Phoenix Rising Articles

Article What It Is To Be Human: Holobionts and the Microbiology of Myalgic Encephalomyelitis

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What It Is To Be Human:
Holobionts and the Microbiology of Myalgic Encephalomyelitis


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Dr. Amy Proal, of the PolyBio Research Foundation, explains how a human body is so much more than just a collection of human cells. Images courtesy of Dr. Amy Proal.

By Bronc

Dr. Amy Proal, of the PolyBio Research Foundation, is a microbiologist interested in the molecular mechanisms by which bacterial, fungal and viral pathogens dysregulate human gene expression, immunity and metabolism.

She is especially interested in how dysfunction of the human microbiome and/or the human virome can contribute to chronic inflammatory disease processes. We sat down with Dr. Amy Proal to learn more, and the following is an edited excerpt of our discussion.

...

Article Part 2: The Challenge of Standing up for Patients in Mexico

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Part 2: The Challenge of Standing up for Patients in Mexico

In the second of a three-part series, people describe the challenges of pursuing fundamental rights for patients with neuroimmune diseases in Mexico. If you haven’t already read the first part of this series, click here.
Patient advocates in Mexico try to raise awareness in their own ways. The sign on the left says “Ask me how it is to live with ME/CFS.” The sign on the right says “You say that I don’t look sick… Well you don’t look ignorant…”. Photos courtesy of Millions Missing México and Fibromialgia En-Acción.

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Article A Call to Arms: 30th Anniversary of International ME/CFS & Fibromyalgia Awareness Day

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A Call to Arms: 30th Anniversary of International ME/CFS & Fibromyalgia Awareness Day
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by Jody Smith

May 12th is a special day in the ME/CFS community. It was English army nurse Florence Nightingale's birthday. In 1992 Thomas Hennessy, Jr. thought her birthday would be a fitting day for raising awareness for us.

Why, you ask? Because Florence Nightingale was amazing. Not only did she help to create the Red Cross, and start the first school of nursing in the world. She did all this despite contracting a chronic illness which left her bedridden for the last 50 years of her life.

What an icon she is! She was a combination of frailty and fragility, undergirded by a steely will to make a difference and ease suffering in our infirm world. Her birthday was the perfect date for Thomas Hennessy to issue our call to arms about ME/CFS.

Thomas first sent out his battle cry 30 years ago this week. And...

Article Part 1: Millions Missing in Mexico

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Part 1: Millions Missing in Mexico

In the first of a three-part series, people describe the challenges of living with neuroimmune diseases in Mexico. The science of these diseases is also discussed, and we try to understand why the latest science is not informing proper medical treatment.

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“It was as if all my strength had been sucked out of me.” At 32 years old, Daniela Herrera Villarreal developed simultaneous infection of her throat and stomach, beginning a quest for medical understanding. More than three years later, she has had to abandon her masters degree in anthropology and is incapable of standing for more than 10 minutes at a time. Image courtesy of Millions Missing Mexico.

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Article Doctors with ME Confront the Taboo of Suicide

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Doctors with ME Confront the Taboo of Suicide
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Eleanor Stein, MD and Lily Chu, MD are both doctors with myalgic encephalomyelitis (ME). They have dedicated their careers to helping others with ME. Images courtesy of Dr. Eleanor Stein and Dr. Lily Chu.​

By Bronc

It was a warm summer evening and I was looking forward to watching one of my favourite films, when I received a text from my best friend.

I expected the text to be a question asking me what film I was going to watch. Instead, he informed me that the night before he had attempted to kill himself.

The next day, when we met, he explained that he could not endure his suffering anymore and that is why he made the suicide attempt. Now my dear friend, whom I loved as a brother, was just one amongst many other tragic stories.

There is plenty of evidence to suggest that there are several communities who...

Article When Pain is a Part of Your Crash: Insights From Research

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When Pain is a Part of Your Crash: Insights From Research

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For some people, pain is a significant component of their crashes. Image by vaxZine from Flickr, licensed CC BY-NC-ND 2.0.
By Bronc

Late last year Dr. Dane Cook, along with Dr. Jacob Lindheimer and colleagues, published a systematic review of research looking at pain as a component of post-exertional malaise (PEM) — which is also known as post-exertional symptom exacerbation (PESE).

As seen with other components of PEM/PESE, any pain seemed to be delayed by 8-72 hours after exertion. Interestingly, this finding applied to both myalgic encephalomyelitis /chronic fatigue syndrome (ME/CFS) as well as to...

Article Science In The Age of Dogma: A Conversation with Dr. William Weir

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Science In The Age of Dogma: A Conversation with Dr. William Weir

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Dr. William Weir is a retired physician who has treated ME/CFS patients for many years. He has spent the last few years advising the U.K. government's National Institute for Health and Care Excellence (NICE) and has recently authored an article about dogma and science. Image courtesy of Dr. William Weir

by Bronc

Dr. William Weir is a retired infectious disease consultant who worked at the Royal Free Hospital in London. He has long been involved in treating myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS) patients and has been a consistent critic of the psychological approach to treating ME/CFS.

