Jody Smith explains how growing virtual lettuce created a real sense of satisfaction and provided a subtle return to the land of the living…
I knew I was coming back a bit to the land of the living after several years’ exile when I was able to go online again. Getting onto Facebook and learning my way around was quite a coup.
It was a ridiculously challenging and exhausting ordeal. What should have only taken days, instead took a few weeks. And even once I knew what I was doing, I would find myself frazzled and sweating as I’d write a few status updates and replies to friends.… Read More
Mary Dimmock reviews a most welcome announcement from our expert clinicians and researchers who have urged HHS to adopt the Canadian Consensus Criteria and save money by cancelling the contract with the Institute of Medicine…
On September 23, 2013, the US Department of Health and Human Services announced that it had entered into a contract with the Institute of Medicine (IOM) to begin work to develop “clinical diagnostic criteria” for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).
But wait, there’s more…
Stop the press!
On the same day, 35 of the leading international researchers and clinicians in the field of ME/CFS have written an open letter to Secretary Kathleen Sebelius to announce that they have reached a consensus on adopting the Canadian Consensus Criteria (CCC) as the research and clinical case definition for ME/CFS.… Read More
Gabby (Nielk) pays her respects to fellow ME patient and staunch advocate Thomas Hennessy Jr. who died earlier this month. Rest in Peace at last, Thomas.
Thomas M Hennessy Jr
A little over a week ago, on September 9th, the international Neuroimmune Disease (NEID) community was shaken by the news that well known and warmly respected patient advocate Thomas Hennessy Jr. had died.
“A former advertising executive with a knack for a bold phrase,” Tom had kindly granted Phoenix Rising an in-depth interview that we featured again last year, called, “Fierce Advocacy”. He revealed a lot about his inner determination and previous efforts to fight for awareness and recognition of these serious diseases; showing us how committed he was to ensuring changes were made for the better.… Read More
Gabby (Nielk) reviews the shennanigans employed by the DHHS recently to try and blindside us with a new clinical definition for our disease; and explains how you can help stop them…
International Call for Action: Your community needs you!
Everyone: please email HHS today and every day till September 30th – see draft below
US Citizens: please email your Congressional representatives – see instructions below
US Secretary of Health and Human Services
The Department of Health and Human Services (HHS) describes itself as “the United States government’s principal agency for protecting the health of all Americans and providing essential human services, especially for those who are least able to help themselves.… Read More
By Jody Smith
About 10 years ago I began looking online for information and answers about my mystery illness. At that time, my sleeping and waking hours were upside down. I would sleep most of the day and be up throughout the night till dawn. I spent many disturbing hours online looking for answers.
Back then, most of what I could find was pessimistic at best, terrifying at worst. Implications of heart disease and brain damage, irreversible hormonal disruption, malfunctions of the heretofore unheard of hypothalamic-pituitary-adrenal axis, and plenty more that I could not translate into language I could understand.
Confusion and growing despair
Most of what I found was written in such complex medical jargon that I couldn’t tell what I was reading.… Read More
The CDC PCOCA telephone broadcast on 10 September 2013, featured a lengthy presentation from Dr Ian Lipkin who revealed some stunning initial results from the study that is primarily hunting for pathogens in ME/CFS. Simon McGrath and Russell Fleming (Firestormm) review this exciting and possibly game-changing news…
Dr Ian Lipkin
Chronic Fatigue Initiative (CFI)
Pathogen Discovery and Pathogenesis Study
Read the full Lipkin Transcript: Here.
Dr Ian Lipkin has been a human whirlwind in ME/CFS research since he became involved a few years back, and he’s just surprised us all by announcing the first results from the world’s largest ever biomedical ME/CFS study in a public broadcast!… Read More
Andrew Gladman explores the current research climate of ME/CFS, discussing how existing research ties into the emerging autoimmune hypothesis.
Link: ‘New data reveal first predictive biomarkers to tailor rheumatoid arthritis therapy’
Image: computer generated image of an antibody
Throughout the history of ME it is safe to say that understanding of the condition and the research itself has been somewhat fractured at best and lacking significance in many areas. In the last 30 years, following the Lake Tahoe outbreak which piqued the interest of doctors and media, little progress seems to have been made in terms of physiological understanding of the disease processes involved, perhaps due to the stigma of ME as a purely psychological entity which is only in recent years being shaken off.… Read More
Valentijn sets her sights on the recent NHS ME/CFS and Fibromyalgia online clinic, and targets some of the myths that formed an albeit small part of the expert responses…
Shooting down some ME/CFS myths
Between August 14 and August 20, 2013 the National Health Service (NHS) in England hosted an online question and answer clinic in partnership with talkhealth.
This clinic invited patients from around the world with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) or Fibromyalgia to ask questions which were then answered by a panel of 10 experts who were all volunteering their time. These questions and answers will now remain on the talkhealth site to be used as a resource for other ME/CFS patients seeking answers.… Read More
The first in a new series of (mercifully) short pieces on recent research. By Simon McGrath
A new study used data from the large PACE Trial to see if CBT and Graded exercise (GET) improved ME/CFS pain. (The main trial itself found a moderate effect of CBT and GET on self-reported fatigue and function.) The study looked at muscle and joint pain frequency, and fibromyalgia status. And it compared CBT and GET to both specialised medical care (SMC) and APT (pseudo-pacing).
The questions are, did CBT or GET have any effect on these – and if so, how big was the effect?… Read More
Professor Jonathan Edwards
The charity Invest in ME’s plans for a UK Rituximab trial got a substantial boost at the end of July when Jonathan Edwards, Emeritus Professor of Connective Tissue Medicine at University College London (UCL), agreed to act as their advisor for the study.
