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Posted by Cort Johnson

March 6th

  • The
    WPI’s response to CROI
    was

    “It is interesting that infectious XMRV is
    still found only in human cells and not in mouse cells or mice. In addition,
    these data have little to say about XMRV infection in humans.” In an email Dr.
    Mikovits stated “There is still not one piece of evidence of contamination in
    the Science paper. All of the authors stand by the conclusions and data in
    Lombardi et al”.

    Dr.
    Deckoff-Jones Talks
    – Dr. Mikovits was too busy to do an interview
    but Dr. Deckoff-Jones got her two cents in her personal blog.

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Learning CFS: Dr. Lerner on his Longterm Antiviral Treatment Study (05/10) by Cort Johnson

Our clinic has treated hundreds of people who are now leading normal lives

Dr. Martin Lerner CFS PhysicianBackground: Dr. Lerner had quite a career before CFS. A check of his research record revealed over five decades of infectious disease work focusing on Coxsackie virus, herpes simplex virus, pseudomonas, interferon, Staphylococcus, Mycoplasma, enteroviruses, myocarditis, etc. A contributing author to one of the seminal works in the medical field – “Harrison’s Principal’s of Internal Medicine” – he’s published over 150 papers over the past fifty years.

In 1986 he began having troubles with dizziness and severe fatigue.

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Becoming Visible: An Interview With Dorothy Wall by Cort Johnson

Dorothy Wall is the author of ‘Encounters With the Invisible’ Unseen Illness, Controversy, and Chronic Fatigue Syndrome – an evocative guide to the public and private faces of CFS

Q. Writing a book is not easy even for a healthy person. This book, in particular, seemed like a huge task to take on. Not only did you have to retrace your dreadful collapse in 1995, you had to do a lot of research and conduct interviews, etc. Doing something this large could exert a real physical cost, yet you seemed almost compelled to do so.

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An Interview with Suzanne Vernon, Ph.D, the Scientific Director of the CFIDS Association of the America by Cort Johnson (11/07)

On November 7th, 2007 the CFIDS Association of America’s decision to Dr. Suzanne Vernon dramatically revamp their research program culminated in the hiring of their first Scientific Director, Dr. Suzanne Vernon.

Why now? The CFIDS Association of America believes it’s time to make a major effort to get the word out about ME/CFS to a research community that has not always embraced it. Intriguing research opportunities now abound but ME/CFS’s multi-systemic nature has made it difficult for it to fit into the traditional boxes medical researchers are familiar with and funding remains very low.

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An Interview with Marly Siliverman, the Founder of PANDORA, by Cort Johnson

In a few years Marly Silverman has built P.A.N.D.O.R.A. into one of the most dynamic CFS patient organizations in the U.S. P.A.N.D.O.R.A. is co-sponsoring the IACFS conference in Florida taking place from Jan 10th-14th and is organizing the big patient conference taking place on January 10th and 11th. This is the biggest CFS event we have. Phoenix Rising welcomes the opportunity to talk with Marly about her battle with CFS, her advocacy efforts and the conference.

You came down with CFS/FM in 1997 and were diagnosed in 1998. What did you do before you got CFS?

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Rik Carlson was a successful small businessman for many years before being struck by a severe case of CFS following a flu-like illness on New Years day in 1995. Two years later he had lost his business. He founded the first state Vermont CFS group, the Vermont CFIDS Association (VT CFIDS Association.

In 2003, after six years of work he published a blunt, articulate, darkly humorous biography We’re Not in Kansas Anymore that chronicled his (fascinating) life before and after CFS. In 2006 the VT CFIDS Associations efforts culminated in the Vermont legislature’s passing a bill with the object of providing an ME/CFS Manual to every physician in the state.… Read More

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A Chronic Fatigue Syndrome (ME/CFS) Patient Returns: An Interview with Martha Kilcoyne by Cort Johnson

Martha Kilcoyne
After a bout with the flu when she was pregnant in 1993 Martha Kilcoyne was stuck with flu-like symptoms that never went away. On disability after two years of fruitless battle with the disease, she and her husband started over from ground zero. Working by themselves they pioneered several techniques that forward thinking physicians use as a matter of course today.

