Please go away. Leave people with M.E. alone. We see you now and nearly every other rational, responsible scientist sees you too. You are abusive, ego-driven little children who cannot deal with reality so you are trying to bend it to your will. You bait our community with the hand-wringing pretense of "think of the… Continue reading To all FND/BPS opinion piece generators
Tag: M.E
Sink or Swim: How to help people with M.E, helpfully.
Help. What is being helpful? I contemplated this after issuing another plea to people for help with advocacy who do not live with energy limiting/exertion punishing conditions such as M.E. and now Long Covid. I then posted a vent on Twitter with this analogy which I have since developed: Asking for help from a person… Continue reading Sink or Swim: How to help people with M.E, helpfully.
Mini-Roll: PEM, plans and the cut-and-paste Press
I really wanted to write a wee mini-roll post today. For a while now I've been thrashing about in the murky seas of Twitter, now the unenigmatic "X", as well as the pristine, sanitised swimming pool that is Zuck's Threads, so it seemed a good time to do an update. Then PEM hit. I mean,… Continue reading Mini-Roll: PEM, plans and the cut-and-paste Press
Mini-Roll: Social noise and evil genius
Last week and the weekend held two big events for me: M.E. Awareness Week and Eurovision. For the former, I had written a fictional story about living with what is now firmly moderate M.E. I also waded back in to the increasingly scummy waters of the bird site where a lot of the M.E. community… Continue reading Mini-Roll: Social noise and evil genius
Mini-Roll 2.0 – What a day this year has been
There are three days that exist for me between January and April: my husband's birthday, Imbolc (aka St Bridget's day where I do some hippy crystal-meditationy stuff) and my birthday. The rest of the days are just that: REST. If I do get to do anything outside of these days it's a bonus. I have… Continue reading Mini-Roll 2.0 – What a day this year has been
Mini-roll
M.E. Life, politics and social angst The posts below are now an archive. Latest entries for what is now Mini-roll 2.0 can be found in Latest Work. Each entry is usually no more than 2-3 mins to read. What is a mini-roll? Inspired by the UK "mini" Budget, I'm starting a series of "mini" blog… Continue reading Mini-roll
Dear M.E. Ally
It's about Time Dear M.E. Ally This blog post is for you, and it's about Time. Time as something finite, something precious and something unequally distributed amongst us, especially pwME. (The abbreviation pwME is a shorthand for people with M.E. used on socials which I will be using here). Settle in as it’s long and… Continue reading Dear M.E. Ally
Shake it UP
Did you know in the UK that if you got sick and your doctor recommended a non-pharmaceutical therapy that made you worse there is currently NO mechanism to report to this? If they prescribe drugs that cause further sickness then we have the Yellow Card reporting system but if it's physical exercise or psychotherapy which… Continue reading Shake it UP
Undercurrent
I don't have an invisible disabilty, I have a disability visibly ignored.You might, if you want, see it in my eyes if you look close enough; in my voice, with a keen ear. There's even, sometimes, a smell. Sickly sweet. But yes, there are no obvious signs - no chair nor stick, and likely a… Continue reading Undercurrent
ME and the Virus that had never really gone
(This is the third part of my M.E story. If you haven’t yet, I’d recommend you read parts one and two, here and here.) In the early part of 2010 I packed my bags and headed to Peru. I had decided to have one last adventure before hitting my forties and quickly found myself 3000… Continue reading ME and the Virus that had never really gone
Writing and M.E. 