My psychologist refers to it as “the moment you realise the world is not a safe place.” I prefer to see it as a realisation that you have no control over your life – that your carefully laid plains mean nothing, anything can happen to anyone at any given time, and there’s nothing you can do about it. For me, this realisation occurred when I first fell ill 7 years ago, and continues to occur again and again as this illness unravels everything I thought I knew about life.
There has been some really exciting research into ME/CFS lately, with a particular focus on auto immunity, discovering biomarkers and measuring biological responses in the body. Let’s hope this is an end to the era of the pointless “psychobabble” study of ME/CFS! Continue reading “ME/CFS research matters”
Warning: contains GIF
Day 17: bright colours to beat a rainy day. @andisatt #viannecardigan, worn with fair trade chicken skirt from local shop, handmade beads from market and op shop boots. . . . #mmm2017 #memademay #memademay2017 #mecfs #me #cfs #cfsme #spoonie #spoonielife #chronicillness #chronicallyfabulous #pots #dysautonomia #butyoudontlooksick #spoonfighter #disability #criplife #crip #cripplepunk #cpunk #invisibleillness #ruraldisability #MEaction #millionsmissing #thisiscfs #disability #disabledandcute #disabledandstylish
Above: an image from Me Made May. I had to cut the month short (documenting at least) due to illness.
I’ve been a bit quiet lately as I’ve been down and out with this virus that’s going around. I know, I know – there’s nothing more tedious than someone complaining about having a cold, especially on their blog! But viruses hit the chronically ill a lot harder than they do able-bodied folks. Continue reading “Do you want some sickness on top of your sickness?”
For the most part, X-Men: The Last Stand was an entirely forgettable movie. (Too many plot devices, messy direction, and how many characters can you kill off in one film?)
But there was one scene which stuck with me, and resonates now that I have a chronic illness. Rogue and Storm are debating the ethics of a new drug which can remove (or “cure”) the powers of a mutant.
Rogue: Is it true? Can they cure us?
Prof. Charles Xavier: Yes, Rogue. It appears to be true.
Storm: No, Professor. They can’t cure us. You want to know why? Because there’s nothin’ to cure. Nothing’s wrong with you. Or any of us, for that matter.
Warning: contains GIFs
It’s the bugbear of the chronically ill and disabled – that oft-repeated refrain, “why can’t you just think positive?” Not only is it disheartening to hear that your genuine challenges are the result of not thinking enough happy thoughts, this kind of enforced positivity can undermine the real, lived experiences of the disabled community, and be used as a tool to silence protest.
May 12 is International ME/CFS and FM Awareness Day, and today bloggers are joining together in a #May12BlogBomb to raise awareness of these illnesses. I should be writing about the what ME/CFS really is, the debilitating symptoms, the research. I should be valiantly trying to raise awareness for this condition that has ruined my life, and many others. But I am heartbroken and cannot.
2016 brought exciting news for ME/CFS patients. The researchers behind the PACE trials were finally forced to release their raw data, which revealed that their initial conclusions – that graded exercise therapy and cognitive behavioural therapy were the only effective interventions for ME/CFS – were unsubstantiated.
Usually the retraction of positive results would not be cause for celebration. But the PACE trial was not only unethically conducted, it contained numerous methodological errors, drew conclusions which were not supported by the evidence, and promoted therapies which are greatly harmful to ME/CFS patients. It was only due to those same patients’ dogged research and tenacity in the face of abuse that the truth was revealed. Here’s how it happened.