Mark Berry asks why the US HHS contract with the Institute of Medicine (IOM) to re-define ME/CFS has provoked such an unprecedented storm of protest, and explores the reactions of patients, organizations, experts and bloggers to the so-called ‘Death Contract’.
At the latest count, 50 leading ME/CFS clinicians and researchers and 66 well-known ME/CFS patient advocates have called for the HHS contract with the IOM to be cancelled.
On September 23rd, 2013, the US Department Of Health and Human Services (HHS) made an announcement that was to send shock waves through the worldwide ME/CFS community. The HHS contract with the Institute of Medicine (IOM) to recommend new clinical diagnostic criteria for ME/CFS has united ME/CFS organizations, patients, advocates, physicians and clinicians as never before – in opposition to the HHS/IOM contract, or ‘Death Contract’ as some have called it.… Read More
Gabby (Nielk) presents a nightmare vision of what the future might hold for ME/CFS patients in the US, if the Institute of Medicine (IOM) contract to redefine ME/CFS turns out as badly as many patients and advocates fear.
Imagine that you magically wake up to a day in October of 2015. Unfortunately you are still ill with ME/CFS and it’s just another ordinary day of suffering for you. As usual, you log on to your computer with your favorite drink in hand. You start becoming edgy because you can’t seem to find your usual sites. You don’t see any mention of Myalgic Encephalomyelitis (ME) nor Chronic Fatigue Syndrome (CFS). … Read More
The fourth in a series of short articles attempting to explain the science behind fairly common topics and exploring how they relate to ME. This time the topic is the Cardiovascular System – by Andrew Gladman.
The cardiovascular system is not one that is commonly discussed in relation to ME, and yet it is an area that research has shown displays one of the more measurable abnormalities in patients.
Suffice it to say that many of the symptoms that ME patients suffer with, such as muscle fatigue, dysregulation of the nervous system and headaches, could come as a direct consequence of abnormalities in the vascular system.… Read More
Filmmaker Jennifer Brea launches the Kickstarter campaign today with the trailer of her forthcoming documentary Canary in a Coal Mine – a film that will help change the face of ME. Interview and article by Russell Fleming (Firestormm).
Jen after a day of filming.
“I will never do a full day of shooting again.”
© Canary in a Coal Mine
When did you first get sick and why did you decide to make a film?
“It started with the worst flu of my life. Then, it progressed into a more markedly neurological disease, starting with a rather scary episode where I was unable to write my own name.… Read More
The third in a series of short articles attempting to explain the science behind fairly common topics and exploring how they relate to ME. This time the topic is Mitochondria – by Andrew Gladman.
A single mitochondrion – hundreds of these organelles exist within each single cell of the body.
Over the years it is fairly safe to say that finding consistent physiological abnormalities in ME has proven difficult for researchers, and that this has likely reinforced the notion that ME is largely a psychological disease – an error which only in recent years is being shaken off.
One area that has shown consistent interest is the mitochondria, with many researchers acknowledging or suspecting mitochondrial dysfunction as a real physiological problem.… Read More
Jody Smith explains how autumn sends her body into hibernation mode, and it’s time to slow down – or else.
I read recently that the term “autumn” is predominantly used in the U.K. “Fall” is more commonly used in the U.S. I’m Canadian, though, so I guess I can use either one. And I choose “autumn” simply because it causes less confusion. It always means the season.
Added to that, “fall” can also mean what happens to me in the autumn. Everything drops for me as summer wanes.
Even though this has been the case for about two decades, this fall or crash catches me off guard every autumn.
… Read More
The second in series of short articles attempting to explain the science behind fairly common topics and exploring how they relate to ME. This time the topic is Autoimmunity – by Andrew Gladman.
Electron microscopic image of a human lymphocyte.
In the last few years it’s fairly safe to say that the topic of autoimmunity has moved from a fairly unknown entity in the ME field to perhaps the leading hypothesis in many peoples’ eyes. This surge in attention likely comes from the rituximab trials in Norway undertaken by Doctors Fluge and Mella. By chance they discovered that ME patients, who then went on to develop lymphoma, treated with rituximab for their cancer also experienced significant, albeit transient, relief from near all of their ME symptoms.… Read More
It will cost you nothing more than an online vote to help see the National ME/FM Action Network enter the second round of the Aviva community competition to win $100,000. Voting in this round closes 14th October and you can vote every single day until then – so please join us and cast your vote now! By Firestormm.
Join us in sending the National ME/FM Action Network of Canada through to the second round of the Aviva Community Fund competition so that they can win $100,000 to be used to help raise awareness on 12th May 2014.
This is the first of three qualifying rounds of the online competition.… Read More
The first in a new series of short articles attempting to explain the science behind fairly common topics and exploring how they relate to ME. This time we delve into the complex and somewhat controversial world of viruses – by Andrew Gladman.
Computer generated image of Rhinovirus 3 capsid comprised of hundreds of copies of 3 proteins. Within this shell there is the viral genome and several functional enzymes to allow for replication of the genome and to aid the hijacking process.
I think it safe to say that no topic is quite as disputed as the role that viruses might play in the pathology of ME.… Read More
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