“Justina’s Law” Introduced in Congress – Is This the Beginning of the End for Voodoo Medicine?

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Reblogged from “Onward Through the Fog”

Posted: 30 Jun 2014 06:45 PM PDT

Justina’s father carries her home after her 16-month incarceration

The saying that politics makes strange bedfellows has gained a new dimension today. In a rare bipartisan effort, two staunchly conservative congressmen, Michele Bachmann and Tom Marino, have joined forces with liberals Karen Bass and Jim McDermott to propose “Justina’s Law.”

Justina’s Law would bar federal funding of any institution that uses wards of the state for medical experimentation. On the surface, this appears to be a law fraught with loopholes. It is possible that mental hospitals could justify forced psychiatric treatment on the grounds that it is usual and customary.

Usual and customary treatment for all mental illnesses (other than schizophrenia and psychosis) consists of therapy (e.g. CBT), sedatives, and/or antidepressants. These are not actually treatments, because there are no objective tests for mental disorders. That is because the majority of mental disorders are not illnesses; they are simply reflections of social conventions and cultural mores of the time. Given the lack of any scientific evidence for the existence of somatoform disorder – an antiquated diagnosis left over from Freudian psychiatry –  it would be a stretch to claim that its treatment is anything but experimental.

The treatment Justina was given throughout her stay as a ward of the state was not approved by Justina’s parents, who have consistently maintained that the state of Massachusetts experimented on their daughter. Justina’s previous diagnosis of mitochondrial disease (an inherited condition also suffered by her sister) was disputed by a neurologist at Boston Children’s Hospital. The neurologist re-diagnosed Justina with “somatoform disorder.” Her parents were then accused of “medicalizing” her illness. Over the next year, Justina was refused medication for mitochondrial disease, and placed in a locked mental ward. Eventually, the state moved her to foster care. During the 16 months she was a ward of the state, Justina’s condition deteriorated until she could no longer walk or stand.

Justina’s Law, if passed, could have profound ramifications for the ME/CFS community. Hundreds of children with ME/CFS have been taken from their homes on the basis of psychiatric diagnoses that are just as unsubstantial as somatoform disorder. This law would give legal grounds to parents suing to get their children back. It might even help get some of these pseudo-psychiatric “diagnoses” relegated to the dustbin of history, which is where they belong.

Please ask your representatives to support H.R. 4989, “Justina’s Law.”

Find your representatives here.

You may use this letter as a template.
……………………………………………..

Please support H. R. 4989, “Justina’s Law.” Justina Pelletier was incarcerated by the state of Massachusetts for over a year based on a psychiatric diagnosis for which there is not one shred of scientific evidence (somatoform disorder). As a result, Justina’s disease (mitochondrial disease, a rare inherited disorder) has progressed, and she is no longer able to walk. Justina is not the only child to have suffered this fate. In 2009, Ryan Baldwin, a boy with myalgic encephalomyelitis (aka chronic fatigue syndrome) was taken away from his family in North Carolina and placed in foster care, where he grew steadily worse.

Please prevent more cases like Justina’s and Ryan’s. Support “Justina’s Law.”
__________________________________________

Reps. Bachmann, Bass, Marino, and McDermott Introduce “Justina’s Law”

Michele Bachmann, Jun 27, 2014

Washington, D.C. — Rep. Michele Bachmann (R-MN) joined with Reps. Karen Bass (D-CA), Tom Marino (R-PA), and Jim McDermott (D-WA), the co-chairs of the Foster Youth Caucus, to introduce bipartisan legislation that prohibits federal funding for medical experimentation on a ward of the State.

The bill, H.R. 4989, nicknamed “Justina’s Law”, is a response to the recent case of 16-year-old Justina Pelletier, who was finally released from Boston Children’s Hospital (BCH) back to the care of her family after a 16-month custody battle between the Commonwealth of Massachusetts and Justina’s parents.

BCH and many other hospitals have an internal policy that allows for children who are deemed “wards of the State”, including foster children, to receive treatment or be involved in research that presents great risk even if there is no prospect of any benefit to the child.

“Whether it is one child or thousands, it is our duty to guarantee that children are kept safe from harm while in the custody of their respective states. Not all these children have families like the Pelletiers willing or able to advocate on their behalf. Sixteen months ago, Justina was a figure skater. Today, she cannot stand, sit, or walk on her own. It is unconscionable what happened to Justina, and we must do all we can to prevent it from ever happening again. Removing federal funding from such experimentation is an important first step.” – Rep. Michele Bachmann (MN-06)

“Children need to be loved and cared for, not treated as something to be experimented on. Foster children are particularly vulnerable because they may not have parents to advocate for them. This bill will make it clear that children are blessings, not guinea pigs.” – Rep. Karen Bass (CA-37)

