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
Impaired blood pressure variability in chronic fatigue syndrome–a potential biomarker. Frith J, Zalewski P, Klawe JJ, Pairman J, Bitner A, Tafil-Klawe M, Newton 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
‘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
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
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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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
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
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
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
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