Statement from P.A.N.D.O.R.A.: Ryan Baldwin case is an ominous wake-up call

Statement from P.A.N.D.O.R.A.: Ryan Baldwin case is an ominous wake-up call

Shortlink: http://wp.me/p5foE-2OW

Our very best wishes to Ryan and his family.

Related material:

Baldwin Family website: http://www.bringingryanhome.com/ 

Media:

Mountain Express

Home for good?
Black Mountain couple regains custody of son
by Nelda Holder in Vol. 16 / Iss. 31 on 02/24/2010

Statement from P.A.N.D.O.R.A., Inc.

FOR IMMEDIATE RELEASE

26 February 2010

By Marly Silverman, Founder & President

The case of Ryan Baldwin is an ominous wake-up call of the need for awareness of Pediatric Chronic Fatigue Syndrome

Nelda Holder’s article on young Ryan Baldwin and his family (“Home for good? Black Mountain couple regains custody of son” Mountain Express 2/24/2010) shines a long-anticipated and much needed spotlight on more research, proper diagnosis and treatment options for children and young adults under the age of 18 stricken with Chronic Fatigue Syndrome (CFS).

The sad case of Ryan Baldwin and his family underscores the dangerous lack of understanding as to the serious nature and special care of children with Chronic Fatigue Syndrome, as well as current objective medical research on the illness.

Clearly, as was the case of the Baldwins, government officials need better understanding and awareness of the complexities of this illness that strikes 1 to 4 million Americans including children, teenagers, young adults, adults, and the elderly, according to the Center for Disease Control and Prevention (CDC).”

CFS community advocates for Ryan

In 2009, Pat Fero, director of the Wisconsin CFS-ME association and Jerry Rice, the Baldwin family’s local advocate in their home in Buncombe County, North Carolina brought Ryan’s situation to our attention. County officials had removed Ryan from his family, alleging that his parents have not provided him with “mental health care and access to a pediatrician.”

Along with 23 other patient advocacy non-profit organizations, P.A.N.D.O.R.A. mobilized an awareness campaign that included letters and petitions to North Carolina Governor Bev Perdue, NC State Legislators and NC Federal legislators on behalf of then 16-year-old CFS patient Ryan and his family.

We were elated when Ryan was finally reunited with his family. We were even more excited when Lisa Baldwin, Ryan’s mother, joined P.A.N.D.O.R.A. early this year to help with creating awareness of the issues that surround families with children with Chronic Fatigue Syndrome so that no other family will have to go through “the hell” that the Baldwin family did.”

Pediatric Chronic Fatigue Syndrome Conference Committee Forming

To further address the need for better understanding and awareness of CFS in adolescents, P.A.N.D.O.R.A., a nationally recognized patient advocacy group which stands for Patient Alliance for Neuroendocrineimmune Disorders Organization for Research & Advocacy, Inc., is creating its first patient and physician CME committee to help plan a conference explicitly dealing with pediatric Chronic Fatigue Syndrome.

The Pediatric Chronic Fatigue Conference aims to provide the medical community and government authorities with the proper training and resources to launch important educational initiatives that will ensure that children with CFS and other chronic pain illnesses and their families will be treated with the respect and care that they deserve.

For additional information about the P.A.N.D.O.R.A. Pediatric Chronic Fatigue Syndrome conference committee, contact Marly Silverman at: contact@pandoranet.info .

About P.A.N.D.O.R.A., Inc- Patient Alliance for Neuroendocrineimmune Disorders Organization for Research & Advocacy P.A.N.D.O.R.A. was founded on July 1, 2002 by Marly C. Silverman, a Chronic Fatigue Syndrome and fibromyalgia patient. Our mission is to raise awareness of the plight of persons with chronic fatigue syndrome, fibromyalgia, Gulf War illness, multiple chemical sensitivities, environmental illnesses, and persistent Lyme disease and advocate on quality of life issues.

In 2008, P.A.N.D.O.R.A in partnership with the Lanford Foundation-Lifelyme, Inc. , established the NeuroEndocrineImmune (NEI) CenterT, a community, patient-driven grass roots project to be based in New Jersey. The NEI CenterT will be the first research center dedicated to understanding and treating chronic neuroendocrineimmune illnesses.

Walson Communications

www.walsonpr.com

TEL: 714-970-2268

Cell: 714-865-4147

Sunday Times: Question a doctor and lose your child

Accusations of MSbP (FII) against parents of children and young people with ME, the placing of children and young people on the “at risk” register, threats of child protection proceedings and in some cases, forcible removal of a child or young person from the home via court orders into hospital wards (sometimes on locked psychiatric wards or where parents are denied visiting rights) by social services, community paediatricians or paediatric consultants, in cases where a child’s diagnosis has been challenged by the family or where the family has rejected treatments such as CBT/GET or psychosocial management of their child’s illness have, equally disturbingly, been taking place for years within the ME patient community.

