Lessons I learned from the end of a stick

Every once in a while, life gives us a lesson that we will never forget. Mine came on May 6, 1971, in Boston.

On that morning over 3,000 anti-war demonstrators gathered at the JFK Federal Building for a nonviolent sit-down demonstration. We were protesting the mining of the harbors in Vietnam, or perhaps the bombing of Cambodia. I don't remember which, but it was important enough for me to consider doing something public.

The group that had organized the demonstration, the People's Coalition for Peace and Justice, held workshops the previous night to train us in nonviolent protest. The idea was that we were to block the nine entrances to the building by the simple act of sitting down. If anybody tried to remove us, we were to go limp. We were instructed to wear light clothing (T-shirt and jeans), and to put a dime in our shoes. (For the telephone call in case we were arrested.)

The leaders of the demonstration had cooperated with the Boston police, and assured them that this was to be a peaceful demonstration, unlike so many others around the country. At the suggestion of the police, the leaders wore armbands, so that both police and protesters could identify those in charge. This would help maintain order.

As planned, we left our gathering places that morning and walked in an orderly fashion to the federal building. There, we were met by several hundred riot police in full gear.

First, they arrested our leaders, who were easily identified by their armbands. Then, they set their dogs on us. Then they hit us over the head with 3-foot billy clubs. They maced us, flung us into the air like rag dolls, dragged us off bleeding, and, finally, they arrested anyone they hadn't already knocked unconscious. I never got to use my dime, because they didn't let me make my phone call. They just threw me in jail.

There is a moral to this story. Actually, there are two. The first is that you can't negotiate with people who intend to kill you. The second is you can't negotiate from a position of weakness.

The protest leaders placed us in a position of weakness by negotiating away the only weapon we had. We had numbers, and the potential to cause disruption. They had more weapons, lethal ones, but even with those weapons they could not have overcome 3,000 people - if those people had not cooperated.

I look upon the IOM contract, and indeed upon most of what the federal government has said and done to us over the last 30 years, as a battle. Some of us believe that by cooperating, by playing by the rules they have set down for us, by showing them that we can go limp, they will give us what we want.

That will never happen, simply because people without power never get what they want by going limp. Especially not during a battle. The way people with no power, no money, and no authority get what they want is by refusing to negotiate, by refusing to shut up, and by creating the disruption of "business as usual" through the application of constant pressure.

There are a million people with "CFS" in the U.S. More than 17 million with ME worldwide. Our resolution for the New Year should be to make sure that the people who put Karina Hansen in a psych ward hear us. That those who deny us medical care hear us. That those who bully and threaten our advocates hear us. That those who strip us of our rights while telling us they "feel our pain" hear us. That those who steal our funds, and blacklist our doctors, who turn a deaf ear to our pleas for help, and who belittle, dismiss and ignore us - hear us.

There is power in numbers. And a million is a big number.

We will remember 2013 for all we tried to accomplish. Let's make them remember 2014 for all we did accomplish.

2013 - A Year to Remember

Bob Miller skydiving for ME on May 12

By Erica Verrillo

What a year this has been for the ME/CFS community!

With four major conferences held in the US, the UK, and Australia, the inauguration of two new research and treatment centers, the first FDA meeting to discuss drug development for ME/CFS, fireworks at the CFSAC, the still unabated IOM controversy, an unprecedented consensus from the top 50 ME/CFS experts, two exciting new documentary projects, and an upsurge in advocacy efforts, this has been a year to remember.

Meetings: FDA Developments and Fireworks at CFSAC

The FDA held its first ever ME/CFS workshop, Drug Development for Myalgic Encephalomyelitis Chronic Fatigue Syndrome (ME and CFS), April 26 and 27, 2013 in Washington, D.C. The first day of the meeting was titled “Disease Symptoms and Daily Impacts That Matter Most to Patients” and featured presentations by patients, including Dr. Jon Kaiser, Joseph Landson, Charlotte Von Salis, Tasha Kelemen, Matina Nicholson, Mary Schweitzer, Mindy Kitei, and many others. Patient advocates Mary Dimmock, Dr. Janet Smith and Denise Lopez-Majano also described how the illness has affected their family and friends. ME/CFS physicians and researchers Dr. James Baraniuk, Dr. Charles Lapp, Dr. Steven Lempert, Dr. Judy Mikovits, Dr. Derek Enlander and Dr. Dan Peterson addressed the necessity of developing treatments, even if the cause remains unidentified. (You can read about the first day of the FDA workshop HERE.)

