Any kind of activism isn’t easy. It’s hard to drive social change, and it’s even harder from your bed. The internet and social media have given us a forum and a voice, but it’s still hard. The main thing I can do is write and post and share. I blog and retweet and write and share on Facebook. It isn’t a lot but it’s what I can do.
I haven’t posted much about ME for a while though. Not since the screenings of Unrest we put on in November.
Honestly, I’m exhausted. Just living with this is so utterly exhausting and all consuming, that fighting for change becomes impossible. It’s just too much. I can’t do it any more.
But I always come back to it. I have to. I don’t have an option. I can’t forget about this or walk away because this is my life. I’m stuck in this nightmare and however impossible fighting seems I have no choice. This is my fight. I didn’t choose it and I don’t want it, but most of us don’t get to choose our fights. The privilege of being able to choose your battles is an underated one.
We’re still a tiny voice against a powerful establishment. Sometimes it feels like we’re just on the cusp of change; that justice is coming. But in the next second it can retreat so far into the distance it seems like I will never touch it, never see the dawn I’ve been waiting so long and fighting so hard for.
NICE announce that they are going to revise the guidelines, MP’s watch Unrest and seem genuinely moved, articles are written, conversations I’ve waited decades for begin to happen.
But then Esther Crawley uses her platform to once again make unsubstantiated claims and accusations, completely unchallenged.
Per Fink – the man who held a severely ill ME patient illegally for 3 years to force psychiatric treatment on her so he can prove the illness is psychological – is invited to the UK to speak at a conference as an expert on the condition.
His treatment didn’t work. The patient was released, still sick, the evidence supporting his belief is being eviscerated, but he’s the expert invited to speak on our behalf. In 2018.
It’s been 28 years since Simon Wessley arranged to have a test that predicts chronicity in ME patients to be removed from the UK market. 28 years since he buried the research showing abnormal immunological function.
On 27th December 2017 Ron Davis and his team announced the first meeting to discuss next years project examining those same immunological dysfunctions and what they mean for the illness.
28 lost years. Still they are receiving no government funding for their work.
Three Nobel laureates on the team, the culmination of years of high quality research findings and collaboration from the best minds in the field from around the world. We know more than ever before about what is going wrong in our bodies, but nothing has changed. Still no treatment, still no healthcare and it is still patients and their advocates funding research on a shoestring.
How many people have been lost, how many lives destroyed during that 28 year hiatus.
Mine is only one. I got sick 26 years ago. A drop in the ocean of the Missing.
33 years – my lifetime – since the CDC sent doctors to Incline Village on the banks of Lake Tahoe to investigate when hundreds of residents became seriously ill in 1984 and 85. They refused to examine any patients and instead went skiing. They called it a disease of ‘depressed menopausal women’ and renamed it Chronic Fatigue Syndrome.
47 years since McEvedy and Beard published their paper describing the devastating outbreak of ME at the Royal Free Hospital as Mass Hysteria.
They too never examined a patient and cited as evidence for their conclusions the fact that women were primarily affected.
Years later when asked why they focused on ME and what led them to make the assertions they did, the answer was that it was an easy PhD.
After decades of fighting we are finally being heard outside of our small community. Doctors whose careers were destroyed because they spoke up for us are finally beginning to be vindicated. Journalists whose articles were vetoed or edited beyond all recognition are finally getting their work on the illness printed.
And yet still – in 2018 – Simon Wessley is lauded, Esther Crawley’s work is funded, medical students are still told ME is functional, parents are still being investigated by social services when their children get sick, patients are still denied home visits, treatments and care, the NHS still only offers CBT and GET despite all the evidence showing it is at best ineffective and at worst harmful.
It’s 2018 and although some conversations are starting to change, the narrative is still being dictated by disease deniers who have built their careers on the wreckage of our lives. They still thrive and are celebrated while we disappear from our lives and watch all our hopes and dreams turn to dust.
It’s 2018 and we’re still having to convince the world that our illness is even real, that it is serious, that it kills. We’re still fighting the prejudice that says that we’re delusional, neurotic, that we are the ‘worst kind of malingerers.’
Some days I am sure the truth will eventually win out; that the end is in sight and I may even live to see it.
Other days I despair that anything will ever change. That somewhere today there is another 7 year old little girl who suddenly can’t play the games she used to and doesn’t know why. And that in 26 years time she’ll be lying awake, too sick to sleep, writing desperate words that call for justice and truth, that keep her hoping and fighting for her generation to be the last generation.
Will my generation be the last. Will hers. There must be a last. I have to believe that. I need to and she needs me to. I have to keep on going because I have no choice and because I need all this to achieve something. All the injustice and lies and suffering have to some day lead to something – all these years and lives can’t just be wasted.
Believe us. See us. Make our fight, your fight. Hope and fight with me so that, win or lose, I don’t have to do it alone.