On #severeME day I think of my friends with very severe ME: bedbound, silent – and long for the day where they are helped, not abandoned, by doctors. Technically, I am one of the ‘severe ME’ group because I am housebound and need to spend 21 hours a day in bed – but I know how lucky I am that I’m not worse.
We mark the day 8 August, because it was Sophia Mirza’s birthday, who died after being forcibly institutionalised by psychiatrists who didn’t believe she was ill. Sadly, this still happens today to adults and children in the UK. We need change.
But on this day here are five good things that are encouraging me:
1) The #NICEisnotnicetoME campaign. What struck me was the unity of the various ME groups and charities in highlighting the harms of Graded Exercise. In particular, the #MEAction submission, written by four severely-affected ME patients in just two weeks, arguing that Graded Exercise Therapy harms people with ME, was outstanding. Its academic level and robust research, taking into account up-to-the-minute papers and articles, was of publishable quality. It should be recognised in itself as an immensely helpful resource.
I am also incredibly grateful to each and every person who wrote to their MP to highlight how the NHS is failing people with ME. It means so much to me. Thank you.
2) Graded Exercise Therapy downgraded in America. Following the extensive IOM research review of ME/cfs, the US’ CDC has quietly omitted Graded Exercise Therapy and CBT as potential treatments for ME/cfs. This is a huge victory – and we hope for the sake of American patients that it remains the case.
3) PACE Trial exposed in scientific journal. The PACE trial (used by the NHS to justify Graded Exercise Therapy for ME patients) was recently exposed in a special edition of the Journal of Health Psychology, with multiple peer-reviewed papers showing its failings. PACE trial proponents have now had to resort to ad hominem attacks to try to discredit this journal, but the papers themselves are robust, and will raise awareness within the scientific community.
4) UNREST (award-winning documentary about ME) is coming to cinemas in UK, and if people see it it will change attitudes. We need your help! – find out how you could help your town see this important documentary. Time for Unrest
5) Possible Biomarker. Jose Montoya possibly discovering a potential biomarker for ME patient’s using cytokines as indicators. Reported in New Scientist, Science, and Stanford Medicine News Centre.
It’s a frustrating battle, asking for medical equality for ME patients, but there is hope.
If you want to specifically help the severe/very severe 25% group for ME, this is a great charity to donate to: 25% ME Group – the Silence Challenge.
Over to you:
- In desperate situations, what helps you to hang onto hope?