Living with Chronic Fatigue Syndrome

I saw this article yesterday and had to share it – Top Scientist Takes On Chronic Fatigue SyndromeWhile reading, I couldn’t help but identify with many topics and ideas that were discussed. Many people may be alarmed at how severe the man in this article is affected by CFS, but most of the story didn’t come as a surprise to me. Personally, I totally related to the severity of the symptoms, and from a medical perspective, it makes total sense how some people can spiral so severely. The article states,

For some patients, ME/CFS starts suddenly, with an illness or a trauma from which they never fully recover. For others, like Whitney,the illness follows a series of ailments. He was healthy as a child but caught a bad case of mononucleosis in high school and had a spell of headaches and dizziness after a trip to Jamaica during college. He eventually recovered from both.

He’d been in India for several months in 2006 when he began experiencing stomach pain, bloating and nausea. He returned weighing just 115 pounds on his 6-foot-3 frame. Then, two years later, he developed what seemed like a cold and never felt normal again.

“He went downhill from there,” his mother says.

[‘We refused to take our son home to die. We will fight with him.’]

By 2011, he could no longer care for himself. “Moving home was really devastating for him. . . . He’d worked so hard to be independent,” she says.

All along, he’d been seeing a series of doctors, most of whom told him they could find nothing wrong and suggested he was depressed.

In fact, says Andreas Kogelnik, the infectious-disease specialist who diagnosed Whitney with ME/CFS more than a year after he returned from India, “this was a vibrant, successful young man. . . . His only depression was that he had to stop doing the things he loved to do.”

“He has some of the classic symptoms that we talk about with ME/CFS, but in him they’re amplified 10 or 100 times,” adds Kogelnik, president and founder of the Open Medicine Institute, the research/clinical institution affiliated with the fundraising foundation.

Whitney has extremely low levels of several small molecules associated with energy metabolism. He also has three mutations in a gene that codes for an enzyme that helps convert folate and vitamin B12 to their active forms, a process necessary for both metabolic and immune function.

Such mutations are present in about 5 to 10 percent of the general population, but Kogelnik has been finding them at much higher rates among his ME/CFS patients.”

So many questions still remain …

Why does this happen?

What is the difference between those who are more severely debilitated, versus those who are not?

How is myalgic encephalomyelitis/chronic fatigue syndrome related to other conditions?

Only research similar to what Ronald W. Davis is working towards, will be able to truly help us understand the complexities of CFS/MEChronic fatigue. However, based on the little I do know from my own experience living with CFS/ME, knowledge on conditions that overlap with CFS/ME, and from what I read in this article on Whitney’s case, I can’t help but feel that so many signs point to mast cell activation disorder (MCAD) and connective tissue disorders, such as Ehlers-Danlos Syndrome (EDS). I’m sure that’s not the answer for all patients, yet even though Whitney’s story is more severe than most, it is also so similar. There are so many similarities in Whitney’s story to ones that I’ve seen and heard in the EDS and MCAD communities.

When you consider the countless articles published on EDS, Fibromyalgia and MCAD, and how these three conditions overlap with CFS/ME (i.e. research done by Dr. Theo – www.mastcellmaster.com) and other auto-immune conditions, it seems very plausible that for some, there is definite genetic predisposition and also epigenetic factors that come into play. These epigenetic factors (i.e. a virus like Mono or another impactful stress or trauma), seem to change the expression of our genes, even those responsible for the molecules that transport energy in and out of our cells. Autonomic dysfunction/Dysautonomia seems to play a role here as well.

Which condition caused which?

Again, it’s hard to say, but I think it’s even harder to deny that there is some underlying relationship between these conditions. The fact that conditions like CFS/ME are most defiantly multi-systemic and potentially incredibly severe, can’t be denied either.

Chronic Fatigue information and resources: 

Life being velcroed to the floor – 10 ways I manage the daily battle against chronic fatigue

Problems Showering with Chronic Fatigue Syndrome and Fibromyalgia

Top Scientist Takes On Chronic Fatigue Syndrome

Cognitive Changes due to POTS

Chronic Fatigue Syndrome’s new name

Chronic Fatigue Syndrome and EDS page

Breaking the Cycle of Chronic Pain, Poor Sleep, Depression and Fatigue