June 2012

(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

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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

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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

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Posted by Cort Johnson

(Things are finally starting to move…The FDA is responding but no meeting dates are set. Stop now and we risk losing our chance; keep working and we can bust this thing wide open.  We are on the brink of getting a historic meeting at the FDA…

The FDA can be very pro-active in the drug approval process – we’re simply asking that they be pro-active with the only major disorder they’ve never approved a drug for. – ME/CFS! Let’s keep the pressure on by emailing the feds every day until the 25th….Cort.)
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To All who took ACTION requesting THE FDA TO HOLD A STAKEHOLDERS MEETING for ME/CFS.Read More

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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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