International ME/CFS and FM Awareness Day is May 12th, 2017. Jody Smith shares some information about upcoming events and ways you can be heard …
Can you believe it’s been 25 years since Thomas Hennessy, Jr., chose May 12th to be our international awareness day? He was influenced by the fact that May 12th was also Florence Nightingale’s birthday. This famous English army nurse played a role in the creation of the Red Cross and originated the first school of nursing in the world.
She also had a debilitating, unnamed chronic illness which left her bedridden for the last 50 years of her life.… Read More
This holiday season Jody Smith turns her eyes to the people of Phoenix Rising and gives thanks for you all …
Phoenix Rising is a community that I will always love. Seven years ago I stumbled upon this place in its early days. I had been isolated and lonely for a number of years because I have ME/CFS, and finding this place and these comrades in disease was life-changing for me.
As is the common story with ME/CFS, I had gone through the personal culture shock of having had a perfectly fine social life, personal life, family life, and the ability to do most normal things with only the normal amount of struggle — and then had it all ripped away from me.… Read More
Never heard of Invisible Illness Awareness Week? You’re not alone. Jody Smith sheds a little light to make it more visible …
From time immemorial, people have been pushed aside and ignored for one reason or another. Nobody likes feeling invisible. That goes for the kid in the playground who doesn’t get chosen for baseball, for the person overlooked by the boss, whose name is left off the group photo.
It’s also true for people who are sick, but don’t look like there’s anything wrong with them.
Lisa Copen founded Rest Ministries in 1996 after being diagnosed with rheumatoid arthritis. She went on to establish Invisible Illness Awareness Week in 2002.… Read More
The Microbe Discovery Project outlines an ambitious new study by top researchers that has collected patient samples, but needs desperately funds to complete the work.
Dr. Ian Lipkin
Columbia University’s Center for Infection and Immunity(CII) has seriously upped the ante on the initial microbe discovery project in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Their impressive, rigorous new study could point the way to diagnostic tests, and even treatments – but first they need the funds to complete the work.
ME/CFS is an urgent challenge in clinical medicine and public health. There is no diagnostic test or specific treatment for ME/CFS, and in the United States alone there are a minimum of 836,000 afflicted individuals.… Read More
Jody Smith joins with other ME voices in honor of Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis.
August 8th, 2016 is Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis, an important day in the ME community. It’s a day that is intended to bring attention to those whose voices are the most quiet, whose presence is so easily overlooked.
Their footprint leaves next to no mark.
It’s a day that doesn’t get a lot of attention from outside our ranks. But we are determined to change that.
I have lived with symptoms of ME for the last quarter of a century.… Read More
Mark Berry reports on Dr. Gibson’s introduction and Dr. Whittemore’s keynote speech, at the 11th Invest in ME International ME Conference in London.
The 11th Invest in ME International ME Conference (IIMEC11) was held at One Great George Street, just down the road from its former home, on June 3rd, 2016.
You can view the full conference programme (with photos and biographies of the speakers) here. The highly-recommended DVD of the conference is now available for pre-order, and Kina did an amazing job tweeting the conference live for Phoenix Rising.
The first article in this series summarised all of the presentations at the conference.… Read More
Mark Berry presents the first in a series of articles on the 11th Invest in ME International ME Conference in London …
The 11th Invest in ME International ME Conference (IIMEC11) was held at One Great George Street, just down the road from its previous home on Birdcage Walk, on Friday June 3rd, 2016.
You can view the full conference agenda (with photos and biographies of the speakers) here and the Conference Journal is available to download as a PDF. The highly-recommended DVD of the conference is now available for pre-order, and Kina did an incredible job tweeting the conference live for Phoenix Rising.… Read More
Simon McGrath provides a patient-friendly version of a peer-reviewed paper which highlights some of the most promising biomedical research on ME/CFS …
Recently, Professor Jonathan Edwards, with patients and carers as co-authors (including me), published a peer-reviewed editorial in the medical journal Fatigue: Biomedicine, Health & Behavior. The article became their most-viewed paper within a few days.
The editorial highlights some of the most promising biomedical research on ME/CFS, discusses possible broad models to understand the illness, and suggests practical steps to speed up progress.
Our paper is a direct call to the wider biomedical research community to actively target ME/CFS, but we hope that patients will also find the paper useful as a summary of current theories about what causes the illness, and some of the most promising research leads right now.… Read More
Phoenix Rising is delighted to support the demands being made in the ME/CFS community’s first-ever global day of protest …
Campaign platform #MEAction is organising a global day of protest for ME and CFS, with a campaign called “Millions Missing,” reflecting the millions of patients “missing from their careers, schools, social lives and families,” the millions of dollars “missing from research and clinical education funding that ME should be receiving” and the millions of doctors who are “missing out on proper training to diagnose and help patients manage this illness.”
The campaign quickly outgrew its original focus on the US capital and now includes patient-led protests on May 25th at US Department of Health and Human Services (HHS) offices in Washington DC, Dallas, San Francisco, Seattle and Boston, and the Centers for Disease Control and Prevention (CDC) offices in Atlanta.… Read More
Sasha announces a new resource of appropriate photos for ME/CFS media stories …
We’ve all seen them in the news stories about ME/CFS: the guy in a suit at the office, yawning; the beautiful woman sitting at her desk with her immaculate make-up and elegantly coiffed hair, hand to her head and looking slightly pained.
No! Not this beautifully groomed woman with a mildly troublesome sore throat!
But do pictures that illustrate ME/CFS by showing office workers suggest that this level of function is as bad as this condition gets?