The second day of the FDA development workshop for ME/CFS focused on clinical trial design, outcome measures, regulatory issues and possible pathways to expedite drug development for CFS and ME, as well as the development of clinical trials. (You can read about the second day of the FDA workshop HERE and HERE.)

The May 22-23 CFS Advisory Committee (CFSAC) meeting was held, as usual, in

Eileen Holderman

Washington, D.C. The meeting, which was streamed live, was chaired by Gailen Marshall, and attended by Wanda Jones, former chair of the committee, Kim McCleary, CEO of the CFIDS Association of America, Fred Friedberg, president of the International Association of CFS, Ken Friedman, representing the New Jersey CFS Association, Ermias Belay of the CDC, Susan Maier of the NIH, Theresa Michele of the FDA, Mary Ann Fletcher, Dane Cook, Steve Krafchick, and Eileen Holderman, among others. While the first day revolved around ongoing government projects, such as the CDC’s multi-site study, the second day of the meeting produced fireworks when voting member Eileen Holderman accused the Designated Federal Officer, Nancy Lee, of intimidation. The negative publicity generated by Ms. Holderman’s (and Ms. Mary Ann Fletcher’s) contention that they had been bullied and threatened with expulsion for stating their views ultimately led to the demotion of the fall CFSAC meeting to a webinar.

Conferences at Home and Abroad

On January 26, The Institute for Neuro Immune Medicine hosted a patient conference about Gulf War

Nancy Klimas (center) and staff

Illness and ME/CFS in the DeSantis Center at Nova Southeastern University. Speakers included Dan Peterson, MD; Gordon Broderick, PhD; Mady Hornig, MD; Connie Sol, MS; Irma Rey, MD; Sue Levine, MD; Nancy Klimas, MD; Dolores Perdomo, PhD; Lynn Rafferty, PharmD; Scott Carlson (Exec. Director Chronic Fatigue Initiative); and Rebecca Halstead (Army Brigadier General, retired). Because this was a patient-centered conference, presentations included new treatments, coping techniques, and stories of recovery. (Videos of the conference can be viewed HERE.)

On May 31st, Invest in ME, a UK charity, held its 8th annual conference to explore biomedical research into ME. This year's conference, titled "Mainstreaming ME Research: Infections, Immunity and Myalgic Encephalomyelitis,” featured a roster of noted physicians and researchers: Dan Peterson and Andreas Kogelnik, who shared the keynote address; Mady Hornig on pathogen discovery in ME; Olav Mella and Oystein Fluge speaking about Rituximab, and more. (For a full program of presentations go HERE. Read Mark Berry's excellent report on this fascinating conference HERE.)

Dr. Derek Enlander

Hemispherx Biopharma, the makers of Ampligen, sponsored a conference at the New York Academy of Medicine on "Diagnosis, Treatments and New Developments in ME and CFS" on November 20th. Speakers included Dr. Nancy Klimas, Institute for Neuro Immune Medicine at Nova Southeastern University; Dr. Daniel Peterson, Sierra Internal Medicine; Dr. Judy Mikovits, Dr. Eric Schadt, Institute for Genomics and MultiScale Biology at Mount Sinai Hospital; and Dr. Derek Enlander. The Q&A panel included Dr. Francis Ruscetti, National Institute of Health and Dr. Christian Becker, Critical Care Medicine in New York. Regrettably, the conference was not filmed.

The 2nd International Symposium for CFS/ME was held on December 2nd, in conjunction with the opening of the National Centre for Neuroimmunology and Emerging Diseases (NCNED) at Griffith University. Hugh Perry (Southampton, UK) gave the inaugural Alison Hunter Memorial Foundation address, including a

