Local family feels vindicated by breakthrough research

Editor’s note: Earlier this year, we reported on a Black Mountain family's experience after an unidentified source accused Lisa and Rodney Baldwin of medically neglecting Ryan, their only child (see "Home for the Holidays," Jan. 6, and "Home for Good?” Feb. 24 Xpress).

Although he’d been diagnosed with chronic fatigue syndrome and declared medically disabled by the Social Services Administration, the Buncombe County Department of Social Services took custody of Ryan, who spent 10 months in three separate foster placements. The family was reunited last November.

The one-page letter dated Sept. 1, 2010, contained the following statement:

"I wanted to inform you that your son Ryan's tests indicated that he has positive [sic] evidence of XMRV in his blood sample drawn by PSI several months ago. As you know, we are just at the beginning of understanding what this means and what the implication may be for Ryan and your family."

The letter, addressed to Lisa Baldwin, was signed by Judy Mikovits, director of research for the Whittemore Peterson Institute for Neuro-Immune Disease (www.wpinstitute.org/xmrv/index.html), located at the University of Nevada, Reno. The institute has been in the forefront of recent, groundbreaking research into the association of the XMRV retrovirus with myalgic encephalomyelitis/chronic fatigue syndrome, in collaboration with the National Cancer Institute and the Cleveland Clinic.

The family had worked with "advocates knowledgeable about the institute" to get Ryan enrolled for testing, Lisa explained. Getting the positive test results, she said, has made them "more optimistic that treatments will follow that will help Ryan."

"We have lived with Ryan's disability for over six years, and getting this news has definitely impacted us as a family," she wrote in an e-mail to Xpress. "The knowledge we now have and are making public will remove some of the public's doubt inflicted by DSS," she continued, referring to the charges filed against them. "I am happy to see one solid thing in our future, even if it means once again dealing with an unknown condition, this time called XMRV."

Ryan, who turned 18 in July, continues to live with his parents (and his dog) while working toward his high-school diploma online. Xpress interviewed him recently; here’s what he had to say:

Mountain Xpress: What are your thoughts/feelings about (a) having participated in this groundbreaking research, and (b) your test results?
Ryan Baldwin:
(a) First of all, I feel very fortunate to have even been included in the research in the first place. I know that there are many other patients out there who are waiting to be tested, and I’m very grateful that I was given the opportunity to be tested so quickly.

(b) Knowing now that I have XMRV helps me remain optimistic about future treatment options. It is also reassuring to now have a concrete explanation for some of the symptoms and problems that I have experienced, especially those of the immune system.

When you were in the custody of the Buncombe County Department of Social Services, did you think you were receiving appropriate care for someone with your diagnosis? If not, why not?
The entire 10 months that I was in the department’s custody, I felt that the treatment I was given was neither appropriate for someone with chronic fatigue syndrome nor for someone who is considered medically disabled.

I was placed in the care of foster parents who were told that nothing was medically wrong with me. I was put in homes that were not wheelchair-accessible, [where] I would be forced to climb steps. In addition, I was given physical and psychological treatments designed to either exercise my disabilities away or to convince me that they didn’t exist in the first place.

Do you have any suggestions concerning training or education for social-service workers investigating medical-neglect complaints in a situation like yours?
I definitely believe that changes need to be made in how social workers handle these sorts of situations. However, it isn’t going to be as simple as additional training. There is a severe lack of general understanding when it comes to certain disabilities in this case and others like it.

No amount of simple training or extra guidelines is going to help … until the public as a whole is better educated in and understands the complexities of these illnesses.

Is there anything else you'd like to say?
Not understanding or having no desire to learn about CFS is no excuse for widespread ignorance. Be it in the medical field, legal system or just everyday life, efforts need to be made to reform the system with a better understanding of this illness.

— Freelance reporter Nelda Holder can be reached at nfholder@gmail.com.

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10 thoughts on “Local family feels vindicated by breakthrough research

  1. Ryan's Grandfather

    This article SHOULD result in the Buncombe
    County Commissioners taking their responsibility
    of monitoring DSS’ actions more seriously!
    They allowed this whole travisty of justice to
    proceed, with full knowledge of the illegal
    actions being taken by DSS against this SSA
    disabled young man!
    The judge in this case also bears some of the
    responsibility, in my opinion, for not respecting
    the testimony of a world expert on CFS, Dr Paul
    Cheney, and allowing DSS to forcefully exercise
    Ryan daily, contrary to the best medical advise available !

  2. andrea

    We are happy to have been able to help Ryan and his family and hope to help many others.
    Sincerely,
    Annette and Andrea

  3. T.Smith

    The appalling treatment this very ill child received is a direst result of the psychiatric profession’s 30 year stranglehold on the devastating physical illness CFS.

    There is still denial around the world that it is a real illness, despite the fact that it is known to cause premature death.

    A quarter of all sufferers are house or bed bound, yet still they sneered at and told it is imaginary and can be somehow cured by exercise.

    A retrovirus can never be cured by exercise.

    Many thanks to the Whittmore Peterson Institute for discovering the probable cause of this horrible illness.

