July 2012

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

Thanks to Senator Robert Casey (PA) and his colleagues Senator Richard Blumenthal (CT) and Senator Kay Hagan (NC)

At the end of June, Senators Casey, Blumenthal and Hagan sent a letter to Secretary of Health Kathleen Sebelius requesting  the FDA hold a stakeholders meeting on chronic  fatigue syndrome. All three Senators serve on the Committee on Health, Education, Labor and Pensions which oversees the FDA. The letter stated

“CFS/ME represents a significant unmet medical need, one that confers on patients a lifetime of illness.  A stakeholder meeting would be of great benefit, as it would offer an opportunity to examine existing treatment protocols known to FDA, address how risk/benefit determinations should be made in relation to CFS/ME treatments and identify a path forward for regulatory science in this area.” 

 

Thanks again to the patient community for your emails and some brave folks who met with numerous Congressional offices in Washington DC – our voices have been heard. 

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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

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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

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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

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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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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

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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

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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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Posted by Cort Johnson

YOUR VOICES MADE THE DIFFERENCE 

We are very happy to announce that during a conference call, Dr. Janet Woodcock, Director of Center for Drug Evaluation and Research at the FDA, made a commitment to the ME/CFS community to hold a Stakeholder Meeting

We’ll let you know more as the meeting and agenda for the meeting develops.

In the meantime pat yourself on the back and thanks for your support!  

Working together we can make a difference for ME/CFS Read More

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