Sunday, June 28, 2009

CDC's AIDS definition successfully challenged - can the same be done for CFS/ ME?

Chimes with the current fight to challenge CDC's CFS definition


It might be of interest to know that the CDC's AIDS definition was successfully challenged in 1993. Below are references to this lawsuit I was able to find on the web.

--Liz Willow

U.S. Is Sued Over AIDS Benefits - The New York Times

By Josh Barbannel
Published: Tuesday, October 2, 1990, New York Times

Hundreds of women, children, drug addicts and homeless people disabled by the AIDS virus are being improperly denied Federal benefits because the Government is using a flawed and outdated definition of the disease, a lawsuit filed yesterday in Federal court in Manhattan charged.

According to the suit, the people are being denied benefits even though they have been repeatedly hospitalized for disabling conditions, including gynecological disorders, tuberculosis, heart infections, bacterial pneumonia and kidney failure.

These symptoms are not included in the definition used by the Social Security Administration.

''I've been having strong pains since the last time I have been in the hospital,'' said one plaintiff in the suit, identified in court papers and in an interview only by her intials, S.P.

The Social Security Administration referred calls about the lawsuit to the Justice Department, which said it was unfamiliar with the suit.

At the heart of the suit is a dispute over the definition of AIDS promulgated by the Federal Centers for Disease Control in Atlanta to track the spread of the epidemic. That definition has been used, the plaintiffs said, to award or deny Government benefits.

The Federal definition lists a number of ''indicator'' diseases, like Kaposi's sarcoma, a skin cancer. The definition was drawn up after studies of early AIDS victims, often middle-class homosexual men.

Theresa M. McGovern, a lawyer with MFY Legal Services, the lead counsel in the lawsuit, said that so far the Centers for Disease Control had not conducted large studies of the effects of AIDS on women or other groups of patients. She said it was ''irresponsible'' for the Social Security Administration to rely solely on the centers' definition.

The suit seeks to be recognized as a class action representing thousands of women, children, drug users, homeless people and poor people with AIDS across New York State.


S.P. et al. v. Sullivan (Federal Court, New York)

SETTLEMENT CONFERENCE. This lawsuit challenges the Social Security Administration's (SSA) reliance on the Centers for Disease Control's grossly inadequate definition of AIDS for awarding Social Security disability benefits. The SSA regulations challenged here granted disability benefits automatically to anyone with HIV whose doctor certifies that they had one of the opportunistic infections recognized as HIV-related by the CDC. However, the CDC definition did not include many of the diseases which manifest in women, drug users and low-income people. Benefits applicants who were disabled by these non-recognized diseases not only had to provide medical evidence regarding their HIV status but also had to satisfy an additional and very difficult "functional" standard to prove they could not function normally in the work world. In July 1993, the SSA announced new regulations governing disability benefits for people with HIV which address virtually all of the
concerns raised by our lawsuit. The new regulations added the predominant manifestations of HIV in women, drug users, and low income people as criteria by which HIV-infected individuals can qualify for disability benefits. A settlement conference with the Department of Health and Human Services before Southern District of New York Judge Cedarbaum is scheduled for mid-September. Terry McGovern of the HIV Law Project is lead counsel on the case. Other participants include MFY Legal Services, Brooklyn Legal Services, Cardozo Law School's Bet Tzedek Legal Services, and the Center for Constitutional Rights. Suzanne Goldberg is Lambda's attorney on the case.


Sunday, June 21, 2009

Irish Medical Times | Opinion | Belfast-born doctor pushes ME research

Irish Medical Times | Opinion | Belfast-born doctor pushes ME research: "Belfast-born doctor pushes ME researchBelfast-born doctor pushes ME research"

Contains: Belfast-born Dr Derek Enlander has been chosen as the Irish
representative on a new European Think Tank for ME ... The 10-member group
wants to initiate an effective research effort to find the secret behind the
somewhat mysterious disease. “The doctor is [often] skeptical and believes
the patient must be imagining that they are sick. The idea that they can’t
work is because they are lazy or they are neurotic ...

“But this is not a psychiatric disease. This is a physical disease,” he stressed. “It has been
shown that there is a dysfunction of the immune system, and it is this
dysfunction that people are now actually focusing on for treatment.”

