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
Dr. W. Ian Lipkin
Simon McGrath reports on Dr. Lipkin’s talk to patients in London …
In a talk to patients in London on 3rd September, Dr. W. Ian Lipkin described the extraordinary lengths he and his team are prepared to go to in order to track down the source of an illness, with examples ranging from autism to the strange case of Kawasaki disease.
His talk emphasised the use of high-tech methods and following the evidence wherever it leads, before outlining his ME/CFS research programme that takes a similar approach. And he believes the action in his field is moving from acute illnesses such as SARS to chronic illnesses – including ME/CFS.… Read More
Ryan Prior shares his experience and his thoughts from attending the Stanford Medicine X Conference as he contemplates the rising of the ePatient Revolution …
We need more and more ME/CFS patients to integrate into the ePatient (“engaged/empowered patient”) Revolution. Get informed, tell your story, unite with other patients online, and change health care for the better.
Six weeks ago, I attended the Stanford Medicine X Conference, an annual forum that celebrates “emerging technologies in medicine.”
The conference, similar to what you might expect from a TED conference, is particularly notable because it so thoroughly celebrates the patient perspective and because it has a massive social media impact.… 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
Mark Berry introduces the new President of Phoenix Rising, Dr. Gary Solomon, and welcomes Professor Jonathan Edwards to the Phoenix Rising Board of Directors.
On behalf of the Phoenix Rising Board of Directors, I’m delighted to announce the appointment of two new board members. Regrettably, I also have to say goodbye to one.
Karen Luoto has stepped down as President.
I would like to express my profound gratitude to Karen for the vital work she has done in the last two years to stabilize and professionalize Phoenix Rising’s core administrative processes. I cannot stress enough what a crucial job this has been.… Read More
Gabby Klein gives an overview of the P2P process, shedding light on the pitfalls with advice as to what we can do in protest …
Right after I wrote this article, the draft review was made public HERE. We have started a thread HERE on Phoenix Rising in order to discuss this review. The review in its final form will be the evidence presented to the P2P panel in advance of the Workshop in December.
Comments will be accepted till October 20th – HERE.
What is the P2P?
The National Institutes of Health (NIH), through the Office of Disease Prevention (ODP) has a new program called the Pathways to Prevention (P2P).… 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 loves knitting. Again. She thought her days of knitting and purling were long over but … she’s back …
A dozen years ago I was so decimated by ME/CFS that I couldn’t read, watch TV, or flip through a magazine. My days were spent zipping back and forth along the spectrum of waking and sleeping.
I was wide awake staring at the ceiling, undulating with a seasick vertigo and parasthesia. I was fitfully in and out of sleep. I was sleeping deeply for long and irregular hours, waking sometimes in the middle of the night, in the middle of the afternoon, in the evening … interesting that rarely did I wake at a “normal” hour of the morning.… Read More
Andrew Gladman explores the current and historic hypotheses relating to nitric oxide problems in ME/CFS. This second article in a 2-Part series puts nitric oxide under the microscope and explores what it is, what it does and why it is so frequently discussed in the world of ME/CFS.
The focus of this article is to build upon the previous article and explore how the hypotheses surrounding ME/CFS and nitric oxide weigh up against one another. It is therefore advised to read Part 1, which can be found here, first.
In the last article we explored what exactly nitric oxide is, how it is produced in the body and the numerous different functions it has over a variety of different bodily systems.… Read More
Andrew Gladman explores the current and historic hypotheses relating to nitric oxide problems in ME/CFS. Part 1 of a 2-part series puts nitric oxide under the microscope and explores what it is, what it does and why it is so frequently discussed in the world of ME/CFS. Part 1 focuses on what nitric oxide is, how its produced and what exactly it does …
Over the years there have quite a number of proposed disease mechanisms relating to nitric oxide (NO) problems of patients suffering with ME/CFS. Studies have however, over the years, proven somewhat inconclusive in the past.
Dr. Pall is historically one of the staunch believers in the hypothesis that ME/CFS is a result of abnormal functioning of the nitric oxide cycle and the downstream effects this can have.… Read More
Simon McGrath looks at new objective evidence of abnormal response to exercise in ME/CFS patients, and the questions that researchers are still trying to answer …
Exercise testing at Dr. Keller’s lab
Given the doubt, scepticism and even denial of benefits that often confronts ME/CFS patients, it’s not surprising that many patients crave clear-cut, objective evidence of physiological problems in the illness. Preferably something that will explain at least some of the perplexing symptoms. Something that will say: “this is real”.
And finally it seems researchers might be closing in on this.
Two-day maximal exercise tests promise to provide objective evidence for the most striking and unusual feature of the illness, the exhaustion and flare of symptoms following exercise, called post-exertional malaise.… Read More
Andrew Gladman brings our coverage of the Understanding & Remembrance Day for Severe ME, airing the voice of patients …
Long, lazy August afternoons. The sun is shining, the birds are singing, the garden growing, and the children are free from school. For many this time of year means holidays, family get-togethers, and a period of general relaxation.
However, for sufferers of severe ME, this time of year is rapidly becoming a time of united effort to get severe ME onto the radar of the general population.
The time has once again come for us to report upon the Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis.… Read More
Mark Berry continues his series of articles on the 9th Invest in ME International ME Conference in London, with the emphasis shifting from autoimmunity to pathogens and the gut …
This is the second in a series of articles reporting on the 9th Invest in ME International ME Conference (IIMEC9), held as usual in the Lecture Theatre at 1 Birdcage Walk in Westminster on May 30th, 2014.
You can view the full conference programme (with biographies of the speakers) here, and the Conference Journal is available as a PDF document here. Invest in ME have posted a conference report by Dr.… 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
Andrew Gladman puts hyperparathyroidism under the microscope, exploring what the disease is, how it can mimic ME/CFS in presentation and how it is treated.
Diagram showing location of parathyroid glands
Chronic fatigue syndrome or ME/CFS is, whether we like it or not, by current definition a diagnosis of exclusion. The biggest diagnostic task is therefore differentiating it from the plethora of other disorders that also have a fatigue component.
ME/CFS may be distinguished from other causes of fatigue on the basis of certain presenting symptoms such as cognitive dysfunction, which is not present in almost all other fatigue-producing disorders. Once a specific cause of fatigue has been diagnosed, CFS is then excluded, by definition.… 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
Mark Berry begins a series of articles on the 9th Invest in ME International ME Conference in London, with a look at three presentations on autoimmunity
This is the first in a series of articles reporting on the 9th Invest in ME International ME Conference (IIMEC9), held as usual in the Lecture Theatre at 1 Birdcage Walk in Westminster on May 30th, 2014.
You can view the full conference programme (with biographies of the speakers) here, and the Conference Journal is available as a PDF document here. Invest in ME have posted a conference report by Rosamund Vallings, and Phoenix Rising tweeted the conference live.… Read More