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.

Demos in San Francisco and Washington, DC - Can you come?

Below is a Call to Action posted by Susan Kreutzer on ME/CFS Forums. Anyone who is in the Bay Area on Monday or in Washington on Tuesday is welcome to attend. The demonstration will take one hour. Afterwards, Susan will be hand delivering three petitions to HHS and to her Representatives. (You can still sign them!)

West Coast Event:
WHEN: Monday, December 9th, 10AM
WHERE: 90 7th St., San Francisco

Hope to see you there!

______________________________

To All My Fellow Canaries, 

One of the best ways for multiple voices to amplify a message is by taking the message out into public view using our “outside” voices. It sure feels to me like the ME patient community is long overdue in staging a public demonstration to shine a spotlight on the U.S. Dept. of Health and Human Services (HHS) contract with the Institute of Medicine (IOM), as well as addressing the pitiful amount of funding and resources that the U.S. Government has allocated to this illness. 

If you feel the same way as I do and you are interested in joining me in San Francisco on December 9th and/or in Washington D.C. on December 10th for a series of demonstrations to very publicly raise your concerns with the IOM/HHS contract and funding for this illness. Then I welcome you to join me in together raising our voices in support of ME (CFS) patients throughout the world.

I am handling the logistical side of the planning of these demonstrations, which includes the location in downtown S.F. of the Regional Office of HHS, the headquarters of HHS located in Washington D.C., and the U.S. State Capitol and White House, also located in Washington D.C. 

I will have props to assist us in getting out our message, as well as alerting media outlets of these planned demonstrations. On December 10th, I will also be hand delivering the online IOM/HHS petition (on behalf of Patricia C.) to HHS Secretary Kathleen Sebelius, select members of Congress and President Obama at the White House. See,

https://secure.avaaz.org/en/petition/Stop_the_HHSIOM_contract_and_accept_the_CCC_definition_of_ME/

I will be in S.F. in front of the HHS S.F. office on Monday, December 9, 2013 at 10:00 am. The following day (Tuesday, Dec. 10th) I will be in Washington D.C. at HHS headquarters at 9:00 am. At approximately10:00 am, I will move a short distance up the street to the nation’s Capitol. Finally at approximately 11:00 am I will move to the White House located approximately 12 blocks from Capitol on Pennsylvania Avenue. I will try to capture the events on both of these days in photographs and on video (subject to the number of extra pairs of hands available on either of those days) to share these activities with patients (and others) who want to support these demonstrations, but are unable to attend in person.

For more details about the demonstrations scheduled for December 9th and 10th, please contact me through this thread on the Phoenix Rising Forum, or the posting I have made on the MECFS Forum, or directly through my e-mail address at WallaceAlvinCleaver@gmail.com.

In addition to the HHS's headquarters in Washington D.C., there are 10 other regional offices spread across the U.S. in the following cities: 1) Atlanta, 2) Boston, 3) New York, 4) Philadelphia, 5) Chicago, 6) Kansas City, 7) Denver, 8) Dallas, 9) San Francisco and 10) Seattle. See, http://www.hhs.gov/about/regions/ and http://www.hhs.gov/about/hhh.html. If you are interested in holding a similar demonstration at one of these locations, I would be glad to share with you the steps required to set up such a demonstration..

No matter what size of a group shows up to demonstrate, even a small group can make an impact on a wider audience if their message is delivered with clarity and passion. We need to be able to find ways to interest the media into covering our story, so we can leverage the reach of their audience to our advantage. As well as using social media to spread our message even if many patients can only dream about participating in life outside the confines of their home/bed. We already have seen how this type of a demonstration can bring much needed awareness of this illness to mainstream media outlets as demonstrated by patient advocate Rivka Solomon in the 2011 demonstrations she planned.