For years, patients have been up in arms about this issue, and #MEAction recently started a great campaign for patients to contribute their own photos to the cause.… Read More
Mark Berry, Acting CEO of Phoenix Rising, presents the Board of Directors’ open letter to Queen Mary University of London (QMUL) urging them to release the PACE trial data, and hopes that other non-UK organisations will join British charities in the same request…
On 1 February, ME/CFS patient Clark Ellis wrote an open letter to seven major British ME/CFS charities to ask them to contact QMUL.
He wanted them to write their own open letters to request QMUL to abandon its appeal against the Information Commissioner’s decision that it must release PACE trial data to a patient who had requested it for independent analysis.… Read More
Simon McGrath concludes his blog about the remarkable Prof George Davey Smith’s smart ideas for understanding diseases, which may soon be applied to ME/CFS.
George Davey Smith
Last November, science star Professor George Davey Smith gave a talk at the UK CFS/ME Research Collaborative (CMRC) Annual Science Conference laying out ideas for bigger, better, smarter research. Although much of his talk wasn’t focused specifically on ME/CFS in particular, his points are of great interest to the ME/CFS community.
This is because Davey Smith has said he’s keen to play a role in the largest research set of studies ever proposed for ME/CFS: Professor Stephen Holgate’s Grand Challenge, which is now moving forward.… Read More
Read about the talk that stole the show at a recent ME/CFS conference in Simon McGrath’s two-part blog. Here’s Part 1 …
George Davey Smith
Last November, science star Professor George Davey Smith gave a talk at the UK CFS/ME Research Collaborative (CMRC) Annual Science Conference that focused on bigger, better, smarter approaches to research.
Since then, Davey Smith has said he’s keen to play a role in the largest set of studies ever proposed for ME/CFS: Professor Stephen Holgate’s Grand Challenge, which is now moving forward.
The plans are for a ‘big data’ study using a huge cohort that could be 10,000 patients strong.… Read More
As the old year wanes and the new one beckons, Jody Smith reflects on the nature of change …
Does the end of the year make you pensive and cause you to look back? It has that effect on me.
I don’t make New Year’s Resolutions. I don’t think I ever really did, but the last decade or two would have been enough to stifle that impulse. I’ve just been too aware that I don’t have that much control over what happens in my life.
It may just be that I am living less under the illusion that I am the Master of my own universe than people who haven’t been ill or broke for years.… Read More
- Professor James Coyne
Sasha summarises Professor James Coyne’s recent no-holds-barred talk on the PACE trial and points you to the slides, video, audio and transcript.
Outspoken psychologist and professor of psychology James Coyne of the University of Pennsylvania blasted the PACE trial in a public talk in Edinburgh, Scotland, on 16 November, 2015.
The PACE trial was a £5 million UK trial of cognitive behavioural therapy (CBT) and graded exercise therapy (GET) for patients with chronic fatigue syndrome (CFS). Its authors claimed that the therapies were beneficial to patients, but its methods have been heavily criticised.
The slides from Professor Coyne’s talk have been viewed online over 8,000 times.… Read More
Sasha invites you to sign a new petition to the HHS to protect patients against the PACE trial, CBT and GET …
A brand-new and crucial #MEAction petition has just been launched, opening a new front in the rapidly escalating battle to protect ME/CFS patients from the misleading results of the PACE trial and similar studies.
The PACE trial was a £5 million UK trial, published in The Lancet, whose authors claimed that it showed that cognitive behavioural therapy and graded exercise therapy were beneficial for patients with chronic fatigue syndrome.
Patients have long criticised the trial’s poor methodology and bizarre analyses.… Read More
Mark Berry reports on the 10th Invest in ME International ME Conference in London.
The 10th Invest in ME International ME Conference (IIMEC10) was held, as usual, in the Lecture Theatre at 1 Birdcage Walk in Westminster on May 29th, 2015.
You can view the full conference programme (with photos and biographies of the speakers) here. The highly-recommended DVD of the conference is now available.
Also, the pre-conference issue of the Journal of IiME, which gives details of the speakers, and abstracts of the talks, is available as a PDF document here. Invest in ME (IiME) have posted a conference report by Rosamund Vallings, and Phoenix Rising tweeted the conference live.… Read More
Why should home care be the theme on Understanding and Remembrance Day for Severe ME on August 8? Helen Brownlie of the 25% ME Group has written an explanation for Phoenix Rising …
August 8, 2015, will be the third annual Understanding and Remembrance Day for Severe ME. To mark this, the 25% ME Group — a support organisation for people who have severe myalgic encephalomyelitis — are focusing on care. We’ve done this in view of the truly dreadful service responses that our members increasingly report encountering here in the UK.
Clearly there’s a major gap between the care needs of people with severe ME and professional perception.… Read More
Professor Olav Mella (left) and Dr Oystein Fluge
Sasha gives the background and Simon gives the interpretation of the latest study from Haukeland, published today…
It’s out! Dr Øystein Fluge and Professor Olav Mella have published their new study in PLoS ONE. And though the study was not a blinded, placebo-controlled trial, the results are further evidence that rituximab is beneficial in some ME/CFS patients, and potentially life-changing for a substantial minority. The findings also give important new insights into the optimum dosing schedule to maintain those benefits in the long run.
We all know the story that led up to this study: cancer specialists Fluge and Mella treated an ME patient for cancer with the immune-system drug rituximab.… Read More
Sasha explains how we can each help to make the most of big media stories about ME/CFS…
Love it, hate it, good story, bad story… the media are going to keep reporting on ME/CFS no matter what. But isn’t it time that we saw that coverage as an opportunity?
I think we should, because when an ME/CFS story breaks, the doors open to getting responses to that story into the media. It’s our chance to get out our key messages, particularly:
- scientific research shows that this is a devasting organic disease, not a psychological illness;
- governments are underfunding serious research into this disease;
- everyone should be donating to our biomedical research charities.
… Read More