As I got up this morning, my brain was on its High Curiosity setting. This is part and parcel of being me – my thoughts are overwhelmed by possibilities. But for 10 years, chronic illness research has been in the cross-hairs, a target that ebbs and flows for weeks at a time.
It’s been 10 years since I became ill, disabled, and struggling to get through every day. What has improved in my treatment since that time? Just bits and pieces of symptom management. Nothing more.
And I’ve had to work hard to get these pieces of reprieve from my suffering. Spending 3 years mostly bedbound trawling through websites and academic journals to pinpoint what health condition I had, I then had to locate the handful of doctors in the UK with the right specialisms to provide the official diagnosis and prescribe medicines. All paid for privately – there are little to no doctors working in the NHS with the knowledge and ability to prescribe off-label.
There have been no changes in offerings from the NHS medical professionals. And institutions like the National Institute of Health (NIH), which are the ones that can really make a difference given the magntitude of cash they’re given, are doing a very poor job – very poor quality research and trials, despite being given the go ahead and cash to set up the RECOVER trial for Long Covid. My health condition treatment from all of these institutions still amounts to the very low hanging fruit of antidepressants, antihistamines, and a recommendation of a FODMAP diet. I don’t blame my healthcare professionals for this – education on these health conditions is scarce, high quality research is only being done by smaller, independent researchers, and using the very small bucket of promising treatments requires experience and confidence in off-label prescribing.
So the potential for improvement is a burden that is always with me, because I know that I am on my own in finding them. It has taken me a lot of training to make sure the cognitive load doesn’t tip me over the edge – I must take frequent periods of monthly sabbaticals to ensure I am living life to achieve acceptance and times of joy and contentment despite the cards that I have been dealt.
What health conditions am I referring to? What symptoms? I’m not including my multiple sclerosis in this list. My NHS neurologist has done an epic job in putting me on the right, high tier treatment and I am, for now, stable.
I’m referring to the other health conditions that I have, which are predominantly experienced by women, and have been ignored by researchers for decades – M.E/CFS, Ehlers Danlos Syndrome (EDS) and Hypermobile Spectrum Disorder (HSD), POTS, and Dysautonomia. And then there is the complex PTSD that I have from medical trauma. Which is sadly, and staggeringly, very common in our community.
I am a naturally curious beast, which I am grateful for every single day. When it works, my brain is a superb ally – both in keeping me in some periods of contentment given that I have to spend most of my time alone on the sofa or in bed, and in problem solving my way to a more comfortable existence.
But, my research is scattered between a growing number of notebooks, Trello, and random pieces of paper that I haven’t gotten around to filing.
I recently went down a rabbit hole of research via ME-pedia and it got me thinking. ME-pedia is a crowd-sourced encyclopedia of everything we know, globally, about M.E – all the research is being collated into one searchable wiki with citations by the community.
The patient community is fierce, and it contains some incredibly clever and curious people. We have achieved so much on our own despite the lack of support or money from governments and research institutions. I am so proud of the movement, the dogged search to understand ourselves and help so many others suffering in the dark.
So, why not just write my own findings, thoughts and trials straight into my blog? – I have one set up already. It might help others. It will certainly help me stay on track and maybe even switch off better from my whirring brain, with the reassurance that my findings are saved. I can treat this like any other project, with periods of focus when my brain is in my Lets-Research-the-shit-out-of-this mode, and periods of closing the laptop and walking away.
First step: Collate my list of all the amazing resources found over the past few years into a blog post and keep it up to date.
Reasoning: There IS information and support out there for these conditions outside of the NHS and private healthcare space. But we have to find it and then do our own research to determine if it’s legit. It’s hidden in the reams of bogus nonsense out there that has formed into the hole left by lack of research and also sadly from the lack of understanding, care, empathy and in a lot of cases outright dismissal from healthcare professionals.
Ahhhh. I feel better already. I’ve always loved a checklist. Let’s make this happen.