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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

8 comments

Posted by Cort Johnson

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

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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

23 comments

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

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

49 comments

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

70 comments

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

46 comments

Posted by Cort Johnson

IACFS/ME Treatment Primer vs CDC Toolkit for CFS

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.… Read More

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Posted by Cort Johnson

Impaired blood pressure variability in chronic fatigue syndrome–a potential biomarker. Frith JZalewski PKlawe JJPairman JBitner ATafil-Klawe MNewton 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

8 comments

Posted by Cort Johnson

‘At the moment, we’re in a very optimistic place”

Dr. Julia Newton

One of our most active researchers, Dr Julia Newton of Newcastle University focuses mostly on autonomic nervous system and muscle  issues.  A recent talk she did with “the Naked Scientist” gave us some exciting news about her work.

Dr. Newton came to chronic fatigue syndrome by an unusual pathway but one which will resonate with any person with ME/CFS who’s felt decades older than their chronicle age.  A geriatrician focusing on fainting in elderly patients, Newton’s interest was piqued by a strange set of younger people with similar issues.… Read More

40 comments

Never be afraid to laugh at yourself.  After all, you could be missing out on the joke of the century

~Dame Edna Everage

It’s March and time to return to the land of the clear blue lake and the doctor with the clear blue eyes…Incline Village, Nevada and Dr. P!  J  But first, allowme to recap the months following my previous visit last November.

I was not feeling as well during October and November as I had the past year.  After Dr. P advised me to “not worry about it…that happens,” he sent me home with a prescription for the gut antibiotic, Xifaxan and with the hope that he would figure out a way to get me immunoglobin (Ig) at home in some way, shape or form.… Read More

16 comments

Posted by Cort Johnson

After a warm winter the Sierras were experiencing a cold and snowy March.  I drove into cold blue skies but within a day it’d started snowing -hard. We got ‘over the hill’ OK the first day, slipping a bit now and then, but got stuck on the highway the second.  I hiked back to get some chains, we got in late and as usual Dr. Peterson’s office was quite accommodating.

Alot had changed…After decades in his old office Dr. Peterson was in a newer, larger one with a small lab. Corinne met with Dr. Peterson, started getting her tests done and we talked with Dr.

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56 comments

Posted by Cort Johnson

Reversing a 2009 decision some commentators felt was  potentially crippling to Hemispherx BioPharma, Ampligen’s producer, the FDA today stated they would not, after all, require a expensive  300 person study to assess Ampligen’s effectiveness in chronic fatigue syndrome (ME/CFS). (Safety concerns appear to have been taken care of.)  Instead they would allow Hemispherx to use new analyses of data it’s already collected.  Hemispherx must be breathing a huge sigh of relief.

A 300 person, double-blinded, placebo controlled drug trial was far beyond  Hemispherx financial capacity, whose assets, Reuter’s reported,  fell from 58.1 million dollars in late 2009 to just 3.6 million dollars in March of this year.… Read More

29 comments

Posted by Cort Johnson

Klonopin  (Clonazepam) may be the most commonly used drug in chronic fatigue syndrome (ME/CFS). Dr. Cheney hailed its use, putting the drug in the ‘neuroprotector’ column because  its ability to reduce  sensory nervous overload gave the brain, he thought, a chance to rest and rejuvenate itself.  Dr. Bell agreed about its value, stating “For years I have said that Clonazepam is perhaps the most useful medication in chronic fatigue syndrome”.

Indeed, studies have shown that the brains of ME/CFS patients have difficulty ignoring innocuous stimuli and some researchers  believe that  ‘central sensitization’ – a kind of central nervous system hyperactivity – is present in ME/CFS.… Read More

76 comments

Posted by Cort Johnson

For more than 25 years, the Department of Health and Human Services (DHHS) has known how debilitating chronic fatigue syndrome (CFS, known as myalgic encephalomyelitis or ME/CFS) can be.  Studies have shown that ME/CFS is common, afflicting perhaps 1 million people in the U.S. and the CDC reports ME/CFS “can be as disabling as multiple sclerosis, lupus, rheumatoid arthritis, heart disease, end-stage renal disease… and similar chronic conditions.”

