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
Sasha reports on Llewellyn King’s campaign to find a lone Congress member to do the right thing …
Llewellyn King, a well-known political journalist and long-time friend to the ME/CFS community, has made a direct call to U.S. Congress members to help us.
Posting on The Hill, a Congress-focused news blog, King has put out an attention-grabbing ‘want ad’:
Wanted: Member of Congress prepared to take up a cause.
Political party affiliation: Unimportant.
Geographic representation: Unimportant.
Fund-raising potential: Minimal.
Reward: Undying gratitude, lavish praise, thanks beyond counting.
Job description: In any way you can, draw attention to a debilitating, life-abducting disease.
… Read More
Sasha gives you the tour and tells you what it’s all about…
Jen Brea is a phenomenon. After working as a freelance writer in China and Africa, she enrolled for a PhD at Harvard in political science but, four years ago, got sick. She had a fever that lasted ten days.
Her health collapsed, and she was forced to go on medical leave. She got married, but was too ill to say her vows.
This was her entry into the world of ME/CFS. But fortunately for us, she had the skills, connections, support and attitude to use social media to do amazing things.… Read More
Hey, May 12 is our Day. Join with Jody Smith and let’s make some noise …
Did you know that May 12 belongs to us? Lots of us are aware of this. We share the buzz on it amongst ourselves. We add blue ribbons to profile pictures. We raise our voices, join our hands, mount the few podiums available to us and tug at the sleeve of the rest of the world.
We want their attention. We want to tell them all about us and we have a few questions of our own:
Did you know we are here? Did you know this day belongs to this chronically ill community?… Read More
As the 16 January, 2015 deadline for responding to the controversial P2P draft report draws near, and in the interests of balance and representing the whole community, Phoenix Rising presents two differing views on how to react. Today, Clark Ellis flags up important content to critique and to praise in the report. In her article, Gabby Klein makes the case for protesting the P2P process and not responding to its content.
P2P, or not P2P, that is the question.
So what’s the answer? When you boil it down there are only really two options.
1. The P2P process is flawed and invalid and we should either fight it, or ignore it, rather than participate.… Read More
Jody Smith may have dodged a holiday bullet this year. She’s hoping. Only time will tell. How did you fare?
How have you survived the holiday season? I’ve been thinking of you in the Phoenix Rising community all week. I wanted to write something before Christmas but … I thought I was in for a crash, as old symptoms started reappearing in mid-December.
I had been doing really well for some months — hadn’t needed my naturopath since August — and then I guess it was the creeping nearer of Christmas that was the final straw.
I started having trouble finding my thoughts, and when I could find them, finishing them.… Read More
Anyone else been poisoned along the way? Jody Smith tells part of her horror story …
Looking at my symptoms, many of which are far less these days and some are gone, it would be easy to figure that I’d just been dealing with some heavy-duty menopausal issues.
The sleep abnormalities, the brain fog, digestive issues, astonishing weight gain, I was the right age … I fit the menopause profile.
But then I remember some of toxins I’ve been exposed to over the decades, and I realize that whether menopause had anything to do with my becoming so sick for so long, there was more to it than that.… Read More
Have you had enough of all the neglect and abuse of ME/CFS patients? Gabby Klein says now is the time for a National PR Campaign for ME/CFS to impress a change. Join the Patient Revolution to restore power to ME patients …
Thirty years of neglect, incompetence and malfeasance by the Department of Human services (HHS) have rendered ME patients angry, frustrated and disgruntled. They remain invisible, misunderstood and very sick.
Any possible advance in the science of the disease has been squashed by the gross lack of funding by NIH for this severe disabling disease. In addition, the lack of education of the disease in medical schools has insured the lack of care for patients nationwide.… Read More
Persuasion Smith covers the bases on the misleading and disreputable name for our disease we’ve all been saddled with …
If there is one thing that is sure to get ME/CFS sufferers riled up, it is the name of our disease.