Sunday Times  |  06 September 2009

http://www.timesonline.co.uk/tol/life_and_style/health/article6823345.ece

Question a doctor and lose your child

Ashleigh Cave lost the use of her legs after a vaccination

“PARENTS are being threatened with having their children taken into care after questioning doctors’ diagnoses or objecting to their medical care.

“John Hemming, a Liberal Democrat MP, who campaigns to stop injustices in the family court, said: “Very often care proceedings are used as retaliation by local authorities against ‘uppity’ people who question the system.”

Cases are emerging across the UK.

“The mother of a 13-year-old girl who became partly paralysed after being given a cervical cancer vaccination says social workers have told her the child may be removed if she (the mother) continues to link her condition with the vaccination. “

Read full story here

John Hemming’s blog: http://johnhemming.blogspot.com/

Related information:

Panorama report  |  Sick and Tired  |  Mathew Hill  | 1999

Report and video clips: http://news.bbc.co.uk/1/hi/events/panorama/506549.stm

Click here for  BBC Transcript of Panorama “Sick and Tired” broadcast

—————–

From Page 22 of the “Gibson Report”, 2006

http://www.erythos.com/gibsonenquiry/Report.html

“3.3.4 Vaccination

“Vaccination is often blamed for unexplained outbreaks of illness and regularly appears in the media being accused of such. The Group found that there is no strong evidence to link CFS/ME to vaccination and it is unlikely to be a cause…”

Extract from unofficial transcript prepared from audio recording of the public meeting held by the “Gibson Inquiry” panel in London, 6 February 2007. Dr Ian Gibson has been a champion of the mass vaccination of young girls through the cervical cancer vaccine programme:

Extract picks up towards the end of the first half of the meeting:

Dr Charles Shepherd (Medical Advisor, ME Association) (CS): The second quibble is in 3.34 and what you said about vaccinations. I think your wording there is really going to cause people problems by saying that the Group found there is no strong evidence to link CFS/ME to vaccination and it is unlikely to be the cause. It is, I believe a cause or trigger factor in a significant minority of people with this – I’ve probably got more patients in the UK that anyone else with vaccine induced ME – these are anecdotal cases, OK – I think I’ve probably got about 200.

Dr Ian Gibson, (former MP for Norwich North) (IG): Well, we didn’t want to get into anecdotal things…

CS: I know…

[Gibson talks over CS: ??????????]

CS: …but if you looked at your experts who gave evidence – besides myself, Weir, Pinching, Byron Hyde – all who reported anecdotal cases of vaccinations…

IG: Of association with vaccination…

CS: Of association, and the CMO’s Report acknowledged…we actually managed to get in into the CMO’s Report…

IG: We have to be very careful we don’t say it’s the cause of something.

CS: Yeah, but I think you are over cautious, there, and you know, we’ve struggled to get these people industrial injury benefits and it really is a struggle and that statement is not going to be helpful…

Videocast: Chronic Fatigue Syndrome Advisory Committee Meeting (Day 1)

If you don’t support the Reeves/empirical definition/criteria for CFS sign the petition at: http://CFSdefinitionpetition.notlong.com

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Chronic Fatigue Syndrome Advisory Committee Meeting (Day 1)

The videocast of Day 1 of the CFSAC meeting which took place on 27 May, Washington DC, is now available.  You will need RealPlayer to view this videocast which is world accessible.

The broadcast covers the entire proceedings of Day 1 and is 06:57:55 long but you can dip in and out (Agenda below). Video and audio quality is generally good and there are simultaneous subtitles but no signing.

I will add the videocast for Day 2 of proceedings to this page when it becomes available.

Transcripts of testimonies from patients, carers and medical professionals will eventually be archived on a website and I will flag up the URL when this has been issued.

http://videocast.nih.gov/ 

http://videocast.nih.gov/PastEvents.asp

Chronic Fatigue Syndrome Advisory Committee Meeting (Day 1)

Wednesday, May 27, 2009

Wanda K. Jones, DrPH, Deputy Assistant Secretary for Health (Women’s Health), Office of Public Health and Science
Total Running Time: 06:57:55

Category: Advisory Boards

Agenda

http://www.hhs.gov/advcomcfs/meetings/agendas/cfsac090527_agenda.html

CFSAC Agenda – May 27-28, 2009
U.S. Department of Health and Human Services
CHRONIC FATIGUE SYNDROME ADVISORY COMMITTEE

Meeting
Wednesday, May 27, 2009
9:00 a.m. to 5:00 p.m.

