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Recent Interviews Feb 2017
"Everything You Need to Know About Chronic Fatigue Syndrome" An introduction to “Lighting Up a Hidden World: CFS and ME” psychologytoday.com Toni Bernhard interview with Valerie Free - https://www.psychologytoday.com/blog/turning-straw-gold/201702/everything-you-need-know-about-chronic-fatigue-syndrome?#_=_ "Lighting Up a Hidden World" medium.com Dr. Chris Carruthers interview with Valerie Free - https://medium.com/@dr_carruthers/lighting-up-a-hidden-world-f61d9a96e80c#.a5n0xj8pl |
Foreword Clarion Review - rating 5/5
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26 The Leduc Rep • Friday, November 11, 2016
Bobby Roy
broy@postmedia.com
Myalgic encephalomyelitis (ME), more commonly known as chronic fatigue syndrome (CFS) or ME/CFS in North America, is a disease that can immobilize every part of a person’s life and is one that is cruel in every meaning of the word.
The disease’s name, chronic fatigue syndrome, is one factor that has immobilized those with it who continue to seek funding, respect, awareness and most importantly, effective treatment.
But these are the hopes Valerie (Broadbent) Free wishes to accomplish through her book, Lighting Up a Hidden World: CFS and ME. It is essentially seven books in one: It outlines, through song/poem and explanatory notes, how the disease turned her life upside down; contains accounts from others with the illness and professionals from within the ME/CFS community; has a “How to Help” section for patients and their families, as well as resources for anyone who wants to participate in the cause. There are illustrations, meticulously researched facts and footnotes about its history and why it’s not getting the coverage it deserves, along with formal documents to outline its symptoms.
“It is one of the cruelest diseases on earth right now. Life literally just stops when you get it. It stops. The perception of the illness is what we need to change. That’s one of the reasons I published my story and everything you see in this book. I really felt it was my calling to be a voice for millions worldwide who are living with this condition,” explained Free, who grew up in the Warburg area, but calls the City of Calgary home now.
What became known as CFS came to North America in the 1980s, beginning in the United States and then moved throughout Canada. Free said the problem started when medical professionals couldn’t diagnose what was wrong with patients coming in with symptoms that were unexplainable. And then in the mid 1980s, the U.S. Centers for Disease Control (CDC) was called in by those concerned doctors who were seeing those patients with a mysterious illness. Eventually the CDC labeled the condition “chronic fatigue syndrome” which turned out to be very misleading. Decades later, in 2016, health agencies are finally beginning to agree with international experts that ME/CFS is a serious, chronic, multi-system illness.
“That name — chronic fatigue syndrome — really has been a problem. And those suffering with it have paid the price for it over many, many years. It’s been highly misinterpreted and because of that, there is a severe lack of funding, professional help, and awareness of it,” said Free. “The fatigue in ‘chronic fatigue syndrome’ is not the tiredness felt by a healthy person so it creates confusion; and it is only one symptom of many that make it the complex illness that it is. Some of the other major signs and symptoms include sleep dysfunction; pain; neurological/cognitive dysfunctions such as memory and concentration difficulties; central nervous system dysfunctions such as orthostatic intolerance (inability to be upright without rapid blood pressure changes); immune problems such as food and medication sensitivities; and the unique symptom of post-exertional malaise (after even slight mental, emotional, or physical exertion, all symptoms worsen for hours and new ones can appear). ME/CFS often starts with a sudden onset, and the severity has a range but most people are unable to work, cannot maintain physical activity, and some remain unbelievably sick, bedbound and needing caregivers for the rest of their lives. It is suffering that has been compared by experts as similar to end-stage cancer or HIV/AIDS but has no standard of care or approved treatments available.”
It was in July 1990, at age 30, after coming down with sudden flu-like symptoms that everything changed for Free.
“The flu started to shift and I knew very quickly something wasn’t right. It was affecting my brain and normal, everyday body functions. I thought to myself ‘ahh, I’ll just get over it.’”
But she never did.
After unrelenting, bizarre symptoms for months, she was eventually diagnosed with CFS, which was later to be understood as ME or ME/CFS.
