ME Patients learn early on in their illness that Hope is often fleeting.
For decades, we have been neglected, abused, ignored and patronised by the very medical professionals we turn to to for help. We learn to stop hoping to receive the same level of medical help, support and treatments that patients of other phyically disabling illnesses expect and rightly receive.
But last week, when I heard that, finally, right here in the UK the world's largest gentetic study to uncover the biological roots of Myalgic Encelphalomyelitis, led by a partnership of patients and sceientists, had been awarded £3.2 million...well, I broke down and sobbed my heart out.
You see, it sparked something in me that I had not felt for a long while: Hope.
Genome-wide association studies have previously helped uncover the biological roots of many other complex diseases, including Alzheimers and Type 2 Diabetes so I understood that this funding could be a game changer for ME Patients and their Carers; it could help pinpoint the genetic causes of ME and guide drug development. For the first time in decades, I began to hope that this study could help Scientists finally understand this cruel disease and ultimately find treatments, and who knows, perhaps even a cure.
But to work well, the study needes to recruit around 20,000 ME Patients whose DNA will be compared wtih that of a similar number of non ME matched controls. These will be people from a similar population who do not have ME drawn from the half million strong UK ME Biobank.
I have signed up to participate in the study....all that will be required is a saliva sample, so even Very Severe ME Patients can be included. If your loved one would like to be signed up, I have posted below the link to DECODE ME team, where you can find out everything you need to know....