... Dr Enlander is highly critical of psychiatrists who believe graded exercise
therapy and cognitive therapy can be effective treatment. “We have found
that graded exercise therapy can actually be detrimental to the patient’s
progress ... most patients have had positive exposure to one of a number of
viruses, such as Human Herpes virus 6 ...

His clinic in Manhattan has devised a protocol based on what is called the ‘Methylation Cycle’ ...latest work involves a diagnostic test using hydrogen sulphide. “Hydrogen
sulphide is not the specific test for this disease, but it is an indicator
of an abnormality.” ... “Scientists have already uncovered a lot about ME,
but this information does not reach professional health care personnel, and
the disease is still not taken seriously,” he commented. “It is about time
this changed.”

Friday, June 19, 2009

A Fibromyalgia Cancer Connection? | Bringing the Heat: An ME/CFS Blog

Oh shit! As we don't have enough to live already. . .

A Fibromyalgia Cancer Connection? | Bringing the Heat: An ME/CFS Blog: "Individuals who reported widespread pain had a greater incidence of subsequent cancer and, after being diagnosed with a malignancy, were also about 80% more likely to die than those diagnosed with cancer who didn’t have a history of chronic pain, Dr. Macfarlane said.
The increase in cancer risk was confined to a few types of malignancies. Breast cancer was roughly fourfold more common in women who previously reported widespread pain than in those without such a history. The rate of prostate cancer was similarly elevated among men with widespread pain. Colon cancer was increased in both sexes.
Deaths due to accidents or suicide were also considerably more common in individuals with widespread pain.
“Is this a chance finding? Well, I think it could be. This is the only such report, but then I don’t think other people have looked,” the epidemiologist said. His report was viewed with dismay by audience members who regularly see patients with fibromyalgia in their offices.
In another study among the 1,163 women with confirmed fibromyalgia, for example, the rate of suicide was nine-fold greater than in the general population, as reflected in Danish mortality register statistics. The suicide rate among the 106 women with possible fibromyalgia was increased 20-fold."

Sunday, June 14, 2009

Whittemore Peterson Institute - Our Mission

Finally! A dedicted research establishment for neuro-immune diseases such as ME/CFS, fibromyalgia, atypical MS, and autism.

CFS/ Fibro has stolen the best part of the last 18 years of my life.....

Whittemore Peterson Institute - Our Mission:

"The Whittemore Peterson Institute for Neuro Immune Disease exists to bring discovery, knowledge, and effective treatments to patients with illnesses that are caused by acquired dysregulation of both the immune system and the nervous system, often resulting in life long disease and disability.

Our first goal is to work towards developing a better understanding of the natural history of these diseases, thereby diagnosing and treating patients accurately and efficiently. Generating and sustaining a blood and tissue repository and a clinical database for ME/CFS and ultimately for other neuroimmune diseases is a primary focus of the Institute.

Our goals include:
To facilitate and advance patient care
Research the pathophysiology of neuro-immune diseases such as ME/CFS, fibromyalgia, atypical MS, and autism
Develop therapeutics, diagnostics and prevention strategies for this spectrum of diseases
To advance and support medical education and physician training"

Wednesday, June 10, 2009

Genetic study finds seven different types of Chronic Fatigue Syndrome

Genetic study finds seven different types of Chronic Fatigue Syndrome: "Genetic study finds seven different types of Chronic Fatigue Syndrome
News - Chronic Fatigue Syndrome News
Written by Matthew Hogg
Tuesday, 06 May 2008

Geneticists have discovered the biological basis for seven different subtypes of chronic fatigue syndrome which correspond with different symptom patterns in patients.

For a long time it has been suggested that not all cases of chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis (ME), are exactly the same and that there are in fact several subtypes of the disease. This view has been based on research findings which have shown for example that some patients have specific immune system or hormonal abnormalities while others do not.

A new study carried out by researchers at St George's Hospital, University of London, now provides genetic evidence that there are indeed variations of the disease and that these influence the symptoms that predominant in individual patients.

The results of the study are due to be officially presented at a ME/CFS conference in Cambridge, England which is being organised by ME Research UK and the Irish ME Trust.

The study involved 55 ME/CFS patients from both the US and UK along with 75 healthy controls. The researchers took blood samples from all participants and carried out genetic analyses.