From 1998 to 2002 Dr. Weir assisted the U.K. government's CFS/ME Working Group, which produced a comprehensive advisory report for the...

Article Central Autonomic Network Disturbance in People with ME: A Conversation with Dr. Mark Zinn

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Central Autonomic Network Disturbance in People with ME:
A Conversation with Dr. Mark Zinn

Dr. Mark Zinn, along with his late wife Dr. Marcie Zinn, pioneered the use of advanced electro-encephalographic techniques to study myalgic encephalomyelitis. Image courtesy of Dr. Mark Zinn.

by Bronc

Dr. Mark Zinn and his late wife Dr. Marcie Zinn co-founded the NeuroCognitive Research Institute. He has expertise in quantitative and tomographic methods of electro-encephalographic analysis, in order to test theoretical premises in research involving neurocognitive disorders.

From 2011-2014 he served as research consultant at the Stanford University School of Medicine, where he studied cognitive impairment in infection-associated chronic diseases such as myalgic encephalomyelitis (ME).

In 2015, he...

Article Where Exactly does ME/CFS Research Stand in 2021? Dr. Komaroff Explains

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Where Exactly does ME/CFS Research Stand in 2021?
Dr. Komaroff Explains

From the central nervous system to Long COVID to energy impairment, Dr. Anthony Komaroff provides his perspective on over 30 years of scientific research into myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS) and post-acute viral illnesses.



For over 30 years, Dr. Anthony Komaroff has been closely following the science behind myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS) and post-acute viral illnesses. Image courtesy of Dr. Anthony Komaroff.

Versión en españolVersion française

By Bronc and Eric Pyrrhus
Dr. Anthony Komaroff is...

Article Very Severe ME: Are Intimate Relationships Possible?

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Very Severe ME: Are Intimate Relationships Possible?

On August 8th our ME community honours Severe ME Understanding and Remembrance Day, this year and every year. Rachel M. shares her thoughts on what it's like living with Very Severe ME …

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By Rachel M.​

Hello. I’m Rachel from Queensland, Australia. I live with Very Severe ME. My Very Severe ME is clinically confirmed, according to the Myalgic Encephalomyelitis International Consensus Primer for Medical Practitioners (ICP).

I believe I had Mild ME since childhood, however, the unfortunate misdiagnosis of depression and its treatment triggered it to deteriorate to Very Severe ME rapidly.

As anyone would do in my situation, I have gone through the trauma with the healthcare system and dismissive doctors, and roller coaster rides of the grieving process for the lost life, career, sense of pride, achievements...

Article Invisible Disability: A Tough Fight and a Big Win for Patients in Spain

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Invisible Disability: A Tough Fight and a Big Win for Patients in Spain
In Spain, patients with neuroimmune diseases such as fibromyalgia or myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS) have been disgusted at their government's refusal to recognize them as seriously disabled human beings. This week brought news of a big step forward.

May 9, 2019: Chanting "Yes, we exist! We are not invisible!" patients and medical professionals from 170 different patient groups demonstrated throughout Spain, demanding the retraction of the government's disability guidelines for neuroimmune diseases. Image courtesy of CONFESQ.

By Eric Pyrrhus

Versión en español •...

Article May 12, 2021: International ME/CFS and Fibromyalgia Awareness Day

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May 12, 2021: International ME/CFS and Fibromyalgia Awareness Day

Remembering the Legacy of Awareness Day Founder Tom Hennessy, Jr.

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Thomas Hennessy, Jr.
by Jody Smith

I have written a few articles about May 12 over the years and usually I focus on the events and groups involved in this special ME/CFS date. I’ve always thought that it’s important that we tell our stories but this year, I’ve been struck by the importance of recording and passing down these stories.

So much can be lost if we don’t. As the years go by, past events, past heroes can vanish in the shadows. And let’s face it, we with ME/CFS have already lost far too much to shadow.

When it comes to May 12, there are many groups and individuals and events that have been, and continue to be, significant. But there is one name, to my...

Article Risk Factors for Suicide in People with Myalgic Encephalomyelitis

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Risk Factors for Suicide in People with Myalgic Encephalomyelitis
A Conversation with Professor Leonard Jason and Madeline Johnson
Dr. Leonard A. Jason runs the Center for Community Research at DePaul University in Chicago. Image by Center for Community Research at DePaul University.

By Bronc

Dr. Leonard A. Jason is a professor of psychology and Director of the Center for Community Research at DePaul University in Chicago, USA. He has a long history of research in the field of Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS). His most recent books include: The Psychology of Peace Promotion and Introduction to Community Psychology: Becoming an Agent of...

Article Extracellular Vesicles and Micro-RNAs in ME/CFS: A Conversation with Dr. Elisa Oltra and Dr. Jesus Castro

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Extracellular Vesicles and Micro-RNAs in ME/CFS
A Conversation with Dr. Elisa Oltra and Dr. Jesus Castro

By Eric Pyrrhus
March 31, 2021

Versión en español

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In 2020, there were three different scientific publications about "extracellular vesicles" and four different scientific publications about "micro-RNAs" in myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS). What exactly are extracellular vesicles and micro-RNAs and why are they both such exciting fields of research?

