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February 2013

by Simon McGrath

red bugFor me, the star attraction of Nancy Klimas’ recent CFS/GWI conference was always going to be Professor Mady Hornig and her talk.

Hornig might not be well known by ME/CFS patients – yet – but her boss is: Ian Lipkin, who so skillfully handled the XMRV ‘dediscovery’ study (which she worked on too). Despite disproving a link with XMRV, Professor Lipkin made clear his belief that ME/CFS was a serious disease that had not received the serious attention it deserved. Even more important – given his stellar record as a scientist – was his commitment to playing a serious role in trying to solve the illness.… Read More


by Sasha

Image by www.facebook.com/MEAwarenessPics

Image by www.facebook.com/MEAwarenessPics

 The first thing to say about this: you don’t need Facebook!

The second thing: you don’t have to be in Canada to vote!

The third thing… well, time to give you the details…

Nature’s Bounty, a long-established manufacturer of vitamins and food supplements, is running an online voting contest for Canadian charities. The National ME/FM Action Network has entered.

The Action Network is probably best-known internationally for spearheading the development of the Canadian Consensus Criteria.

It’s hard to overstate the importance of rigorous diagnostic criteria in this disease: we all owe the Action Network a debt for this contribution to diagnosis and research.… Read More


by Joel (Snowathlete)

Plasmacytoid dendritic cell interacting with a T-cell.

Plasmacytoid dendritic cell interacting with a T-cell.

Some dates you remember forever.  Yesterday, on Wednesday 20th February 2013, a paper was published that may represent a major breakthrough in understanding the underlying mechanisms and cause of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).

The paper, from long-time ME/CFS researchers Dr Kenny De Meirleir, Vincent Lombardi and other colleagues in association with the Whittemore Peterson Institute, reports findings that amount to ME being an autoimmune disease.

Dr Kenny De Meirleir is perhaps best known for the work he has done on the gut and its link to the pathophysiology of ME/CFS, so it is no surprise to hear that this latest finding is related to the major role of the lymphatic immune system in the gut.… Read More


Jody Smith reports on how CFSAC’s “High Priority Recommendations” excluded most of our priorities and our input, in an apparent violation of the Federal Advisory Committee Act


Jennifer Spotila prompted Public Citizen to write to Acting General Counsel William Schulz of the HHS, asking that CFSAC be compelled to act in accordance with its own charter and with the Federal Advisory Committee Act.

The CFS Advisory Committee has made many recommendations to the Secretary for Health and Human Services in the past. But in January 2013, the ME/CFS community got an unpleasant surprise. The CFSAC had posted the document High Priority Recommendations from CFSAC on their public website.… Read More


Introduced and edited by Stukindawski


Irish ME/CFS Association Officer & Peer-Review Published Author, Tom Kindlon

Last year, prior to Peter White’s PACE Trial ‘recovery’ paper, Cort Johnson conducted an extensive interview with Tom Kindlon on the subject of CBT. The interview is in three parts and can be accessed by clicking the following links:-

[Part One][Part Two][Part Three]

On the topic of definition, Cort and Tom discuss what CBT has come to represent in the field of ME/CFS: whether and how pacing, sleep hygiene and graded exercise are combined into this treatment. The definition of pacing itself is also considered, since what it actually represents differs greatly among researchers and patients alike.… Read More


by Joel (Snowathlete)

wordle made up of zoonotic wordsFor millennia man has predicted the end of the world: an asteroid strike, a super-volcano, global warming… but in recent years, we’ve been told that our greatest threat is the microbe. In 2003 it was Bird flu, then in 2009 it was Swine flu, but as we’re still here, perhaps it’s a cock-and-bull story, rather than a bird and pig one?

Either way, we’ve got bigger fish to fry regarding our own disease, but all this talk of animals may not be far from the truth when it comes to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).