An activity/ medication/sleep/symptom log allowed her to identify activities that helped and hurt her. Finding good sleep and pain medications and a strict sleep hygiene program helped her to finally get some deep sleep.

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An Interview with Dr. Leonard Jason on the New Prevalence Estimates and the Empirical Definition for Chronic Fatigue Syndorme by Cort Johnson (August 2007)

Dr. Jason has had a profound impact on how we view CFS. An epidemiologist, Dr. Jason lead the Pediatric definition group, produced the first complete economic costs estimate of ME/CFS, was instrumental in coming up with the correct prevalence estimates and has highlighted the central role post-exertional and cognitive problems play in ME/CFS. He is a board member of the IACFS/ME and a committee member of the Chronic Fatigue Syndrome Advisory Committee. He was a major author of the International Chronic Fatigue Syndrome Group (ICFSG) paper that provided the CDC with recommendations for the Empirical definition.

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An Interview With International Awareness Day Founder and Leader of RESCIND, Tom Hennessy (May 2008)

The CFS/FM support groups perform a lot of vital functions for CFS/FM patients; they provide advice, physician and legal referrals, emotional support and they advocate for change usually on a bare bones budget. Often run by people who themselves have CFS/FM they are the bread and butter of the CFS/FM community…and there is some fear they are fading. Dr. Bell has referred to the diminishing activity of CFS/FM support groups over time – something he thinks has dangerous implications for the CFS/FM movement as a whole.

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An Interview With Researcher, Advocate and Author Ken Friedman Ph.D. Part I: The Federal Response to ME/CFS and the Chronic Fatigue Syndrome Advisory Committee. By Cort Johnson.

One of the people at the IACFS conference I was hoping to meet was Ken Friedman. A member of the federalDr. Ken Friedman advisory board for CFS (CFSAC: 2003-2006). He was plainly not satisfied at the state of affairs at the Dept. of Health and Human Services (DHHS). Reading over the CFSAC reports at times I felt there was an extra edge to his questions. At some points it seemed that his personal frustration was clear.

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Dr. Ken Friedman on Chronic Fatigue Syndrome (ME/CFS) Part III: ‘Just Our Beginning’ Success at the State Level, the Name Change and The Future by Cort Johnson

The Name Change Dr. Ken Friedman

The CFSCC initiated a discussion regarding a name change. A Name Change Workgroup was formed and it gathered a lot of input from chronic fatigue syndrome patients and eventually a name change was recommended. In the end the new federal advisory committee (CFSAC) decided not to accept the recommendation and the effort died leaving a lot of patients upset. One could argue that it ended up being more divisive than helpful and eroded the confidence people had in the CFSAC.

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Dr. Ken Friedman on Chronic Fatigue Syndrome Part II: Research – Roadblocks and Opportunities by Cort Johnson


You’re researching non-invasive ways to treating pain. How is that going?

Dr. Ken Friedman
Trying to sell the federal government on underwriting the cost of studying non-invasive methods of treating chronic pain, particularly the pain associated with CFS, is an extremely difficult if not impossible task. To my knowledge, not a single study on this subject has ever been funded. If we are going to explore such methods of treating chronic pain, the CFS community will have to mount and support such studies without the initial involvement of the federal government.

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‘Right Living’: An Interview with Dr. Friedberg – Part II by Cort Johnson

Your program takes some work and the results will probably come more slowly than people are used to expecting. This is not easy and at one point you state that “I sincerely wish that I had a quick and effective solution. But it doesn’t exist right now”. Do you see a quick and effective solution for ME/CFS/FM appearing anytime soon?

No I don’t see a quick solution to these illnesses right now. My guess is that any new effective treatment will require lifestyle adjustments to get the best result.

