Accelerating Treatments For ME/CFS: A Call to Action for the FDA

by admin April 23, 2012

For decades, ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) has devastated the lives of patients and our loved ones, leaving us with an alarmingly low quality of life. Today, ME/CFS affects the lives of more than 1 million Americans of both sexes and all ages at an annual cost of at least $21 billion in direct costs and lost productivity.

As patients and loved ones, we have suffered too long with too little research, a disbelieving medical community and no approved drug treatment specifically for ME/CFS.

This has to change! We know that we need many things, such as more money for research.… Read More

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Person with CFS Takes Their Life: A Goodbye to Patrick Kelly

by Cort April 22, 2012

After 17 years of being ill with chronic fatigue syndrome, Patrick Wylie Kelly, took his life on April 15th leaving many in the ME/CFS community shocked.

An inspiring figure to many in Sept 2011, Patrick posted on the Phoenix Rising Forums that he (Hub_Halo on the Forums) was working on accepting the losses that come with the chronic illness and looking to find positives –something he had done for years.

“Jumping off from Penny’s quote that about the fight to hold onto bits and pieces of our former life AND from Cort’s welcome and frank reminder that depression and chronic illness often go hand in hand—-if it’s not obvious, we have to fight to find (or create) positive things in our ME/CFS life as we mourn the loss of our old life.

… Read More

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Unstable At the Core? NCF Funds Cutting-Edge ME/CFS Gene Study

by admin April 16, 2012

In a year of intriguing studies this is one of the more intriguing. Stress has been something of a keynote in CFS research lately and researchers now regularly employ different kinds of stress tests to provoke abnormalities in patients. But does this unusual response to stress make its way all into the DNA of our cells? The National CFIDS Foundation in collaboration with the Nancy Taylor Foundation is betting $133,000 that it does…

It looks like it might be a good bet. Dr. Henry Heng has been evolving a uique theory of ‘genomic instability’ for over a decade. The theory proposes that random hits to the genome over time powered by cellular stress can derange chromosomes enough to cause complex disorders such as cancer.… Read More

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ME/CFS Buzz: Med Students/Chromosomes/Disability/Growth Hormone/FM Everywhere? (April 17, 2012)

by admin April 16, 2012

RESEARCH

A Real Disease or What? Medical Student Survey Suggests Younger Generation Starting to Get It

BMC Med Educ. 2012 Apr 3;12(1):19. [Epub ahead of print] Do you think it’s a disease? A survey of medical students. Erueti C, Glasziou P, Del Mar C, Van Driel ML.

Almost 200 medical students at Bond University in Australia were polled as to whether chronic fatigue syndrome is a disease or not. (Disease: “an unhealthy state of body or mind: a disorder, illness or ailment with distinctive symptoms, caused eg by infection”)

Surprisingly 75% of them thought it was a disease.… Read More

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Another Pathogen for CFS: Giardia Outbreak Causes CFS ‘Outbreak’ in Norway

by Cort April 9, 2012

Giardia outbreak causes CFS-like condition in Norway

(Outbreaks of ‘CFS’ do happen but they are rarely documented now. In this article, Oceanblue from the Phoenix Rising Forums, examines a Giardia outbreak in Norway which resulted, years later, with a significant number of people suffering from a chronic fatigue/pain condition- CJ.)

A new study reports at least 5% of patients with CFS nearly 3 years after an acute Giardia enteritis infection, providing evidence of yet another infectious agent that can trigger CFS along with Epstein-Barr Virus, Viral meningitis and the bacterium Coxiella burnetii, amongst others. Other studies on the same outbreak also show a strong link between the acute Giardia infection and both chronic fatigue and IBS.… Read More

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ME/CFS Buzz (April 4th, 2012) CFS Patients Pass the Effort Test, West Nile Virus, Cancer Researchers and CFS, Depressing Antidepressant Study…..

by admin April 4, 2012

RESEARCH

Yes! They are Really Trying……CFS Patients Fail Cognitive Test and Pass the Effort Test…

J Clin Exp Neuropsychol. 2012 Mar 23. [Epub ahead of print] Test effort in persons with Chronic Fatigue Syndrome when assessed using the Validity Indicator Profile.Cockshell SJ, Mathias JL.

Everything, apparently, has to be nailed down in science. At the Ottawa IACFS/ME conference Pacific Fatigue Lab researchers were able to conclusively demonstrate that yes, CFS patients were exerting as much effort in the exercise studies as the healthy controls. (Ironically at a CFSAC meeting Dr. Snell remarked how much harder it was to get the healthy controls to come back for the second day of the exercise testing than the metabolically challenged and fading ME/CFS patients…Indeed, every researcher seems impressed with the courage and the willingness of ME/CFS patients to sacrifice their well-being for the cause of science….)

In this study Australian researchers found that, yes, ME/CFS patients were not muffing the cognitive tests because they weren’t giving their all – they were muffing them because they were actually more cognitively challenged.… Read More

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Take the ME/CFS Social Security Disability/SSI Survey

by Cort March 25, 2012

What's the story with Social Security Disability and ME/CFS? Take the survey and let's find out..

Getting Social Security Disability/Supplemental Income (SSD/SSI) can be a lifeline for financially beleaguered people with CFS (ME/CFS) but the application process is often lengthy and difficult. Anecdotal reports from physicians and patients suggest getting disability may be more difficult for CFS patients yet documentation of success rates is lacking and little hard data exists on what works best in the disability process.

We’re attempting to rectify some of those problems in this online survey of people with ME/CFS who have applied for Social Security Disability and/or Supplemental Income Security (SSI).… Read More

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ME/CFS Buzz (March 19th) – the Gut, the Brain, the Immune System and more

by admin March 22, 2012

RESEARCH

A Biological Cause of ‘Poor Stress Management’ Found in ME/CFS?

Brain Behav Immun. 2012 Mar 6. Stress management skills, neuroimmune processes and fatigue levels in persons with chronic fatigue syndrome. Lattie EG, Antoni MH, Fletcher MA, Penedo F, Czaja S, Lopez C, Perdomo D, Sala A, Nair S, Fu SH, Klimas N.

Its certainly not clear that everyone with ME/CFS reacts poorly to stress but anecdotal reports suggest that many people with ME/CFS are more vulnerable to stressors after the getting the disorder than they were before they had it. Noting that stress often worsens symptoms this study looked for physiological components that might be able to explain part of the stress response problem in ME/CFS.… Read More

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Ampligen Study Take II: A Correction

by admin March 18, 2012

The recent blog on Hemispherx’s Ampligen study has been amended to take account of the fact that the study involved an analysis of data from a 1998-2004 study. The blog in its original state suggested that this was a new study done in response to the FDA’s 2009 concerns. That was not true. Hemispherx may have done a re-analysis of old data in an attempt to comply with some of the FDA’s concerns but it did not, at least in this paper, embark on a new study with new patients. My apologies for any misconceptions.… Read More