Chronic Fatigue Syndrome

[hammer12]

Background: Chronic Fatigue Syndrome (CFS) is a multifactorial disorder that affects various physiological systems
including immune and neurological systems. The immune system has been substantially examined in CFS with
equivocal results, however, little is known about the role of neutrophils and natural killer (NK) phenotypes in the
pathomechanism of this disorder. Additionally the role of erythrocyte rheological characteristics in CFS has not
been fully expounded. The objective of this present study was to determine deficiencies in lymphocyte function
and erythrocyte rheology in CFS patients.
Methods: Flow cytometric measurements were performed for neutrophil function, lymphocyte numbers, NK
phenotypes (CD56dimCD16+ and CD56brightCD16-) and NK cytotoxic activity. Erythrocyte aggregation, deformability
and fibrinogen levels were also assessed.
Results: CFS patients (n = 10) had significant decreases in neutrophil respiratory burst, NK cytotoxic activity and
CD56brightCD16- NK phenotypes in comparison to healthy controls (n = 10). However, hemorheological
characteristic, aggregation, deformability, fibrinogen, lymphocyte numbers and CD56dimCD16+ NK cells were similar
between the two groups.
Conclusion: These results indicate immune dysfunction as potential contributors to the mechanism of CFS, as
indicated by decreases in neutrophil respiratory burst, NK cell activity and NK phenotypes. Thus, immune cell
function and phenotypes may be important diagnostic markers for CFS. The absence of rheological changes may
indicate no abnormalities in erythrocytes of CFS patients.

http://www.translational-medicine.com/content/pdf/1479-5876-8-1.pdf

 

[hammer12]

The psychobabblers who use cbt etc for CFS are those in the UK who use a diiferent criteria for diagnosing cfs and this criteria doesnt just take into consideration people with an infectious trigger/immune dysfunction but also those who are depressed etc. So cfs has become a waste basket diagnosis and a way to try and get rid of the illness ME myalgic encephelomylitis. True cfs/me has immune dysfunctions with natural killer cell dysfunction, high and low lymphocytes and different viruses reactivate due to immune dysfunction.

World experts on cfs/me got together this year and put together an international consensus criteria. No pyschobabblers here as they refuse to do indepth testing in cfs/me patients and are only interested in their own wrong views. http://www.wpinstitute.org/news/docs/me-international-consensus-criteria.pdf
Although xmrv has been supposedly discounted, there is still alot of controversy. A retrovirus is still considered a possible cause. A book called Oslers Web is very informative about the history of cfs and revolves around the cfs outbreaks in america in the 1980s, it shows how bad the CDC followed up this illness. Many people think that ever since this the CDC have been trying to cover up their mistakes.

At the end of the day its very controversial and isnt a psychosomatic illness but an immune/infectious disorder that is greatly lacking in funding to find out what is really going on. The proponents of CBT will say how effective their treatment is but talking to cfs/me patients how have tried this therapy, many will tell you it has made them alot worse, very few have had any success and those that it did help probably werent cfs/me patients but probably depressed patients as the diagnostic criteria use throws a wide net over many illnesses.

Someone really want to know about me/cfs heres one of the best sites on the net Chronic Fatigue Syndrome (ME/CFS) News From Phoenix Rising - Chronic Fatigue Syndrome (ME/CFS) News
Sorry if i sound abrupt but cfs/me people have been treated like crap for decades now and i dont understand why someone would fake an illness that know one takes seriously and no chance of getting disability benefits from either, so its a pointless illness to fake.

cheers!!!

 

[Michael Scally MD]

Another shoe drops as authors retract PNAS chronic fatigue syndrome-virus paper
Another shoe drops as authors retract PNAS chronic fatigue syndrome-virus paper ? Retraction Watch

 

[Michael Scally MD]

Fallout From Fatigue Syndrome Retraction Is Wide
http://www.nytimes.com/2012/02/07/h...igue-syndrome-retraction-is-far-and-wide.html

When scientists reported in 2009 that a little-known mouse retrovirus was present in a large number of people with chronic fatigue syndrome, suggesting a possible cause of the condition, the news made international headlines. For patients desperate for answers, many of them severely disabled for years, the finding from an obscure research center, the Whittemore Peterson Institute for Neuro-Immune Disease in Reno, Nev., seemed a godsend.