  4. Media Watcher

    Should the reporter have commented on disagreement among scientists about the findings relating XMRV to CFS?

    From the Centers for Disease Control:
    On July 1, 2010, CDC researchers and colleagues from two institutions reported results of a study in which they found no evidence of infection with xenotropic murine leukemia virus-related virus (XMRV) among patients with chronic fatigue syndrome (CFS), a serious disorder that affects 1 to 4 million U.S. adults. The CDC-led team used a combination of different molecular and serologic assays to test archived blood specimens from CFS patients and healthy controls. Results of blinded testing performed at CDC and two other laboratories were negative for XMRV. These findings are consistent with three recent studies done in Europe that found no link between XMRV and CFS, but they are in sharp contrast to reports by Lombardi et al (Science 2009;326:585) and Lo et al (Proceedings of the National Academy of Sciences 2010) that found evidence of XMRV and MLVs, respectively, in large percentages of CFS patients and smaller percentages of healthy people. The CDC report, published in the open-access journal Retrovirology, is available at Absence of evidence of Xenotropic Murine Leukemia Virus-related virus infection in persons with Chronic Fatigue Syndrome and healthy controls in the United States < http://www.retrovirology.com/content/7/1/57>

  5. nfholder

    More recent findings in a joint study by the NIH and the FDA have confirmed the association of XMRV and CFS, as reported in the Proceedings of the National Academy of Sciences. You may want to study the following report published Aug. 23, 2010, and other newer reports on their website:
    “Detection of MLV-related Virus Gene Sequences in Blood of Patients with Chronic Fatigue Syndrome and Healthy Blood Donors”

    (http://www.pnas.org/content/early/2010/08/16/1006901107.abstract)

  6. Keith

    What a travesty? As a former teenager with CFS who could not go to school I have axperienced the abuse and disbelief firsthand.
    Ryan’s family should sue there butt’s off!
    No Media wather they should not publish anything from the CDC. They couldn’t find there own behind unless it was attached to there body.
    They could have included the study from the NIH that was done by the scientist who helped discover Hep C which did find the virus’s though and backed up the WPI research.

  7. Nelda Holder

    The more recent information in the Proceedings of the National Academy of Sciences (Aug. 23, 2010) contains the following statement regarding a joint study by NIH and FDA:

    “We examined 41 PBMC-derived DNA samples from 37 patients meeting accepted diagnostic criteria for CFS and found MLV-like virus gag gene sequences in 32 of 37 (86.5%) compared with only 3 of 44 (6.8%) healthy volunteer blood donors.”

    (http://www.pnas.org/content/early/2010/08/16/1006901107.abstract)

    There are other recent articles in the Proceedings as well as other publications that interested persons may want to study. One twist being researched at this point has to do with variant(s) of XMRV, something that Whittemore Peterson is looking at with respect to Ryan himself and on behalf of others who have tested positive. The letter cited in this story noted the following:

    “We have been exploring antiretroviral treatment strategies in collaboration with several experienced HIV physicians who have used the ICD9-Code 079.59 (specific retroviral infection).

  8. Media Watcher

    As Ms. Holder points out, there do appear to be conflicting views on this matter, as the editor of the Proceedings of the National Academy of Sciences acknowledged:

    Patients, patience, and the publication process

    1. Randy Schekman, Editor-in-Chief

    The publication of the article “Detection of MLV-related virus gene sequences in blood of patients with chronic fatigue syndrome and healthy blood donors,” by Shyh-Ching Lo, Natalia Pripuzova, Bingjie Li, Anthony L. Komaroff, Guo-Chiuan Hung, Richard Wang, and Harvey Alter, raises important issues regarding the release of research results to the public and the need for close collaboration with the authors and funding agencies when there is a direct link to public health.

    The paper by Lo et al. (1) shows that MLV-related viral sequences were detected in the blood of chronic fatigue syndrome patients and were present in some blood donors. Although the paper had undergone peer review and was accepted for publication in PNAS on May 27, on June 4, the authors contacted PNAS and requested a delay of publication while conflicting results from another government-funded study by Switzer et al. (2) that was submitted to Retrovirology were considered. Switzer et al. (2) did not find XMRV or other MLV-related virus sequences or associated antibodies in their chronic fatigue syndrome patient population or in healthy controls. The Retrovirology paper published online July 1.

    In light of the conflicting findings, on June 18, PNAS provided Lo et al. with additional comments including a recommendation that direct evidence of viral gene integration into the host genome be provided. The authors submitted a revision on July 22 that was evaluated by the PNAS editors. The final version of the article, which is published in this issue of PNAS, was received on July 30. The following comment was added to the paper, “The ultimate proof of low-grade infection by MLV-related viruses in humans may rely on demonstrating the integration of the viral genes into the human genome (3). The identification of provirus integration sites will take more time and effort to investigate, given that we estimate only one virus gene copy in every 400–4,000 nucleated peripheral blood mononuclear cells. Previous work with XMRV indicates that integration sites are quite variable (4) and that the same may be true for the polytropic mouse endogenous retroviruses, which are predominant in this study.”