Hugh Perry

detailed presentation on the neurological effects of ME titled “Impact of Systemic Inflammation on the Brain.” Presentations included: Elena Gonzalez-Rey (Granada, Spain) –“ Cortistatin – A Possible Future Therapy for Chronic Fatigue Syndrome,” Mario Delgado (Granada, Spain) – “Vasoactive Intestinal Peptide – A Potential Therapy for ME/CFS?,” Gilles Guillemin (Sydney, Australia) – “Tryptophan Metabolism,” Richard Kwiatek (Adelaide, Australia) – “Neuroimaging, Chronic Fatigue Syndrome, Depression and Anxiety: Similarities and Differences,” Sonya Marshall-Gradisnik (Gold Coast, Australia) – “NCNED’s Research Direction,” Ekua Brenu (Gold Coast, Australia) – “Immune System Overview,” Sharni Hardcastle (Gold Coast, Australia) – “Immunological Profile,” Samantha Johnston (Gold Coast, Australia) – “The Definition Question,” Dan Peterson (Simmaron Research Foundation, Nevada, USA) – “Diagnosis and Management,” Kathy Rowe (Melbourne, Australia) – “Prognosis for Adolescents with Chronic Fatigue Syndrome,” Sarah Knight (Melbourne, Australia) – “Children with ME/CFS,” Rosamund Vallings (Auckland, NZ) – “Educating Doctors,” and Warren Tate (Dunedin, NZ) – “Molecular Pathways in ME/CFS.” (You can read Ros Vallings' excellent summary of the conference HERE.)

Advocacy Efforts

Bob Miller

2013 was a very busy year for advocates. The year started with a bang when Bob Miller began a 12-day hunger strike over the FDA’s continued refusal to approve Ampligen, the only ME/CFS pharmaceutical medication that has ever been in clinical trials. Bob, who himself is taking Ampligen, also delivered a petition with 3,890 signatures to the FDA and Secretary of Health seeking Ampligen’s approval. Bob ended his hunger strike on February 10th, after receiving the assurance of Wanda Jones at the Assistant Secretary of Health’s office that Secretary Sebelius would make a serious commitment to address the unmet needs of the ME/CFS community. Ampligen was not approved.

The secret attempt of CSFAC in January to shorten (and alter) the wording of the list of priorities led Jennie Spotila to contact Public Citizen, a watchdog non-profit that has litigated cases under FACA in the past. Public Citizen sent a letter of protest to the Acting General Counsel of HHS on February 14, 2013. The letter points out that the FACAviolations deprived “Ms. Spotila and the public generally of important rights to write a letter calling for an immediate investigation into threats made against three members of the CFS Advisory Committee (CFSAC).

Jennie Spotila

observe and participate in the advisory committee process.” Public Citizen asked that the General Counsel “act to ensure that CFSAC complies with FACA and with its own charter going forward. Despite Jennie’s worthy attempts at setting CFSAC on a straight course, it continued to veer into questionable political territory when, in May, Eileen Holderman and other CFSAC members reported harassment by Nancy Lee, the Designated Federal Officer. This prompted twelve ME/CFS patient organizations and 23 patient advocates to

HHS dealt with the demand for an investigation with characteristic torpor. After more than four months, Assistant Secretary Dr. Howard Koh finally responded to the request for an investigation with the statement that “Dr. Nancy C. Lee has authority to engage in private conversations with individual members of CFSAC.” After finding Dr. Koh’s letter “completely unacceptable,” Mary Dimmock wrote a second letter to HHS demanding an investigation. As of this writing, the matter is still unresolved.

Mary Dimmock

In similar fashion to its highhanded treatment of CFSAC complaints, over Labor Day weekend HHS announced that it would be contracting the IOM to devise a new case definition for CFS. Given the IOM’s previous history of mishandling the definition of Gulf War Illness (relabeled as “Chronic Multi-System Illness"), advocates immediately demanded that the contract be rescinded, as did 50 of the top international experts in the illness. Over 6,000 people signed two petitions calling for the cancellation of the IOM contract and the adoption of the Canadian Consensus Criteria. The experts’ letter marks what can only be called a sea change in the relationship between advocates and clinicians. For the first time, the two groups stood united in their criticism of the way HHS has historically treated the ME/CFS community. They were also united by their goal, the immediate adoption of the Canadian Consensus Criteria. By the end of 2013, the controversy still has not abated, and it promises to extend well into 2014.

At the end of 2013, I am sad to report that Karina Hansen, a 24-year-old severely ill ME patient, is still

Karina Hansen

incarcerated in a psych ward in Hammel Neurocenter in Denmark. On Feb 12th, 2013, five policemen from Holstebro county, Denmark, came to Karina’s house and forcibly removed her from her bed. She was then taken to Hammel Neurocenter, where she is being treated for “psychosomatic illness” with CBT and exercise by psychiatrist Nils Balle Christensen. After almost nine months of daily “rehabilitation,” Karina is still not able to walk. Nils Balle Christensen has declared Karina incompetent in any matters regarding her treatment, and has banned her parents from visiting her. (The case of Justina Pelletier, a 15-year-old with mitochondrial disease who has been confined to a psych ward at Boston Children’s Hospital, bears remarkable similarity to Karina Hansen’s story.) In their most recent public statement, Karina’s parents said that “Karina has become an involuntary guinea pig for psychiatry.”

