Science In The Age of Dogma: A Conversation with Dr. William Weir
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
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.
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.
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).
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.
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 …
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...
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.
May 12, 2021: International ME/CFS and Fibromyalgia Awareness Day
Remembering the Legacy of Awareness Day Founder Tom Hennessy, Jr.
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...
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.
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...
Meet the Researcher: Interview with Dr. Erin Cvejic
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.
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.
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...
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.
“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...
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.
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...
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.
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...
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.
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...
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.
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.
I have been self-isolating for over two weeks now. Not because of COVID-19. At least, not at first. Like many of you, I spend a great deal of time in my house because of ME/CFS. I was housebound due to a resurgence of ME/CFS symptoms since the beginning of March. And like many of you, I have hated being forced to stay at home and away from the outside world for extended periods of time. In my case, this has been going on for years.
Facing great uncertainty
Now, though there is an odd benefit to this experience of having been sidelined for such long stretches. Unlike many normally healthy people being faced with self-isolating, I know how to do this. I know that it is frustrating and limiting but oh yes! I know that it can be done.
I think with sympathy about those whose finances are in jeopardy, who aren't sure...
Hey, it's the beginning of a new year. And 2020 has a nice fresh ring to it. This time of year are you thinking about the future? I'm not talking about New Year Resolutions. I ditched those years ago.
Me, I have a hard time looking to the future. When it comes to scheduling and planning and organizing, I can only deal with a couple of weeks at a time. But I am not one of those people who has a One Year Plan, a Five Year Plan ... and I can't even conceive of anything further ahead than that.
I envy those people who do this, quite frankly. But ... my brain can't handle it and I'm afraid to look forward. And besides that, any plans I might make are liable to be overturned against my will at a moment's notice.
Starting a day or two before any appointment or coffee date or family event, I begin hoping that I won't get up crippled or addled, and...
Living With ME/CFS in the Holiday Season: Year After Year
by Jody Smith
This year marks my twenty-eighth holiday season fractured by ME/CFS. Some years have been better, some worse. All of them have been thrown off kilter in one form or another for me and my family.
My first Christmas marred by ME/CFS was in 1992. My husband had had fibromyalgia for four years. That spring I'd had a bout of frightening symptoms which disappeared six week later as mysteriously as they had arrived.
We had five children between two years and 10 years of age. Life was frightening and unstable and unpredictable. We felt like we were hanging over a precipice and our ability to protect and care for our children was in jeopardy.
Our furnace had broken down. Repairing and fueling the thing was far beyond our means so my already-injured husband re-injured his ribs day in and day out as he chopped wood for our two wood...
On my side of the world, change is brewing. Here in North America, the cold and dark brooding of winter looms and glowers. In some areas it has already hit, hard. Temperatures dropping, days shortening ... for someone like me who lives with ME/CFS and seasonal affective disorder, this is a daunting time. I am staring down the disappearance of light.
Just to make things more interesting many parts of the continent, including my own, have recently plunged off the precipice of a change from Daylight Savings Time. At that point the gentle receding of daylight turns into a body slam. Not a couple of minutes' further loss each day but the hammer blow of night fall an hour earlier than we're prepared for.
Sounds kind of melodramatic, I suppose. But I tell you for me, it's a melodramatic time encroaching. And I know I'm not the only one.
The ME/CFS community is all too familiar with the realities of invisible disabilities. As a matter of fact we are rife with them. For this reason, we're happy to make some noise for Invisible Disabilities Week.
If you have an invisible disability, you're living with one or more physical, mental or neurological challenges that other people might not be aware of. Some people living with disabilities might still be quite functional. Or then again they may not. Many fall somewhere in between.
Some are able to work, but have no energy at the end of their work day. Others can only hold down a part-time job but manage to take care of their daily personal needs. And then others need help in their day-to-day lives. Many invisible disabilities alter life substantially.
According to the 1994-1995 Survey of Income and Program Participation...
There just aren't enough hours in the day for the person with ME/CFS. At least, it's been like this for me. It's not that I'm so terribly busy. Indeed, I am not. Not like I used to be busy, before illness.
The complicating factor and really, the only factor I have any control over, is the amount of what I'll call white space necessary to get through a day without falling on my face.
If I'm doing things right, I might be able to go visit my dad at his nursing home for half an hour in the morning, maybe even a few times in a week. I might even be able to spend half an hour doing some errands.
But then I'd better have a couple of hours with no demands after that. And it would be even better if I had nothing else going on till I make dinner. And best if the evening has no obligations at the end of such a "busy" day.