Thursday, May 28, 2009
9:00 a.m. to 4:00 p.m.

Room 800, Hubert H. Humphrey Building
200 Independence Avenue, S.W.
Washington, D.C. 20201

Agenda

Wednesday, May 27, 2009

9:00 a.m.
Call to Order
Opening Remarks

Roll Call, Housekeeping
Dr. James Oleske
Chair, CFSAC

Dr. Wanda Jones
Designated Federal Official

9:15 a.m.
Agency Updates: HRSA, SSA, NIH, FDA
Ex Officio Representatives

10:00 a.m.
CDC Update
Research Program Strategic Plan
Public Meeting
Next Steps
Dr. Mike Miller
Ex-Officio

12:00 p.m.
Public Comment
Public

1:00 p.m.
Subcommittee Lunch
Subcommittee Members

2:30 p.m.
Subcommittee Reports

Quality of Life
Education
Research
Committee Discussion Committee Members

4:00 p.m.
Public Comment
Public

5:00 p.m.
Adjourn

Concerning Ryan Baldwin: Please send a card

Please send a card to Ryan

 

References:

Ryan Baldwin – Child in Crisis
Help ME Circle, 8 April 2009

Contact info Ryan Baldwin – Child in Crisis
Help ME Circle, 8 April 2009

Ryan Baldwin Letter
Help ME Circle, 8 April 2009
http://www.co-cure.org/Baldwin.pdf

HELP – Ryan Baldwin
Help ME Circle, 9 April 2009

 

By Pat Fero  |  30 April 2009

Hello,

Information about Ryan Baldwin, a 16 yr old North Carolina kid in foster care 90 days, has been posted on lists internationally. If you need background, please e mail me back or look in list archives.

The Baldwin family had 3 days in court this week. Here is a brief summary.

Dr. Paul Cheney testified on Monday, April 27. In his usual eloquent style, he was well prepared for questions, and went way beyond the court’s knowledge of CFS, POTS and the heart condition of this particular kid.

My understanding is that Dr. Cheney thought that Ryan should not be climbing stairs several times a day to eat or to go outside and that Ryan definitely needs his power wheel chair.

Tuesday, the Department of Social Services (DSS) called Lisa to the stand. She had prepared a timeline for years of medical issues, appointments, medications and so on, so she said she was able to stay on track with the questions.

That same day, the parents were sequestered with audio and video camera so they could watch Ryan testify. Lisa tells me that he faced the camera, was calm and answered the questions without a negative or hostile attitude.

Lisa tells me it appeared that their attorney fashioned questions after Dr. Cheney’s responses. Lisa told me over and over that said she and her husband, Rodney were so proud of their Ryan! They were allowed to see him for 15 minutes at the end of the day, but not allowed to ask him medical questions or anything about the foster home.

Wednesday, several doctors testified. The DSS social worker was on the stand in the afternoon. Lisa tells me that the social worker could not answer specifics on many questions, but Lisa’s atty produced the documents to help her remember.

Lisa thought that the Judge might make a decision yesterday. However, he called a recess, asked both attorneys into chambers, and when he came out, the court dismissed until MAY 18th.

17 – 18 more days with no information and no social contact is a long time for a 16 year old kid. It is not like he has TV or computer use even to complete school work. His grandfather did get him a short wave radio. Ryan told the court that he loves to fool with it.

As a community we understand isolation. Ryan does not get mail, so how about we all send him a “Thinking of you card” or “Cheers”, “Good Luck” something general like that. You could make a card from a cartoon or paste a picture, use a card you have, whatever you want. The cost is a stamp.

If you are not in US, you might sign several names onto a card and mail as one. I am thinking about how a teenage would feel should a bag of mail appear at the foster home which is fairly isolated in the mountains in North Carolina. It could be very fun for him. And a stamp from Belgium or Japan? Kids love that kind of thing.

I asked Lisa how Ryan gets mail. It all has to go through social services. Please, Please send a card to Ryan at the address listed below. Don’t forget to sign your name inside with the place where you live in case he loses the envelopes. My understanding is that no one is allowed to ask him how he is feeling physically or mentally. I have no  idea if the DSS will open mail.

LASTLY, please forward this note to any lists, friends, anywhere on the planet and feel free to shorten as you wish. The bottom line is to get a mail bag of cards to Ryan within the next week or so to help him know that he is not alone.

Thank you,

Pat Fero
Wisconsin