New Research and Treatment Centers

Nancy Klimas

On February 12th, Nova Southeastern University’s College of Osteopathic Medicine held a grand opening for America’s first Institute for Neuro Immune Medicine. The Institute, directed by Nancy Klimas, is the only one of its kind in the United States that treats patients with CFS/ME and Gulf War Illness (GWI), as well as conducting basic and clinical research under one roof. The Institute is the first in the nation to study neuroinflammatory and neurodegenerative disorders such as CFS/ME, GWI, Parkinson’s Disease and multiple sclerosis using the newest genomic techniques. “We have created a one-of-a-kind think tank that will become the leading neuro immune medicine institute of its kind in the United States,” said Nancy Klimas, M.D. (Read the announcement HERE.)

Griffith University (Australia) opened a new facility, the National

Sonya Marshall-Gradisnik

Centre for Neuroimmunology and Emerging Diseases (NCNED), on December 2nd. The new center, directed by one of the world’s foremost experts on CFS/ME, Professor Sonya Marshall-Gradisnik, is dedicated to researching the interactions between the nervous system and the immune system.  In February 2014 the center plans to open a specialized CFS/ME Clinic. The facility will provide treatment for patients with the illness, and will build on the research being conducted at the center.

New ME/CFS Film Projects

Ryan Prior’s documentary film project, The Blue Ribbon:

Ryan Prior

ME/CFS and the Future of Medicine, garnered over $17,000 on Kickstarter. The idea for the film began with a story Ryan wrote for USA TODAY about his own struggle with ME/CFS over the last 6 years. The response to the article was dramatic, prompting Ryan to embark on a film that would tell the stories of the many people suffering from this illness. To support his film, Ryan launched the Blue Ribbon Foundation, which aims to raise money for the completion and distribution of his film.

Jennifer Brea, winner of ProHealth’s 2013 Advocate of the Year Award, raised an impressive $210,000 for her full-length

Jennifer Brea

documentary, Canary in a Coal Mine. Her project also won Tribeca’s Project of the Month for November. Jennifer contracted ME/CFS while finishing her doctorate at Harvard. Her background in political science and statistics prompted her to investigate the illness, and to question the prevailing attitude in medicine that it is a disease that has no cause, no cure, and no explanation. Jennifer hopes that to convince clinicians and researchers that this is not only a serious illness worthy of their attention, but, in her words, “it’s also a fascinating puzzle.”

Prediction for 2014

2013 was a year we will all remember, because it was marked by rising expectations. The FDA meetings seemed to signal a renewed interest on the part of the federal government to help ME/CFS patients in our quest for effective treatment, as did the acknowledgment that it was a serious and debilitating disease. The building – and dashing – of those expectations has sparked an outpouring of advocacy efforts unprecedented in recent years. Jeannette Burmeister’s call for the approval of Ampligen, citing “unequal treatment” regarding FDA’s rapid approval of Bexsero vaccine for a Princeton students, is another step along the path we will surely continue to take in 2014.

My prediction for 2014 is that it will be the “Year of the Advocate.”  2014 marks the 30-year anniversary of the Incline Village outbreak, the epidemic that saddled us with the name “chronic fatigue syndrome.” It is clear that those who have been ill since the 1980s have run out of patience. Cort Johnson’s recent analysis of HHS’s lack of commitment to people with ME/CFS is a harbinger of things to come. In the following months there will be more protests, more petitions, more demands for funding, and more exposes of government neglect.

What is truly astonishing, is that after 30 years of being blacklisted, after watching our young people with ME thrown into psych wards, after having research funds “redirected,” after the insults, the derision, the blatant dismissal of an illness which has robbed us of our lives – we are still here, still fighting to make our voices heard … still undefeated.

Originally published on ProHealth.

“We will speak our truth” - Susan Kreutzer Goes to Washington, DC

Susan Kreutzer at the White House: Image by Nigel Lyons
 http://www.nigelyons.com/

By Erica Verrillo

On Tuesday, December 10th, Susan Kreutzer continued her campaign to draw attention to the plight of nearly one million ME/CFS patients in the US, by taking her cause to the nation’s capital.