ME/CFS Activists Take to the Streets of Washington, DC

This article by Llewellyn King appeared today on the White House Chronicle. King has been a long-time advocate for people with ME/CFS. He has repeatedly stressed the need to take action in Washington, DC, where it will have an impact. On December 10, a group of activists will be doing just that.
_________________________________________

David and Goliath, or, the Sick and the Bureaucracy

By Llewellyn King, White House Chronicle, December 6, 2013

Malcolm Gladwell, the New Yorker writer, has grown rich with a series of books exploring the sociological dimensions of success and failure. In his latest, “David and Goliath: Underdogs, Misfits and the Art of Battling Giants,” Gladwell celebrates the many Davids who triumphed over the odds because they were nimble and resourceful.

If he wants to observe a classic David-versus-Goliath rumble, Gladwell might want to go to Washington on Tuesday (Dec. 10). He will see a frail woman go up against the federal government with a humble petition and a small following of mostly very sick people.

Her name is Susan Kreutzer and she suffers from the debilitating and mysterious disease Chronic Fatigue Syndrome (CFS), also known as Myalgic Encephalomyelitis, which is the name patients favor.

Kreutzer and others will begin their demonstration at 9a.m. outside the headquarters of the Department of Health and Human Services on Independence Avenue, where she will hand over a petition. Then she will move up the street to Capitol Hill to demonstrate and hand-deliver petitions to members of Congress. She will end her day of petitioning her government outside the White House.

Kreutzer has no idea how many, if any, demonstrators will join her, but she assures me she has the required permits to demonstrate. Another time, only six demonstrators turned out, but they unfurled a huge banner and stood on the street telling the oft-ignored story of their suffering to anyone who would listen.

Telling your story in Washington without a big-bucks lobbying firm or celebrity friends is not an easy assignment. Not only is there the high chance of being ignored but there is also the chance of being discounted as one of the apocalyptic “end of days” proselytizers, or those who believe the CIA has it in for them and who habitually assemble at the White House and elsewhere. In other words, it is easy to be dismissed as a “crazy.”

But Kreutzer, who will have a warm-up demonstration on Dec. 9 in San Francisco at the HHS offices there, believes in the strength of small voices, of a murmur in the cacophony of Washington petitioning. “I feel I have to do this,” she said.

This year, the victims of CFS are particularly upset with HHS and its dependent agency the National Institutes of Health. They are fuming at the decision of NIH to seek a new clinical definition of their disease, supplanting the Canadian Consensus Criteria, which has been the diagnostic gold standard for researchers who are deeply committed to finding a cure for a disease that affects as many as 1 million Americans and another 17 million people worldwide.

It is a disease that simply confiscates normal life and substitutes an existence in purgatory, where victims can be confined for decades until death. Sometimes they will be so sick they must lie in darkened rooms for months or years; sometimes they can function for a few hours a day, usually followed by collapse. Dysphasia — word confusion — increases. Lovers leave, spouses despair and the well of family compassion runs dry.

The first and major complaint of all those in researching the disease and those suffering from it is that NIH spends a trifling $6 million on this circle of hell that could have been invented by Dante.

The second and immediate source of anger laced with despair is that NIH has, apparently arbitrarily, decided to have the clinical definition of the disease reclassified by the Institute of Medicine and has diverted a precious $1 million to this purpose. Thirty-six leading researchers and physicians from the United States, risking retribution in funding, protested the move but were ignored. They were joined by colleagues from abroad, bringing the blue-ribbon protesters to 50.

Still nobody knows why the move to reclassify the disease. One school of thought is that NIH would like to abandon the current and well-accepted diagnostic criteria, known as the Canadian Consensus Criteria, in order to treat the disease as more of a mental one rather than a physical one.

I approached HHS for a comment and for a word with Dr. Howard Koh, the assistant secretary in charge, but have received no response.

Will this David, Susan Kreutzer, fell this Goliath, HHS?

— For the Hearst-New York Times Syndicate

Voting Time! Your vote can help the National ME/FM Action Network win $100,000!