When she was first diagnosed, there was very little information about what she had so the lack of information made it impossible to figure out how to get better. Her cognitive ability, her physical strength — everything that allowed her to live a full life prior to July 1990 — was failing.
“I had no idea what was happening to me. Even today, I can’t sit or stand for very long. I just get weak and my heart rate goes up way too high. You have to do everything differently. It affects every part of your being. Every mental, emotional and physical exertion takes a major toll and every day is different but never normal,” said Free.
The author explained physical exertion is the toughest on her. In one instance what would be a simple task for a healthy person laid her up for days with profound exhaustion and severe pain.
“I decided I was going to go for a walk just down my driveway with my dog. I was just going to do it even though I knew it was going to hurt, but after this walk, it just hit me. Within the next 48 hours I was in a fetal position in my room wishing I could die. It’s just so abnormal. It’s hard to explain and it’s just not who I was in health, and for anyone with this disease, it’s not who they were either.”
But despite living with the illness, Free said she feels lucky that she was able to work on this project, while functioning at what she calls a fluctuating “40 per cent.”
“For the first five years after being diagnosed I felt my body and mind were working at 70 per cent of my capacity. After that, I worsened drastically, had to leave my 15 year career as a court reporter, and lost many friends, all my hobbies, and my ability to even care for myself or my family at times. I dropped to 10 per cent which is bed bound and severely sick. I was never well enough to work again. When I started to write, 20 years after the onset at age 50, I was functioning at about 30 to 50 per cent. I had amassed a lot of information and research by then. It was really hard to bear all this knowledge and not have an avenue for others to know about it, so that’s why I wrote this book.”
The inspiration for the book started with a song by Julie Andrews from the iconic Sound of Music called “My Favorite Things.”
“I went home and started unraveling my story and I sang it until I had pulled out all of my experiences. They started like pulling a thread. It took me about a year to get those experiences out through song and when I told some of my friends, they loved it, but asked ‘How can this be, Val?’ So I started putting notes beside these stanzas to fill in the gaps of my experiences and give more detail of what was really happening to me. Then I, along with others, sought out stories from the global ME/CFS community so that all the aspects of living with this, and other chronic illnesses that are similar, would be revealed. It has taken seven years to put this together and included a lot of research, many dollars, and many, many people,” said Free.
Helping in the fight to get the necessary funding, awareness, and respect for how devastating this disease can be is what propelled her.
“The government funding has been ridiculous. In the end the CDC is only giving $6 million a year to this, which is less than is given to male pattern baldness. In Canada, it is worse with no funding for research at all. We’re trying to get the attention of the government to get the proper research and medical resources. Without help, it’s impossible.”
“Lighting Up a Hidden World: CFS and ME advocates for those too ill to speak out, abounds with patient resources, and offers realistic hope for the future. People living with this illness, along with their family and friends, will find compassion and camaraderie in its pages. This book reaches beyond the ME/CFS community exposing the themes of human suffering, resilience, and the need for social change.”
The book hasn’t been out very long, but it’s already receiving rave reviews. Foreward Clarion Reviews, an independent book review site, gave the book a 5/5 rating and reviewer Kristine Morris says, “Free’s writing is eloquent, and her voice is both intimate and powerful. The interior layout and design facilitate reading pleasure and comprehension, and the book is enhanced by whimsical, touching black-and-white illustrations that often bring a smile.”
For more information about Free’s novel and where it can be purchased, visit valeriefree.org.
Author hopes tell-all novel brings light to one disease’s Hidden World
Submitted (photo)
text by photo:Author Valerie Free hopes to shed light on a debilitating disease in her new book.
Bobby Roy
broy@postmedia.com
Myalgic encephalomyelitis (ME), more commonly known as chronic fatigue syndrome (CFS) or ME/CFS in North America, is a disease that can immobilize every part of a person’s life and is one that is cruel in every meaning of the word.
The disease’s name, chronic fatigue syndrome, is one factor that has immobilized those with it who continue to seek funding, respect, awareness and most importantly, effective treatment.
