It has taken me a little while to post this to my blog, but this is me doing the Chilli ME challenge #chilliMEchallenge, which is raising money for research into ME. I hope it gives you a giggle. If you want to take part go here for some more info. And please keep reading to see why this is so important.
If you watched this video and enjoyed it, please please PLEASE help the cause by (if you are in the UK) texting CMEC73 followed by your donation amount (eg. CMEC73 £4) to 70070 to donate to Invest in ME (or donate online here.)
If you are not in the UK, please go to this url to donate: www.gofundme.com/chillimechallenge
But now the serious stuff…
I’ve suffered from ME since the age of 14. Luckily for me, I experienced around 7 years of remission between the ages of 18 and 25, but unfortunately have been ill again for the last three years.
I am now 28, so it has been 14 years since I first got this illness, and what has shocked me the most is how little things have moved on. The treatments are the same, the knowledge is the same, the outlook for a sufferer of ME is very much the same.
What’s started to happen in the last few years though is quite interesting. Social media has allowed researchers and charities to say “look, there’s this really promising bit of research we want to do but no-one will fund us.”
And what that has given us as patients is this: hope.
Because we know now that while governments/pharmaceuticals/health bodies are providing very little funding into this illness, we no longer have to sit back and just accept that as the way it is.
The #chilliMEchallenge isn’t just a bit of fun to raise a few more pennies for our cause. It is vital to our futures. This is how we can get the research done that will provide us with: a biomedical tests so patients can be identified and given the correct advice quicker (most take years to be diagnosed); the knowledge to allow doctors and us to understand our illness; and, treatments that can do more than help us manage our condition, perhaps, dare I hope, even a cure.
And hopefully, if we raise the profile of this illness at the same time, it will put pressure on official sources to start giving us funding equality (i.e. the same funding as other illnesses affecting similar amounts of people and with similar effects on quality of life). I have put a few links at the bottom of this post to petitions and advocacy work aiming to do exactly that. If you can’t donate or take the challenge for whatever reason, please take a couple of minutes out of your day to sign your name and show your support.
Here’s a little summary of what donating via the options above will help with:
Invest in ME (UK):
This charity is funding a UK trial of a cancer drug called Rituximab in ME patients. The original trial in Norway found that 67% of participants given the drug had moderate or major improvements, compared to 13% of controls. This study has to be repeated in order to verify the results and so that (hopefully) this drug can be licensed for use in ME. Just to give you an idea of what that could mean: 250,000 people in the UK are estimated to suffer from ME. If the same percentage of UK sufferers have a moderate to major improvement on this drug as in the Norwegian study, that would mean changing the lives of 167,500 people in this country. Obviously that’s not quite how these things work and more research needs to be done before we can say how effective it will be. This UK study is part of this process and is a step towards a treatment that (fingers crossed) could dramatically change the lives of a large proportion of patients.
More info here: http://www.ukrituximabtrial.org/home.htm
They are also doing a UK microbiota study investigating if the microbiota (the ecosystem of bacteria living in your stomach) have different populations in ME/CFS and if patients suffer from something called “leaky gut”, where damage to the digestive walls leads to things leaking into the blood which shouldn’t be there, prompting a prolonged immune response from the body. More info here: http://www.investinme.org/LDR%20UK%20Gut%20Microbiota.htm
In general, this charity is helping to fund biomedical research and awareness of ME, something that is currently very much in need. I’m sure they currently have many other projects going on, but these are the two I know about. Invest in ME is also run entirely by volunteers, so all of your donations will be going into helping the cause.
The Microbe discovery project (USA and elsewhere):
Drs Ian Lipkin and Mady Hornig are investigating ME patients to see if they can figure out if there is a link between the immune response they have already identified in sufferers and the stomach’s microbiota. Abnormalities in the microbiome has already been linked to other serious illnesses, and as many ME patients suffer from digestive problems, it is a prime area for investigation. There is tons more info on their website (which explains it a lot better than me), if you are interested.
The researchers behind this study are the same behind recent headlines such as “First biological proof that ME is real found by scientists” earlier this year.
Plus, they’re also good sports, and have taken part in the #chilliMEchallenge themselves (although I have just realised that in the US they are chilis, not chillis). Watch it here.
Advocacy
If you’ve read this blog and would like to help but don’t know how…
If you’re in the UK: sign this petition asking for more funding for ME research and for more education for medical professionals on this condition: http://my.meaction.net/petitions/fund-research-into-cfs-me-and-educate-health-professionals-1
Or if you have a bit more time on your hands:
If you’re in the UK and are a bit more aware of the condition and have a bit more time on your hands, you could help shape research in the NHS by making a research suggestion. https://aprescriptionforme.wordpress.com/2015/08/06/help-shape-research-in-the-nhs/
If you’re in Australia and suffer from ME you could fill in this survey which will contribute to reforms in the Australian healthcare system. http://www.meaction.net/2015/08/12/australias-discuss-primary-health-care-for-chronic-conditions/
Or in the USA, help #MEaction get ME in the 21st Century Cures Act. See how you can help here: http://www.meaction.net/2015/08/17/lobby-congress-for-nih-funding/
Many thanks,
Laura (and her pen)