As fate would have it, December 10th was the day Washington experienced one of its rare snow storms. Federal offices were shut down, but that did not prevent Susan from following her plan.

The timing of Susan’s visit was crucial. December 10th and 11th were the days scheduled for the semi-annual meeting of the CFS Advisory Committee (CFSAC – pronounced “sieve-sack”). This year, for the first time since its inception in 2003, the meeting was to be held as a webinar.

In spite of the fact that the CFSAC meeting was canceled that day due to the weather, Susan set up her table at the entrance to HHS headquarters and displayed a scroll with 3,000 signatures from a petition demanding the cancellation of the IOM contract. Nigel Lyons, a capital area cinematographer, was the only person to accompany Susan. The snow was falling heavily, but Nigel filmed until he could “no longer hold the camera.”

After submitting two petitions totaling 6,000 signatures for delivery to Secretary Sebelius, Susan tried to set up appointments with representatives on the Hill. Only one, Congressman John Garamendi (D-CA), had an opening.

Wednesday found Susan at the Rayburn House Office Building, where she met with Emily Burns, Legislative

Image: Nigel Lyons
http://www.nigelyons.com/

Correspondent and assistant to Representative Garamendi. There, Susan made the case for increased funding for researching ME/CFS.

“Male pattern baldness gets $16 million a year in federal funding,” she said, “while ME/CFS gets only $6 million.” The contrast between an illness that leaves people confined to their beds with one merely affecting vanity could not have been made more succinctly. Nor could the pleas of the ME/CFS community to “take us seriously” have been more concrete than the two petitions Susan handed to Ms. Burns that morning.

Susan intends to make another trip to Washington on January 26, during the week of the State of the Union Address, to finish what she started – handing the two petitions to 20 additional representatives.
In a final statement, Nigel filmed Susan in front of the White House, where she made her purpose clear. “For people who are in bed, and who can’t get out here, we are going to find a way for you to have a voice.”

“We will speak our truth.”

This article first appeared on ProHealth.

New Advocates’ Letter to Secretary Sebelius Re IOM Contract Open for Signatures

Below is a letter written by Lisa Petrison and Jeannette Burmeister. I signed the first advocates' letter, and have signed this one. It is quite unlikely, given their previous definition of Gulf War Illness as "chronic multi-symptom illness," that the IOM will come up with anything less heinous for us.
_________________________________________________________________

Following is a letter regarding the IOM contract that will be sent to HHS Secretary Kathleen Sebelius and other government officials this coming weekend.

We hope that everyone who signed the first advocates’ letter to Secretary Sebelius will choose to sign this one (and that we pick up some additional signatures as well!).

Due to time limitations, we are asking that those wishing to sign send notice of this by Friday, December 20, to our email address at:

advocates2sebelius@gmail.com

You also can help out by letting others know about this letter and encouraging them to sign it.

Note that as in the past, this letter is open only to people acting as advocates for the disease (in a volunteer or professional capacity), rather than to all patients or to the public at large.

However, especially since the limitations of this illness make it difficult for many patients to do very much work, we are defining the word “advocates” broadly.

If you have provided information about this disease to others, or answered questions from newly diagnosed patients on a forum, or shared your views or experiences publicly, or discussed with other patients strategies about how to make the world a better place for people with this disease, or helped out in other ways — then you count as an advocate. Please join us!

The basic format for signatures is as follows:

Name

Degree, School

Former Job (age or year disabled)

Advocacy Position (or “Patient Advocate”)

Website or Email Address (if desired)

Here is the link related to the discussion in the letter of the IOM committee advising the government about the disease formerly known as Gulf War Illness: http://bit.ly/1fBJ8sF

Here is the link related to the budget disparities between ME/CFS and other diseases with similar prevalence and severity: http://report.nih.gov/categorical_spending.aspx

Thanks much to everyone for participating.

Lisa Petrison

Jeannette Burmeister

*****

An Open Letter to the Honorable Kathleen Sebelius, U.S. Secretary of Health and Human Services

December 22, 2013

Dear Secretary Sebelius,
We are writing as researchers, physicians, authors, filmmakers, patient forum leaders, not-for-profit organization managers, bloggers and other advocates working on behalf of individuals with Myalgic Encephalomyelitis (ME), a disease that the U.S. government has historically referred to by the misleading name of Chronic Fatigue Syndrome (CFS) and more recently has called ME/CFS.