But these are the hopes Valerie (Broadbent) Free wishes to accomplish through her book, Lighting Up a Hidden World: CFS and ME. It is essentially seven books in one: It outlines, through song/poem and explanatory notes, how the disease turned her life upside down; contains accounts from others with the illness and professionals from within the ME/CFS community; has a “How to Help” section for patients and their families, as well as resources for anyone who wants to participate in the cause. There are illustrations, meticulously researched facts and footnotes about its history and why it’s not getting the coverage it deserves, along with formal documents to outline its symptoms.
“It is one of the cruelest diseases on earth right now. Life literally just stops when you get it. It stops. The perception of the illness is what we need to change. That’s one of the reasons I published my story and everything you see in this book. I really felt it was my calling to be a voice for millions worldwide who are living with this condition,” explained Free, who grew up in the Warburg area, but calls the City of Calgary home now.
What became known as CFS came to North America in the 1980s, beginning in the United States and then moved throughout Canada. Free said the problem started when medical professionals couldn’t diagnose what was wrong with patients coming in with symptoms that were unexplainable. And then in the mid 1980s, the U.S. Centers for Disease Control (CDC) was called in by those concerned doctors who were seeing those patients with a mysterious illness. Eventually the CDC labeled the condition “chronic fatigue syndrome” which turned out to be very misleading. Decades later, in 2016, health agencies are finally beginning to agree with international experts that ME/CFS is a serious, chronic, multi-system illness.
“That name — chronic fatigue syndrome — really has been a problem. And those suffering with it have paid the price for it over many, many years. It’s been highly misinterpreted and because of that, there is a severe lack of funding, professional help, and awareness of it,” said Free. “The fatigue in ‘chronic fatigue syndrome’ is not the tiredness felt by a healthy person so it creates confusion; and it is only one symptom of many that make it the complex illness that it is. Some of the other major signs and symptoms include sleep dysfunction; pain; neurological/cognitive dysfunctions such as memory and concentration difficulties; central nervous system dysfunctions such as orthostatic intolerance (inability to be upright without rapid blood pressure changes); immune problems such as food and medication sensitivities; and the unique symptom of post-exertional malaise (after even slight mental, emotional, or physical exertion, all symptoms worsen for hours and new ones can appear). ME/CFS often starts with a sudden onset, and the severity has a range but most people are unable to work, cannot maintain physical activity, and some remain unbelievably sick, bedbound and needing caregivers for the rest of their lives. It is suffering that has been compared by experts as similar to end-stage cancer or HIV/AIDS but has no standard of care or approved treatments available.”
It was in July 1990, at age 30, after coming down with sudden flu-like symptoms that everything changed for Free.
“The flu started to shift and I knew very quickly something wasn’t right. It was affecting my brain and normal, everyday body functions. I thought to myself ‘ahh, I’ll just get over it.’”
But she never did.
After unrelenting, bizarre symptoms for months, she was eventually diagnosed with CFS, which was later to be understood as ME or ME/CFS.
When she was first diagnosed, there was very little information about what she had so the lack of information made it impossible to figure out how to get better. Her cognitive ability, her physical strength — everything that allowed her to live a full life prior to July 1990 — was failing.
“I had no idea what was happening to me. Even today, I can’t sit or stand for very long. I just get weak and my heart rate goes up way too high. You have to do everything differently. It affects every part of your being. Every mental, emotional and physical exertion takes a major toll and every day is different but never normal,” said Free.
The author explained physical exertion is the toughest on her. In one instance what would be a simple task for a healthy person laid her up for days with profound exhaustion and severe pain.
“I decided I was going to go for a walk just down my driveway with my dog. I was just going to do it even though I knew it was going to hurt, but after this walk, it just hit me. Within the next 48 hours I was in a fetal position in my room wishing I could die. It’s just so abnormal. It’s hard to explain and it’s just not who I was in health, and for anyone with this disease, it’s not who they were either.”
But despite living with the illness, Free said she feels lucky that she was able to work on this project, while functioning at what she calls a fluctuating “40 per cent.”