Seven Subtypes of ME/CFS

Results showed seven distinct genetic patterns amongst the patients which were linked to specific symptom patterns.

These are:
Type 1 - high levels of depression and anxiety as well as poor sleep and high degrees of pain.
Type 2 - severe post-exertional fatigue, joinjoint and muscle pains.
Type 3 - mildest form of the disease.
Type 4 - moderate levels of body pain and sleep problems
Type 5 - most severe muscle weakness and predominance of gut problems
Type 6 - associated with significant fatigue
Type 7 - most severe form with high levels of pain, swollen glands and headaches.
It was found that types four and six were the most common forms of the condition.

Perhaps unsurprisingly it was found that most of the genetic markers in patients involved the regulation of the immune system. Strong evidence from other studies suggests that the immune systems of patients' remains activated after an initial trigger such as a viral infection. It is suggested that this itself is likely to cause symptoms and results in unbalanced defences which can allow other infectious agents such as bacteria and fungal organisms to cause various infections.

ME/CFS support organizations such as those organising the Cambridge conference are hoping that this information will lead to blood tests which will make diagnosis of the condition much easier and more accurate and will allow for tailoring of treatment based on the particular variant the patient is suffering from. Currently, diagnosis of ME/CFS is based purely on symptomology which is often difficult given that so many symptoms overlap with many other diseases.

Neil Abbot of ME Research UK said: "The discovery of a 'thumb-print' for the illness would be the single greatest advance that could be made because, at the moment, diagnosis is on the basis of a set of vague symptoms association with other illnesses.

"It's a hard illness to get a handle on, so a clinical test would be the single best way forward for everyone."

Lead researcher Dr. Jonathan Kerr said: "We must now determine what these sub-types represent, as they appear to be biologically meaningful, and discover their natural history and possibilities for treatment."

Dr. Kerr has been one of the most prominent researchers into the genetics of ME/CFS and is dedicated to developing a diagnostic test and effective treatments for the condition"

The truth about chronic fatigue syndrome?

Personally I do not have the strength to challenge my mainstream health care providers but am continualy being left open mouthed with shock at the bullying, patronising and uterly off hand manner in which I am treated by anyone but my GP...but I think she is afraid to give a definite diagosis, hmmm?????

[Co-Cure] ACT: CFS Patient Groups Cowed By The CDC?
Permission to repost

The only sane and rational response to the evident
failure of the DHHS, CDC and NIH to respond with any sense of urgency to the
public health threat of the epidemic disease Myalgic Encephalomyelitis over the
last 25 years can be found by reading Hillary Johnson’s powerful and forthright
speech titled “The Why” which was presented at the Invest in M.E. London
Conference on May 28th 2009. That is how you address the systemic failure
to address a disease that has destroyed the lives of millions around the globe
– speaking up truthfully and fearlessly about the undeniable facts. I applaud
Hillary for telling it like it is!

I ask all “CFS” patient organizations to read this
speech again and explain why they have not addressed the incriminating facts in
their meek testimonies to the CFSAC. Why are they not exposing the elaborate
web of deceit that ignored the evidence for this epidemic disease, replaced it
with a phantom creation called CFS, branded it as an unexplained illness,
restricted research to the genetics of stress, and cast patients as defective,
inferior human beings? A modern day eugenics program has been revealed in the
words of Reeves himself, and you have little to say that would radically alter
this inhumane and unforgivable state of affairs?

I read your testimonies and see nothing but
suggestions for tweaking this indefensible program. Remove Reeves - but the CDC
will find a similar replacement; make available the CDC’s research data since
1984 - on its phantom creation CFS; request that it abandon its Empirical CFS
Definition - ignoring the preceding false definitions; collaborate with other
researchers and organizations - under the CDC’s self-proclaimed supremacy;
partner with the IACFS/ME - whose conferences still unashamedly promote
psychosocial research, or the CAA - who benefited financially in the branding
of CFS; all calling for more of the same research to nowhere.

Hillary asks if we are more comfortable being
labelled as mental patients, and from the evidence of these testimonies it
appears that our so-called charities would rather let the false “CFS” construct
become more entrenched while millions of dollars are wasted on damaging
psychosomatic theories and not on urgently needed biomedical research. Not one
patient group is standing up for the scientific facts that have overwhelmingly
demonstrated that M.E. is an infectious and inflammatory disease of the central
nervous system, that this was the disease the CDC redefined as “CFS”, that the
disease is being transmitted through us and the blood banks without warning to
the general public, and M.E. patients are dying because of institutionalized medical
ignorance and neglect.

