Series:  The CFS Program at the NIH - Sept 2005

The following series covers the status of the NIH program to address chronic fatigue syndrome as of 2005.   In 2000, the program had been moved from the NIAID to the ORWH.    The series features interviews and comments from Dr. Vivian Pinn, director of the Office of Research into Women's Health, and Dr. Eleanor Hanna, who Dr. Pinn has assigned to the program.  

Part 1 - Introduction

Part 2 - The CFS Program at the NIH - What is the history behind the transfer of the CFS program to the Office of Research on Women's Health (ORWH)? How is CFS research funded? And finally, how does the NIH plan to build a stronger CFS program?

Part 3 - Scientific Review and CFS - Scientific review for CFS grant proposals at the NIH has received much attention in recent years. In this article, Dr. Terrell Hoffeld, administrator of the CFS special emphasis panel at the Center for Scientific Review (CSR), talks about scientific review and CFS.

Part 4 - The CFS Community's Concerns about the NIH - Advocates' concerns about the federal response to CFS have varied from low funding to alleged bias. Part 4 of the NIH series looks at some of the history behind the concerns of the CFS community, and how they are being expressed today.

Interview with Dr. Vivian Pinn -- For the first time, the head of the CFS program at the National Institutes of Health speaks to the CFS community. Dr. Vivian Pinn, executive director of the Office of Women's Health at the NIH, talks about the plans that the NIH has for CFS research and addresses the CFS community's concerns in this one-on-one interview. A must read.

Shaky Foundation  (2003)

There has been a lot of discussion about inconsistent research standards that are prevalent in CFS research. This innovative series takes a look at problems associated with the broad research definitions for CFS.  Then, we present some concise solutions as to what can be done to fix the problems.

Part 1 - Introduction

Part 2 - Different Illnesses, Same Name? - A stark look at the confusing differences of those meeting the 1994 revised CFS case definition

Part 3 - The Broadened Definition of CFS - A look at the controversial text of the 1994 revised CDC case definition that forever changed the illness

Part 4 - Justifying the Confusion - What are the ideologies that underpin the state of confusion and conflicting results in today's CFS research community, and why do they deserve a more thorough examination?

Part 5 Repair Job: Placing CFIDS Research on a Solid Foundation - Placing CFS on reliable ground -- A simple, common sense formula for reform.

References

Advocacy Ruts  (9/04)

 Do you want to learn about CFS advocacy?   This series takes a look at common advocacy strategies for CFS.  Then it asks the question: are these advocacy strategies effective?   If it once was assumed better left unsaid, this series dared to say it!  One of the most unique and challenging series on the CFS Report.   This series is certain to stimulate debate, discussion, and reflection on advocacy strategies.

Introduction - Why is it important to reexamine our advocacy strategies for their effectiveness.

Integration Advocacy - What is integration advocacy?   Why is it popular?   And, where will integration advocacy lead? Part One of the series 'Advocacy Ruts' examines what has become one of the most popular advocacy patterns for CFS.

M.E. Advocacy - One of the most controversial articles on CFS advocacy written to date, M.E. advocacy is the series that provoked a new discussion on a passionate topic!   This is the piece that said what couldn't be said.   Read it!

Political Advocacy -  Political advocacy is the most common form of advocacy for most issues.  But, will requests for more government funding defeat CFS? 

 This op/ed encourages the CFS community to be realistic about the pitfalls of political advocacy.   As long as public attitudes toward CFS remain uneducated and apathetic, public efforts will reflect those attitudes.   Our political requests must be specific and attached to a realistic sense of what "more government funding" could entail.

Modern Advocacy - What will it take for us to build momentum against CFS?   What is modern advocacy?   Read the conclusion of the popular 'Advocacy Ruts' series.

The Power of a Personal Story

What is the most underutilized weapon in defeating public apathy toward CFS? Our stories! This series looks at the impact that personal stories have played in helping defeat public apathy toward a variety of illnesses. Then, advice is given on how the CFS community can best make use of this powerful tool. This series is a great series for local support groups.  (5-2003)

Part 1 - Introduction - Personal stories are often the best way to change the public's hearts and minds.

Part 2 - The Jim Eisenreich Story - A Homerun for Tourettes Syndrome. What appeared to be a lose all situation for Jim Eisenreich turned out to be the story that educated me on the cost of Tourettes. Could stories of CFS do the same?

Part 3 - Ryan White - AIDS hits middle America - No advocacy community has been more savvy about using personal stories than the AIDS community. Ryan White's story got middle America involved in defeating AIDS.

Part 4 - Using Personal Stories to Defeat CFS - What can we do to make personal stories work for us? The last part of the series focuses on strategy and effectively using personal stories to combat CFS.

CFS: A Disease Like No Other

Physical discomfort and the inability to perform tasks are part of any illness. However, CFS often goes beyond being a very disabling illness, reaching in and taking more than physical health from its sufferers. This series asks the question: what makes CFS unique?

CFS affects careers, dreams, community, and family in a way few illness can. This series allows CFS sufferers to talk about the true cost of CFS: the loss of physical comfort, careers, and family. Eye-opening and informative. A must read!

A Disease Like No Other: Introduction     5/08

The Word "Fatigue"?   Most people think of fatigue as a normal experience, caused by the physical and emotional stresses of everyday life. What is often misunderstood is why CFS is so much more.

Orthostatic Intolerance and CFS - The ability to remain upright is often lost in patients with CFS. In this article, CFS sufferers talk about one of the most distinctive, and disabling, symptoms of CFS.

Neurological Problems in CFS Vary - The most variable symptom set in CFS is the neurological dysfunction.  In this article, people who suffer from CFS talk about the sleep and cognitive exhaustion.

Society, Family, and CFS - Often, part of illness is the rallying of family an friends to the side of the sufferer. But, what often occurs with CFS is far different. We explore the isolation that is often a result of CFS.