Compounding the personal devastation is the effect on our country’s economic well-being. ME/CFS drains our workforce and costs our country an estimated $18 – $23 billion annually.

ME/CFS has devastated the lives of more than one million Americans along with the lives of their families.… Read More

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(Guest blogger Simon McGrath  focuses on an important topic and stumbling block for ME/CFS – replication studies (or the lack thereof).  The XMRV story presents a somewhat unusual theme; a subject receiving enough study that a consensus (at least to date) has been reached and in relative rapid fashion but a recent blog  found a significant number of research efforts  are never  or are haphazardly followed up on. – Cort)

Replication

Replication of important findings is essential for progress in CFS research (and other research too)

A recent review by Harvard professor Anthony Komaroff cited over 150 findings of either biological abnormalities or evidence of chronic infection in CFS patients, yet almost every one was different, with very few replications.… Read More

27 comments

Posted by Cort Johnson

In a surprise, Chief Justice John Roberts joined the four liberal members of the Supreme Court to uphold most provisions of the Affordable Health Care Act including the individual health care mandate.

The implications of the Supreme Court’s decision are substantial for people with chronic illnesses, in general, and for people with chronic fatigue syndrome who often have with low incomes and difficulty purchasing health care.  NBC News called the decision “a major victory for millions of Americans who either can’t purchase health insurance or have chronic illnesses.”

With studies suggesting that ME/CFS costs the average family about $20,000 a year in lost wages, and with a recent CDC study findings that on direct medical costs averaging almost $6,000 annually, a significant portion of which is paid out of pocket, this is a community that could use some financial relief at the doctors office.… Read More

70 comments

Posted by Cort Johnson

Jorgen Jelstad Norwegian Journalist Covering ME/CFS

Norwegian journalist Jorgen Jelstad has been all over the Rituximab story. His Invest in ME Conference tweets updated us on recent events, in his “How Important is Rituximab?” blog he talked with researchers about Rituximab’s potential and in his  recently blog, “The Drug”, he published a blow-by-blow account of how Rituximab grew to such prominence in the ME/CFS universe.  Thanks for allowing Phoenix Rising to publish the story..Here we give a synopsis of the story and of Jorgen’s recent interview with Dr’s. Mella and Fluge. 

It turns out that it all began almost 10 years when Anne Katrine, a CFS patient with leukemia, walked into Dr.Read More

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Posted by Cort Johnson

Join Phoenix Rising as we cover the June 13th, 14th CFSAC meeting live.

The federal advisory committee on chronic fatigue syndrome (CFSAC) meets twice a year to propose recommendations and interview and prod  federal officials to do more to meet the enormous needs of the chronic fatigue syndrome community.

Join Phoenix Rising as we cover the two-day event (June 13th, 14th 9am-5pm EST) live with commentary and the opportunity for you to join in and give your impressions and views as the event unfolds.

The meeting provides a rare public view of what the NIH, CDC and FDA and others are doing (or not doing) to provide answers for the 1 million or so Americans with ME/CFS.  … Read More

16 comments

Posted by Cort Johnson

Jorgen Jelstad is a Norwegian journalist with a family member who has a severe case of ME/CFS. He tweeted the Ottawa conference last year and he tweeted the Invest in ME conference yesterday.

Suggesting  a certain excitement and vigor is present, he reported that a brain-storming session occurred two days prior to the conference.

From Dr. Peterson (Simmaron) to Dr. Gradisnuk (PHANU)  to Dr. Baraniuk, the one day conference was packed with intriguing speakers but none were more eagerly awaited than Dr. Fluge and Dr. Mella’s talk on Rituximab.

Rituximab

Fluge and Mella appear to be getting good results in their larger Rituximab (Rituxian)  followup study.… Read More

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