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, it was about as obvious an outcome as the Bibby Stockholm being shut down on the same week as opening, but just like Sueellen and Co, I crossed my fingers and hoped for the best. Always a good strategy for an energy-limiting, exertion-punishing chronic condition, and for performative cruelty masked as “effective” immigration policy.
So, what’s new? I got within touching distance of that old baseline, managing the exciting heights of doing some dishes, watering some plants and even a couple of social events with people that don’t live in my phone. But due to attempting to treat a symptom of my current post-jab adverse reaction state with a medication leading to another adverse reaction, not only did the old baseline fall away but my current one disappeared into the distance too.
Living with M.E. is walking a tightrope. As most of us have no adequate support from the medical profession we are often left to figure out how to treat our symptoms ourselves. So much so that the community is organising and crowdsourcing its own treatment like the amazing project Remission Biome. I haven’t been able to explore their treatment protocols yet because I haven’t found out why I react to pretty much any intervention I try. Getting it wrong can mean weeks if not more of worsening symptoms, or even new ones, and falling way back in terms of functional ability (how much you can actually do in a day). And after you get it wrong more than right too many times, the only way forward can appear to be to do nothing. In my case, literally. Staying still and quiet has been the only path to recovery that has worked for me so far.
But, before I depress you more than the thought of the next Conservative Party Conference, or any Party Conference for that matter, there is a little sliver of light on the horizon: This government, yes, this one, has announced it is open for consultation on its Interim Delivery Plan on ME/CFS, and it’s not bad. It’s not superb either but I’ll take the win. I may even have to compliment a Tory, although, so far its all just words and we know how well that works out for them. Nevertheless, it could be an indication that our message is starting to get through.
We also had an incredible boost from one of our most steadfast and empathetic allies, Ed Yong, in an article exposing the myths of fatigue and cultural attitudes to people with energy-limiting conditions. It was a salve to the absolute battering our community had just received from churnalists cut and pasting Press Releases for eager editors doing the bidding of forces that refuse to let go of their delusions (and egos and incomes). According to them, the majority of the scientific community, NICE, and now the UK Government, are wrong and they, a small group of well-placed psychiatrists and FND specialists, are right. If you are wondering what an FND specialist is, think misogyny, hysteria, coaxing women’s wandering wombs back into place with fragrant sweetmeats, and you’ll get there.
Well that’s as much as I can muster today. Until the next time I can appear out of the mist like a tiny magical dancing village in Scotland, I am going back under the covers to do more staying still and quiet, and hopefully ride out this PEM.
Writing and M.E. 