The purpose of this letter is to inform you that our previously expressed position regarding the government’s plan to redefine this disease through the Institute of Medicine (IOM) remains unchanged.

Since the September announcement of the contract with the IOM, concerned stakeholders have conveyed to you their opposition to the involvement of the IOM in the re-definition of the disease in a number of ways (including an experts’ group letter, an advocates’ group letter, multiple petitions and many individual emails).

IOM has now released a slate of proposed committee members, asking for comments. This proposed list is unacceptable for a number of reasons. The majority of the named individuals are not experts in ME/CFS; the committee chair appears to have no ME/CFS experience at all; and several of the proposed members have backgrounds focusing on mental health issues.

These problems reinforce the concerns generated by the initial report from the IOM committee charged with providing guidance to the government on Gulf War Illness, released earlier this year. That committee gave the disease an inappropriate new name; mentioned that it has symptoms overlapping with those of “Chronic Fatigue Syndrome”; and discussed the effectiveness or need for study only of treatments that are appropriate for depression but have been shown to be ineffective or harmful for ME/CFS patients (including antidepressants, cognitive behavioral therapy and aerobic exercise). Considering that this IOM panel also was dominated by non-experts in the disease being discussed and included a number of members with backgrounds in mental health, our concerns about the likely outcome of the IOM effort to redefine ME/CFS remain very high.

We again request that the IOM contract be cancelled and that the government adopt the Canadian Consensus Criteria as the definition for this disease.

In addition, we request that the government increase the budget for biomedical research into this disease to become more equitable with the budgets for other diseases with a similar level of prevalence and severity. For instance, NIH spends more than 600 times as much on HIV/AIDS as it does on ME/CFS (with a 2014 budget of $3.1 billion for HIV/AIDS vs. a trivial $5 million for ME/CFS). Considering that the number of U.S. patients living with ME/CFS (1 million) is roughly the same as the number of people in this country living with HIV, and considering that the level of suffering endured by many ME/CFS patients is equal to that experienced by untreated AIDS patients prior to their deaths, ME/CFS is woefully underfunded. This needs to be rectified immediately.

Finally, we request that the government consistently refer to this disease by its proper name, Myalgic Encephalomyelitis (ME).

Thank you for your attention to this matter.

Sincerely,

(Signatures)

Cc:

Barack Obama, President of the United States of America

Senator Tom Harkin, Chairman, Senate Appropriations Subcommittee on Labor, Health and Human Services, Education, and Related Agencies

Senator Jerry Moran, Ranking Member, Senate Appropriations Subcommittee on Labor, Health and Human Services, Education, and Related Agencies

Jack Kingston, Chairman, U.S. House of Representatives Committee on Appropriations, Subcommittee on Labor, Health and Human Services, Education, and Related Agencies

Rosa DeLauro, Ranking Member, U.S. House of Representatives Committee on Appropriations, Subcommittee on Labor, Health and Human Services, Education, and Related Agencies

Lucille Roybal-Allard, U.S. House of Representatives Committee on Appropriations, Subcommittee on Labor, Health and Human Services, Education, and Related Agencies

Barbara Lee, U.S. House of Representatives Committee on Appropriations, Subcommittee on Labor, Health and Human Services, Education, and Related Agencies

Mike Honda, California, U.S. House of Representatives Committee on Appropriations, Subcommittee on Labor, Health and Human Services, Education, and Related Agencies

Danile R. Levinson, Inspector General, U.S. Department of Health and Human Services

Adam Trzeciak, Inspector General, U.S. Government Accountability Office

Dr. Harvey Fineberg, President, Institute of Medicine

Dr. Howard Koh, Assistant Secretary for Health, Department of Health and Human Services

Dr. Wanda Jones, Principal Deputy Assistant Secretary for Health, Department of Health and Human Services

Dr. Richard Kronick, Director, Agency for Healthcare Research and Quality

Dr. Thomas Frieden,Director, Centers for Disease Control and Prevention

Ms. Marilyn Tavenner, Administrator, Centers for Medicare and Medicaid Services

Dr. Margaret Hamburg, Commissioner, U.S. Food and Drug Administration

Dr. Mary Wakefield, Administrator, Health Resources and Services Administration

Dr. Francis Collins, Director, National Institutes of Health

Dr. Harold Varmus, Director of the National Cancer Institute

Dr. Anthony Fauci , Director of the National Institute for Allergy and Infectious Diseases

Ms. Carolyn W. Colvin, Commissioner, Social Security Administration

HHS to ME/CFS Community: We don't care what you think.

