by Jody Smith
A year ago, on Nov. 15, 2011, the Achieving a Better Life Experience Act (ABLE Act – HR 3423/S 1872) was introduced in Congress. On the one-year anniversary of the introduction of the bill, a press conference was held to build on the continuing support to make changes to the U.S. tax code. Since its introduction last year in the 112th Congress, the bill has gained support from 234 House Members and 40 Senate Members.
If passed, the ABLE Act would amend Section 529 of the Internal Revenue Service Code of 1986, so that tax-free savings accounts would be available for disabled individuals.… Read More
Phoenix Rising’s projects would contribute substantially to the ME/CFS community
In this series of blogs we’re going to focus on what ME/CFS organizations would do with their Chase winnings and we’re going to start with (naturally ) Phoenix Rising.
Phoenix Rising has many projects it could spend the Chase winnings on; it could make the Forum more accessible to the visually impaired, hire a crisis counselor to help those in need, revamp the website to make it more effective, create a Community Marketplace, etc. but we’re going to focus on two projects that fit together – the Rate A Physician and the Community Rising projects.… Read More
PHANU is moving to a bigger, better laboratory at Griffith University
PHANU is rising…. Lead by Dr.Sonya Marshall-Gradisnuk and Dr. Donald Staines, the PHANU ME/CFS Australian research team presented more studies at the 2011 Ottawa IACFS/ME conference than any other, scored a major grant from the Mason Foundation, established close ties with Dr. Peterson at the Simmaron Foundation and is moving to a larger laboratory at Griffith University.
This team is moving….Despite being formed just three years ago, PHANU’s co-leader, Dr. Staines provided the keynote speech on “New Directions for ME/CFS Research” and Dr. Marshall-Gradisnuk followed that up with a talk on Immunological Biomarkers at the 2011 Invest in ME conference.… Read More
PHANU, located in the Gold Coast region of Australia, has made major strides in 3 years
Looking Up Down Under – the PHANU Story
ME/CFS research around the world is pretty spotty. The US and the UK are long-time hubs, with Canada coming on in the last few years. Outside of the Nijs/DeMeirleir work in the Netherlands/Belgium, you can scratch out most of Europe. South of the equator, the picture is bleak until you get to Australia: things are definitely happening “Down Under”.
The Lloyd team pulled off the Dubbo studies, which are cited again and again in the literature.… Read More
Mast cell release could contribute to pain, fatigue, cramping, problems standing and more in FM and ME/CFS
An intriguing Fibromyalgia treatment appears, in its preliminary stages, to be working. A powdered form of Ketiotifen (which is not available yet in the US) may be turning down the activity of important immune cells called mast cells that recent research suggests could be contributing to the pain and fatigue in fibromyalgia (FM) and perhaps even chronic fatigue syndrome (ME/CFS).
When the Largest Organ Goes Bad
The road to the Ketiotifen FM trial probably began, oddly enough, with the skin and the recognition that high rates of allodynia (pain upon touching) occur in fibromyalgia.… Read More
Dr. Reeves, past CDC CFS chief, died on August 2nd
A strong and forceful personality who vowed to ‘be the last man standing’ in ME/CFS, Dr. William Reeves died at the age of 69 on August 2nd. The head of the most prominent chronic fatigue syndrome effort in the world for over ten years, no one made a bigger difference in how this disorder is viewed and treated.
Reeves has been protrayed as a behaviorist but the truth was more complex than that. With early studies focusing on HHV6, immune responses, endogenous retroviruses, mycoplasma and gene expression Reeves focused mostly on pathophysiological mechanisms. … Read More
By end the January, 2013, at the latest,we will know if the FDA will approve Ampligen for ME/CFS…
Moving quickly, Ampligen’s producer, Hemispherx Biopharma, filed its ‘complete response’ to the FDA’s request for data just 53 days after the agency agreed to relax its requirements for review of the drug. Hemispherx’s ‘complete response’ means we will know by the end of January and perhaps sooner whether Ampligen becomes the first FDA approved drug for chronic fatigue syndrome (ME/CFS).
In its response Hemispherx provided new data derived from a 24 week extension period occurring after the 40 week original trial.… Read More
The IACFS/ME Treatment Primer took two years to complete
The publication of the IACFS/ME Treatment Primer “Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: A Primer for Clinical Practitioners” is a landmark event. In this article we’re going to compare, section by section, the two documents.
The CFIDS Association has created some good doctor education courses in the past but only the IACFS/ME – the organization of ME/CFS professionals – has the standing to begin to attempt to challenge the CDC’s dominance in this area. The CDC with its reputation in the medical community, considerable financial assets, professionally designed website, broad reach, etc. has a distinct advantage.… Read More
Impaired blood pressure variability in chronic fatigue syndrome–a potential biomarker. Frith J, Zalewski P, Klawe JJ, Pairman J, Bitner A, Tafil-Klawe M, Newton JL. QJM. 2012 Jun 4
“..We believe that our findings add further evidence to the case for CFS being a disorder of sympathetic overactivity”
We know that heart rate variability (HRV) isn’t, well, very variable in chronic fatigue syndrome. The electric signals in our heart should be constantly responding to changes in the body as we work, walk, exercise, etc….but they appear stuck in a pattern of sympathetic nervous system overdrive.… Read More