“The bonds between children and parents is sacred. The closeness and level of intimate understanding between them transcends our societal constructs. In Justina’s case, she was kept from her loved ones and essentially detained by the hospital and the state. She was lucky to have parents that fought for her and leveraged the support of the media and public officials. Yet too many children do not have parents to speak for them and look out for their health and best interests during times of physical and emotional vulnerability. That fact saddens me. It would sadden any person who knows the power of love and affection. That is why I am proud to support Reps. Bachmann, Bass, and McDermott on this legislation because no child, with parents or not, should be subject to medical experimentation under the legal designation as ward of the state.” – Rep. Tom Marino (PA-10)

“The strength and bravery that Justina Pelletier and her family have shown in the face of incredible hardship is a guidestar for us all. We must act to protect and cherish children in the care of a state and make sure that they are not the subject of risky medical experimentation. I look forward to working with Reps Bachman, Bass, Marino and countless other colleagues from both sides of the aisle to pass Justina’s law as quickly as possible.” – Rep. Jim McDermott (WA-07)

Click here to view the full text of H.R. 4989.

The ME/CFS Day Fifty Million Dollar ME/CFS Research Funding Push – Pt. I

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Can this be good news for future research of ME? I certainly hope so and will be sending my congressman a note on this! Please join me in this effort.

– Thank you!

Fern 🙂

 

Reblogged from Health Rising

                       By Cort Johnson on May 11, 2014

“Never before in our 20+ years have we seen such advances in research” IACFS/ME Board

Funding went up a bit last year for Chronic Fatigue Syndrome at the NIH but only big money is going to the move the needle on your health. Two efforts are underway to add $50 million dollars to ME/CFS research at the NIH over five years. That would triple funding for this disease.

Why focus on Congress and the NIH? Because Congress is the ONLY way to bring big money to this disorder. That’s what Dr. Lipkin said – and he would know  – he tried to get funding and failed. If he can’t get it, then who can?

The definition of insanity is doing the same thing over and over again and waiting for a different result. We should give up hope that the NIH is going to turn itself around. They had a prime opportunity to provide a big grant for ME/CFS with the State of the Knowledge Workshop and failed.  They’re spending less money on ME/CFS adjusted for inflation than they did twenty years ago.  They need to be forced to pony up some money by the people who hold it’s purse strings – our Congressional representatives.

We have a good start.

penny jar

Recently eleven Congressmen and women  urged Director Collins of the NIH to follow the recommendations of NIH produced  State of the Knowledge Workshop and his own federally appointed panel for ME/CFS (CFSAC) and provide a $7-10 million dollar ‘Request for Applications (RFA) for ME/CFS. (See the Congressional letter – Dr. Collins – March 2014 (1))

The IACFS/ME Association followed that up with a strong letter asking the NIH to provide a five-year RFA for $7-10 million that would more than double funding for this disorder. They stated

“We are tantalizingly close to gaining an understanding of potential biomarkers, genetic traits, brain dysfunction, cytokine abnormalities, autoimmune responses, neurological disorders, and treatments” for ME/CFS.”

cart with money in it

RFA’s are the best funding mechanism the NIH has to offer. In contrast to the abysmally low level of grant applications the CFS grant review panel receives (@6 per session), RFA’s bring applications flooding in.

So far as I can tell, Chronic Fatigue Syndrome has had one RFA in it’s history; a $3 million RFA that followed the Neuroimmne Workshop in the early 2,000′s.

It wasn’t easy; it took several years and Senator Harry Reid smacking the NIH upside the head before they finally provided what ORWH director Vivian Pinn called ‘the smallest RFA’ possible, but that little RFA still made quite a difference,  supporting work by Dr. Light, Dr. Fletcher, Dr. Baraniuk and Dr. Theoharides.

Now with signs that the federal government is beginning to ditch it’s Scooge-like approach to ME/CFS, it’s past time for an RFA. With International ME/CFS Awareness day tomorrow, let’s build on these efforts, force our way into the NIH’s piggybank, and finally get ME/CFS some real money.

We have the support of 11 congressmen and women to build off of. We have our professional ME/CFS organization stepping forward. Now it’s time for the ME/CFS patients to step up to the plate.

scrooge

Support this effort by asking your Congressional Representative to sign onto the letter asking the NIH to triple research funding for ME/CFS.  (See the Congressional letter here)

1) If your Congressional Rep. has signed the letter, contact them and THANK them for their support. Something as simple as “Thank your for your attention to and support of research into the medical condition myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS).” They get little positive feedback so everything helps. Please thank Dr. Gutman for starting this at ben.gutman@mail.house.gov. It’s extra good if you’re Rep. Lofgren’s constituent but even if you’re not, that counts as well.

2) If your Congressional Rep. has NOT signed, contact them and ask them to do so. Remember that peer pressure works on them as it does for other people. Seeing their colleagues sign helps.

Contact your member of Congress via phone, letter or email, tell them you are a constituent (i.e. you vote in their district), tell a bit of your story, why research is important to you,  and ask the Congress person to read and considering signing both letters. Do not be put off by speaking to staff only and not the Congress person; staff are influential. Remember also, they work for you so don’t be shy!