Not one group is demanding a Congressional Inquiry
into the institutionalized denial of Myalgic Encephalomyelitis, demanding that
the DHHS, CDC and NIH recognise the infectious disease M.E., and for the
creation of a definition that addresses the neurological, immune, autonomic,
cardiac and mitochondrial dysfunction together with the known biomarkers of the
disease, or that the CDC renounce its CFS program and alert the public to this
pandemic, or pushing for politicians and human rights groups to urgently
address this evident public health crisis. Not one group will acknowledge that
M.E. is the crisis! What is the gain to these groups by cowing to the CDC’s
“CFS” and not standing up for M.E.?

These groups do not protest against the request forwarded to newly appointed CDC director, Dr. Thomas Friedan, that “CFS activities” be moved from the National Center for Zoonotic, Vector-Borne, and Enteric Diseases at the Chronic Viral Diseases Branch - to the National Center for Chronic Disease Prevention and Promotion, a serious downgrade of priority. Not one group is demanding that the NIH place M.E. at the National Institute for Neurological Disorders and Stroke with a formidable budget - they do not question the CDC’s “CFS” being housed at the Office of Research into Women’s Health, knowing that no neurologist or other specialist will ever hear of the infectious disease Myalgic Encephalomyelitis. Whose side are these groups on?

Sadly, if all these groups and individuals are
content to quietly ask the CDC to tweak its “CFS” program then another
generation will have to fight this battle all over again and those of us beaten
by this terrible disease will struggle to live out our final days of living
hell in misery.
Heroically, the renowned author of 'Osler’s Web' has
spoken publicly and fearlessly about what we now know were outbreaks of Myalgic
Encephalomyelitis and not some “new illness” that the CDC allegedly

Why can’t all patient groups call for truth and justice
for M.E. sufferers with the same fearless voices?

Will anyone hear Hillary’s brave and timely call
for us to be more “radioactive”, before it really is too late?

John Anderson

Tuesday, June 09, 2009


Home - OSLERSWEB.COM: "If you have wondered why there are currently few effective medical therapies for your illness, or why its cause remains unknown, read this book. If you have felt bewilderment when you encountered skepticism from family, friends, employers and doctors after falling ill, Osler's Web will help you understand how the skeptic's view was nurtured by federal health bureaucrats and allowed to become the status quo.

Osler's Web will introduce you to the men and women who first recognized this disease in their medical clinics and, eventually, described the disease in medical journal articles in the middle and late 1980s. You will meet, as well, the scientists and bureaucrats inside the Centers for Disease Control and the National Institutes of Health who attempted to squelch research throughout the 1980s and 1990s, and scientists in elite private institutions who made important discoveries that were buried under a blizzard of propaganda. You will hear the voices of people who fell ill--children and adults--and the voices of their doctors, who struggled to help them.

Veteran reporter Hillary Johnson, who was a contributing editor at Rolling Stone magazine at the time, interviewed more than 500 scientists, doctors and public health officials over the course of nine years to complete Osler's Web. She undertook scrupulous research, traveling to three continents and most major American cities to report on the stunning melt-down that occurred in the scientific and medical communities in the face of this now-widespread disease.

If you are curious about the history of this disease, and are seeking insight into why--twenty-five years after it first emerged as a public health crisis--ME/CFS continues to be controversial, read the new edition of Osler's Web"


Home - OSLERSWEB.COM: " is being introduced in tandem with a new and updated edition of my 1996 book Osler's Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic. A decade ago, Osler's Web was described by one reviewer as 'a relentless, meticulous and highly persuasive expose by a journalist who spent nine years investigating the medical research establishment's failure to take seriously chronic fatigue syndrome.'

In the new update, 'Ten Years Later,' I discuss why the disease continues to be ignored or dismissed as unimportant by the medical profession and why patients continue to be disenfranchised, twenty-five years after a world outbreak of this disabling disease."

Sunday, June 07, 2009

CFS Personal Story/Call for Action

A must read....

