"Doc Fix" Bill Paves Way to Force Patients to Undergo Psychiatric Treatment

The expansion of involuntary outpatient commitment paves the way to a dangerous erosion of civil liberties that will lead to more Justina Pelletiers, more Karina Hansens, and more abuse of power by misguided state authorities and psychiatrists. 

If this bill remains unchallenged, patients with ME/CFS who have been misdiagnosed with "somatoform disorder" run the risk of being confined indefinitely to psych wards.

Please contact your representatives here. Find your Senators here. Let them know that you want them to:

Please oppose the $60 million grant program (Sec. 224) to expand involuntary outpatient commitment (IOC), also called Assisted Outpatient Treatment (AOT), under the Protecting Access to Medicare Act of 2014, H.R. 4302. This bill constitutes a dangerous erosion of civil liberties that will not only harm patients with mental illnesses, but those who have been mistakenly diagnosed with psychiatric conditions. Please prevent more cases like Justina Pelletier's.

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Mental Health Advocates Decry Forced Treatment Provision in "Doc Fix" Bill

WASHINGTON, March 28, 2014 /PRNewswire-USNewswire/ -- The bill rushed through the House of Representatives by voice vote yesterday to patch Medicare regulations includes a highly controversial provision that has nothing to do with Medicare, and that would subject people in crisis to forced treatment. Studies have shown that such force causes trauma and drives people away from treatment, mental health advocates warned.

Today, an array of national mental health and disability advocacy groups joined together to decry this provision, which they view as a regressive attack on hundreds of thousands of Americans with serious mental health conditions.

"In its rush to fix a problem with Medicare, the House passed a bill including a highly controversial program, involuntary outpatient commitment, with no debate and no roll call vote," said Raymond Bridge, public policy director of the National Coalition for Mental Health Recovery (NCMHR), a coalition of 32 statewide organizations and others representing individuals with mental illnesses. "And it seems that the Senate may pass a version of the House bill including this troubling provision on Monday," Bridge added.

The 123-page Protecting Access to Medicare Act of 2014, H.R. 4302, includes a four-year, $60 million grant program (Sec. 224) to expand involuntary outpatient commitment (IOC) – also called Assisted Outpatient Treatment (AOT) – in states that have laws authorizing IOC. The laws allow courts to mandate someone with a serious mental illness to follow a specific treatment plan, usually requiring medication. The facts show that involuntary outpatient commitment is not effective, involves high costs with minimal returns, is not likely to reduce violence, and that there are more effective alternatives.

Assisted Outpatient Treatment is central to the controversial Helping Families in Mental Health Crisis Act (H.R. 3717), proposed by Rep. Tim Murphy in December 2013.

"This legislation would eliminate initiatives that use evidence-based, voluntary, peer-run services and family supports to help people diagnosed with serious mental illnesses to recover," said Daniel Fisher, M.D., Ph.D., a psychiatrist and an NCMHR founder. "It would bring America back to the dark ages before de-institutionalization, when people with mental health conditions languished in institutions, sometimes for life."

The provisions of H.R. 3717 would exchange low-cost, community-based services with good outcomes for high-cost yet ineffective interventions, according to the NCMHR; the National Disability Rights Network (NDRN), the non-profit membership organization for the federally mandated Protection and Advocacy (P&A) Systems and Client Assistance Programs (CAP) for individuals with disabilities; and the National Council on Independent Living (NCIL), which advances independent living and the rights of people with disabilities through consumer-driven advocacy.

NDRN, NCMHR, AAPD and NCIL note that the bill does not represent the mainstream of national thought, practice and research.

"This legislation will have a devastating impact on persons with psychiatric disabilities by stripping SAMHSA [Substance Abuse and Mental Health Services Administration] support for consumer involvement in their recovery," said Mark Perriello, president and CEO of the American Association of People with Disabilities (AAPD). "Americans with psychiatric disabilities are our friends, co-workers, neighbors, and sisters and brothers. This legislation tramples their civil rights, and must not move forward as currently written."

"Force and coercion drive people away from treatment," said Jean Campbell, Ph.D., one of the nation's leading mental health researchers. "In 1989, 47% of Californians with mental illnesses who participated in a consumer research project reported that they avoided treatment for fear of involuntary treatment; that increased to 55% for those who had been committed in the past."

Enlarging the capacity for inpatient commitment "could violate Olmstead v. L.C. (1999), the Supreme Court decision, because it would increase 'unjustified segregation of persons with disabilities [which] constitutes discrimination in violation of Title II of the Americans with Disabilities Act,' " said Kelly Buckland, executive director of NCIL.

