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
by Cort Johnson
It’s no fun when your ‘gas tank’ is empty. In fact it’s crazy how many of us are running on fumes on so many levels…personally, medically, financially…How nice it would be, out of the blue, to have a little fill up once in a while.
With the winners of the contest riding away with a cool $5,000 in Citgo gas cards, the Citgo Refueling Contest provides a chance, literally, to fill chronic fatigue syndrome patients’ gas tanks. I was a lucky recipient of one of those cards from a past winner and I can tell you it made a big difference during a difficult month financially.… Read More
In the next five hours NIDA will either win 20K or 10K
We can’t thank you enough for the support you’ve given Phoenix Rising. In one day we’ve rocketed up to 136th from 179th – a rise we suspect is rather unprecedented :). We’re tremendously honored by your support.
The big concern now is keeping the Neuro Immune Disease Alliance (NIDA) in the $20,000 category. NIDA needs to be in the top 96 to win $20,000 and right now with they’re at 87th and things could go either way in what is easily the busiest day of the contest.
NIDA is the brainchild of two parents, Linda and Don Tannenbaum, whose daughter fell suddenly ill with ME/CFS when she was sixteen. … Read More
(Things are finally starting to move…The FDA is responding but no meeting dates are set. Stop now and we risk losing our chance; keep working and we can bust this thing wide open. We are on the brink of getting a historic meeting at the FDA…
The FDA can be very pro-active in the drug approval process – we’re simply asking that they be pro-active with the only major disorder they’ve never approved a drug for. – ME/CFS! Let’s keep the pressure on by emailing the feds every day until the 25th….Cort.)
To All who took ACTION requesting THE FDA TO HOLD A STAKEHOLDERS MEETING for ME/CFS.… Read More
Reno (the Littlest Big City in the World’) is not your typical conference destination but it was hard to imagine a better spot for the 9th International IACFS/ME meeting. Much water has passed under the bridge since the plight of those Incline village residents made headlines across the country thrust this disease back out into the open. At the time Dr. Peterson was living the good life with a small practice in a resort town in Sierra Nevada ski country.… Read More
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
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 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
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
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
Ready to get technical? The research section contains overviews of chronic fatigue syndrome (ME/CFS) research topics. Created by and for laypeople they can – as befits the subject – be challenging.
The Brain in Chronic Fatigue Syndrome (ME/CFS)
– check out a series of papers on one of the most exciting place in ME/CFS research – the brain.
The Heart of the Matter?
… Read More
It can be hard for a newpaper’s picture editor to find an appropriate image to illustrate an ME/CFS article. ME/CFS is a seriously disabling disease with patients at the severe end of the scale tube-fed, lying in darkened rooms, unable to leave their beds.
Realistic photos of how disabling this condition can be would show people unkempt, not well groomed; in a home, not a work setting; in pyjamas or comfortable clothes, not office-wear; and lying down in bed or on a sofa, or being pushed in a wheelchair, or being treated in hospital. Men would be shown, as well as women.… Read More
Over the years, Phoenix Rising has published interviews with scientists, clinicians, campaigners and patients. Many are listed below (with the most recent first), and the latest interviews can be found on our home page.
Scientists and clinicians
… Read More
For general information about ME/CFS, our own site, our forums, the various ME/CFS support groups and research charities are all good sources. You can also subscribe to our newsletter (see the right hand sidebar).
But there are some great, additional information resources out there: here are some of the most valuable.
Online video series
ME/CFS Alert: Llewellyn King is a well-known British journalist living in the US who specialises in US politics. When a friend of his developed ME/CFS, he was so appalled at the suffering of patients that he started ME/CFS Alert, a series of online video interviews with major figures in the ME/CFS world, including leading researchers and clinicians.… Read More
You can, with care and supervision, do a rough-and-ready test at home for orthostatic intolerance: the ‘poor man’s tilt test’. This will give you an indication of whether you are likely to have orthostatic intolerance.
Formal, more reliable diagnosis of orthostatic intolerance is done in a clinical setting using a ‘tilt table test’ in which a patient lies flat on a table which is then tilted through about 70 degrees until it is almost vertical. The table has a footplate that takes the patient’s weight in this position.
The patient remains completely immobile while their heartrate and blood pressure are monitored, usually until the point at which they develop symptoms.… 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