“For the first five years after being diagnosed I felt my body and mind were working at 70 per cent of my capacity. After that, I worsened drastically, had to leave my 15 year career as a court reporter, and lost many friends, all my hobbies, and my ability to even care for myself or my family at times. I dropped to 10 per cent which is bed bound and severely sick. I was never well enough to work again. When I started to write, 20 years after the onset at age 50, I was functioning at about 30 to 50 per cent. I had amassed a lot of information and research by then. It was really hard to bear all this knowledge and not have an avenue for others to know about it, so that’s why I wrote this book.”
The inspiration for the book started with a song by Julie Andrews from the iconic Sound of Music called “My Favorite Things.”
“I went home and started unraveling my story and I sang it until I had pulled out all of my experiences. They started like pulling a thread. It took me about a year to get those experiences out through song and when I told some of my friends, they loved it, but asked ‘How can this be, Val?’ So I started putting notes beside these stanzas to fill in the gaps of my experiences and give more detail of what was really happening to me. Then I, along with others, sought out stories from the global ME/CFS community so that all the aspects of living with this, and other chronic illnesses that are similar, would be revealed. It has taken seven years to put this together and included a lot of research, many dollars, and many, many people,” said Free.
Helping in the fight to get the necessary funding, awareness, and respect for how devastating this disease can be is what propelled her.
“The government funding has been ridiculous. In the end the CDC is only giving $6 million a year to this, which is less than is given to male pattern baldness. In Canada, it is worse with no funding for research at all. We’re trying to get the attention of the government to get the proper research and medical resources. Without help, it’s impossible.”
“Lighting Up a Hidden World: CFS and ME advocates for those too ill to speak out, abounds with patient resources, and offers realistic hope for the future. People living with this illness, along with their family and friends, will find compassion and camaraderie in its pages. This book reaches beyond the ME/CFS community exposing the themes of human suffering, resilience, and the need for social change.”
The book hasn’t been out very long, but it’s already receiving rave reviews. Foreward Clarion Reviews, an independent book review site, gave the book a 5/5 rating and reviewer Kristine Morris says, “Free’s writing is eloquent, and her voice is both intimate and powerful. The interior layout and design facilitate reading pleasure and comprehension, and the book is enhanced by whimsical, touching black-and-white illustrations that often bring a smile.”
For more information about Free’s novel and where it can be purchased, visit valeriefree.org.
Author hopes tell-all novel brings light to one disease’s Hidden World
Submitted (photo)
text by photo:Author Valerie Free hopes to shed light on a debilitating disease in her new book.
Book Review by Llewellyn King, Washington DC, on YouTube, ME/CFS Alert series. October 17, 2016:
https://www.youtube.com/watch?v=Az9TIlBLK6E
https://www.youtube.com/watch?v=Az9TIlBLK6E
Radio Interview of Valerie Free about Lighting Up a Hidden World: CFS and ME
Oct 9, 2016 YouTube parts 1 and 2
Part 1 : https://youtu.be/ckJQPP-9PjQ
Part 2: https://youtu.be/iaKQO_evlCU
PRESS RELEASE
FOR IMMEDIATE RELEASE
AN ILLNESS DENIED FOR DECADES IS EXPOSED
New Book Reveals Surprising Realities of a Hidden Condition
[Alberta, CA – September 29, 2016] Despite millions of people worldwide who are suffering with chronic fatigue syndrome (CFS) and myalgic encephalomyelitis (ME) – now also known as ME/CFS – doubt remains about the true nature of the illness by those within politics, medicine and society. The long-term dismissal and disbelief have resulted in devastating consequences: Thousands of people have fallen through the cracks of our health care system – many too ill to fight for their right to appropriate care and medical resources.
Lighting Up a Hidden World: CFS and ME, a new book by Valerie Free, speaks out for those too ill to do so. It is a call to health care providers, the general public, and anyone who continues to ignore the seriousness and severity of the disease.
In July of 1990, Free came down with a sudden, flu-like illness, and after months of unrelenting and bizarre symptoms, she was diagnosed with CFS. Through years of personal experience and research, she gained the insight and knowledge that has aided her in writing Lighting Up a Hidden World: CFS and ME.
