May 13th is my birthday, and each year when ME Awareness Day comes round on May 12th, I think that what I’d really like for my birthday is to feel well. It is one of those taking stock days, a bit like New Year’s Eve. This year on ME Awareness Day I am dressed up as a Princess and hoping for a fairytale ending (along with others on my sponsorship team #teamprincess). Our ultimate fairytale would be finding a cure for this illness that has locked us away from the world.
However, we expect the power to break the hold of this neurological condition will come from a science lab and very clever people, rather than a kissing prince. Help us by raising as much awareness as possible (in order to create more demand for research), and donating to ME Research UK (read my princess fairytale in this post).
Please support me and my fellow Princesses. I am happy for donations to count as birthday presents.
You can also donate to ME Research UK by text. Simply write “TIPS48 £2” and send to 70070 to sponsor me.
Lack of Research
Last year I wrote a personal account of my experience of illness. Fortunately 12 months on I have seen some improvement thanks to reading the recent research about the overlap of Postural Tachycardia Syndrome (PoTS) and ME and a cheap heartrate monitor. Once a doctor recognised that I had PoTS he started me on Beta Blockers straight away and within hours a number of disabling symptoms had improved (although I remain mostly housebound: it is still a slow process overall).
Research into ME is severely lacking leading to confused diagnosis, worse symptoms when symptomatic treatment already exists and delays in understanding the cause and cure for this condition/s. In fact research funded by ME Research UK revealed that around 40% of GP referrals initially diagnosed as “CFS/ME” turned out to be different conditions (it is crucial to diagnose correctly for both appropriate treatment and accurate research). Also, a related difficulty is that once someone has a correct (or incorrect) CFS/ME diagnosis it can be hard to get new and changing symptoms taken seriously. I think this is a problem which requires greater awareness.
Studies indicate that most people with ME/CFS are unable to work to full capacity, and that a significant number (from 10 to 25%) are effectively house or bed-bound. The prevalence of ME is higher than HIV infection (in the UK up to 240,000 compared to 100,000 HIV). However, a US expert on both conditions summed up the research scenario well:
“My H.I.V. patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in the care of their families. I split my clinical time between the two illnesses, and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V. But C.F.S. [ME], which impacts a million people in the United States alone, has had a small fraction of the research dollars directed towards it…” Nancy Klimas
The Pubmed international research database presently lists 60,480 articles on MS, compared with an all-time figure of just 6,410 for ME/CFS (which is twice as prevalent as MS). From 1990 to 2012 no proper biomedical studies on ME/CFS were funded by the UK Medical Research Council. The MRC finally funded 5 small studies in 2012, but no further studies were funded in 2013 or 2014, clearly indicating to researchers that this continues to be an unsupported area to specialise in. The UK government has spent more money on immediate repair of Eastbourne pier than 30 years of biomedical research for ME. (thanks go to Graham McPhee for some of these statistics)
Research into ME/CFS is desperately lacking. This must change.
Why Fundraise for ME Research UK?
ME Research UK is a funding charity which moves biomedical research into ME/CFS forward. In 15 years, it has funded 38 specific research projects in the UK and overseas, more than any other single organisation in the world outside North America.
ME Research UK is good at providing seed funding for new research ideas. It is also funding ongoing work in immunology, complex systems approaches and the genetic side of ME. For example, pilot research headed up by Jonathan Kerr indicated an 88 gene signature which further blinded study then showed can differentiate 2/3 ME/CFS patients from controls (but problems with clinical definition make it unlikely that everyone with a current ME/CFS diagnosis actually has the same genetic problem). This led onto research indicating 21 determinative SNPs alleles (small genetic changes) that are significantly associated with ME compared to healthy controls or depressed patients and 148 further SNP alleles associated with possible subtypes. The next step is to compare further groups of people with ME against those with similar conditions. The possible outcome of this could be an easy diagnosis based on taking one sample and assigning patients to subgroups so that they can receive specific therapies suited to them. After the diagnostic mess that has plagued ME, this would be a big step forward.
This is why I am dressed up as a Princess today raising money for ME Research UK. For more information about their research download this booklet http://www.meresearch.org.uk/wp-content/uploads/2014/05/research-overview.pdf
You can also donate to ME Research UK by text. Simply write “TIPS48 £5” and send to 70070 to sponsor me.