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
by Jody Smith
Chronic illness and the Poverty Diet often go together. Far too often. I was on the Poverty Diet for many years. I have ME/CFS, my husband Alan deals with crippling past injuries and fibromyalgia. We raised our children on the Poverty Diet during more than half their childhoods.
It is a no-brainer (pardon the ME/CFS pun) that when you can’t work, you aren’t making any money. It is less obvious, to many who haven’t been through it, that people who can’t work because of poor health are not automatically protected by any kind of federal safety net – social, financial or otherwise.… Read More
Mark Berry introduces Dr Neil Coulson and Anna Maddison from the University of Nottingham, and their new 2-part research project with Phoenix Rising
The most rewarding part of my work with Phoenix Rising is meeting people who tell me that treatment information they have found on our forums has dramatically changed their lives and their health, or that the forums provide them with valuable social and emotional support in their isolation and are a vital ‘lifeline’ for them. After all, the forums are a central part of Phoenix Rising’s work – they are the largest ME/CFS forums in the world, and how I found the organization in the first place – and the non-profit provides and manages these forums in the hope and belief that they are a valuable resource to the ME/CFS community.… Read More
No, not that one!
Photo: Markg6, Flickr
Amazon.com, Inc.: it’s huge! It’s the biggest online retailer in the world and, weirdly, we can easily divert some of its mighty river of money into Phoenix Rising’s coffers. For free! Free, my friends!
First I’m going to tell you how to do it and then I’m going to tell you why.
How to make Amazon give Phoenix Rising free cash
Amazon pays a whacking 5% to 8% of the price of your purchase to any affiliate site from which you arrive at it, with absolutely no extra cost to you.
Phoenix Rising has affiliate links to the following Amazon stores and clicking on your country’s link will take you straight to your usual Amazon home page (go on, have a go):
• Phoenix Rising’s US Amazon Store
• Phoenix Rising’s UK Amazon Store
• Phoenix Rising’s Canadian Amazon Store
• Phoenix Rising’s Deutsches Amazon Speichern
• Phoenix Rising Française Amazon Store
• Phoenix Rising Españoles Amazon Store
Whatever you buy during that ‘trip’ to the store will benefit Phoenix Rising.… Read More
Backwards, forwards.. just so long as you vote!
Image by Dean Terry/Flickr
After pushing so hard for so many of our organizations in these online voting contests, it’s refreshing to ask you to vote for us this time! Both Phoenix Rising and PANDORA are in the Bogs (lovely name) Footwear contest in which the top two charities will each win $2,500 (£1,700, €1,900), and we can all vote for both.
Phoenix Rising, of course, provides the ME/CFS community with reliable information, advocacy, support for other charities and a busy forum; PANDORA Org advocates and educates about neuro-immune diseases including ME/CFS, fibromyalgia, Lyme and Gulf War Illness, targeting local and national US government agencies to influence policy and improve patients’ lives.… Read More
by Simon McGrath
‘Let the Patient Revolution begin‘. A militant cry from those difficult, demanding ME/CFS patients unwilling to listen to doctors and researchers who only have patients’ best interests at heart? No, this dramatic call comes from a pillar of the medical establishment, the British Medical Journal (BMJ). Its recent editorial argues that the healthcare system as a whole is, far from being benign, actually badly broken and can only be fixed by an active partnership with patients:
[Most patients face] tests and treatments whose merits are hyped and harms underplayed…
Practice is informed by an incomplete research base bedevilled with selection and reporting bias, and at worst fraud.
… Read More
by Jody Smith
For most years in the last two decades, summer has been my best season. My serious crashes always took place between September and April. And every year, beginning in May, I would begin my slow climb back toward something resembling health.
Laying outside in the sun for 20 minutes or so in the mornings seemed to make a difference surprisingly quickly. Being able to go for walks, being out in the summer weather, increased my mood and seemed to be one of the factors decreasing my ME/CFS symptoms.
By mid-summer I usually had advanced to being a dull/normal.… Read More
Imagine that you’ve just been put in charge of the world’s ME/CFS research – yes, you – and you’ve got to decide what research you want. Come on, hurry up!
Erm, erm, erm… oh yes, well, of course, as a patient you want something that’s going to get practical benefit for you in the shortest time possible. You’ve been waiting decades for treatments: you want them fast. But you’re not some medical genius so how are you going to choose what research should be done? Well, you could get the best ME/CFS researchers in the world, shove them in a room together and not let them out until they’ve come up with a list of the best, fastest-payoff, top priority projects, and… hang on a minute, somebody’s just done that.… Read More
Simon McGrath examines the latest research publication from Professor Baraniuk and Dr Rayhan
Exercise challenge is fast the becoming THE key method when studying illnesses characterised by Post Exertional Malaise, such as Gulf War Illness (GWI) and ME/CFS. A paper just published looks at how exercise affects pain, cognitive performance, heart rate and brain functioning in patients with GWI. These patients also happened to meet the criteria for CFS, albeit only based on questionnaire diagnosis, making this study particularly interesting from an ME/CFS perspective.… Read More
by Ryan Prior
Photo: Amanda Bloch Prior
On June 10, I announced in USA Today that I am setting out to write and co-direct a documentary film — The Blue Ribbon — on ME/CFS with my girlfriend, Nicole Castillo, who is a filmmaker with a special interest in medical and social justice projects. I am a writer and researcher who has had ME/CFS for over six years. We believe our youthful enthusiasm, specific qualifications, life experience and goals make us the perfect people to step up and do this.
