to ME are not the same as those that predispose depression or anxiety. with any luck, this will be a step towards real research that doesn’t just study how much patients ‘believe in themselves’ but instead looks at the physical mechanisms behind the symptoms… i’m so so hopeful that in my lifetime we’ll see at least some kind of treatment, some kind of relief or public understanding. anything. i think this is a big step!!

[rightintheghoulies]

[rhube]

Feeling kind of emotional about this.

Months ago I completed the Decode ME questionnaire in the hopes that they would select me to contribute my DNA and it could be used to find out how ME/CFS works and maybe develop a cure.

Decode ME is the largest ever study of patients with ME/CFS and I desperately wanted to take part. I wanted people with my set of circumstances - which led to a 7 year delay in diagnosis and the end of my academic dreams - to be represented.

They said no. They didn't say why, but I assume it was for the same reason I was misdiagnosed for so many years: I am depressed. I have been for most of my life. I my current 'episode' of depression has been going on since I was 22, 6 years before I got sick. It never stopped me from doing the ridiculous number of things I used to do, even if I was crying as I did them.

I have always known my depression has nothing to do with my CFS, although I'm pretty sure I would have come out of it by now if my dreams, health, and financial stability hadn't been destroyed by this demon disease, along with so many relationships and the opinions of others who thought I just couldn't 'hack' it. Having CFS is fucking depressing, but the depression does not cause CFS.

Millions of people are in the same position as me. If you have depression, your health outcomes suck, but most of that is because of medical prejudice and an out-dated, 90-style, mystical belief in mind over matter. As I argued in my PhD thesis, mind IS matter, but my depression has fuck all to do with my CFS. CBT is not going to make me better. As recent research shows, it's in my fucking mitochondria.

Today Decode ME emailed me to say that they've reconsidered. They want my DNA after all.

I'm... I don't have words for it.

I have so much medical trauma. It is both affirmation and grief.

If you were put off completing the Decode ME questionnaire because you also expected to be turned down, do it now!

There is so little serious, medical research being conducted in the UK, seat of King's College London and the false doctrine that ME/CFS is just people who are sad because they got sick and just have to buck up. But this is one Brits can take part in.

Take Part - DecodeME

Join the world’s largest study of ME/CFS Together we can decode ME/CFS. Scientists and people with ME/CFS, carers and charities have come to

Even if they don't pick you for the big study, they'll keep your answers on file.

Things are changing. It is heartbreakingly slow. But there is a gap in the clouds. I see a chink of blue.

[narratorbones]

Hyn jvtpun zvvu (ovwlmbssf)

Mvssvd aol Pzbybz vefypujobz

[handarii]

Very subtle was your way Yet my heart suffers The superficial feeling Subsisting faintly So superfluously felt So hopelessly subverted

[mycharmingcharade]

Gerard.

He was an enigma to all of us. He would appear when we most wanted but least expected him. He seemed to know everything that escaped us. We would ask how he knew all of this and he would simply say, “the clouds,” or “the ground.” It didn’t seem like any of us fully trusted him, but we couldn’t just send him away, either. For some reason he was intent on joining the Cursed, and he was certainly intelligent and good at his job. No one would confess that they were afraid of him, but none of us were willing to turn him away.

[mycharmingcharade]

Ozzie Smith. There was only one way to describe his skin color, and that was yellow-green, the same yellow-green someone got before you saw what they had for lunch. His eyes always looked like they were about to pop out of his head, and his shoulders were always up by his jawline. There was no way of knowing what specifically put him on edge because he always looked like that; he always looked uncomfortable in his own skin.

[mycharmingcharade]

Aurore Sbornei. Truth-telling is her game. You can tell when she is breaking her own rules by the red on her face and the wringing of her hands. She holds herself to the same expectations that she holds of others. Being a Leader sometimes requires standing outside of the rules, though.