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[THREAD] This is the most important article I have written to date, and may be the most important one I will ever write. I never thought I would be chronically ill at 21, I definitely never thought I would be embarrassed about it. https://eachother.org.uk/covid-and-chronic-fatigue-we-must-learn-from-me-patients-suffering/
But the narratives about M.E patients as lazy, unhinged or militant activists are so widespread that it makes it incredibly difficult to navigate this illness without doubting your entire history, motives and self.
I write this as someone with a now milder form of the illness; the despair of those more severely impacted must be unbearable. The negative narratives about M.E patients, coupled with a lack of research and harmful treatments, have impacted real patients and increased
the likelihood of long term disability. As my piece says ‘The heartbreaking reality of GET is clear from the experiences of ME patient Taliana*, who told me: “GET exacerbated my symptoms, and left me worse than I was before. I don’t think I will ever recover from it.”
Sometimes it feels like there is little hope left in the M.E community but we can mobilise the increased media attention to #LongCovid to ensure all patients are treated with the dignity, and care they deserve.
Often the criticism used against M.E patients is that it is mainly patients rather than scientists criticising current treatment. Firstly we do have amazing researchers such as all at @OxMEDiscovery @keithgeraghty and @davidtuller1 which show this not to be the case.
But even without these voices, ignoring the patient experience is a dangerous route for medicine to take. Patients must be central to all dialogue about future care in order for care to be dignified and in the patient's best interest.
Medicine exists for patients, and this must never be forgotten.
And if you are reading this and wonder what you can do to educate yourself and empower the M.E community here are a few ideas. Firstly, if you want to understand why M.E patients are demanding change and understand the history of this illness then watch @unrestfilm by @jenbrea
In terms of educating yourself from patients' experience you could follow @gigi_vs_the_galaxy on instagram, @DafoeWhitney or @JourneyFog on twitter.
We must transform awareness into more funding and better treatments. You can donate to research groups such as @OxMEDiscovery or charities such as @MEAssociation association and @actionforme
You can also read the Hansard record of politicians such as @CMonaghanSNP who have explained why M.E patients need care, funding and dignified treatments now more than ever. She explains the situation far more eloquently than I can.
For all M.E sufferers out there, I only got the chance to tell a few of your stories in the article. But I hope one day all our stories are told and our truth is believed.
*I will also be providing an audio recording for M.E patients or others for whom audio is more accessible. I will upload this to my twitter as soon as I am able to (likely by the end of the weekend)
I should also add @jayletay book which recently won @PeoplesBkPrize for non fiction as another fantastic resource for educating yourself on M.E
