1.
BusinessWire.com: Epicgenetics new collaboration with the University of Illinois
From the article: “EpicGenetics is now moving forward in completing necessary safety testing of these immune system modulating methods with the expectation that human trials will follow soon thereafter. The recruitment of volunteers with proven fibromyalgia as defined by the FM/a® Test, will serve as the basis of volunteer eligibility.”
Note: I’ve contacted the CEO to learn more about this partnership. I hope to have more information that I can share with you soon. EpicGenetics is the company that developed the controversial FM/a fibromyalgia blood test and is planning a clinical trial to see if the BCG vaccine may reduce fibromyalgia symptoms. I’m guessing this collaboration involves the BCG trial but I’ll know for sure once I speak with the CEO.
2.
Neurology Today: Should gabapentin be a controlled substance?
From the article: “To date, seven US states (AL, KY, MI, ND, TN, VA, and WV) have classified gabapentin as a controlled substance. In a petition filed with the DEA and the U.S. Food and Drug Administration (FDA) in February, the nonprofit advocacy group Public Citizen called for making that regulation federal, in an effort to stop increasing abuse and diversion.”
3.
Pain News Network: UK warns pregnant women about taking pregabalin
From the article: “The birth defects associated with pregabalin primarily involved the nervous system, eyes, face, urinary system and genitals. The MHRA – which regulates drugs in the UK – cautioned pregnant women not to stop taking pregabalin without talking to a doctor first.”
4.
HealthRising.org: $8 million clinical trial of a mitochondrial booster underway in ME/CFS
From the article: “An $8 million clinical trial of a mitochondrial enhancer, no less, in ME/CFS? I thought I was hearing things but it was so, and, in the end, it even makes sense given how rapidly some parts of this field are moving forward. But first, a little backstory.”
5.
PopSugar.com: Maybe it’s stress, maybe it’s medical gaslighting
From the article: “Medical mistrust, and in turn gaslighting, tends to disproportionately affect women, Dr. Kwo notes. ‘Female patients are frequently told they’re under stress, or have anxiety, or suffer from depression, or the complaints are a result of hormonal cycles — whether menstrual cramps or perimenopause,” according to an Association of Health Care Journalists post. “Other women find their symptoms attributed to their weight or to just plain malingering.'”
What does fibromyalgia feel like to you?
International Fibromyalgia Awareness Day is coming up on Thursday, May 12, and I need your help!
Each year, I post an article on this special day to bring awareness to our community and what it’s like to live with fibromyalgia. I plan to follow the same format this year that I’ve used in previous years where I ask a question, you guys send me your answers and then I compile them into an Awareness Day article.
I also create graphics featuring some of the responses, which can then be shared on social media.
Below are links to past Awareness Day articles, so that you can see the format and how the responses are presented:
What I wish others knew about fibromyalgia
What living with fibromyalgia has taught me
This year’s question is: What does fibromyalgia feel like to you?
I know you guys are going to have A LOT to say on that question!
If you’d like to participate in this project, email your answer to donna@fedupwithfatigue.com by the end of the day Monday, May 9. If you do not have email, you are welcome to share your response in the comments section at the end of this post.
Please limit your response to 100 words or less, and include your first name, the initial of your last name and your state if you live in the U.S. or your country if you’re international.
I will compile a sampling of responses into this year’s Awareness Day article, which will publish on May 12 here on FedUpWithFatigue.com and on Fed Up With Fatigue’s Facebook, Twitter and Pinterest accounts.
I look forward to reading and sharing your responses! Feel free to get crazy with the adjectives. 🙂
Warrior of the week…
The Warrior of the Week is Nur Rieya Abdullah, a teacher from Malaysia.
Click here to read Nur’s story.
Virtual Bingo fundraiser…
My Social Butterflies, LLC is hosting a Lupus & Fibro Virtual Bingo Fundraiser on Sunday, May 1, from 6-8 p.m. on Zoom. The online event will benefit the Social Butterflies Foundation, a nonprofit organization that supports lupus and fibromyalgia warriors and their families.
The link above includes an audio interview with the foundation’s founder and CEO.
***The sections below contain affiliate links.***
Product of the week…
The Product of the Week is “Fibromyalgia: The Invisible Illness, Revealed” by author/editor Barbara Robbins.
The book is described as “a heartfelt arrangement of personal reflections that explore an often misunderstood and unseen illness. This book is the creation of published author Barbara Robbins and 30+ other fibromyalgia patients from around the world.
“Robbins shares, ‘The chapters range from an individual’s journey with fibromyalgia, to interviews, a visual chapter of our illness, special chapters and graphs showing fibro symptoms. The purpose of this book is to inform the newly diagnosed, patients, family, friends and yes, doctors, to recognize and learn the symptoms and helpful solutions of how to deal with this illness,'” reads a press release about the book.
Have any of you read this yet? It looks interesting!
Fibro Summit…
HealthMeans.com and Dr. Rodger Murphree are partnering again this year to bring us the Fibro Summit! The summit will be free and online on May 16-22 with an encore weekend (where you have a second chance to watch any presentations you missed) scheduled for May 28-29.
As in previous years, HealthMeans is offering several registration gifts. I’ve listed all of them below. Just click on the link for the gift that you’d like to receive, and that will take you to a registration page.
Treating and Beating Adrenal Fatigue Special eReport
Good Gut Health Remedies eBook
Let’s “Talk” About FIBROMYALGIA eBook
Fibromyalgia and Deep Restorative Sleep Special eReport
During the summit, you’ll have 24 hours to view each day’s presentations for free, but if you’d like to watch at your leisure, you can purchase the summit starting at $69.
FYI: This discounted price usually increases a day or so after the summit begins.
Mental Wellness Encore Weekend…
There will be an Encore Weekend of the Mental Wellness Connection on April 30-May 1 where you can watch all of event’s interviews including those with Dr. Mark Hyman, Dr. Daniel Amen, Dave Asprey, J.J. Virgin, Hyla Cass, Tom O’Bryan and many others.
If you’d like to watch at your leisure, you can purchase access to all of the interviews.
I’m Donna, a longtime newspaper reporter, health writer and chronic illness thriver! Fed Up with Fatigue provides weekly news, research, treatments and more to help you live better with fibromyalgia and/or Lyme.
Many of my friends think I’m nuts when I say I have fibromyalia. If I said I had Arthritis they would understand. People who don’t have it, will never understand. For one thing, I look younger than my age (83), and I never whine about my aches and pains, so therefore, no one has a clue how I feel. The chronic fatigue is difficult for me, as there is not much that can be done. I do what I have to do, and move on and don’t complain, and people don’t understand that some things are difficult.
Thank you Donna for putting out the newsletter.
Living with fibro for over thirty years! I have plenty to say and then add arthritis and lymphedema on top of it all! Each day is hard to plan as I never know when to do more and when to rest! It is always a guessing game!
You cannot do the Fibromyalgia in New York State.
What I meant. was that New York State does not allow you to do the blood test