“I remember reading it and going, ‘Bingo, this is it!’ ” said Heidi Bauer, 42, a mother of triplets in Huntington, Md., who has had chronic fatigue syndrome since her 20s. “I thought it was going to mean treatment, that I was going to be able to play with my kids and be the kind of mom I wanted to be.”

Patients showered praise on the lead researcher, Dr. Judy Mikovits, a former scientist at the National Cancer Institute. They sent donations large and small to the institute, founded by Harvey and Annette Whittemore, a wealthy and politically well-connected Nevada couple seeking to help their daughter, who had the illness.

In hopes of treating their condition, some patients even began taking antiretroviral drugs used to treat H.I.V., a retrovirus related to the murine leukemia viruses suddenly suspected of involvement in chronic fatigue syndrome.

More recently, however, the hopes of these patients have suffered an extraordinary battering. In a scientific reversal as dramatic and strange as any in recent memory, the finding has been officially discredited; a string of subsequent studies failed to confirm it, and most scientists have attributed the initial results to laboratory contamination. In late December, the original paper, published in the journal Science, and one other study that appeared to support it were retracted within days of each other.

As the published evidence for the hypothesis fell apart, a legal melodrama erupted, dismaying and demoralizing patients and many members of the scientific community. Dr. Mikovits was even briefly jailed in California on charges of theft made by the institute.

 

[Michael Scally MD]

Virus Disproved as Cause of Chronic Fatigue Syndrome
Virus Disproved as Cause of Chronic Fatigue Syndrome - WSJ.com

The saga of the retrovirus XMRV and chronic fatigue syndrome appears to have ended, now that researchers in a federally funded study said they found no relationship between the retrovirus and the illness.

 

[Michael Scally MD]

Potential Drug for Fatigue to Get New Review
Potential Drug for Chronic Fatigue Syndrome to Get New Review - WSJ.com

A potential treatment for chronic fatigue syndrome gets a new look this week with a federal advisory panel review of Hemispherx Biopharma Inc.'s HEB +1.09% experimental drug Ampligen.

The drug, in development for chronic fatigue syndrome for about two decades, and the Philadelphia-based firm have faced setbacks. In 2009, the U.S. Food and Drug Administration refused to approve Ampligen, saying clinical studies submitted for approval of the product didn't provide "credible evidence" of the drug's effectiveness.

The FDA asked Hemispherx to conduct an additional study of the product, but the agency eventually agreed to instead accept new analyses of existing data amid a broader agency effort to facilitate the development of drugs for chronic fatigue syndrome. Ampligen, an injectable drug, is believed to boost the body's immune system and fight viruses.

Chronic fatigue syndrome, also known as myalgic encephalomyelitis, is believed to affect more than one million Americans, according to the Centers for Disease Control and Prevention. The condition is marked by severe fatigue, muscle pain and memory and concentration problems. It isn't known what causes the condition and there are currently no specific treatments.

Hemispherx wouldn't comment on the drug ahead of Thursday's FDA advisory panel meeting. A top FDA official said the agency thought it was important to hold a public discussion on Ampligen.

"It's been a very controversial product," said Sandra Kweder, deputy director of FDA's new drugs office, adding that part of the reason is that defining what chronic fatigue syndrome is has also been controversial. The agency is planning a spring scientific meeting that will include chronic fatigue syndrome patients to try to get agreement on what the most common symptoms are in patients, in order to develop measures of disease improvement.

"We need to be able to articulate what companies need to study in order to get drugs approved," Dr. Kweder said.

Few companies have invested in drug development for chronic fatigue, although academic researchers are looking at a couple of drugs already on the market for other uses.

Dr. Jose Montoya, of Stanford University, said he recently completed a study with Roche Holding AG's ROG.VX -0.22% antiviral drug Valcyte in CFS patients, which showed certain patients benefited from the drug. Although Roche helped fund the study, Dr. Montoya said the company has no plans to seek regulatory approval to market the product for CFS. Valcyte is approved to prevent infection with cytomegalovirus in some transplant patients and to treat a CMV-related eye infection in HIV patients.

