The Board considered getting involved in the Ryan Baldwin case back in April 2009. The Board affirmed the following policy, and response to the request to participate in Baldwin's case:
The CFIDS Association has long maintained a policy of not becoming involved in individual CFS patients’ medical care or legal proceedings, even when requested to do so. In some cases this policy is very difficult to uphold due to the urgent nature of the hardship being suffered; however, the Association lacks the medical or legal expertise to ascertain, review and evaluate the circumstances and records that would be required to make sound judgments about which situations merit investment of scarce resources. Proceeding without appropriate medical or legal guidance would create a precedent for action that could threaten the Association’s ability to serve the community as a whole through the research and federal policy programs that are consistent with its mission.
I appreciate you answering this Jspotila. Thank you.
I have to wonder, if it was your kid or their kid (someone from the CAA) would you all feel the same way about the only prominent CFS patient group in the U.S.A. not taking a stand in such a case? I think I'd feel very let down and unsupported.
This is happening right in our own country, not in the UK. Therefore, if not the CAA, then who?
If it was my best friend's child who was involved in this, I would want anyone and everyone to help. Unfortunately, the Association does not have the resources to do everything that needs to be done. It's impossible. And the Board has the legal and ethical obligation to set the priorities for allocating resources, and safeguarding the Association's ability to continue its work. Involvement in individual medical or legal cases is beyond our capacity. If it were my best friend's child, I would be disappointed by that. But I hope that I would also understand why the policy exists and that it is applied equally to all cases.
I think this is the kind of issue the CAA should involve itself in. If nothing else they could at least set up a page that explains what's happening to the Baldwins as it happens and set up a template for people to write their govt. leaders about it.
The Baldwins aren't the only family this is happening to in the U.S. They're the most well-known though and their situation should be a rallying call to all who care about how people with CFS are mistreated in this country and to the plight of all children who are being ripped out of their homes because either they're ill with CFS or their parents are.
That's great that the Mountain Express wrote this up. I remembered hearing about this case a few months ago and sent in a card for the boy. It's horibble what he and his family endured but this is exactly the type of press CFS needs; children in distress attract attention unfortunately.
It was also quite timely that at the 10/2009 CFSAC meeting, Dr. David Bell gave his talk about CFIDS and Munchausen's and the difference between the two. I think he was trying to get people to understand the issues on a federal level.
Ryan Baldwin - U.S. Child with CFIDS returned to parents (Taken by DSS)
Ryan Baldwin has been returned to his parents in Asheville, North Carolina. Ryan was removed from his loving and supportive parents by Buncombe County Department of Social Services and placed into foster homes several hours away from his parents. This is a horrible story that should never have happened but did. Ryan's parents and grandparents have taken Ryan all over the US seeking medical care for Ryan - he has CFIDS and other disorders. But that did not stop BUNCOMBE COUNTY DEPARTMENT OF SOCIAL SERVICES from deciding that Ryan was in "danger" from an essentially, "over-protective mother". Links are below and the article is also below. This is what happens in the US to children with CFIDS.
Home for good? Black Mountain couple regains custody of son
by Nelda Holder in Vol. 16 / Iss. 31 on 02/24/2010 .
Click here http://www.mountainx.com/xpressfiles/dss_case_involving_ryan_baldwin to go to Xpress Files and read an interview with Angela Pittman of the Buncombe County Department of Social Services.The interview was given with the express stipulation that individual DSS cases could not be discussed.
[Freelance reporter Nelda Holder can be reached at firstname.lastname@example.org.] - NOTE: Ms. Holder did an outstanding job during the entire time Ryan and his parents and grandparents were battling the Buncombe County DSS system.
(This is my first post and have been reading the forum daily since the news about XMRV broke).
I was told that my daughter (who was about 12 years old at the time in 1990) needed a neurological workup and that the only beds available were in a psych ward, and I was asked to sign papers for her to be admitted. Once they had her, they kept her for about a month. I was allowed to visit once a week for an hour each visit. I was so distraught. It was many years later when I requested a complete copy of her medical record that I found out that we were being 'investigated' for munchhausen by proxy. The record showed that my daughter had been tested for and was found free of any physical, emotional and psychological abuse. It was a devastating situation to live through.
Do we have any statistics on how many children there are with CFIDS/ME? It seems to me there should be a special world wide organization setup to help them, even if it's just to lend support and educational materials about the illness. And certainly to stop government agencies from coming in and taking these kids and doing a thousand times more harm.
I can't even imagine being a healthy parent of a child who has CFIDS/ME and being terrified that someone would take my sick child away, not give them the care they need, and make them worse. That's horrific, like we're living in the Witch Hunt times.
They all tried to make Lisa Baldwin look like an overprotective mother and difficult woman. She is neither. Lisa Baldwin is a mother bear protecting her cub. She is NOT difficult but of course that is such an easy tag to hit a smart woman with and they did. Lisa Baldwin did everything right for her child. I have enormous respect for Lisa and all that she did to get her child back and ensure that Ryan had the very best of medical care regardless of where they had to go and how much it cost. Ryan is a lucky young man to have a mother like Lisa.
Lisa Baldwin is an amazing woman and gets my vote for "Mother of the Decade".
There is nothing overprotective about trying to stop quacks using inappropriate psychological treatments for a physical disease. The is nothing overprotective in stopping the authorities from taking your child away.