The whole of my life revolves around a single day: October 22, 2006.… Read More
Gabby (Nielk) and Russell (Firestormm) continue our summary of the FDA Workshop with a look at the first part of Day Two – a discussion entitled “Innovation, Expedited Pathways, and Regulatory Considerations”
The FDA Drug Development Workshop for Chronic Fatigue Syndrome (CFS) and Myalgic Encephalomyelitis (ME) took place on the 25th and 26th of April 2013. It was well attended by patients, advocates and doctors, together with representatives from the CDC and pharmaceutical companies.
The workshop was also broadcast live over the internet, enabling many more people to follow what happened without being there in person. This meeting was an opportunity for us to be heard, and continues to be an opportunity as comments can still be added to the docket until August 2nd 2013.… Read More
On June 12, twelve ME/CFS organizations (including Phoenix Rising) and twenty-three advocates wrote to William B. Schultz, General Counsel of Department of Health and Human Services (DHHS), calling for an immediate investigation into the alleged intimidation of three voting members of the CFS Advisory Committee (CFSAC).
Enclosed with the letter to Schultz was a transcript by Joe Landson of the section of the May 23 CFSAC meeting in which Eileen Holderman stated that Dr. Nancy Lee, the Committee’s Designated Federal Officer (DFO), had intimidated her and two other Committee members, and Dr. Mary Ann Fletcher stated that she had been threatened with eviction from the Committee for expressing her views.… Read More
Mark Berry looks back on the second day of a controversial CFS Advisory Committee Meeting
The CFS Advisory Committee (CFSAC) provides advice and recommendations to the Secretary of Health and Human Services (HHS), through the Assistant Secretary for Health, on issues related to myalgic encephalomyelitis and chronic fatigue syndrome (ME/CFS). The committee meets twice a year, and the Spring 2013 committee met on May 22-23 in Washington D.C. As usual, the meeting was streamed live over the internet, and video will be available on the CFSAC website in due course. The agenda for this meeting can be viewed here, and the roster of committee members is here.… Read More
Dr Maria Gjerpe, founder of MEandYou
On 9 March, ME/CFS patient Dr Maria Gjerpe started a 90-day campaign to raise $1.2 million (£780,000, €920,000) to fund a confirmatory trial of the effects of immune drug Rituximab on the disease at Haukeland Hospital in Norway. Ninety days because that’s all she could confidently commit: she herself had gone from bedridden to completely well on Rituximab in a pilot study at the hospital but she knew that 80% of patients relapsed after several months.
As Maria worked 12-hour days without a break, the campaign rapidly went international and patients and supporters from all over the world piled on to make it happen.… Read More
On May 12th, 9 ME patient organizations (including Phoenix Rising) and 26 advocates sent a letter to Secretary Sibelius, Dr. Howard Koh, Dr. Thomas Frieden and Dr. Francis Collins at the Department of Health and Human Services (DHHS). In that letter, we expressed our strong concerns about the department’s current definition activities related to “CFS” and called on them to start using the Canadian Consensus Criteria for ME, which requires the hallmark symptom of post-exertional malaise. A summary and FAQ about the letter is here, and the Phoenix Rising article about it is here.
Tell DHHS: Fatigue is not a disease
For those of you who wish to become part of this important initiative, a petition has now been created calling on the DHHS to stop using the term “chronic fatigue syndrome” and the vague “CFS” definitions and start using the Canadian Consensus Criteria.… Read More
You know what to do…
Image from the Kheel Center, Cornell University
I’m writing this the morning after an unprecedented win for our community in an online voting competition. On 1 June, one of our charities, MEandYou, pulled in an astonishing 8,000 votes in only four days in the Stormberg contest. The highest previous level I can remember was less than half that and took several weeks to achieve.
MEandYou won that contest by 1,000 votes at midnight but earlier that afternoon, the opposition were only 14 votes behind.
That shows two things: your vote counts, because the margin can get very narrow; and, as a community, we have very large numbers and can smash these competitions if we come together.… Read More
by Simon McGrath
Prof Stephen Holgate
The new UK CFS/ME Research Collaborative has had its first meeting and it very much looks like it means business. They have plans to rev up the research agenda and raise funds – and they have key players on board too.
The CMRC is chaired by Stephen Holgate, MRC professor of Immunopharmacology at Southampton, with Dr Esther Crawley as vice chair. There are then five charities and five further researchers to complete the Executive Board.
So far Professors Julia Newton (Autonomic system & fatigue), Hugh Perry (Neuropathology), Paul Little (Primary Care Research), and Peter White (Psychiatry) have been appointed, with one more to follow.… Read More
Mark Berry reports from London on the 8th Invest in ME International ME Conference.
This was only my second year at the Invest in ME conference, but already I feel right at home! The presentations you’re about to read about are only half the story; the opportunity to mingle and network with a family (yes it really does feel like a family!) of top researchers, physicians, campaigners and patients from all over the world, is absolutely priceless. And this year, the new spirit of hope and togetherness in the air was a joy to behold.
The title this year was “Mainstreaming ME Research: Infections, Immunity and Myalgic Encephalomyelitis”, and the twin themes – an emerging consensus around a ‘paradigm shift’ to thinking about ME as an autoimmune disorder, and a focus on strategies for effective research and a breakthrough into the scientific mainstream – fit together perfectly.… Read More