‘No UK expert is better placed than Professor Edwards to advise us on setting up a Rituximab trial for ME patients’, stated the charity, and it’s hard to argue with that. Drs Fluge and Mella believe that the timing of ME patients’ response to Rituximab-induced B cell depletion indicates that ME may be an autoimmune disease, and it was none other than Professor Edwards who proposed, in a 1999 paper in Immunology, that self-perpetuating B lymphocytes drive human autoimmune disease.… Read More
by Charlotte Dyer
In May 2005 I met my future husband. Living 200 miles apart we led a hectic life rushing between work and family and meeting each other at the weekends for 48 hours before starting all over again. Joel’s job was particularly demanding, meaning he often had to work until the early hours of the morning, snatching a few hours of sleep before making the two hour journey to my house to spend two nights together before he had to make the journey back home again.
His job also required him to travel abroad sometimes and most notable was a trip he took to India during which he felt terribly ill and seemed to take several weeks to recover.… Read More
Though notes would be good…
Photo: Catalina Olavarria/Flickr
‘Go the extra mile,’ you’re thinking, as you lie on your sofa. ‘I can’t go the extra inch. This isn’t some sponsored walk thing, is it?’
No, my friends, it’s not. It’s an exercise in financial efficiency – oh, the fun! – that will allow even the most broke among us to have a go at raising some money for our favourite charities.
Here’s how it works. Most of us have everyday opportunities to save a bit of money here and there but we don’t bother because the amounts are fairly trivial and it doesn’t seem worth the extra effort.… Read More
Gabby (Nielk) looks at the background to The Chronic Fatigue Syndrome Advisory Committee (CFSAC) and interviews 5 members including the Chairman…
”Any committee is only as good as the most knowledgeable, determined and vigorous person on it. There must be somebody who provides the flame.” Lady Bird Johnson
The mission of the U.S. Department of Health and Human Services (HHS) is to enhance the health and well-being of Americans by providing for effective health and human services and by fostering sound, sustained advances in the sciences underlying medicine, public health, and social services.
We are fortunate that The Chronic Fatigue Syndrome Advisory Committee (CFSAC) is one of ten advisory committees assigned by HHS.… Read More
Professor Stephen Holgate says ME/CFS is a spectrum of disorders that need to be understood through new approaches, and patients must be partners in research. Simon McGrath reports.
Houses of Parliament, site of Prof Holgate’s talk
ME/CFS probably isn’t one disease, or even a few different ones – but could be as many as fifteen. So said Professor Stephen Holgate, Chair of the UK Research Collaborative (CMRC), when he addressed the Forward ME Group in the House of Lords on 2nd July. He also argued that a radical New Science was needed to tackle ME/CFS and said patients must be partners in research.… Read More
London: site of the proposed UK Rituximab trial
Photo by fussy onion/Flickr
On June 6, the Norwegian Medical Research Council agreed to give a large enough grant to the Haukeland Rituximab trial for the study to begin. Later that day, the charity Invest in ME announced that they were initiating a UK Rituximab trial. It seemed to come out of nowhere. There were no details – cost, size, location, research team – but there didn’t need to be. The ME community started throwing money at the trial and trusted Invest in ME when it said it could be done.… Read More
by Jody Smith
Poor dental health may not be at the top of the list when you think of ME/CFS problems. But many of us who have been sick for any length of time can tell you some horror stories about our teeth. I don’t know if having ME/CFS is directly linked to poor teeth and all that can result, but the inability to get to a dentist or to pay for a visit will assuredly have a direct effect.
Do you have dental coverage? Many with ME/CFS don’t. I certainly don’t. We followed the only path open to us for years, which was to not go to the dentist. … Read More
Gabby (Nielk) reports on the launch by The 25% Group of this special day of understanding and remembrance for those severely affected by ME
I wrote the poem below about two years ago, in the midst of one of my harshest crashes. I was bedridden for many months. I was in pain most of the time and totally helpless and reliant on others. It was the darkest time of my life…
However, I consider myself one of the lucky ones, in that I eventually recovered to the point where today I am able to somewhat function: mostly within the confines of my house.… Read More
Mark Berry invites readers to join 11 organizations and 31 advocates and write to the CDC, asking them to include appropriate medical tests in their multi-site study.
The historical approach of the US Centers for Disease Control and Prevention (CDC) to the study of ME/CFS has not been universally well-received – and that’s an understatement. The majority opinion of the ME/CFS community seems to be that the CDC has had its head stuck in the sand, as far as ME/CFS is concerned, ever since CDC epidemiologists finally rolled into Lake Tahoe to investigate the outbreak there in 1984. But in recent years there have been some promising signs that the CDC may at last be starting to take the disease more seriously.… Read More
Hooked up for a CPET
Simon McGrath reports on Dr Snell’s new study demonstrating that ME/CFS patients have a reduced capacity to exercise when they repeat a maximum exercise test one day on – unlike healthy controls.
One of the biggest problems of getting ME/CFS taken seriously is that often we ‘look’ normal, even though we feel lousy, and most lab tests produce ‘normal’ findings. How do we prove to the world that we are sick?
A defining feature of ME/CFS is Post-Exertional Malaise (PEM) and a couple of studies have clearly demonstrated PEM in patients [see box]. However, PEM is a subjective experience and one that can only be measured by patient self-report, which won’t satisfy everyone.… Read More