An Institute for all Americans….
Or Just Some?
The Department of Health and Human Services 2013 Budget proposal doesn’t mince words about whose health the Department, which oversees the NIH and CDC, is charged with protecting….
This Budget request represents the Administration’s priorities for guiding the Department of Health and Human Services (HHS) to enhance the health and well-being of all Americans.
But has it? Government funded studies have been invaluable in documenting that the million people or so people with chronic fatigue syndrome in the U.S. have high rates of disability and cost the economy about $20 billion a year.Those are major disease type figures but has the DHHS listened to its own figures?… Read More
In the World – President George Bush made news by suddenly falling violently ill and doing a face-plant into the lap of the Japanese prime minister. The European Union is formed (perhaps to break up 20 years later?) and a 12-year civil war ends in El Salvador. Yugoslavia breaks up and the Bosnian war begins… Pope John Paul finally lifts the edict of inquisition against Galileo and Princess Charles and Diana separate…
Meanwhile in CFS, a retrovirus finding by Dr. Elaine Defreitas of Wistar the year before had generated enormous interest and efforts were underway to validate it.
The Year 1992
In this article we look at what happened to those 1992 findings and what they tell us about ME/CFS research? We took each finding and then went 20 years in the future.… Read More
Who’s made the most difference in the chronic fatigue syndrome research field? A measure called the ‘H-index’ attempts to determine the impact a researcher has had on a field based on how often his/her work is cited by others. Researchers publishing ‘seminal’ papers in highly read journals will do the best. The index does not measure who’s right..it measures who’s work is read and cited the most by other researchers. The higher the score the bigger the impact.
The index is not perfect; flaws have been pointed out but it does give us a good sense of who’s had the most impact in the CFS research field.… Read More
There’s nothing like a video to arouse passion. ME/CFS videos really came of age five years ago with the publication of Sleepydust’s ME/Chronic Fatigue video. That video, still her only one, has garnered over 130,000 views – far outpacing any others.
To celebrate 20 years since CFS International Awareness Day was created, here are the top 15 or so most watched CFS English speaking video’. Some of the best are the latest, check out, for instance, GettingWellFromME’s recent series, with its fine production values. At the end we have a video made for the anniversary today.
SleepyDust’s ME/Chronic Fatigue Syndrome Video
5 years – 130,000 views - Sleepydust’s only video captures ME/CFS like none other.… Read More
NeedyMeds could help some ME/CFS patients save a substantial amount of money on drug costs
Taking a Big Hit- The CDC found that the average family containing someone with chronic fatigue syndrome took about a $15,000 hit yearly in medical costs, lost wages etc…and that about 1/4 of medical costs were paid directly out of pocket. .. It’s clear that many families are hit hard financially by ME/CFS and anything they can do to shave costs would be a big help.
Lessening That Hit - In a recent webinar Pandora teamed up with NeedyMeds, a non-profit organization dedicated to finding ways people can save money on medications, to illuminate some interesting options.(The program is mostly for ‘low income’ patient but a quick glance at the programs indicated that families with under $100,000 in income can participate in some of them.) Since 1997 NeedyMeds has developed a variety of impressive databases that track a variety of drug and health assistance programs and it provides its own drug discount card.… Read More
RESEARCH NEWS
A Very Unrewarding Ilness: CDC Study Suggests Reward Center of the Brain is Rather Quiet in CFS
Chronic fatigue syndrome does appear to still be something of a hot media item…The latest CDC study made the news before it was published or even presented at a big conference. (This study was actually presented at the IACFS/ME Conference but somehow it didn’t make it out to the news wire there 
)
This study found that blood flows to the basal ganglia, a part of the brain involved in both motor activity and reward (what a combination)…was significantly reduced in people with ME/CFS during a card game.… Read More
by Cort on April 22, 2012
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
by admin on April 16, 2012
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
by admin on April 16, 2012
RESEARCH
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