"We have very limited information about works and what does not work in CFS," Dr. Montoya said. "There's also a disbelief about the true nature of the disease."

Other researchers are also looking at another drug, Rituxan, co-marketed by Roche's Genentech unit and Biogen Idec Inc., BIIB +0.46% that is used to treat rheumatoid arthritis and some blood cancers.

Despite the new review of Hemispherx's drug, approval isn't guaranteed. Although one of the clinical studies showed patients receiving Ampligen met a study goal showing they were able to walk for more time on a treadmill than patients receiving placebo injections, the difference was small. The panel will likely be asked to talk about whether the difference is clinically meaningful and to vote on whether it thinks the product should be approved.

 

[Michael Scally MD]

Briefing Information for the December 20, 2012 Meeting of the Arthritis Drugs Advisory Committee
http://www.fda.gov/AdvisoryCommittees/CommitteesMeetingMaterials/Drugs/ArthritisAdvisoryCommittee/ucm332512.htm

 

[Michael Scally MD]

Hemispherx Biopharma Receives Complete Response Letter from FDA on Ampligen® New Drug Application for Chronic Fatigue Syndrome
http://www.hemispherx.net/content/investor/default.asp?goto=746


Drug Development for Myalgic Encephalomyelitis and Chronic Fatigue Syndrome (ME and CFS): Questions and Answers
http://www.fda.gov/Drugs/NewsEvents/ucm337759.htm

As evidenced by the hundreds of letters, emails, and testimonies submitted to FDA, Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS) is a devastating disease with a serious impact on quality of life. We at FDA are acutely aware of the seriousness of this disease, that no FDA approved treatment option is available, and the community’s strong desire to see rintatolimod injection (Ampligen) approved. The FDA is committed to drug development to treat the symptoms of CFS and remains engaged with the patient and academic communities to foster these efforts. Following are responses to some of your frequently asked questions.

 

[Michael Scally MD]

FDA Response Letter Regarding Approval of Ampligen for ME/CFS http://www.fda.gov/Drugs/NewsEvents/ucm337750.htm

 

[Michael Scally MD]

Hornig M, Montoya JG, Klimas NG, Levine S, Felsenstein D, et al. Distinct plasma immune signatures in ME/CFS are present early in the course of illness. Science Advances. 2015;1(1). http://advances.sciencemag.org/content/1/1/e1400121

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is an unexplained incapacitating illness that may affect up to 4 million people in the United States alone. There are no validated laboratory tests for diagnosis or management despite global efforts to find biomarkers of disease. We considered the possibility that inability to identify such biomarkers reflected variations in diagnostic criteria and laboratory methods as well as the timing of sample collection during the course of the illness. Accordingly, we leveraged two large, multicenter cohort studies of ME/CFS to assess the relationship of immune signatures with diagnosis, illness duration, and other clinical variables. Controls were frequency-matched on key variables known to affect immune status, including season of sampling and geographic site, in addition to age and sex. We report here distinct alterations in plasma immune signatures early in the course of ME/CFS (n = 52) relative to healthy controls (n = 348) that are not present in subjects with longer duration of illness (n = 246). Analyses based on disease duration revealed that early ME/CFS cases had a prominent activation of both pro- and anti-inflammatory cytokines as well as dissociation of intercytokine regulatory networks. We found a stronger correlation of cytokine alterations with illness duration than with measures of illness severity, suggesting that the immunopathology of ME/CFS is not static. These findings have critical implications for discovery of interventional strategies and early diagnosis of ME/CFS.

 

[spikehd]

There are an unknown number of causes for CFS, yet if an experimental drug doesn't work for the whole experimental group, it's rejected. They have to realize there won't be one cure all pill when there are so many viruses and whatever out there that cause CFS.

 

[Dr JIM]

For those of us with CFS thanks for posting this. I was aware of XMRV and the different outcomes of several research studies and decided to put off testing myself. However, I think I will now.

Any ideas on where one can get tested? I know about the lab at UNR and I am a few hours from there but I didn't know if Labcorp or Quest carries those tests.

