AN ESTIMATED 250,000 people in the UK are affected by Chronic Fatigue Syndrome, better known as ME. Kate Mincher from Eastcombe, who was diagnosed with the condition nearly 20 years ago, has written this article for the SNJ as part of ME Awareness Week, which starts on Monday.

The week following the general election is not a great time to be trying to raise awareness for the horrible illness that is ME/CFS.

However, I am hoping that some people may have had enough of political discussions and spend just a few minutes reading my story.

I really don’t like drawing attention to myself but I believe it is important to promote better understanding and so hopefully lead to the biomedical research that is so desperately needed.

I have had ME (myalgic encephalomyelitis) or CFS (chronic fatigue syndrome) as it is sometimes called for more than 18 years, after a nasty virus, and I can honestly say I have not had a day in all that time when I have felt well.

My symptoms include extreme exhaustion, often coming on hours or days after physical or mental effort, cognitive dysfunction (brain fog and discomfort in the brain after anything that involves concentration), tender areas all over the body, heart irregularities, intolerance to noise and bright light, sleep disturbance (my brain never seems to rest and I wake up feeling as if I have been active all night).

It feels as if the body is constantly in “fight or flight” mode and one of the most likely theories for this is that the adrenal system kicked in to cope with the initial virus or stress on the body and went into overdrive.

I am “lucky” in that I don’t suffer a great deal of pain, many people suffer acute muscle, joint or nerve pain much of the time.

One of the hardest things to cope with is that anything I enjoy doing, from seeing friends and family to having the occasional outing, or even watching television or reading, leads to trouble.

I may be lucky and only suffer for a short while or I may be unlucky and have a relapse lasting weeks.

People often remark how well I look on the odd occasion when I can get out, but they don’t realise that I have to be resting for the majority of the time.

Not everyone has the same set of symptoms and they can vary in intensity.

Because doctors themselves do not understand the disease, patients are often not believed or sent away with no help, and that can be so distressing.

We often try to put on a brave face, not wanting to inflict our suffering on friends or family, but life can be so challenging.

Exciting developments in the USA In the past few months there have been very interesting findings in a study at Columbia University, where the spinal fluids of people with ME/CFS were compared with those of people with multiple sclerosis and also with healthy controls.

The research results showed conclusively that ME is an inflammatory disorder, like MS, and suggest the body has suffered immune exhaustion.

This now offers the hope of objective diagnostic testing and potential therapies to reduce this inflammation, hopefully leading to an easing of symptoms or even a cure for countless sufferers all over the world.

In America ME/ CFS is now to be called Systemic Exertion Intolerance Disease or SEIDS for short, again not an ideal name but does at least highlight that it is a disease and that it is systemic (affecting the whole body).

Biomedical research is desperately needed We need to follow America’s example and start doing more research into this extremely debilitating and life-changing disease. Invest in ME is a UK charity that campaigns for biomedical research.

Their aim, as they explain on their website, is to “bring together like-minded individuals and groups to campaign for research and funding to establish an understanding of the aetiology (causes), pathogenesis (harmful effects) and epidemiology (the pattern of distribution of a disease through a population) of ME”.

This should lead to the development of a universal “thumb-print” test for diagnosis of ME and, subsequently, medical treatments to cure or alleviate the effects of the illness.

Invest in ME want to establish a national strategy of biomedical research into ME and establish a UK and European Centre of Excellence for biomedical research into ME.

Find out more about ME/CFS at www.investinme.org.