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“Right Living”: An Interview with Dr. Fred Friedberg by Cort Johnson -Part I

Dr. Ken Friedberg
Dr. Friedberg is not your typical psychologist; a clinician, researcher, author and now President of the IACFS/ME he’s also had chronic fatigue syndrome (ME/CFS) for over twenty years. For much of that time he did what most people with this disease do; he spent alot of time and money trying every treatment he could. About five years he stopped trying to overcome the disease and began to focus on how he could interact skillfully with it – how he could manage it – and as he did that it lessened its grip on him.… Read More

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An Interview with Pat Fero of the Wisconsin Chronic Fatigue Syndrome Association

Pat Fero The CFS/FM support groups perform a lot of vital functions for CFS/FM patients; they provide advice, physician and legal referrals, emotional support and they advocate for change usually on a bare bones budget. Often run by people who themselves have CFS/FM they are the bread and butter of the CFS/FM community…and there is some fear they are fading. Dr. Bell has referred to the diminishing activity of CFS/FM support groups over time something he thinks has dangerous implications for the CFS/FM movement as a whole.

In recent years there has been, in my opinion, an apathy that has crept in and pervaded some parts of the support community.

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An Interview with Cort Johnson by Richard Usher (May 2007)

What do you see as the most necessary steps needed to move forward with CFS research, funding, and awareness?

In the U.S. we need to convince the powers that be in the national research institutions to make a serious effort at studying CFS. CFS is now estimated to cost the US economy $25 billion dollars a year yet the NIH and CDC each spend from about 3-7 million dollars a year on it. This is a travesty. CFS actually has much higher indirect economic costs than does asthma, a disease the NIH spends over $100 million dollars a year on.

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EV MED Research Enterovirus VP1 Immunoperoxidase stain Test Request Form (Dr. Chia)

EV MED RESEARCH
25332 Narbonne Ave, Suite 170, Lomita, Ca. 90717
Tel: 310 534 9700 Fax: 310 534 9701

Patient Name: ________________________________________ DOB:_________________

Address: ___________________________________________________________________ City:_______________________________________ State:__________ Zip:___________ Phone: _______________________ Fax:_____________________

Male Female Email address: __________________________________________

Enterovirus VP1 Immunoperoxidase stain

CPT Code: 88342*

Clinical Application

Specificity

The qualitative immunoperoxidase is used to detect the presence of enteroviral protein within the stomach biopsies or other tissue sections.

Detects most of the human enteroviruses, including coxsackie A and B, echoviruses, and enteroviruses 68-71. The antibody used in this assay is specific for enteroviruses, but does not differentiate between serotypes

Specimens

Shipping Instructions

the service of a gastroenterologist is required to undergo an endoscopy and to obtain the biopsy tissue.

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Dr. Chia at the HHV6 Symposium

Dr. Chia jolted the small chronic fatigue syndrome (ME/CFS) research world when he published a paper indicating that 80% of his patients had a previously undiagnosed enteroviral infection. This in combination with the results of a small but quite successful antiviral trial by Dr. Jose Montoya of Stanford thrust infections back into the spotlight.

Given this it seemed appropriate to give a brief overview of the ‘Pathogen Question’ in chronic fatigue syndrome (ME/CFS) before Dr. Chia’s interview. Because the interview with Dr. Chia is rather technical at spots a brief summary of Dr. Chia’s work is given below the ‘Pathogen Question’ overview.… Read More

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An Interview With Dr. John Chia M.D. Enteroviruses and Chronic Fatigue Syndrome Part II: Persistence, Treatment and the Future by Cort Johnson.

Dr. John ChiaYou’re an infectious disease specialist and thus the types of patients you see, I presume, have an acute onset of ME/CFS that was associated with an infectious event. Do you have any idea if your findings will relate to gradual onset patients?

I do not pick the patients who came to see me. About 20% or more of the patients have so called gradual onset of CFS without a clear-cut flu-like illness. It is important to look for prior episodes of fatigue following a flu-like illness.

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An Interview With Dr. John Chia, M.D. Part I by Cort Johnson (8/08)

John and Andrew Chia, London 2007 Like so many researchers and physicians, your interest in this area is personal – your son has chronic fatigue syndrome (ME/CFS). Can you tell us what happened to him and what his level of health is now?

He is much better and can go the gym to work out every day. He can run 3 miles easily and swim one mile, 3 times a week. He can stay up 16+ hours every day. Rarely, he does look tired but it was not like what he had in the past.

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