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So you want to take a stand and make a stink — do something more visible to help your ME/CFS community? Good for you. Consider organizing a demonstration (demo) to advocate for people with ME/CFS. Consider going public, alone or with others, in your call for more respect, more attention and, most importantly, increased government funding for research and treatments.
Organizing a demo is both easy and a bunch of work. Do keep in mind this reality check: After all the energy output, you could have a mild or significant relapse.… Read More
“We’re excited to be in this partnership with the WPI”
Dr. Ken Hunter, University of Nevada Reno
The Whittemore-Peterson-Institute ( WPI) has been through a brutal stretch of bad news lately; first their aggressively defended XMRV discovery didn’t work out, then the firing of their lead researcher, Dr. Mikovits, left them under attack from her supporters, then her alleged theft of research materials embroiled them in legal matters and then Harvey Whittemore was hit with a lawsuit alleging misuse of funds, some involving the WPI (the WPI counter-sued.) One began to wonder if the University of Reno was beginning to regret being associated with such a hot-button Institute.… Read More
For decades, ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) has devastated the lives of patients and our loved ones, leaving us with an alarmingly low quality of life. Today, ME/CFS affects the lives of more than 1 million Americans of both sexes and all ages at an annual cost of at least $21 billion in direct costs and lost productivity.
As patients and loved ones, we have suffered too long with too little research, a disbelieving medical community and no approved drug treatment specifically for ME/CFS.
This has to change! We know that we need many things, such as more money for research.… Read More
After 17 years of being ill with chronic fatigue syndrome, Patrick Wylie Kelly, took his life on April 15th leaving many in the ME/CFS community shocked.
An inspiring figure to many in Sept 2011, Patrick posted on the Phoenix Rising Forums that he (Hub_Halo on the Forums) was working on accepting the losses that come with the chronic illness and looking to find positives –something he had done for years.
“Jumping off from Penny’s quote that about the fight to hold onto bits and pieces of our former life AND from Cort’s welcome and frank reminder that depression and chronic illness often go hand in hand—-if it’s not obvious, we have to fight to find (or create) positive things in our ME/CFS life as we mourn the loss of our old life.
… Read More
In a year of intriguing studies this is one of the more intriguing. Stress has been something of a keynote in CFS research lately and researchers now regularly employ different kinds of stress tests to provoke abnormalities in patients. But does this unusual response to stress make its way all into the DNA of our cells? The National CFIDS Foundation in collaboration with the Nancy Taylor Foundation is betting $133,000 that it does…
It looks like it might be a good bet. Dr. Henry Heng has been evolving a uique theory of ‘genomic instability’ for over a decade. The theory proposes that random hits to the genome over time powered by cellular stress can derange chromosomes enough to cause complex disorders such as cancer.… Read More
A Real Disease or What? Medical Student Survey Suggests Younger Generation Starting to Get It
BMC Med Educ. 2012 Apr 3;12(1):19. [Epub ahead of print] Do you think it’s a disease? A survey of medical students. Erueti C, Glasziou P, Del Mar C, Van Driel ML.
Almost 200 medical students at Bond University in Australia were polled as to whether chronic fatigue syndrome is a disease or not. (Disease: “an unhealthy state of body or mind: a disorder, illness or ailment with distinctive symptoms, caused eg by infection”)
Surprisingly 75% of them thought it was a disease.… Read More
Giardia outbreak causes CFS-like condition in Norway
(Outbreaks of ‘CFS’ do happen but they are rarely documented now. In this article, Oceanblue from the Phoenix Rising Forums, examines a Giardia outbreak in Norway which resulted, years later, with a significant number of people suffering from a chronic fatigue/pain condition- CJ.)
A new study reports at least 5% of patients with CFS nearly 3 years after an acute Giardia enteritis infection, providing evidence of yet another infectious agent that can trigger CFS along with Epstein-Barr Virus, Viral meningitis and the bacterium Coxiella burnetii, amongst others. Other studies on the same outbreak also show a strong link between the acute Giardia infection and both chronic fatigue and IBS.… Read More
Yes! They are Really Trying……CFS Patients Fail Cognitive Test and Pass the Effort Test…
J Clin Exp Neuropsychol. 2012 Mar 23. [Epub ahead of print] Test effort in persons with Chronic Fatigue Syndrome when assessed using the Validity Indicator Profile.Cockshell SJ, Mathias JL.
Everything, apparently, has to be nailed down in science. At the Ottawa IACFS/ME conference Pacific Fatigue Lab researchers were able to conclusively demonstrate that yes, CFS patients were exerting as much effort in the exercise studies as the healthy controls. (Ironically at a CFSAC meeting Dr. Snell remarked how much harder it was to get the healthy controls to come back for the second day of the exercise testing than the metabolically challenged and fading ME/CFS patients…Indeed, every researcher seems impressed with the courage and the willingness of ME/CFS patients to sacrifice their well-being for the cause of science….)
In this study Australian researchers found that, yes, ME/CFS patients were not muffing the cognitive tests because they weren’t giving their all – they were muffing them because they were actually more cognitively challenged.… Read More