A vesicle is like a microscopic bubble, surrounded by a fatty membrane and filled with water and biological particles. An extracellular vesicle, abbreviated EV, is...

Article Meet the Researcher: Interview with Dr. Erin Cvejic

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Meet the Researcher: Interview with Dr. Erin Cvejic

by Bronc​

Dr. Erin Cvejic is a Senior Lecturer in Biostatistics at the School of Public Health, University of Sydney, Australia, and an Adjunct Lecturer in Psychiatry at UNSW Sydney.

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Over the last eight years he has written several articles on the issue of sleep and cognitive function in people with myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS).

I had an opportunity to interview Dr. Cvejic for Phoenix Rising.

Phoenix Rising:
How did you get involved in the field of ME/CFS research?


Dr. Erin Cvejic:
I completed my Ph.D. in the field of experimental psychology, but was eager to pursue a program of research that had greater potential for real-world impact that could eventually help people.

A post-doctoral position became available at the University of New South Wales (UNSW) to work with Associate Professor Uté...

Article Honouring the Memory of our Friend PatJ

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Honouring the Memory of our Friend PatJ

by Jody Smith
We want to celebrate the memory of PatJ here on Phoenix Rising. Many of our members knew him as a long-time friend on these forums. We received some sorrowful news about Pat on December 29, 2020 from his sister Shannon.

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“I wanted to inform you that my brother Patrick Johnson of Whitehorse, Yukon, Canada ended his suffering this morning. His wishes were to let this group know,” she told us. “I would like to thank you all for the friendship and support that you have provided to him for the duration of his illness. He was a kind and gentle soul and he was a light in our lives.”

Pat was also a steadfast light for his friends on Phoenix Rising. He was always ready with a kind word to lift the flagging...

Article Holiday Season ME/CFS Style — With a COVID Twist

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Holiday Season ME/CFS Style — With a COVID Twist

By Jody Smith​

I have a bad history with late November and the month of December, ever since I first got ME/CFS 28 years ago. Some of that has to do with the shorter daylight hours in my hemisphere, but a lot of it is wrapped up with the encroaching Holiday Season.

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December plays host to a multitude of holidays, holy days and celebrations. Many of these are filled to the brim with excitement and anticipation. Fabulous! However, there is a flip side to all that excitement and anticipation. A mountain of work and planning and running around is usually necessary to pull off the Big Day, no matter which one it is.

I write about Christmas because that's the one I'm familiar with. I've had a lot of Christmas seasons over my lifetime -- more than six decades of them. I don't remember the first few, and the next few are pretty hazy. But by the end of the first decade I...

Article The Apologizers of the ME/CFS World

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The Apologizers of the ME/CFS World

by Jody Smith​

I'm Canadian, so I hear a lot of good-natured jokes about how Canadians apologize all the time. It's funny in part because ... in part, it's true. But you know who else apologizes a lot? Chronically ill people. And that ain't so funny.

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Now some of us were probably like that before becoming ill. But what's particularly interesting and maybe a bit disturbing, is how many of us have gone from being confident, even strident, self-assured people unapologetically filling our space to ... sorry for requiring someone's attention, sorry for having needs, for taking up too much room, too much time ... too much air ...

Do you know what I mean? Do you know some chronically ill who do this? I did it. Maybe you did it too. If not, you probably know someone who have been shrunk this way by their unending illness.

I had been a busy, opinionated woman before I got sick. My...

Article August 8th, 2020: Understanding and Remembrance Day for Severe ME

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August 8th, 2020: Understanding and Remembrance Day for Severe ME

By Jody Smith

Every year we who are able do our bit to bring greater awareness to the plight of the most severely ill 25% in the ME/CFS community. Does this bring greater awareness to anyone outside of our community? I wish I knew. But we carry on in this endeavour because these precious people matter to us and we want them to matter to the rest of the world too.

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August 8th is Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis. It's a day that is intended to bring attention to those who are most invisible in our ME/CFS community. It is a time when we remember and honour those who have passed away without cure or respite, and those who continue to live in the dark and silence.

It would only make sense that those of us who are not so ill are the faces you...

Article May 12, 2020: It's Our International ME/CFS and FM Awareness Day!

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May 12, 2020: It's Our International ME/CFS and FM Awareness Day

by Jody Smith

On May 12, our International ME/CFS and FM Awareness Day, I tend to look back over the years since I was first flattened by ME/CFS. Things changed for the better for me when I found my community. I'd already lived with ME/CFS for 17 years by then. It was a lonely and frightening time. And then I stumbled upon Phoenix Rising with its articles and its forums.

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No longer alone. I can't describe what that meant to me. That is something I, and all the members of Phoenix Rising, want for everyone who deals with ME/CFS as a sick person and/or caregiver. We really want everyone to recuperate fully and forever. But in the meantime, we take full aim at nobody being alone in their illness.

May 12th has been our day...