The very fact that two names are attached to each other, janus-like, almost as if mocking one another seems emblematic of all the controversy surrounding the illness.
If only we could just sort out the name, perhaps everything else would fall into place.
For how can anyone trust a condition with such a slippery, inconclusive title?
Dr. Derek Enlander suggested that we could re-name the illness ‘Ramsay’s disease’ in the grand tradition of calling diseases after the people who first documented them.… Read More
Having a chronic illness like ME/CFS can make it hard to avoid problems that come from bad ergonomics. Jody Smith has learned some lessons the hard way …
Ergonomics can help people to navigate in a healthy way through their world, so they are not slouching, bent funny or stuck in the same position for too long, and so they can avoid the aches, pains and problems that result from same.
Ergonomics and ME/CFS may seem like strange bedfellows. And in fact, actual ME/CFS bedfellows, those who must live all day long in their beds, may not find anything useful here.… Read More
Clark Ellis brings us a rare interview with British researcher Dr. Jonathan Kerr who is now living in Colombia.
Dr. Jonathan Kerr is regarded as one of Britain’s foremost myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) researchers, and an expert in microbiology, inflammation and genetics.Formerly of St. George’s University of London, he is now working at the Escuela de Medicina y Ciencias de la Salud, Universidad del Rosario, Bogota, Colombia.
Dr. Kerr kindly agreed to be interviewed, with topics including his recent publication, which identified SNPs associated with ME/CFS, his prior research of the disease, diet and its role in health, disease definitions, and why he dropped off the ME/CFS scene for a little while.… Read More
New grandma Jody Smith shares her frustrations about not being able to visit the new baby…
My daughter and son-in-law just had a baby last week. We are thrilled. But we won’t be able to see the baby or hold her any time soon. We won’t be able to take over little gifts or help out with housework or babysitting.
The little family lives a province away and we can’t afford to make the trip. And that includes not being able to afford the energy it would require.
People automatically — and naturally — ask if we’re going to fly out to see them, and I must repeat to one then another that, no we won’t be able to go.… Read More
Persuasion Smith shares some thoughts on the stigma that comes with ME/CFS …
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
It is not just a case of stigma. Yes, who wants to admit that they have ME/CFS? But then who wants to openly admit they have AIDS or hepatitis C, or that they wear a colostomy bag?
All illnesses are stigmatised: when you get ill people prefer to stay away.… Read More
Jody Smith has been taken by surprise by the value of having a dog when dealing with ME/CFS …
There’s been plenty of research indicating that having pets is good for your health. I never really noticed any particular benefits to having cats, though that may have had more to do with my cats. They’ve been fairly indifferent to my presence and we’ve shared a live-and-let-live type of relationship over the years.
Then I got a dog.
I didn’t even want this dog in the beginning, to be honest. My son Duncan had adopted Cleo, a German Shepherd-Lab mix that had ended up at the Humane Society after an injury that required amputation of her back left leg.… Read More
For Jody Smith, the ticking of a clock was enough at one time to chase her back to her bed. But with the passage of time, she has been able to reclaim her living room …
I have two clocks in my living room. One clock is on the wall across from where I usually sit at my computer. The other is on the wall to my left. I guess this might be an unusual arrangement, not to be found in most homes, but it has been practical for me.
I have had long intense bouts of what I have called tendinitis over the years, affecting my neck, shoulders, arms, hands, legs and feet.… Read More
If you’re ever at Jody Smith‘s house, don’t bother asking anybody if they are hungry …
One of the most ridiculous questions you can ask in my house is “Are you hungry?”
There are three of us here and for many years, none of us ever got hungry. When our brains would turn to mush, when our faces would go numb, and we would start the invisible vibration which is the signature dance of ME/CFS, we knew we needed to eat.
Or rather, we knew we should have eaten something about twenty minutes ago and saved ourselves this distress.
For me, this realization hit after I started eating low carb.… Read More