Good luck bc all the studies on the etiology of CFS are about as preliminary as they come. Even if the cause, causes OR associations WERE KNOWN what form of therapy would be deemed appropriate, the damage is likely already done. Of course that's assuming the underlying problem in CFS is organic rather than psychogenic

It's unfortunate bc many of those whom are desperate for "answers" fall prey to "doctors" and other para-health care professionals, whom have developed "their own tests"!

This is typical with syndromic ailments bc it's unlikely ONE ETIOLOGIC factor is THE PROBLEM, but several in addition to perhaps a genetic predisposition.

There are many patients that "test positive" for a variety of antigens but to suggest there is a temporal relationship with disease X is one HUGE LEAP!

This very issue arose with the diagnosis and treatment of Lyme disease or Lyme Syndrome.

THERE IS MORE HOCUS POCUS out there than legitimate answers, BUYER (PATIENT) BEWARE

 

[Michael Scally MD]

NIH takes action to bolster research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
http://www.nih.gov/news-events/news...ic-encephalomyelitis/chronic-fatigue-syndrome

The National Institutes of Health is strengthening its efforts to advance research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), a disease for which an accurate diagnosis and effective treatment have remained elusive.

The actions being taken include launching a research protocol at the NIH Clinical Center to intensely study individuals with ME/CFS and re-invigorating the efforts of the long-standing Trans-NIH ME/CFS Research Working Group with the National Institute of Neurological Disorders and Stroke (NINDS) as the lead of a multi-institute research effort.

NIH’s direction on the disease is being guided by a recent Institute of Medicine report (http://iom.nationalacademies.org/reports/2015/me-cfs.aspx), that recommended new diagnostic criteria and a new name for the disease (Systemic Exertion Intolerance Disease), and an NIH-sponsored Pathways to Prevention meeting that generated a position paper and report with recommendations for research strategies. https://prevention.nih.gov/programs-events/pathways-to-prevention/past-workshops/me-cfs

According to the Centers for Disease Control and Prevention, ME/CFS is estimated to affect more than 1 million Americans, and has been reported in people younger than 10 years of age and older than age 70.

ME/CFS is an acquired, chronic multi-system disease characterized by systemic exertion intolerance, resulting in significant relapse after exertion of any sort.

The disease includes immune, neurological and cognitive impairment; sleep abnormalities; and dysfunction of the autonomic system, which controls several basic bodily functions. These symptoms result in significant functional impairment accompanied by profound fatigue. Additional symptoms may include widespread muscle and joint pain, sore throat, tender lymph nodes and headaches.

Effects of the illness can range from moderate to debilitating, with at least one-quarter of individuals with ME/CFS being bedbound or housebound at some point in the illness and many individuals never regaining their pre-disease level of functioning.

Because the pathology of ME/CFS remains unknown and there is no test to diagnose the disease, studies to date have used different criteria for diagnosis, which has limited the ability to compare results across studies. Additionally, many of the published studies are based on small study populations and have not been replicated.

In an effort to remedy this situation, NIH will design a clinical study in the NIH Clinical Center with plans to enroll individuals who developed fatigue following a rapid onset of symptoms suggestive of an acute infection. The study will involve researchers from NINDS, the National Institute of Allergy and Infectious Diseases, National Institute of Nursing Research and National Heart, Lung, and Blood Institute. The primary objective of the study is to explore the clinical and biological characteristics of ME/CFS following a probable infection to improve understanding of the disease’s cause and progression.

...

 

[Dr JIM]

Yep change the name of any disease by adding "neuro" and those afflicted will REALLY believe they are to "ill" to work!

In spite of the FACT there is no established cause for CFS the NIH would like to change the "name" to reflect the notion these patients signs and symptoms are somehow the consequence of generalized CNS inflammation, NUTS!

 

[Dr JIM]

NIH takes action to bolster research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
http://www.nih.gov/news-events/news...ic-encephalomyelitis/chronic-fatigue-syndrome

The National Institutes of Health is strengthening its efforts to advance research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), a disease for which an accurate diagnosis and effective treatment have remained elusive.

The actions being taken include launching a research protocol at the NIH Clinical Center to intensely study individuals with ME/CFS and re-invigorating the efforts of the long-standing Trans-NIH ME/CFS Research Working Group with the National Institute of Neurological Disorders and Stroke (NINDS) as the lead of a multi-institute research effort.

