Many do not know my connection with ME. This isn’t for me, this is for my wife Jemma.

It took years for us to figure out what was happening to Jem, even more to get a diagnosis. For a long time we couldn’t figure out why she seems to get ill every couple of months, why she caught every virus going, why exercise caused so much more exhaustion than most? In a post covid world the answer finally presented itself, ME.

It has been a long and hard journey of a slowly shrinking world.

First Jem had to give up her career as an IT Delivery Director, one of the best I’d ever worked with, as the efforts became too much.

Next came giving up her passion career as a Chef and owner of her own catering business.

Then came giving up a life outside the home and eventually any real independence at all.

At the lowest point, Jem couldn’t leave the house for months, was bed bound most days and needed help doing anything to care for herself. Limited to 60 steps at a time doesn’t get you far. The noise of a TV programme for 20 minutes being too stimulating, or traffic outside the house too much, makes the body and mind a prison.

Every virus going is potentially several months of life drifting passed for no seeming gain. Immunocompromised life, with the family second guessing every cough or sneeze, is hard. Being that odd person on the train still wearing a mask now and having to give up so much of life to be home to look after her has totally shifted what we expected.

Holding down a full time job, raising our children, being anywhere from part to full time carer, keeping a home, it has been a lot, and there is very little help out there. A diagnosis takes a long period of suffering symptoms and trying to rule everything else out with ME being an answer of last resort. Even when the diagnosis is made, there is very little the NHS can or will do. There is no specific treatment just management of some symptoms; “rest as much as you need to, but not so much as to decondition” is as good as it gets; life on a knife edge. There needs to be more understanding of the cause and more options for treatments, this only comes from research and education.

We have turned a corner, things are improving. Now walking 600 steps at a time, sitting up for an hour or 2, able to cook 1 meal many days, an electric wheelchair giving some independence and the ability to socialise just a little bit now, seems so little, but is such a big step forwards.

But there is still so little known about ME. Many doctors aren’t even sure it’s real, let alone know causes or treatments. I can tell you from experience; it’s very real, and whilst some similarities with Long Covid mean we are finally getting funding into research, more must be done.

So, please help us to support people with ME and their families.

ME (Myalgic Encephalopathy), or Chronic Fatigue Syndrome, blights the lives of 250,000 people in UK today. The smallest exertion can floor them; their joints and muscles ache unbearably; restful sleep eludes them; and ‘brain fog’ clouds their thinking. It changes lives drastically – disrupting study; making work impossible; and straining family relations to breaking point. Many sufferers cannot leave their homes. There is no known cure.

Please help us to help them.