Your help ensured the National ME/FM Action Network of Canada made it through to the Semi-Finals. Now we need everyone to vote again and see them through to the Finals and a chance at that all important $100,000, to be used to help raise awareness on 12th May 2014!  Vote online, each and every day from 2nd - 11th December 2013!

Voting is easy!

You do not need to be resident in Canada to vote, but your vote can help to ensure that one of the more proactive organizations in the world is better able to raise effective awareness of our disease beginning on international awareness day 2014. Please join with thousands of others from around the world and help raise awareness of your disease!

If you have voted before, just click HERE. Then vote!

If you have not voted before, don't worry, signing up is simple.

1. Go HERE and click on REGISTER in the top right corner.
2. Enter your email address and a password. Or you can register using your Facebook account.
3. A message will pop up that an email has been sent to confirm your registration. Go to your email inbox, open the email and click the link provided to confirm your registration.
4. Now click HERE. Then click on the VOTE button and you are done for the day.

You can vote every day until December 11th.

To date the May 12th Fundraising Group has won over $10,000 for the National ME/FM Action Network of Canada and worldwide over $650,000 for charities. All has been made possible just by having the support of people like you to vote for our nominated causes in competitions like this one. Your votes can help make such a difference - so please vote every day.

Please consider sharing this article to your own Facebook page and help bring greater awareness to the competition: 

Thank you all for your continued support.

The National ME/FM Action Network of Canada

The Action Network's contest statement is below:

“Our dream begins with awareness. May 12th Awareness Day is a chance for the 750,000 people living with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia (FM) to be seen and heard! These illnesses are real; the people are real; and they need help NOW!

ME/CFS and FM are chronic and severely disabling illnesses. They are as disabling as MS and are more prevalent in Canada than breast cancer, MS and AIDS combined! People are frequently bedridden and become isolated from friends and family – invisible in their own communities.

Dr Nancy Klimas, an expert in both ME/CFS and AIDS, was quoted as saying “A CFS patient feels the same or worse than congestive heart failure. The same or worse than late stage AIDS. If I had to choose between the two illnesses I would rather have H.I.V.”

These illnesses do not discriminate. All races, men and women, rich and poor, adults and children can be afflicted. It is devastating when a child is forced to cope with such a disabling illness.

We are on a mission to bring awareness in Canada for this community of people living with these illnesses and to set the stage for fundraising for research and more physician education. To date our volunteer efforts have been handcuffed as not only is our community very disabled, many are in financial distress. The illness limits our ability to raise the substantial amounts required to mount a large scale awareness event and to fund the desperately needed research. It is the dream of our community to erase stigma and finally be taken seriously by friends, family, researchers, government and those in our local communities.

This contest gives us a chance to fund a nation wide awareness campaign for 2014, the 22nd Anniversary of May 12th Awareness Day. It will also define Canada as a world leader in raising awareness as this day is also an international event. It will not only benefit 750,000 Canadians, but it will indirectly benefit the 20 million people that suffer worldwide.

We will use the funds to hold events in as many communities across Canada as possible which will lay the foundation for a strong network of organizations in Canada and future fund raising for education and research. We’ll connect with every MP and provincial/territorial representative in Canada and have May 12th proclaimed in cities nationwide. We’ll sport t-shirts, carry signs and have engaging speakers in as many communities as possible.

Each event will have its own venue but will share elements common to all. In order to unite the larger community across Canada we’ll also advertise in national and local papers, and, if funding permits, on TV and radio. As education is so critical, we will also target physicians, medical students and other health professionals with our letters and/or advertising. Brochures and a white board medicine video are planned.

We believe with awareness, will come action! Our community is desperately in need of treatment facilities and funding is required to support research and our scientists. A successful May 12th will bring many rewards for years to come. These activities will not only benefit us today, but they will be an investment in our future.

Aviva’s gift will help to unite our national and local communities and make a difference to the lives of many Canadians. It will give us credibility in our quest for treatment and a cure and hope for a better tomorrow.”

To quote Helen Keller – “Alone we can do so little; together we can do so much.”