ME treatment

Hello! A few lovely people suggested I make this Go Fund Me so here it is. Please don’t feel ANY pressure to donate, I know we’re all struggling and there are so many people who need help. I’ve never asked for money without offering anything in return, but I have nothing to offer you for now except gratitude.

I have had ME/CFS for ten years. It started with a fracture to my thoracic spine, followed a few years later by a bad bout of viral tonsillitis which, looking back now, was most likely glandular fever. It culminated in a ‘stroke-like event’, a mysterious week where I suddenly had left-sided paralysis and couldn’t walk or form words. That passed, but I never recovered fully. Here is a link to a good description of ME symptoms: https://www.actionforme.org.uk/get-information/what-is-me/me-symptoms/ - I have all of these. The documentary ‘Unrest’ is also a really good way to learn what it’s like to have ME, it’s on Netflix and I really recommend it.

I’ve gradually seen my illness progress over the years, usually caused by overexerting and the crash that follows. On this scale of severity, I am classed as ‘severe to moderate’, with a 60% loss of functional capacity. I can still work about 15-20 hours a week, but in exchange I sacrifice most other elements of my life, from social activities to hobbies, housework, self care like showering and cooking. I have to rest more than 50% of each day, meaning I lose about 28 hours a week compared to a healthy person. I miss getting to be spontaneous and active. I miss brushing my teeth without having to lie down to recover. I miss going on a night out and not having to write off the next two days to be in pain and unable to get out of the flat. Most people with my level of impairment from ME aren’t able to work, but I am a working class person in London trying to survive under capitalism, so I have to sacrifice other things instead. Even pushing beyond my limits regularly (which is part of why I’m getting gradually sicker) I still live below the poverty line, although I’m much luckier than many people in that I live with my partner and can share costs.

I have lost faith in the NHS when it comes to ME/CFS after a series of shitty experiences, the latest being my GP telling me: “No one is interested in learning about ME” when I asked them to read their own guidelines for treating patients with ME. Here is an article that touches on the systemic issues in how ME is treated: https://www.theguardian.com/commentisfree/2024/mar/12/chronic-fatigue-syndrome-me-treatments-social-services You might have seen recent news about the investigation into the death of Maeve Boothby O’Neill, or about Karen, Millie and Carla who have been experiencing similar treatment this year. Or maybe you’ve seen the stories of people with ME in Switzerland or Canada who have been offered euthanasia, often while also being denied care or benefits. As you probably know, my wee brother died because of severe ME in 2019 and part of the reason for him getting sicker than me so quickly, although I developed ME first, was the harmful treatments his NHS doctor recommended. When it comes to ME, the NHS it at least 20 years behind the science, and I can’t wait that long. If I keep declining, I know the system won’t be there to catch me.

There is an osteopathic treatment, a specialised form of lymphatic drainage, spinal and cranial osteopathy called the Perrin Technique. It has some promising evidence behind it, although it was quickly deemed too expensive to be tested further for NHS use.

I’m a pretty sceptical person, especially when it comes to expensive cures for this illness, but reading up on the Perrin Technique fills me with hope. For the first time, I conform exactly to a ‘typical’ pattern, and there are a lot of signs that this is the treatment I need for my type of ME. Of course, it might not work. It might put me into remission completely, or it might not cure me, but ease my symptoms to the point that I can have a less frustrating and painful life. I think it’s worth a shot! Here is some more information about the theory behind it: https://theperrintechnique.com/about-us/

This treatment involves weekly sessions for at least 12 weeks, followed by a gradual tapering. Based on an assessment by a practitioner, the estimated treatment length is 18 months, but it’s hard to say how frequently I’ll need the sessions after the first 6 months or so. The first six months alone will cost around £2000. It will also most likely make me worse before I see improvements, and it’s vital not to push yourself into a crash during the treatment. The recommendation is to find your limit, and do half of that. Because I’m already consistently pushing beyond my limits even working part time, halving my limit means I might be housebound for at least some of it. But those bills don’t go away! Because ME is so complicated and poorly understood and also the Tories ruined everything, I’ve really struggled to access appropriate benefits, so in an ideal world I’d love to raise enough to be able to not worry about money and to be able to truly prioritise my health. I’ve added £3000 to the goal to allow for six months with less pressure to work all of my many jobs!

I am not expecting to meet this goal, but I thought it would be useful to give an accurate picture of the costs of this treatment, both for those who want to help and for those who have ME or Long Covid and are interested in exploring it for themselves. I know this is a TONNE of information and please ask if you have questions.