Zoonoses (Greek: “zoon” = animal, “nosos” = disease) are diseases that are transmitted to humans from other animals, and such diseases are caused by a variety of pathogen types including parasites, bacteria, fungi, and viruses.… Read More


exhaustion of post-exertional malaise by Jody Smith

Post-exertional malaise. The first few times I heard this term I could not grasp what it meant. Chalk that up to a CFS-crippled brain. The first few dozen times I tried to say it, my cognitive fog prevented me from being able to do so.

Many years later it rolls off the tongue, though not in a pleasant way. Each syllable brings home a sense of irony that a term that is too hard to remember and to say should be such a central facet of ME/CFS.

You might have symptoms I don’t have. I may respond well to treatments that have no positive effect on you.… Read More


by Sasha


The FDA: about to get a ‘smart, strong push’

Late on Friday, 8 February, Bob Miller announced the end of his hunger strike to get Ampligen approved for people with ME/CFS.

Our community had never seen anything like this and I hope we never have to again. It hasn’t been easy watching Bob get weaker and weaker on his video diary and I’m sure there’s a collective sigh of relief going around the world as people hear the news.

Bob made the announcement on his Facebook page and asked us to now stop sending mass emails to the federal agencies and turn our efforts towards contributing to the FDA Stakeholders Meeting:

 Dear Friends,

We, as a community, accomplished some very important things during the last few weeks, and so I am ending my hunger strike tonight.… Read More


In the first of a series of articles by Phoenix Rising writers on the Institute for Neuro Immune Medicine’s Patient Conference at Nova Southeastern University, Vonnie Kennedy gives an overview of the morning session.

Nancy Klimas presentingI was lucky enough to attend the morning session of the 2013 Chronic Fatigue Syndrome/Myalgic Encephalomyelitis and Gulf War Illness (ME/CFS and GWI) Patient Conference at NSU on Saturday, January 26.

The conference was a celebration of the February 12 opening of the Nova Southeastern University (NSU) College of Osteopathic Medicine’s (COM) Institute for Neuro Immune Medicine (INIM).

INIM’s Big Plan: Finding Effective Therapy for ME/CFS and GWI

Nancy Klimas, M.D.Read More


by Sasha

NIH on Chronic Fatigue Syndrome

National Institutes of Health

The FDA may have disapproved Ampligen but Bob Miller isn’t giving up his hunger strike. Visibly weaker in a video clip on his Facebook page, on Day 9 of his hunger strike, Bob moved on to the next, logical target: he wants Secretary of Health Kathleen Sebelius to have the National Institutes of Health conduct a clinical trial of Ampligen.

There are several things that Bob has asked us to do to put pressure on the NIH. Please do them now. I hope we never have to see one of our number on hunger strike again: let’s act fast and not let Bob’s efforts be wasted.… Read More


Phoenix Rising has the chance to apply for one of 3 non-voting liaison representative positions for ME/CFS organizations on the CFSAC committee – but we only have until Feb 22 to choose our representative and submit our application, so it’s all hands to the pump!

The federal advisory committee for chronic fatigue syndrome meets twice a year in live webcast events

The federal Chronic Fatigue Syndrome Advisory Committee (CFSAC) meets twice a year in live webcast events

 The Chronic Fatigue Syndrome Advisory Committee (CFSAC) provides advice and recommendations to the Secretary of the US Department of Health and Human Services (HHS) on a broad range of issues and topics related to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). Issues covered by CFSAC can include factors affecting access and care for persons with ME/CFS; the science and definition of ME/CFS; and public health, clinical, research, and educational issues related to ME/CFS.… Read More


by Sasha

Bob-Miller-2011-Ottawa-ConferenceBob Miller has started a hunger strike to push for FDA approval of Ampligen. He and his wife, Courtney Alexander, who are well-known for drawing President Obama’s attention to the plight of people with ME/CFS, urge us not to do the same.

Instead, they’d like us to send the email below, alerting key decision-makers to his strike, to add pressure to approve Ampligen as a therapy for ME/CFS.

The FDA is expected to announced its decision sometime around Sunday 2nd February – this Sunday – so there’s no time to lose.

Wherever you are in the world, please use Bob’s template to email, and do it right now.… Read More