August 2012

Posted by Cort Johnson

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

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Posted by Cort Johnson

The IACFS/ME Newsletter was chock full of good news this time… For starters, Stanford, of all places is co-sponsoring the next IACFS/ME Conference!

Stanford University to Co-sponsor IACFS/ME Conference in March, 2014

In a surprise, Stanford, the 4th ranked medical research university in the U.S., will co-sponsor the next IACFS/ME Conference in 2012

Patient groups groups have always co- hosted IACFS/ME conferences in the past but that’s changed – and in a big way.   One might have thought the first University to co-sponsor an IACFS/ME conference would be a small one but no,  in a stunning turn of events, somehow the IACFS/ME, Dr.… Read More

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Posted by Cort Johnson

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

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Posted by Cort Johnson

An Health Services provider is considering opening up an NEID Center to serve people with CFS, FM and Lyme disease

A Health Service provider may want you (gasp)!   Yes,  it’s true. After all the cold shoulders and denials of coverage, etc. a health services system in the Southeastern United States (to remain unnamed) wants to determine whether it makes sense for them to open an neuroendocrineimmune center focusing on ME/CFS, fibromyalgia, lyme disease, etc.  To that end they’re asking you to participate in a survey.

How did this turn of events come about? Tina Tidmore, a journalist, advocate and person with CFS, came into contact with a politician who has one of these disorders and knows the CEO of a  health care/hospital system.  … Read More

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Posted by Cort Johnson

President Obama responds positively to a request for more federal assistance for chronic fatigue syndrome

Bob and Courtney Miller’s effort to engage President Obama  on behalf of Chronic Fatigue Syndrome  patients began in a Town Hall meeting in Reno last year. At that meeting President Obama promised to look into the situation and report back and, now, through his Deputy Chief of Staff, Nancy-Ann DeParle, he has.

The top aid to the White House Chief of Staff,  Nancy-Ann DeParle has a long track record with health care; as Director of Health Care Financing for the Clinton administration she helped administer the Medicare and Medicaid  programs and then was director of the White House Office of Health Reform for President Obama.  Read More

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Posted by Cort Johnson

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

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Posted by Cort Johnson

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

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Posted by Cort Johnson

Hemispherx's Ampligen Response to FDA means the clock is ticking for the drug

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).

New Data

In its response Hemispherx provided new data derived from a 24 week extension period occurring after the 40 week original trial.… Read More

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