  9. Marly Silverman

    P.A.N.D.O.R.A. is thrilled that Ryan has been reunited with his family. Our Call to Action supported by 23 other organizations in the U.S., including the Wisconsin ME-CFS Association provided some comfort to Ryan and his family during his horrific ordeal. But there are many issues that need to be addressed by local county and state officials:
    1) The lack of physician education in Buncombe County on NeuroEndocrineImmune Disorders such as CFS-ME, fibromyalgia, Gulf War Illness, Multiple Chemical Sensitivity and chronic Lyme Disease, and other related illnesses.
    2) How are the Baldwin’s going to restore their personal reputation in their community? What legal remedies do they have? Who is responsible for this fiasco?
    3) The fact that a heavy hand and unorthodox efforts were used by Buncombe County family health officials and social workers involved in this case, resulting in potential abuse of parental rights as well as child’s rights.
    4) The fact that county and state officials, including the governor’s office, who were contacted by P.A.N.D.O.R.A., refused to look at the allegations of heavy hand and unorthodox efforts on Ryan’s case, citing that the court and the legal process could not have been changed, therefore allowing one of its most fragile citizens – a disabled minor with a severe debilitating complex illness, to be placed in a foster system known for its weaknesses in protecting children’s best interests.
    5) The fact that the most damaging charge against the parents – Factitious Disorder by Proxy, was immediately dropped. It was demonstrated that the child health did not improve after they removed him from his loving family, quite contrary.

    We have contacted MAHEC – Mountain Area Health Education Center in Asheville, with the intention to collaborate and provide CME (continuing medical education) credits for physicians in the area. We were told that they could not continue their collaboration with us, because some individuals who are part of the board advising “MAHEC felt that “CFS is a gray area in medicine. They also stated that if they were to do this in collaboration with P.A.N.D.O.R.A. “it would show a bias.” How can it be? We have collaborated with other health agencies throughout the country in providing medical and patient conferences in Florida. So the question remains… why do they drop this educational effort in collaboration with P.A.N.D.O.R.A? If not now, when will it be the right time?

    We were also told that “they would create a program of their own soon”, and so far we have not heard of any efforts from MAHEC officials in Buncombe County to educate physicians in North Carolina.

    More needs to be done in the area of physician, social services and school personnel education in the state of North Carolina and Buncombe County should learn from its lessons. We sincerely believe that had these physicians and social workers been provided training on the difficult medical challenges, which a family with a child with CFS-ME and fibromyalgia experiences, this case would NEVER have made to the court system. The tireless efforts, financial and personnel resources used in the process of taking one very sick child away from his loving parents and from the safety of his own home, was at a considerable cost. From the use of the county attorney, paralegal services, social workers, foster parent payments, court costs and much more, we can clearly state that this was a waste of tax-payer’s money.

    While we all wish Ryan to recoup emotionally from this trauma soon, it does not escape us that the anniversary of Ryan’s reunion with his family is quickly approaching on Thanksgiving. We know that this will be a happy occasion. We are grateful to the Whittemore Peterson Institute for including Ryan on their XMRV research studies and providing Ryan and his family with a life-line, which includes potential medical treatment.

    Unfortunately there is still much to be done in Buncombe County regarding NeuroEndocrineImmune Disorders medical challenges and how much suffering it brings to families and patients afflicted with these illnesses. We are yet to see a change towards the right direction by officials addressing these challenges. We believe that the time is now, to prevent another family from going through the same emotional, physical and financial traumas the Baldwin’s experienced. Let’s get it done!

    Marly Silverman, Founder, P.A.N.D.O.R.A.
    http://www.pandoranet.info
    1Voice, 1Community, 1Cause™

  10. patfero

    Ms. Holder,

    Thank you for covering this story. The sequence and nature of events that led DSS to place Ryan in foster care are strange and confusing. I wonder about probable cause…and the extreme measures taken to keep Ryan away from his parents.

    I have followed this since 2004, long before Ryan had a CFS dx. Once Ryan was given that diagnosis, I knew that his care would be compromised. It was. However, I could not imagine circumstances where the mom would be charged and Ryan taken away. it happened.

    I want readers to know that inappropriate treatment of patients with CFS is happening all over the country. Misdiagnosis is rampant. Given the wrong treatment drugs, patients become horribly ill. Is there room, just a little bit of room to believe the patient? In Ryan’s case, he was a top notch student until he became ill. One simply needs to look at a child’s school records to see the rapid downward spiral from an A student to a student who could barely attend school.

    In adults, one has to look at previous functioning levels. A teacher, a doctor, a plant manager…anyone with a career..is not going to make more money by being on disability rolls. A person working two jobs to make ends meet is not going to quit and wait 6 mo to apply for a meager disability that may take up to two years to kick in.

    One last thing. XMRV finding is a finding of biological illness. We may not know what it is for year. We may not understand the illnesses it may bring to people. However, a CFS patient cannot think his or her way into having XMRV or an MLV.

    In the meantime, it is far wiser to use caution when thinking about CFS. I have had this for 30 years. People endure hostility, bias, slander and mistreatment. They lose their families, jobs, and self esteem. This so complicates the illness….feeling useless and staring at 4 walls day after day. CAUTION and compassion please….

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