Interesting Around the Web – May 2019

I’m going to try a new post style and gather together some of the links that have caught my attention recently. Here’s what I’ve discovered while browsing blogs and articles.

May is #MEawareness month, so in honor of raising awareness for Myalgic Encephalomyelitis (also called Myalgic Encephalomyelitis/Chronic Fatigue Syndrome or abbreviated ME/CFS) my links for this month are focused on this illness, as well as tips for living well with debilitating fatigue. This is one of my chronic health conditions, and hopefully raising awareness will lead to further research, understanding, and—eventually—an affective way to treat this condition.

 

10 Low activity creative hobbies forspoonies 

(A Journey Through the Fog)

“Creative hobbies do not have to be difficult. Many of us lack the confidence to start, but something as simple as colouring is a great, therapeutic and low energy way to express our creativity.”

 

11 Benefits of Living with Chronic Illness & Autoimmune Disease

(Healthy Habits Reset)

“If you’ve ever experienced chronic fatigue, you know that there are no words (at least in the English language) that could possibly encompass all that is: chronic fatigue.”

M.E. Patients and the Researchers that Silence Them

(Medium.com)

“In my former life, before sickness struck, I trained and worked as a journalist, and the lack of research involved in framing severely ill patients as anti-science makes my heart ache; both for my former profession, and for the millions of patients given no right of reply.“

“And what recent press coverage has left out of this debate, is that the findings of the PACE trial have been widely condemned, not just by patients, but throughout the medical profession as well.”

 

TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study – virology blog

(Virology Blog)

This is a long but very informative read. Here are several quotes that give an overview of questions raised about the PACE study and how it has represented ME/CFS.

“The PACE claims of successful treatment and “recovery” were based solely on subjective outcomes. All the objective measures from the trial—a walking test, a step test, and data on employment and the receipt of financial benefits—failed to provide any evidence to support such claims. Afterwards, the PACE authors dismissed their own main objective measures as non-objective, irrelevant, or unreliable.“

“”I have never seen a trial design where eligibility requirements for a disease alone would qualify some patients for having had a successful treatment,” said Levin, who has been involved in research on the illness and has reviewed the PACE study.”

“Ellen Wright Clayton, the panel chair and a professor of pediatrics and law at Vanderbilt University, said lack of activity could not possibly explain the scope and severity of patients’ symptoms.”

“Patients have always hated the name chronic fatigue syndrome. For one thing, the word “fatigue” does not come close to describing the profound depletion of energy that marks the illness. A few years ago, best-selling author and long-time patient Laura Hillenbrand (Unbroken; Seabiscuit) once told The New York Times: “This disease leaves people bedridden. I’ve gone through phases where I couldn’t roll over in bed. I couldn’t speak. To have it called ‘fatigue’ is a gross misnomer.””

“Previous studies conducted by the authors and other researchers, although smaller than PACE, had found that graded exercise therapy and cognitive behavior therapy led to modest improvements in self-reported outcomes, as a 2001 review in JAMA noted. But the same review also warned that the positive results on subjective measures in these studies did not mean that participants had actually improved their physical capacities.
“The person may feel better able to cope with daily activities because they have reduced their expectations of what they should achieve, rather than because they have made any recovery as a result of the intervention,” stated the review. “A more objective measure of the effect of any intervention would be whether participants have increased their working hours, returned to work or school, or increased their physical activities.””

 

Finding Your Self Behind the Illness (Your Story Isn’t Over Yet)

(A Chronic Voice)

“I have an unofficial hypothesis which goes something like this: I believe those of us with chronic illness are thrown back into “identity vs. role confusion” when we are diagnosed with our illness. We are unable to physically do the things we used to do with ease and joy. We are told not to eat the things we loved before. We may not even have the mental capacity to read the things we read before. All of these things, these little building blocks of what we have convinced ourselves is “me” have been knocked over and we have to rebuild.”

 

What articles or blog posts have you read (or written) that shed light on ME/CFS?

What low-energy creativity are you going to try? What did you learn about ME/CFS?