Rep. Murphy's bill is based on a false connection between mental illness and violence, the advocates say. "Study after study shows that no such connection exists. In fact, individuals with mental illnesses are actually 11 times more likely to be victims of violence than the general public," Dr. Fisher said.

"Rep. Murphy's bill would eviscerate the rights and privacy protections enshrined in the federally mandated Protection and Advocacy (P&A) System, which is the largest provider of legal advocacy services to people with disabilities in the United States," said NDRN executive director Curt Decker.

"We all agree that incarceration and homelessness are not the outcomes people diagnosed with serious mental illnesses want or deserve," Dr. Fisher added. "We urge Congressional leaders to engage in a meaningful dialogue with our mental health communities to learn about our creative innovations that truly support the health and safety of people with mental illnesses and of all Americans."

The advocates strongly urge the Senate to reject the forced treatment provision of the "doc fix" bill.

Contact: Dr. Daniel Fisher, info@ncmhr.org, 877-246-9058; Raymond Bridge, 703-883-7710, raymond.bridge@ncmhr.org

SOURCE National Coalition for Mental Health Recovery

With Significant Advances But Little Money, Chronic Fatigue Syndrome Research Tries Crowdfunding

Below is another excellent article by David Tuller.

By David Tuller, Buzzfeed, March 28, 2014

At a conference last week in San Francisco devoted to myalgic encephalomyelitis — the devastating illness more commonly and misleadingly called chronic fatigue syndrome — it was immediately clear that researchers from leading medical centers in the U.S. and abroad have been making tremendous strides in documenting immunological, neurological, cardiovascular, and other types of dysfunctions among patients.

It was also clear that little of this compelling research is being funded by the U.S. government — so much so that one researcher recently launched a video crowdfunding campaign.

Some of the emerging research has yet to be published in peer-reviewed journals, but the persuasive data provided strong support for the argument that the illness is a serious inflammatory condition triggered by infection or other physiologic insults; that it is as debilitating as other major chronic diseases, and often more so; and that patients accused of having a psychosomatic or psychiatric disorder have been seriously mistreated by the medical establishment.

“I was thrilled to see so much good science,” said Leonard Jason, a psychologist from DePaul University in Chicago and a longtime researcher into ME/CFS, as the disease is usually called these days. “That’s such a sea change. There was such a wealth of research that every session you went to you saw abnormalities being pointed out in different domains. It was breathtaking.”

At a pre-conference gathering at Stanford the day before the four-day meeting in San Francisco, scientists from the university reported that levels of 13 chemical messengers of the immune system known to increase inflammation, called cytokines, paralleled disease severity in almost 200 people with ME/CFS. In a study of a small group of patients, daily levels of a cytokine called leptin rose and fell over 25 days in accordance with subjects’ self-assessment of whether they were experiencing more or fewer symptoms.

Researchers at the Stanford and San Francisco meetings also reported that ME/CFS patients exhibit strikingly different EEG patterns than those of healthy controls, perform poorly on cardiopulmonary exercise tests (especially when they undergo the testing two days in a row), frequently suffer from co-morbid conditions such as fibromyalgia, are more likely to get sick if one or more family members also has ME/CFS or a related disorder, and experience pronounced abnormalities in many physiologic functions.

Read the rest of this article HERE.

Microbe Discovery Project Launches Crowdfunding for ME/CFS Microbiome Study

 (The following message comes from the Microbe Discovery Project. To find out more, go HERE.)
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"I think that the microbiome is going to be where the action is [in ME/CFS] ... I am really eager to pursue that work." ~Dr. W. Ian Lipkin

WE CAN DO IT!

In the past year our ME/CFS community has shown that it can rapidly raise hundreds of thousands of dollars for specific projects. After patients and supporters in Norway – with a population sixty times smaller than that of the US – raised $430,000 in 90 days for a clinical trial of Rituximab, a slew of US campaigns began crowdfunding and reached or exceeded their targets at astonishing speeds: $213,000 in 31 days for the documentary film Canary in a Coal Mine; $18,000 in 35 days for the documentary The Blue Ribbon; and $150,000 in 75 days for an Open Medicine Foundation study of Vitamin B12.

So, we can do this and we can do it quickly. Please donate now, from any country, so we can all benefit from the results of the study; Dr. Lipkin’s prestige is such that his findings will have international impact and help all of us. Tell your friends, your family and your local community to donate and spread the word.

Together, we can do this!

[Watch Dr. Lipkin describe this project here: https://www.youtube.com/watch?v=z_v3bfbBupA]

ME/CFS: a devastating neuro-immune disease as disabling as multiple sclerosis, affecting one million Americans and 17 million people worldwide.

