Story On the First Patient to Die from ME/CFS In UK

[PlateletGal]

This is such a tragedy.... my heart is breaking:

http://www.fightingfatigue.org/?p=5279

[lbald33]

http://www.mountainx.com/news/2010/091510local-family-feels-vindicated-by-breakthrough-research


Ryan Baldwin is XMRV positive -see article above-it just came out this week !

[PlateletGal]

Hi Everyone,

Here is an update on what is happening with Ryan Baldwin, the 16 year old with CFS/ME who was taken away from his parent's by Social Services !

Since we cannot post addresses here, please contact me via PM if you would like to send a card to Ryan and/or would like Pat Fero's e-mail address (she offered).

With permission to post from Pat Fero:




Hello,

Information about Ryan Baldwin, a 16 yr old NC 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 the first day. 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.

The second day, 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 the 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.

The third day, 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 FeroWisconsin

[lvfrogs]

I agree with you completely. I read the letter from PANDORA. It was good. I sent an email. I hope that they do correct this fast. It just makes me sick. I keep thinking about Ryan. Let me know, thanks.

[PlateletGal]

If I hear any updates about Ryan (and I will if there are because I have tons of CFS info e-mailed to me on the daily basis), I will certainly let you know.

The governor has received a letter from P.A.N.D.O.R.A (Patient Alliance for Neuroendocrine Immune Disorders) and I'm sure her office has had several phone calls. I know I called and explained that I was in another state, but had heard about this case and wanted to let them know how disabling CFS/ME is and this story is a tragedy. I also told the Governor's office that if they did not take immediate action to correct this tragedy, then to expert a huge scandal. They need to fix this situation and fast. You know this boy is not going to get any better without his family.  = (

[lvfrogs]

These stories are so sad and shoud not have happened at all. It absolutely ticks me off!! I will definitely be sending an email to the governor. I am so mad I can hardly speak/write. I have come up agains unbelieving doctors in my own journey (unbelieving friends and family too) and I know that it is so hard to get anyone to listen to you.
Thanks PlateletGal for taking the time to do this. You are such a caring person. I hope you keep us informed about Ryan in case we can't find out how. Thanks!

[kitonthemoon]

Hi, long time no see. Hope all are managing as well as he/she could.

I know Lynn very well (whose mum . Kay,  is being charged with 'attempted murder' as we speak).  Please pray for positive outcome for Kay Gilderdale, in UK.

There're many, many people died from ME/CFS.  If you like, check out National CFIDS Foundation's Memorial List.  

I also know a young man with ME/CFS died from Myocarditis (sp?) a direct result of having this illness.

Unfortuantely, it seems, our government is braodening the definition of ME/CFS which could make our suffering looks more like mental illness.  Sigh.

I agree, we need to unite our effort in ME/CFS Awareness.  Do what we can to educate the public and physicians.

Lots mush huggies,

[PlateletGal]

Hi catwoman64,

CFS can kill... thank goodness the majority of CFS patients can work full-time if they manage their disease. But for those 25% of people who are disabled with CFS and/or bedridden... they are at risk for either infections or heart problems. The percentage of CFS-related deaths is very small.

In Sophia's case, the coroner found evidence of CFS/ME in Sophia's spinal fluid and inflammatory changes along the nerve cell collections that are the gateways for all sensations going to the brain.

Allison Hunter was another victim of CFS/ME and also a victim of physicians disbelief. Here are the links to their tragic, but true stories:

http://www.ahmf.org/about.html --- Allison's story

http://www.investinme.org/Article-050%20Sophia%20Wilson%2001.htm --- Sophia's story

[catwoman64]

I HAVENT BEEN ABLE TO FIND OR READ ANYTHING ABOUT THE WOMAN DYING FROM ME AND CFS.  I KNOW ITS A SAD SITUATION BUT I WOULD LIKE TO READ ABOUT IT.  IF U COULD TELL ME HOW TO GET IT I WOULD APPRECIATE IT...THANKS SO MUCH.  HOPE U R FEELING OK AND TAKE CARE.
                                   HUGS, CATWOMAN

P.S.  I FIND ALOT OF YOUR READING INTERESTING ALONG WITH VABREEZE'S
                    KEEP IT COMING!

[PlateletGal]

Don't thank me... thank YOU. Where will the world be if we didn't have people such as yourself, who are willing to speak out against injustices ?

[kiddthekatt]

Thank you Plateletgal. I just sent them a long email. I even invited her to MH to check out our forum and maybe talk to some that are having a difficult time with this, It's time that we start emailing all of our representatives and start letting them know that we are tired of being treated so badly, an that it's time that we are listened to and not ignored. Thanks again for the links.

gentle hugs
Angel

[VaBreeze]

Thank you PlateletGal.

[PlateletGal]

Here is the link for Ryan Baldwin and a letter signed by many CFS experts:

http://www.vtcfids.org/ryanbaldwin.html

The Governor of North Carolina is Bev Perdue and her contact info is on the page. If you would like to e-mail her about this.... check out:  http://www.governor.state.nc.us/eTownhall/qa.aspx

Thank you for inquiring. We need to fight against this unjustice !!!

[kiddthekatt]

Could you send me the link also about Ryan?

[VaBreeze]

P.S.  I am glad that you posted this.  It is real...frightening, but it's the truth.  

[VaBreeze]

I remember that story also uk2.  That is another heartbreak and so very sad.  The mother spent every waking moment with her daughter only to watch her live in pain and agony without treatment.  

Yes, I would like more information on Ryan PlateletGal.  I pray that this story reaches the CDC here and all others who feel this is psychological; making others feel as if it is their fault they are sick or that they are malingering.  I can't begin to phantom what that young girl went through in that hospital....nor her relatives.  

[uk2]

Hi I am in the uk and heard of this it is traggic and i hope her death is not in vain i can not believe how awful that would be if that happened to me.

This week another story came to light a girl who had M.E at 14 lived with her mum by 32 her daughter was so fed up with her life she asked her mum to kill her and now her mum is being charged for manslaughter now, when will this end i think in America your attitude towards fibro and M.E is so much better do you know we dont even have a fibro clinic anywhere in the whole of England and i know of only one expert on the NHS in the UK but i could be wrong its so mentally draining to have this condition anyway and then on top of that not to be belived is beyond thinking.

sam

[PlateletGal]

P.S. ~ Please remember that this young woman died because she was put into a mental hospital because "doctors" didn't believe that her illness was real and therefore, she lacked appropriate treatment and care.

Let's speak out so this won't hopefully happen again. Although this was in the U.K., we still have a strong voice and many people in the U.K., including a Baroness are outraged over this terrible tragedy.

[PlateletGal]

Terrible, isn't it ? I debated whether posting this link or not... I certainly don't want to freak out our members, but on the other hand.... people need to know to take their illness seriously and this is why. For all of those who have CFS... we know this to be true. We know deep down inside how ill we are.

Another story that I may post a link to is about a boy in North Carolina. His name is Ryan Baldwin and he has a well documented case of CFS/ME. Unfortunately authorities removed him from his mother, claiming that she (or the family... I don't remember which) was making him ill ! If anyone would like more information on this... you can google or send me a PM. I've already called the Governor's office and spoke out on behalf of this poor boy.

[VaBreeze]

I cried.  How many have to die?  How many?  

There was that word again..."accountability"...I hope that this young woman will be remembered for the greatness of her spirit.  No one should have to go through what she endured.  I can't think of anything more inhumane.