What Is Millions Missing?

My name is Jess. I became sick with Mono age 14. Became worse age 18. Full time ‘disabled’ since 19. I miss living at University. I miss walking with my friends without hurting. I miss the goals I had. I miss feeling ‘well’.

If you’ve been on social media at any point the last day or two you’ll have probably seen a little hashtag floating around #millionsmissing. This hashtag is to help ‘promote’ more campaigning and more research into the unknown cause and treatment of ME/CFS. Chronic fatigue syndrome can strike anyone, at anytime. Unfortunately ladies, we’re more prone, but yet again, science has no idea why.
When diagnosed with life-long illnesses you do have to get used to a ‘new normal’, a new state of mind, set yourself new limitations and forget your old ones as much as possible. Many people around the world have been leaving their shoes outside, or as far to the outside as the person can get (backdoors, porches, even bedrooms) to symbolise the person they ‘lost’ or ‘used to be’ alongside a note explaining what they miss the most, and what ME has taken from them. These shoes with no person standing in them, around the world, symbolise how many lives ME has taken.

Most of them though, are still living.

The thing is, heart disease, diabetes, many auto-immune disorders can’t be cured, but theres lots of help and research out there, or at least more than if you’re diagnosed with ME. When diagnosed it’s usually after an extremely lengthy period of fighting with medical professionals, and after the fight for a diagnosis it’s typically “but theres nothing we can do”. Both the diagnosis and the typical after-script of diagnosis was deflating for me.

How can one even begin to try and comprehend the amount of young people, like myself, taken out of degrees, stripped of their jobs and social life. The lives of those age 8 with severe ME who have the same feelings of illness of those in their last stages of cancer, but they don’t pass away, they don’t endure drug after drug, they’re just kind of… left. How is that fair? How is that humane? How can someone be promised a specialist appointment only to be made to wait 6 months to be taught how to ‘rest’ properly, because after all chronic fatigue is all about your sleeping patterns right? wrong.

We’re way past the stage of this disease being slaughtered and ‘impossible’. We all know its real, so like any real disease or condition, there has be a reason behind it. Yet we’re lacking this information. Finding the root cause can make treatment so much easier.

Please go over to millionsmissing.org and have a look at what the UK is getting involved with around the world.



5 thoughts on “What Is Millions Missing?

  1. Hi Jess,
    I am so sad that you are in the middle of this awful disease. I hear your need for hope and encouragement. I too have been hit by this truck, life just sort of stops. Its initially such a shock and then so very frustrating. Particularly when some medics definitively asign the symptoms as being of psychosomatic origin. I fortunately found a very competent Consultant and after thee months recovered for six months. Then had my first relapse for 6mths. This disease has its own agenda. My niece recovered after 5yrs. So have hope and if inclined research. I found on my journey on youtube a doctor called Dr. Jose Montoya, Stanford University, US. He valides this awful disease and gives some keys pointers and advice during some of his lectures. Its interesting that you became ill post mono. I became sick on both occasions after a viral infection. This can burn itself out and with patience you can grow in ways other than expected. Mitochondrial dysfunction is another theory behind fatigue. You can google this if you feel like it. Well Jess you are young, so keep your heart fresh and be hopeful. I will pray for you each day and my last word is be strong and always hope.
    Kind regards,


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