The study: a cutting-edge hunt for the causes of ME/CFS in the gut “microbiome” – the bacteria, viruses and fungi in the digestive system – led by “the world’s most celebrated virus hunter”, Dr W. Ian Lipkin at the world’s largest and most advanced center for microbe discovery and diagnosis at Columbia University in New York.

The payoff: a world-class study with the potential to swiftly lead to treatments using drugs, probiotics or exclusion diets.

Our challenge: to raise $1.27 million (£760,000; €910,000) to fund the project and do it fast! The scientists are ready to go and can complete and publish the study within 12 months. The sooner we fund it, the sooner it starts.

Donate HERE.

ME/CFS Mortality Study: Research Participants Needed

Dr. Leonard Jason is a highly respected researcher in the field of ME/CFS. He is the only person in the U.S., to date, who has done epidemiological research on mortality in ME/CFS. 

He is now conducting a further investigation of mortality in the patient population. This research is badly needed because the disease is usually described as "benign" - that is, non-fatal.




Were you familiar with someone who had been diagnosed with myalgic encephalomyelitis (ME) or chronic fatigue syndrome (CFS) and has since passed away?

Researchers at DePaul University are looking to investigate issues related to ME and CFS mortality by hearing directly from surviving family members, friends, and/or caregivers of individuals who had ME or CFS and are now deceased.

Participation in this study is voluntary. We understand that this is a sensitive topic and that it might be emotionally difficult for some individuals to participate.

However, we believe the information we will obtain from this study has the potential to lead to a better understanding of ME and CFS mortality. The medical community and relevant government agencies need to be informed of the frequency and circumstances of deaths resulting from or associated with having ME or CFS. The purpose of this study is to document the severity and consequences of ME and CFS.

If you know someone who passed away after being sick with ME or CFS, please participate in this important survey. If you can distribute this request for study participants to all whom you know in the ME and CFS communities, please do so. This research can help to make the disease(s) of ME and CFS less invisible for patients and their loved ones.

Participants will be asked to complete a confidential online survey and will be given the opportunity to volunteer for an additional in-person or phone interview. The online survey portion is expected to take up to 1 hour of a participant’s time. Participants must be at least 18 years old.

DePaul University has published many studies of ME and CFS and is a well respected source of information about the disease.
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If you are interested in participating, please use this link to access the survey here.

If you have any questions, you can contact Abby Brown at

773-325-1164773-325-1164 or at DePaulMECFSResearch@gmail.com

DePaul University, Center for Community Research
990 West Fullerton Avenue, Suite 3100
Chicago, IL 60614

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Fight over Diagnosis Leads to Hearing

Press Release: ME Association of Denmark

Who decides if the cause of an illness is physical or psychological? Should psychiatrists have the right to incarcerate patients and force psychological treatment if they disagree with a physical diagnosis?

A dispute over the cause and treatment of a young woman’s illness led to her being forcibly removed from her parents' care on February 12, 2013.

The psychiatrists responsible for this claim she has a mental illness (somatoform illness), while her doctors and parents insist she has a physical neurological illness called ME. The Danish woman, Karina Hansen, is still hospitalized against her will and forced to receive treatments that have been proven to hurt ME patients.1 Karina’s sister reports that Karina is much worse than before she was hospitalized. You can read Karina’s story here:

http://www.prohealth.com/library/showArticle.cfm?libid=18739&site=articles

This heated conflict will now be discussed at an official hearing at the Danish parliament on March 19th in Copenhagen.2

The psychiatrists in charge of Karina work at The Research Clinic for Functional Disorders and Psychosomatics in Aarhus, Denmark.3 This clinic has created so much patient dissatisfaction that 16 patient associations requested that the clinic be investigated. A hearing has now been called and Karina’s lawyer is scheduled to make a presentation about her case. Other speakers include doctors who are specialists in conditions this clinic treats with purely psychological methods. These conditions include whiplash, fibromyalgia, IBS, PMS, Chronic Pelvic Pain, etc.

A Danish Justina Pelletier?

Karina Hansen’s story has many parallels to the story of American teenager Justina Pelletier. Both girls were forcibly hospitalized in February last year and both sets of parents were accused of mistreating their daughter by following medical advice from experts in the girls’ respective diseases. Justina has mitochondrial disease. In both cases, the psychiatrists in charge refused to allow a second opinion. And in both cases, the human rights of the patient and the parents have been completely ignored.