“Everyone who has read even portions of the book has been interested in the fascinating history and politics of ME and CFS; has been surprised by the facts regarding the lack of research funding; and has been deeply moved by the original poetry and captivating first-hand perspectives from within the ME/CFS community,” Free said.
Dr. David Bell, an ME/CFS expert, was one of the first doctors to see a sudden influx of patients in the 1980’s who presented with an illness he had never seen before. The illness was later named chronic fatigue syndrome. Dr. Bell wrote:
“Valerie Free has managed the nearly impossible. She has brought together descriptions and patient stories that convey what the world has refused to believe – that ME/CFS is not only real, but it is a nightmare that rivals hell itself and continues to be dismissed as a trivial neurosis by educated physicians who should have moved beyond this twenty years ago.”
Free also gives resources for the people who live with ME/CFS and other chronic conditions, as well as for those who want to participate in the global search for solutions.
Lighting Up a Hidden World: CFS and ME is available for order from FriesenPress Bookstore, Amazon, and most other major online book retailers. The e-book edition will follow shortly for order from GooglePlay and iTunes.
About the Author
Valerie Free continues to navigate life within the limitations that ME/CFS imposes while holding a clear vision of health and well-being for everyone affected by illnesses that are off the grid of care and cure. She resides on an acreage with her family in Alberta, Canada.
Please contact Valerie Free with any media inquiries.
"Author Valerie Free was a huge inspiration for making Forgotten Plague. Without her, it's safe to say, the film would not exist. Her book, Lighting Up a Hidden World, is coming out this month. It will be great! We've often imagined a co-marketing campaign in which people hand out Forgotten Plague DVDs and copies of this book together. As a package, the written word complements the visuals in the film in a great, cohesive way.
As renowned author, Toni Bernhard, has said, 'I expect this book to have a worldwide impact'."
Ryan Prior, Forgotten Plague Documentary - June 17, 2016
"Canadian writer Valerie Free is releasing an important new book on this disease called "Lighting Up a Hidden World." Valerie is important to us because she is potentially the singular reason Forgotten Plague ever got made at all. Her willingness to spend hours talking with us and with many others behind the scenes has sparked not just Forgotten Plague and the Blue Ribbon Foundation, but numerous advocacy and awareness-building projects. Though she has kept a low profile for many years, she has long been an influential and well-connected member connecting the dots in the global ME/CFS community. Now she is moving into the public light with a book that reflects her years of careful and meticulous research. Her book features her own story of dealing with the disease and includes essays featuring Dr. David Bell, Dr. Daniel Peterson, and many others. Her book will be an indispensable resource for patients, caregivers, advocates, scientists, and researchers interested in ME and CFS. According to renowned author Toni Bernhard, 'I expect this book to have worldwide impact'."
Ryan Prior, Forgotten Plague Documentary - May 2016
As renowned author, Toni Bernhard, has said, 'I expect this book to have a worldwide impact'."
Ryan Prior, Forgotten Plague Documentary - June 17, 2016
"Canadian writer Valerie Free is releasing an important new book on this disease called "Lighting Up a Hidden World." Valerie is important to us because she is potentially the singular reason Forgotten Plague ever got made at all. Her willingness to spend hours talking with us and with many others behind the scenes has sparked not just Forgotten Plague and the Blue Ribbon Foundation, but numerous advocacy and awareness-building projects. Though she has kept a low profile for many years, she has long been an influential and well-connected member connecting the dots in the global ME/CFS community. Now she is moving into the public light with a book that reflects her years of careful and meticulous research. Her book features her own story of dealing with the disease and includes essays featuring Dr. David Bell, Dr. Daniel Peterson, and many others. Her book will be an indispensable resource for patients, caregivers, advocates, scientists, and researchers interested in ME and CFS. According to renowned author Toni Bernhard, 'I expect this book to have worldwide impact'."
Ryan Prior, Forgotten Plague Documentary - May 2016
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#MEAction - NEW ME/CFS BOOK: LIGHTING UP A HIDDEN WORLD |
