I will be swimming for my sister Jane who has suffered from this terrible illness and related conditions EDS & POTS for 21 years. Like 25% of ME sufferers she has the severe form of the illness. As well as the hugely debilitating neurological, cardiovascular and auto-immune symptoms, it’s the gastric symptoms & the agonising neuropathic pain that has dominated for many years. Every day is a battle for Jane as her symptoms leave her in constant pain and even the smallest activities can be a painful endurance. For many years it has been a struggle for Jane to simply eat enough as eating any food exacerbates the terrible intestinal pain which makes her days intolerable. Despite trying many different courses of medication, even very strong drugs (including opioids) barely touch the pain and leave her with nasty side effects.
Throughout this time it has been an ongoing struggle to get any specialist medical help or investigation into her condition. There simply isn’t the expertise, knowledge or resource out there to help the 1000s of people who suffer in silence with terrible chronic conditions like ME. If an illness doesn’t fit a clear diagnosis with a designated pathway of care and treatment, it appears that little is provided in the way of care. So many people who , like Jane, suffer with ME and other very serious chronic conditions which can leave them housebound, disabled, often in constant pain & with little quality of life, seem to be just left, hidden away at home, with little if any proactive medical care. That is why it is so important that more funding goes into research, in the hope that greater understanding and possible treatments can be found.
As I do a fair bit of swimming I thought I would set myself a big challenge. The most I would normally swim in a single session is 1500m which is just under 1 mile but I’m going to aim to swim 2 miles in a session by the end of May ( although this might be early June as May is proving to be a little busy!). I have also struggled with CFS ( Chronic fatigue syndrome) symptoms for well over 10 years which mean that I regularly have days when I feel ill with exhaustion and tiredness, faint and nauseous. This makes everything difficult including any sort of regular exercise or training. This is probably one of the reasons why despite swimming regularly for well over 10 years, it has taken me a long time to build my fitness and distance.
Invest in ME Research is an independent UK charity finding, funding and facilitating a strategy of biomedical research into Myalgic Encephalomyelitis (ME or ME/CFS).The charity is run by volunteers - patients or parents of children with ME - with no paid staff. Overheads are kept to a minimum and all funds raised go to promoting education of, and funding for biomedical research into ME.Our efforts are focused on setting up a UK Centre of Excellence for ME which will provide proper examinations, diagnosis and in time treatment(s)/cure(s).