Two days ago, Jennie Spotila gave a "(Lack of) Progress Report" on the December CFS Advisory Committee webinar. (See her blog, Occupy CFS.) By all accounts, the event was a disaster.

For those who are not familiar with CFSAC (pronounced "sieve-sack"), it was formed in 2003 to advise the Secretary of the Department of Health and Human Services on issues affecting patients with CFS, such as healthcare, the science and definition of CFS, education and other public health matters related to the disease. During the last ten years, CFSAC has made more than 70 recommendations to the Secretary on important issues, including research funding, Centers of Excellence, provider education, pediatric issues, case definition, and a name change. CFSAC is our community's only direct avenue for communicating with HHS, and therefore occupies a unique, and important, position in terms of influencing federal policy.

Over the past year or so, CFSAC appears to have sunk in a morass of political slime. In January 2012, it violated its public Charter and acted in secret to "narrow down" its list of priorities. (You can read about this sleight of hand HERE.) By making decisions hidden from the public eye, CFSAC not only violated its Charter, it effectively relegated the ME/CFS community to the role of passive recipients, rather than active participants in decisions that will affect us for years to come.

The second nail in CFSAC's coffin came last May when Eileen Holderman reported that she had been threatened with expulsion from the committee by the Designated Federal Official, Nancy Lee, simply for acting as a patient advocate. She said the chair was ‘shutting her down and shutting other people out.’ Most significantly, she stated that "to hijack our recommendation and pretend like it’s being done, that’s wrong.” Mary Ann Fletcher also reported having been threatened with eviction for "expressing her opinion." (Read Mark Berry's article HERE.)

The third (but probably not final) nail was hammered home when December's CFSAC meeting was transformed into a webinar. Claiming "lack of funds," HHS decided to do away with 20 years of face-to-face dialogue, substituting a venue in which participants could not - like Eileen Holderman - report bullying or harassment. Nor could they express the community's ongoing concerns over the IOM contract.

Instead of a meeting, those who signed up for the webinar got dead air, glitches, and "technical difficulties." There was no audio, so people listening on their computers heard nothing for the first 20 minutes, slides went astray, and public comments were not broadcast. As Jennie pointed out, there is no excuse for this kind of mismanagement. Ultimately, the degree to which CFSAC has been completely derailed from its original purpose can only be interpreted as a deliberate act of sabotage.

Jennie sums up the meeting with the following statement:

"This meeting accomplished two things: the public airing of the lack of progress across multiple domains and an exponential increase in frustration in the advocacy community. As many people pointed out yesterday, there is a serious disconnect in communications between HHS and the advocacy community. The decision to go ahead with this meeting was a terrible capstone to the precipitous decline in the HHS-advocacy relationship. Unless, as I said in my written comments, “HHS intends to send the message to the ME/CFS community and to you, CFSAC members, that it does not care what we think, it does not want our input, and it does not intend to do anything beyond or better than what it is already doing.”

If that’s the case, mission accomplished."

“To have to go to court to get these things is just ridiculous.”

Findlay, age 16, and his mother, Jane Waters

This story is about a mother who is being forced to go to court to get a tutor for her son, who contracted ME/CFS in 2011 after a viral illness. 

For those who are not familiar with the UK system, The General Certificate of Secondary Education (GCSE) is an academic qualifying exam given for specific subjects (somewhat like the SATs in the US). Without tutoring it is unlikely that Findlay Waters will be able to attend college.

My own experience mirrors that of Jane Waters. In the US, the Americans With Disabilities Act is supposed to provide tutoring for any child suffering from a disability or ailment that prevents him or her from attending school. But when my daughter contracted ME/CFS in 1992, her school resisted providing tutoring for her on the grounds that she did not have a "real disease."

_____________________________

Mum facing council at tribunal over son's education at St Ivo School

By Eleanor Dickinson for Cambridge News, December 4, 2013

A desperate mother has launched a fight for her sick son’s chance to have an education after his illness forced him to leave school two years ago.

Jane Waters, from Arrington, has been at loggerheads with Cambridgeshire County Council since 2011, when her son Findlay found himself unable to attend St Ivo School, St Ives, due to severe chronic fatigue syndrome (CFS).