Then say (write) “I’m going to call you (write) back in 2-3 weeks to follow-up, is that OK?” to confirm sign or not signed. Get a paper copy of the signed letter if possible. If they did not sign, remember to ask why and post the reason along with the Rep.’s name.

Find Congressional members phone numbers and email contacts by going here.

The ME/CFS Champions Who Have Signed include:

  • Anna Eshoo (Mountain View, Palo Alto, Saratoga, along the coast)
  • Zoe Lofgren   (most of San Jose)
  • Mike Honda (SunnyvaleCupertinoSanta ClaraFremontNewark, North San Jose, and Milpitas)
  • John Garamendi (Sacramento, Fairfield)
  • Sheila Jackson Lee (Texas, Houston)
  • Suzan Delbene (King County, Washington)
  • Eric Swalwell (Los Gatos, Cupertino, San Jose parts)
  • Scott Peters (San Diego, Poway)
  • Daniel Lipinski (Chicago suburbs, Illinois)
  • John Lewis (this is *the* John Lewis, the Civil Rights leader, from Atlanta, GA)
  • Eleanor Holmes Norton (Washington, DC)

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See what the IACFS/ME wrote below.

The IACFS/ME Letter

Dear Dr. Collins:

 

On behalf of the International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (IACFS/ME), we thank you for your attention to ME/CFS, and encourage the NIH to continue and strengthen research on this debilitating illness.

 

Last month, the IACFS/ME held its biennial research and clinical conference, attracting some 400 professionals and patients to discuss advances in biomedical and behavioral research on the diagnosis, pathophysiology, genetics, and treatments for ME/CFS. The overwhelming consensus from the attendees is that the research efforts, largely supported by NIH, are paying off. We are tantalizingly close to gaining an understanding of potential biomarkers, genetic traits, brain dysfunction, cytokine abnormalities, autoimmune responses, neurological disorders, and treatments. However, we need a special “push” at this time to solve the mysteries of this illness.

 

We call on you and Directors of key Institutes at NIH to collectively work together to issue a Request for Applications (RFA) calling for R01 and R21 projects related to ME/CFS. At a level of $7-10 million annually for five years, an RFA would double current funding and bring talented investigators into the field for the first time. The ME/CFS RFA would also dovetail nicely with ongoing NIH initiatives including those related to the brain, big data and transformative research.

 

We realize the substantial reductions in the NIH budget over the past decade have made it hard to issue RFAs. This is even more reason that we must focus our support on specific targets that are poised to make significant progress in the near future. With ME/CFS related to so many other medical diseases and conditions, support for research on ME/CFS will add to, for instance, our understanding of chronic pain, viral/ bacterial infections, sleep disorders, fatigue, autoimmunity, and cancer. In this regard, ME/CFS research already has aided knowledge of Gulf War Illness, fibromyalgia, retroviruses, and Lyme disease.

The Trans-NIH ME/CFS Research Working Group members have been helpful in coordinating awareness of the disease at the NIH. However, without financial support, their efforts to enhance applications to study ME/CFS are limited to oral encouragement. We all know that is not enough. The State of the Knowledge Workshop on ME/CFS in 2011 concluded that there is a need for interdisciplinary research, coordination of research, centralized data sharing, and recruitment of additional qualified investigators. The ME/CFS RFA could address those needs as well as the longstanding CFS Advisory Committee appeal for such an RFA.

 

The IACFS/ME is the largest professional organization in the world with a mission to promote, stimulate and coordinate the exchange of ideas related to ME/CFS and fibromyalgia research, patient care and treatment. Since 1990, IACFS/ME has been advocating for biomedical and behavioral research to develop ways to diagnose, prevent, and eventually cure this disease. Never before in our 20+ years have we seen such advances in research as what was reported at our recent conference. Bioinformatics, systems biology, high throughput technologies, and the microbiome provide new data and approaches to the study of ME/CFS. We are motivated with numerous possibilities, but troubled with the reality of underfunding to reach these goals.

 

We call on you with a united voice to set aside FY2015 funds at a level of $7-$10 million for an RFA on ME/CFS. Please let us know how we can help you make this happen.

 

Sincerely,

 

IACFS/ME Board of Directors

 

  • Fred Friedberg, Ph.D., President
  • Kenneth Friedman, Ph.D.
  • Lily Chu, M.D., M.S.
  • Staci Stevens, M.A.
  • Dennis Mangan, Ph.D.
  • Rosamund Vallings, M.B., B.S.
  • Sonya Marshall-Gradisnik, Ph.D.
  • Julia Newton, M.D., Ph.D.

 

Tomorrow on Int. ME/CFS Day in Pt II of the Fifty Million Dollar Research Funding Campaign we acquaint the new Secretary of Health with ME/CFS!  http://www.cortjohnson.org/