When months went by and I did not seem to fully recover, I went through a myriad of tests and skeptical doctors before (2 years later) I had an official diagnosis: CFS. I remember the first time a doctor suggested it to me. “You might have chronic fatigue syndrome,” he said. “Some people develop that after severe cases of mononucleosis.” The funny thing was, I didn’t realize at the time that he was actually diagnosing me with anything. I thought he was just telling me what I already knew: that, following mono, I had become chronically ill and exhausted. It wasn’t until another doctor brought it up again that I realized that was actually a name for an illness. “I feel way too sick to have something called chronic fatigue syndrome,” I told her.

But, as it turns out, as ridiculous as the name is, CFS is a real and devastating disease. Also known as chronic fatigue immune dysfunction syndrome (CFIDS) or myalgic encephalomyelitis (M.E.), it is currently classified under the World Health Organization as a neurological disease. It also affects the immune, endocrine, and other organ systems. The CDC recently acknowledged CFS as a real and serious illness that can be as debilitating as multiple sclerosis, late stage AIDS, chemotherapy treatment, COPD, and end stage renal failure. CFS also afflicts at least one million people in the U.S. Some estimates have it at over 4 million.

Yet, despite this, CFS is still one of the least funded of all illnesses in the United States. According to the CFIDS Association of America, more money was spent studying hay fever last year than on CFS.

Due to such limited funding and research, to date there are very few treatment options currently available for CFS (none FDA approved), and much of what is available is primarily trial and error. I have spent my entire life savings on various treatments to try to get well. Thus far, none have worked, and many made me worse.

I have always been a very determined person, often to a fault. I went back to work the very morning I woke with my temperature just barely below 100 degrees (3 weeks after onset), though I otherwise was not much improved. Clearly, it was too soon. Within a month, my 104 fever was back full blown, and I was out of work for another 3 weeks.

Following that setback, I was able to push myself to continue working full time for the next few years; however, it was not without great difficulty. I often had to rest in my car during my lunch hour, and went straight to bed upon getting home. I was running my body to the ground, and though I knew this, I did it anyway. I was of the mind-set that I could push through anything, and that with enough perseverance, I would eventually overcome.

Not so. I learned the hard way (and I am still learning) that CFS does not reward that kind of forced perseverance. After years of pushing my body beyond its capacity, I had a setback (known in the CFS world as a “crash”) so severe I ended up housebound and had to quit my job. Not long after that, I had a crash that left me bedridden and unable to speak above a whisper. That was 9 years ago. I have spent what was supposed to be the most vital years of my life sick, barely able to speak and confined to my bedroom.

Lest you think I have merely fallen into some kind of depression or given up, I assure you I have not. I am not depressed, and I still fight to overcome my obstacles every minute of every day. In many ways, I fight harder now than I ever did before. It is for that reason that I write and share this with you today.

As most of those stricken with this illness, I was previously a fully healthy, energetic, ambitious and well educated young woman (just 24 years old). I graduated magna cum laude with a B.S. in psychology from Tufts University. I worked in human resources, first at an internationally known publishing company in Boston, then at a state university. I traveled extensively in my youth, including a year abroad in London, during which time I back-packed through Europe for a month at spring break. After college, my friend and I spent nearly 2 months driving 6,000 miles across the United States.

I love to travel. I love to learn. I love to draw and read and spend time with friends and family. I love photography and the outdoors. I love to dance. It's not that I no longer want to do these things. It’s that I can't.

Monday, June 01, 2009

Fibromyalgia: Patients say many doctors don't take them seriously - Sacramento Living - Sacramento Food and Wine, Home, Health | Sacramento Bee

Fibromyalgia: Patients say many doctors don't take them seriously - Sacramento Living - Sacramento Food and Wine, Home, Health | Sacramento Bee:

"Asked to describe the seemingly indescribable, to make real the manifestations of a medical condition that some still doubt even exists, fibromyalgia patients often rely on similes of the most wince-inducing sort.
• 'I felt like acid was going through my veins.'
• 'It was like a steamroller ran over me.'
• 'Fatigue like someone's pulled out your battery pack.'
• '… as if someone pinged me with a hammer all over my body.'"

Describing the pain in my elbows "as if someone is sticking needles into my elbows" the Dr solemnly asked " who do you think is sticking pins in you?" . . .if you didnt laugh you would cry - I was just trying to describe the stabbing pains.....