Mrs Waters and her husband Richard are facing the council at a tribunal today (Wednesday, December 4).

The 59-year-old said: “The council has failed our son. His illness means he cannot attend school and he desperately needs a tutor to come teach him and a computer with the right software so he can use distance learning to get the education he needs.

“To have to go to court to get these things is just ridiculous.”

Findlay, 16, began suffering from CFS in September 2011 after the whole family was struck down by a virus during the summer holidays.

Finding himself crippled with extreme fatigue, sickness and mental confusion, Findlay was forced to drop out school completely by January 2012, despite his best efforts to keep attending. Now more than two years later, the once active teenager finds himself mostly confined to his bed and without any GCSEs.

His mother said: “He is a very bright and intelligent boy. Before he became ill, he struggled with dyslexia and dyspraxia, and yet achieved a grade 8 in his maths in his Year 9 exams and was set to do 10 GCSEs.

“He really wants to study maths and physics at Cambridge University. But since his illness he has had no tuition in either of those subjects and has only been given 35 hours of tuition in English.”

Mr and Mrs Waters were facing County Council representatives at a Special Educational Needs and Disability tribunal in Cambridge yesterday in the hope of gaining a maths and physics tutor and the rights computer equipment so Findlay can get back on the educational tracks.

A spokesman for Cambridgeshire County Council said: “The council has offered appropriate tuition and continues to engage with the family to find the best way to meet their son’s needs.

“A parental appeal is being made to HM Court first tier tribunal and as such it would not be right for us to comment further.”

St Ivo School declined to comment.

"We've had enough."

From left to right: Susan Kreutzer, Edward Burmeister,
Jeff Kreutzer, Jane Pannell, Susan Stapp.
Photo: Erica Verrillo

By Erica Verrillo

On Monday, December 9, 2013, a small group of ME/CFS activists gathered in front of the San Francisco Federal Building to protest the IOM contract. The demonstration was organized by Susan Kreutzer, a former attorney and long-time ME/CFS patient.

The purpose of the demonstration was to draw attention to the continuing governmental neglect of over one million ME/CFS sufferers in the United States – 17 million worldwide - and to hand deliver two petitions totaling 6,000 signatures to the regional HHS office located in the Federal Building. The petitions demand an increase in funding for research into ME/CFS, the immediate adoption of the Canadian Consensus Criteria (CCC) to define the illness, the canceling of the IOM (Institute of Medicine) contract to define ME/CFS, and officially dropping the misleading name “chronic fatigue syndrome” in favor of the term used by the World Health Organization, myalgic encephalomyelitis (ME).

To start the event, Jeff Kreutzer and Edward Burmeister unfurled a seven-by-six-foot banner displaying the 3,000+ signatures from a petition initiated by Patricia Carter. The 95-page petition demands the cancelation of the IOM contract and the adoption of the CCC. A second petition with nearly 3,000 signatures, started last summer by Mary Dimmock, also demands the adoption of the CCC and the elimination of the demeaning name “chronic fatigue syndrome.” To bring the point home that ME/CFS affects people everywhere, Susan arranged a display of flags representing the home states and countries of those who had signed the petitions – all 50 states, the District of Columbia, Puerto Rico, and 34 countries spanning the globe.

Susan Kreutzer, Jane Pannell, an RN disabled by ME/CFS, and Edward Burmeister spoke about the inequities of NIH funding, the ramifications of yet another vague definition resulting from the IOM contract, and the devastating impact of the illness on millions of people all over the world.

Nothing could express the frustration of the ME/CFS worldwide community better than the comments on the petitions. “Walk a mile in my shoes!” says Carol Baker (Australia) in a direct challenge to officials who have designed policies preventing funding and halting the development of treatments. Many more patients wrote that there was “no way to describe this illness” and explained how they had lost their careers, friends, and lives to the disease. In one particularly poignant message, Jana Buzolic (Croatia) wrote, “I got ill when I was 22 years old. This is when my life ended and the twilight began.”

Tomorrow Susan Kreutzer will again demonstrate at HHS headquarters in Washington, DC. We can only hope that when she hand delivers the bound copies of these petitions to Secretary Sebelius, and to 21 Congressmen and Senators on Wednesday, that they will take the time to read what these 6,000 people have written.

“For 30 years,” says Susan, “we have waited in line for the government to listen to us. We’ve had enough.”

This article originally appeared on ProHealth.