Justina’s story will be told on the Dr. Phil show on March 17th.4 Karina’s case will be discussed at the open hearing in the Danish parliament on March 19th. The hearing will be streamed live and later posted on Youtube. The hearing will be in Danish, but an English language statement about the hearing will be released within a week from this source.

Rebecca Hansen - ME Association, Denmark - reh@me-foreningen.dk

1 Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

2 http://www.ft.dk/Folketinget/udvalg_delegationer_kommissioner/Udvalg/Sundhedsudvalget/Nyheder/2014/02/funktionelle%20lidelser.aspx

3 http://funktionellelidelser.dk/en/about-the-clinic/

4 http://www.examiner.com/article/dr-phil-talks-with-parents-of-hospital-kidnapped-justina-pelletier

Making Hay While the Sun Shines - Contact Congress!!

With the IOM in the news, now is the perfect time to contact your Congressmen and Senators.

It is very easy.

Go to http://www.contactingthecongress.org/

Type in your zip code. Your Representatives will pop up, along with contact links.

Fill out the form. (You only have to do this the first time. It will fill automatically in the future.)

Paste your message into the box and click Send!

This is the message I sent to my Representatives. Feel free to use it.
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Recently, the IOM released its report on Gulf War Illness recommending that the illness be named “Gulf War Illness” and that the two existing case definitions be used.

In short, the IOM has done exactly nothing since they were hired four years ago– for $850,000 – to come up with a case definition. The illness, they said had “too many symptoms.”

HHS has now hired IOM to “define” Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) – another complex illness with many symptoms - to the tune of 1 million dollars. And, like the committee hired to review GWI, the IOM committee for ME/CFS is primarily composed of non-experts – people who have no research or clinical experience with the disease.

Fifty of the world's top ME/CFS experts have formally protested the IOM contract to Secretary Sebelius. They have pointed out that there already is a case definition for ME/CFS designed by experts, the Canadian Consensus Criteria, and that having non-experts devise a new definition will set research and patient care back by decades.

These experts are backed by thousands of patients, some of whom publicly voiced their opposition to the contract on January 27, 2014 at the IOM public meeting.

Jim Binns, chair of the Research Advisory Committee on Gulf War Veterans' Illnesses says, "The conclusions of the report show that it was a waste of money. The committee never had the expertise or the process to do a case definition.”

The current IOM process to review and redefine ME/CFS is an even bigger waste of money. It also a waste of time, which patients who are desperately ill with this disease cannot afford to lose.

Please support us by asking HHS to cancel the IOM Review of Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, and to follow the recommendation made by the experts: Immediate adoption of the Canadian Consensus Criteria for ME/CFS.

IOM Retracts "Chronic Multi-Symptom Illness," Recommends BOTH Case Definitions for GWI

Image: Getty Images

In the face of universal criticism for its mishandling of GWI, the IOM has recommended a return to the name "Gulf War Illness," and the use of both case definitions.

"The conclusions of the report show that it was a waste of money," said Jim Binns, chair of the Research Advisory Committee on Gulf War Veterans' Illnesses. "The committee never had the expertise or the process to do a case definition. It's good they didn't do one." (USA Today)

What does this mean for the ME/CFS community?

First, it means the IOM responds to public pressure, so the ME/CFS community should keep emailing the IOM regarding our case definition.

Second, it means that for ME/CFS the IOM 1) will not likely abandon the name "CFS," and 2) will likely recommend several case definitions.

Third, it means the IOM has absolutely no idea what it is doing.

After spending a colossal amount of time (five years of published reports) and $850,000 to come up with a case definition for GWI, IOM has failed to take a single step toward defining that illness. We can expect no less from them.

It's not too late to let HHS and IOM know what you think about this waste of time, effort (what little there may be), and money.

What you can do

TWEET!!!

@sebelius IOM admits it can't make case definitions. Cancel the contract to redefine ME/CFS. http://bit.ly/Omvuyy

Now is a great time to write your Representatives. Go here for instructions and a template letter:
http://cfstreatment.blogspot.com/2014/03/making-hay-while-sun-shines.html

Send your comments to the IOM here: mecfs@nas.edu

Send your comments to HHS here: Kathleen.Sebelius@hhs.gov
CC: howard.koh@hhs.gov; txf2@cdc.gov; Tomfrieden@cdc.gov; Marilyn.Tavenner@cms.hhs.gov; margaret.hamburg@fda.hhs.gov; Mary.Wakefield@hrsa.hhs.gov; collinsf@mail.nih.gov; richard.kronick@hhs.gov

Read more here: http://thoughtsaboutme.com/2014/03/13/iom-admitted-lack-of-expertise-in-gwi-report/

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Two Definitions for Chronic Multisymptom Illness Afflicting Gulf War Veterans Should Guide VA Treatment and Research

Press Release: National Academies - WASHINGTON – Two existing definitions of chronic multisymptom illness (CMI) -- one by the Centers for Disease Control and Prevention and another from a study of Kansas Gulf War veterans -- should be used by the U.S. Department of Veterans Affairs to guide research and treatment of Gulf War veterans, says a new report from the Institute of Medicine. Determining which definition to use in different circumstances should be based on specific needs. Furthermore, the term "Gulf War illness" should replace "chronic multisymptom illness" to reflect the group in which the illness manifests and the group's distinctive experiences, said the committee that wrote the report.

