I am tired of chronic fatigue syndrome is misunderstood

As said Jacquelyne Frroeber

I moved to Manhattan in early twenty for a job in television production. I worked as a producer for shows at ABC News and Showtime, and I loved the rapid pace of the track and the city. Between work and friends I was constantly on the road and there was never a shortage of fun things to do.

But everything changed when I was 26.

I started to get joint and muscle pain that I couldn’t explain. My fingers and toes constantly pulled – as if they had fallen asleep – but I had problems sleeping and terrible brain fog.

One afternoon I felt good enough to walk over the Williamsburg bridge to meet a friend, but then my whole body felt like it was on fire. My lymph nodes pulled out of my neck and my throat was so painful that I could barely swallow. I knew something was wrong.

The first caregiver (HCP) I saw saw a number of tests, but could not find anything that my symptoms would explain. He referred me to different specialists who have all said the same thing: we don’t know for sure what is wrong with you. There were times when an HCP thought we were close to a diagnosis, but it was never checked.

Months after the rotation of references I had an appointment with a well -known neurologist and I crossed my fingers that he would have answers.

“Do you have a boyfriend?” he asked.

I was silent. No question I expected. “Not now,” I said.

“All your symptoms would get a lot better if you had a boyfriend,” he said. “Women of your age must have friends.”

I was shocked and chuckled uncomfortably. I thought he made a bad joke on his way to a diagnosis. But it turned out that a friend was his real solution.

I visibly shaked the appointment. I wondered how in 2014 a woman seeking medical help for an unknown health state could be treated so badly. Years later I would learn that women are considerably more likely not to report that they are not being taken seriously by medical evaluators – a pattern that extends much further than just one bad doctor.

Unfortunately Dr. Boyfriend not the last HCP that didn’t take me seriously, and my symptoms only got worse. Eventually I had to cancel my job to see HCP’s full -time.

Around the ninth wrong diagnosis, I realized that if I didn’t discover what was going on with me, nobody would. For months I spend the little bit of energy I had about information about the internet and in medical magazines.

One day I read about Post-exertional malaise (PEM)That is when symptoms such as pain, fatigue and brain fog flares after physical, mental or emotional activity. My mind immediately went to the time that I crossed the Williamsburg bridge and I cried. I knew I had my diagnosis. PEM is a characteristic symptom of Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). A complex, seriously debilitating physiological disorders that can influence the entire body.

There were two specialists in Manhattan and both diagnosed me with the condition. I was relieved to stop the carousel of random HCPs, but destroyed that there were no treatments or medicines approved by the FDA for me/cfs.

It was also extremely frustrating to finally have a diagnosis, but when people looked it up, she was only “chronic fatigue syndrome” and think I was just tired. I would send people medical articles and try to explain the wide range of symptoms – electric shocks in my arms, serious brain mist was not closed – but there were no mind – state is real.

In 2016, not long after my official diagnosis, I had a huge “crash” or flared up with symptoms. My lymph nodes and throat were swollen and painful, and my legs no longer worked well as they had become jell-o.

I knew something happened and it wasn’t good. I greeted the first taxi I saw outside of my apartment and immediately went to my parents’ house in Connecticut.

I had developed very serious ME/CFS and could no longer make the simplest movements. I couldn’t wiggle my toes or bend my fingers. Even the sucking movement of a straw was a struggle, and the smallest sip of a smoothie took everything out of me. My parents hired carers to help me with basic tasks such as brushing my teeth and turning my body so that I didn’t get beds.

The worst thing was that I lost the ability to speak. I was trapped in my own body without a way to communicate – a hell that I would not wish for on someone’s worst enemy. I suffered every day every day, but losing my voice was torture.

Without the FDA approved treatments available, I received countless off-label medicines to see if something helped to improve my condition. I knew that some people with me/cfs saw improvements with off-label treatments but not everyone does that.

Fortunately, after 2½ years I started to be completely bedbound, showing improvements. I gradually started talking again and switched to simple tasks of quality of life, such as the use of an iPad.

And after I finally got my voice back, I knew I wanted to use it to make this poorly understood state aware. In March 2024 I launched #Notjustfatigue – An educational source for everyone, from government officials to friends and family to find out more about me/cfs and the stigma around it. Unfortunately, decades of wrong information have taken a toll on how we view this debilitating, chronic illness. It was not long ago – 2017 – that the Centers for Disease Control and Prevention Effort and cognitive behavioral therapy recommend as treatments for me/CFS. Since then they have removed the recommendation, but no progress has been made with regard to treatment options.

More recently, #notjustfatigue collaborated with researchers to the Invisible sick report – The first extensive survey that investigates the economic impact of ME/CFS on individuals and families. The survey showed what I had guessed: almost all people (94%) with me/cfs saw some interruption in their professional life. And 1 in 4 said their diagnosis forced them to leave the workforce completely.

People with me/CFS who were able to work retained on average only 57% of their pre-illy income. Women were struck particularly hard and only maintained 49% of their earlier income compared to 63% for men. Perhaps the most meaningful, almost half of the women reported not to be taken seriously by invaluators compared to a third of men.

Because of these tangible wrinkle effects of ME/CFS that I have met with conference employees, it is to argue for government financing for clinical tests. If a person who has been bedding for nine years because of the condition, I know that hope is what you are keeping on, and what we really need are clinical tasting. We must know the people who have improved, why they have improved and can improve in the same way if other people can improve. There are millions of people who live with me/CFS. Everyone can get it at any time and women are three times more likely to develop the condition than men.

It has been almost a decade ago since my diagnosis, and I am more than ready for progress. It is frustrating to think that if the government had invested in finding treatments for the disease, my life might be different. But my focus now takes it day after day and sticks to the hope of the future. Hope that doctors will be fully trained about ME/CFS at the medical school and there will be specialists and medical centers and treatment options for people who live with the disease. It is what everyone earns with me/cfs.

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