NIH’s direction on the disease is being guided by a recent Institute of Medicine report (http://iom.nationalacademies.org/reports/2015/me-cfs.aspx), that recommended new diagnostic criteria and a new name for the disease (Systemic Exertion Intolerance Disease), and an NIH-sponsored Pathways to Prevention meeting that generated a position paper and report with recommendations for research strategies. https://prevention.nih.gov/programs-events/pathways-to-prevention/past-workshops/me-cfs

According to the Centers for Disease Control and Prevention, ME/CFS is estimated to affect more than 1 million Americans, and has been reported in people younger than 10 years of age and older than age 70.

ME/CFS is an acquired, chronic multi-system disease characterized by systemic exertion intolerance, resulting in significant relapse after exertion of any sort.

The disease includes immune, neurological and cognitive impairment; sleep abnormalities; and dysfunction of the autonomic system, which controls several basic bodily functions. These symptoms result in significant functional impairment accompanied by profound fatigue. Additional symptoms may include widespread muscle and joint pain, sore throat, tender lymph nodes and headaches.

Effects of the illness can range from moderate to debilitating, with at least one-quarter of individuals with ME/CFS being bedbound or housebound at some point in the illness and many individuals never regaining their pre-disease level of functioning.

Because the pathology of ME/CFS remains unknown and there is no test to diagnose the disease, studies to date have used different criteria for diagnosis, which has limited the ability to compare results across studies. Additionally, many of the published studies are based on small study populations and have not been replicated.

In an effort to remedy this situation, NIH will design a clinical study in the NIH Clinical Center with plans to enroll individuals who developed fatigue following a rapid onset of symptoms suggestive of an acute infection. The study will involve researchers from NINDS, the National Institute of Allergy and Infectious Diseases, National Institute of Nursing Research and National Heart, Lung, and Blood Institute. The primary objective of the study is to explore the clinical and biological characteristics of ME/CFS following a probable infection to improve understanding of the disease’s cause and progression.

...

Great update Doc, thx!

 

[Michael Scally MD]

Bad science misled millions with chronic fatigue syndrome. Here’s how we fought back
How bad science misled chronic fatigue syndrome patients

If your doctor diagnoses you with chronic fatigue syndrome, you’ll probably get two pieces of advice: Go to a psychotherapist and get some exercise. Your doctor might tell you that either of those treatments will give you a 60 percent chance of getting better and a 20 percent chance of recovering outright. After all, that’s what researchers concluded in a 2011 study published in the prestigious medical journal the Lancet, along with later analyses.

Problem is, the study was bad science.

And we’re now finding out exactly how bad.


…

 

[Michael Scally MD]

A Reboot For Chronic Fatigue Syndrome Research
A reboot for chronic fatigue syndrome research

After decades of pleading, people with the condition have finally caught the attention of mainstream science — and dozens of exploratory studies are now under way. Scientists entering the field are using the powerful tools of modern molecular biology to search for any genes, proteins, cells and possible infectious agents involved. They hope the work will yield a laboratory test to diagnose ME/CFS — which might have several different causes and manifestations — and they want to identify molecular pathways to target with drugs.

The US National Institutes of Health (NIH) in Bethesda, Maryland, bolstered the field last year by more than doubling spending for research into the condition, from around US$6 million in 2016 to $15 million in 2017. Included in that amount are funds for four ME/CFS research hubs in the United States that will between them receive $36 million over the next five years.

The stakes are high because the field’s scientific reputation has been marred by controversial research. …

 

[Dr JIM]

^^^^^
Yet in spite of years of intensive study a causal relationship has yet to be elucidated, nor has an specific organ ssystem been identified as the most likely source for CF patient complaints, excepting perhaps one
neuro-psychogenic,

Jim

 

[Dr JIM]

And IMO based upon the data to date where will all this "new" esearch lead ?

To "sydromoic criteria" similar to that of fibromyalgia, and while this approach may provide comfort to patients, it does little to enhance evidence based medical therapeutics.

That being said I do hope I'm wrong!

JIM