Mercy For Millions
If you’ve never heard of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) then you’re not alone. If you’ve heard of it, yet don’t understand it then you’re the majority. This is a disease that affects several different functions of the human body with an unknown cause. ME/CFS is a debilitating medical illness that is unequivocally, misunderstood and is endured by millions all over the world. There is ongoing ignorance in regard to this disease, which perpetuates a false narrative about ME/CFS. This ignorance has influenced how it’s researched and dealt with.
If change doesn’t occur, the truth will continue to be ignored and more people will be diagnosed with ME/CFS without treatment. Some with ME /CFS will find methods to help them feel better and function, and others will try to mimic the same methods, only to be left wondering why they don’t feel better as well. Some with ME/CFS are deceived by opportunists that claim to cure them and pay thousands of dollars to attend workshops that use outdated treatments which do more harm than good.
The individuals who attend are left in the same position and are fed to believe that a positive mindset will heal them. So if you don’t care now, then you may want to, because this illness doesn’t discriminate. Whether you are well educated, physically fit, and psychologically stable, you’re not immune to getting this illness. This ongoing battle continues with a lack of funding and ongoing lack of awareness in our society. On July 11, 2017, the Centers for Disease Control and Prevention (CDC) updated their treatment information by removing (CBT) Cognitive Behavioral Therapy and (GET) Graded Exercise Therapy as treatments for ME/CFS. This is groundbreaking for those with ME/CFS and paves the way for the disease to be taken seriously. Individuals with this illness are fighters and hope is not lost that one day the medical community and society will acknowledge the dire need for effective treatments for ME/CFS. I’m not just speaking as an outsider looking in. I, myself have this mind scrambling, body burying, illness.
I write this while my brain is in a fog, but determined to spread awareness for those who not only suffer from this illness, but speak out for those who have died from it. I have read about the sad souls of those who have committed suicide after suffering with ME/CFS or those who have suicide ideation as they are enduring it. I’m not surprised that those who deal with this illness feel hopeless, isolated and do anything to make the pain go away. Those experiencing the physical symptoms of post-exertional malaise, headaches, joint pain, sleep disturbances, extreme fatigue, flu like feelings and weakness are dealing with more than just the physical impact. Dealing with the symptoms is only half the battle.
The utter neglect from the medical community and the lack of understanding and awareness about ME/CFS is damaging to those who endure it. When I was diagnosed with ME/CFS more than a year ago my doctor gave me a pamphlet for ME/CFS, and offered no beneficial help to how I could fight it. He recommended (CBT) Cognitive Behavioral Therapy as treatment for this illness or to engage in (GET) Graded Exercise Therapy. I was very familiar with CBT and shocked that this was a treatment option for the physical illness. I have a Bachelor’s of Science in Psychology and a Master’s of Science in Mental Health Counseling and I couldn’t believe that CBT was recommended as a form of treatment for this physical disease. Nobody gets diagnosed with Multiple Sclerosis, Lyme disease, Lupus, or other physical illnesses and is told to get CBT as a form of treatment. CBT is a great tool for dealing with psychological symptoms and disorders including depression and anxiety caused by an illness.
Mental factors are not the causal factor of ME/CFS. There are many who have ME/CFS with no mental health diagnosis, never diagnosed with depression or any form of psychological disorder. Cancer patients may get depressed or have anxiety, but you don’t hear about doctors telling cancer patients that they will physically get better if they engage in a form of psychological treatment. When ME/CFS patients are told that their minds and body are connected and that mental illness is always a causal factor in physical illness, you are ultimately saying patients are responsible for their illness. It’s alluding to the notion that if the mental state of those with the illness change then so will there physical. And GET as is a form of treatment for ME/CFS came from an outdated study with numerous flaws. In fact, GET can actually be harmful for patients with ME/CFS and can make them much worse. Yet, because of the lack of curriculum regarding ME/CFS within the medical community, it continues to be a recommended treatment by some physicians.
This ongoing ignorance prevents funding for ME/CFS and keeps ME/CFS patients frustrated, invalidated, and hopeless. Often chronic fatigue is used interchangeably with Chronic Fatigue Syndrome, which is misleading and inaccurate. Chronic fatigue is a symptom that many diseases share; Chronic Fatigue Syndrome is an illness with several symptoms including fatigue. It may also help to point out the one particular symptom stands out so that Chronic Fatigue Syndrome can’t be confused with other disease or be confused as a symptom and not a disease. The symptom that doesn’t show in other illnesses is called (PEM)Post Excersional Malaise, which causes intense exhaustion after exertion. PEM causes those with ME/CFS to pay the price for sometimes even minor physical activity either on the same day, next day or days after. Its arduous effects are shown in many different forms such as pain, soreness, brain fog, flu like feelings and exhausting fatigue.
For instance, even seemly routine task such as washing one’s hair or hanging clothes can cause extreme symptoms. I’ve personally struggled with PEM where I would venture out to the grocery store and had to leave halfway through my shopping due to the symptoms of ME/CFS. Doing that one trip to the store may have me in bed the rest of the day or days after. It can be discouraging, but I’m grateful for the good times I do get. Regardless of the tough times, I’m one of the lucky ones. There are many who have it much worse and rely on wheel chairs to get around and experience PEM for weeks. ME/CFS ruins lives every day, yet few are talking about it. It’s only going to get worse until awareness is spread and more funding produced.
New studies should be conducted instead of the replication of unreliable research that only stigmatizes the people who have this mind numbing, illness. And if sufferers of ME/CFS have to live with this disease without proper treatment, then the least that we could get from the public and medical community is the understanding that we don’t want this to be our existence. We are not in bed due to lack of motivation, fear, laziness, some kind of psychological illness, or my personal favorite, a lack of positive thinking. Being in my bed and watching my dreams dissipate is not what I had envisioned for my life. We often get blamed for our illness in different subtle forms. Unnecessary shame and guilt surround this illness, which is only exacerbated by those who have careless disregard when it comes to the severity of ME/CFS. I try to bring awareness and exposure to the truths of ME/CFS so that it is no longer stigmatized. I hope my fellow peers and the medical community will do the same.