The VA asked IOM to develop a case definition for CMI as it pertains to the veteran population who served during the 1990-1991 Gulf War, as well as recommend appropriate terminology for referring to CMI. Case definitions enable health care providers to prescribe standard treatments and enroll patients into research and drug trials. A case definition might be broad in its reach to recognize all people who have a disease but may inadvertently include some who do not. However, a more specific definition might be too narrow and miss some individuals. Researchers might desire a narrow case definition to assemble a study sample in which all the subjects have a high probability of being afflicted by a certain condition. For physicians, a broader consensus case definition may be preferred to determine appropriate evaluation and treatment.

Since the conflict in the Persian Gulf from 1990 to 1991, Gulf War veterans have experienced various unexplained symptoms that many associate with their service, but no specific exposure has been definitively associated with symptoms. The wide variation in symptoms has complicated efforts to determine whether a distinctive illness exists, as many symptoms of CMI overlap with those of other diseases and conditions, such as fibromyalgia and chronic fatigue syndrome.

The committee found no clinically validated tests or measures for diagnosing CMI and was unable to develop a new consensus definition of CMI given the lack of uniform symptoms, the variety of symptoms, and the long onset and duration. Serious limitations in the methodologies for data collection and the analytic approaches used in many of the studies also undermined the committee's ability to present a single definition.

The committee recommended that the VA use two current definitions -- the CDC and Kansas definitions -- because they capture the most common symptoms and will provide a framework for further treatment and research. The CDC case definition, which has been widely used by researchers, identifies 29 percent to 60 percent of U.S. Gulf War-deployed veterans as CMI cases, depending on the population studied. The Kansas definition identifies 34 percent as CMI cases in the Kansas Gulf War veterans studied. The committee stressed that one definition should not be applied for all purposes, and instead researchers and clinicians should select one based on their needs. The CDC definition is broad and has the greatest concordance with all the other definitions but is less restrictive than the Kansas definition. For example, the CDC definition is effective for identifying as many individuals as possible. It will likely include individuals who do not have CMI, whereas the Kansas definition will likely exclude some cases.

"CMI is an important cause of disability among Gulf War veterans," said Kenneth Shine, chair of the committee and special adviser to the chancellor at the University of Texas System. "The diversity and intensity of exposures and experiences, as well as the breadth and extent of symptoms, warrant workable definitions of the illness and nomenclature so the VA can advance research and administer effective treatments."

The committee acknowledged that the two definitions cover most of the common CMI symptoms, but they do not reflect the complete array reported by Gulf War veterans. Given the lag in time between first reports of CMI and epidemiologic study, lack of exposure monitoring, and the absence of validated laboratory tests, it is not possible to define many of the typical elements associated with a case definition, the committee said. However, the VA should systematically assess existing data to identify additional features of CMI -- such as period of onset, duration, severity, and frequency of symptoms -- to produce a more robust case definition.

The committee also recommended that the VA use the term Gulf War illness rather than chronic multisymptom illness. The terminology associated with the symptoms changed over the years. The term Gulf War syndrome was used initially, but numerous other terms have appeared in medical and scientific literature, including Gulf War illness, unexplained illness, medically unexplained symptoms, medically unexplained physical symptoms, and CMI. Gulf War illness is reflective of both the geographic area and the unique experience of this group of veterans and has been used by many researchers, the committee said.

The study was sponsored by the U.S. Department of Veterans Affairs. Established in 1970 under the charter of the National Academy of Sciences, the Institute of Medicine provides independent, objective, evidence-based advice to policymakers, health professionals, the private sector, and the public. The National Academy of Sciences, National Academy of Engineering, Institute of Medicine, and National Research Council make up the National Academies. A committee roster follows.

Contacts:

Jennifer Walsh, Senior Media Relations Officer
Chelsea Dickson, Media Relations Associate
Office of News and Public Information
202-334-2138202-334-2138; e-mail news@nas.edu

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