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Why My ME/CFS Diagnosis Meant Devastation, Not Answers

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I’d been feeling a bit off for a few weeks. I felt a bit sluggish and extra tired when I came home from work. Then my partner and I decided to have a house party to celebrate our new home together.

That day I didn’t feel right but I pushed through. I seemed to have an unquenchable thirst. I went to sleep on the bed while most of the guests were still there. I awoke to find myself in a world that was too bright, too loud, that drained my energy dry and left my skin with roaming numbness.

The doctors couldn’t find anything wrong, except for dehydration. It was put down to me drinking alcohol on the night of the party. Even though I’d also drunk gallons of water. Even though this was days before my bloods were taken. Even though my bone-crunching exhaustion was not fading.

I gradually became more ill. By the time I was unable to make it into the office to work anymore, I was sleeping 10 hours at night and four during the day. I was thrown from doctor to doctor. None would see me while I was booked in to see another.

I spent months and months thinking: “I need to know what’s wrong with me.” I thought that was the answer. I thought knowing what was wrong with me would be the thing that brought me back to full health.

I couldn’t have been more wrong.

A diagnosis can be many things. It can be trigger for treatment. It can mean the doctor gives you a prognosis, an idea of what to expect. Or if you have been living with an illness for years, it can be a vindication.

It may be that those who fight long years to be diagnosed with myalgic encephalomyelitis (ME) do feel a certain amount of vindication. But for me, what that diagnosis meant was a prison sentence.

It meant suffering from an illness that your doctor couldn’t really explain, couldn’t tell you what to expect, couldn’t tell you if you would get better.

Crucially, “You have ME,” did not mean: “We can fix you.” It meant that my only treatment options were ones based on a now-debunked piece of research called the PACE trial. The choice was graded exercise therapy or cognitive behavioral therapy.

These are treatments based around the idea that ME is caused by or prolonged by illness beliefs and behaviors, which translates as: we may have been ill initially but now we are only ill because we continue to think and act like we are.

However, there is ever-building evidence of the physiological nature of this disease. Researchers around the world are finding disordered metabolism in ME patients and are picking apart the mechanisms of our faulty energy production.

To be only offered treatments that are based on faulty logic and have no evidence-base means we currently have no effective treatments at all. In fact, a patient survey by the ME Association revealed that patients can actually find these treatments harmful.

This isn’t a story that ends on a happy note, but it does end on a hopeful one. One of the few benefits of that diagnosis was finding an online community of inspirational advocates for this disease who are fighting to make sure this neglect and harm to ME patients does not continue.

There are international protests taking place on May 12th in front of health departments and in public places to shout to the world: we are here, we shall not be ignored any longer. These are called the #millionsmissing protests for the 20 million people worldwide missing from their lives because of ME.

And ME patients are petitioning the U.K. government to debate the fact there is currently no effective treatment offered to ME patients. If I could ask one thing of you today it is this: sign that petition, share the protests, help make our voice louder.

I want to make sure that for future generations the words: “You have ME,” mean, at the very least: “there are proven treatments you can try.”

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Thinkstock photo by Michael Blann

Originally published: May 1, 2017
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