Saturday, March 28, 2009

Ryan Baldwin - Child in Crisis - UPDATED

Pat Fero writes:
My apologies for the mass e one was spared a copy of this
letter. If you are unable to read for whatever reason, illness,
schedule, and so on, please toss. You may have received double copies
or be a person who is not involved with ME and CFS at all. My e mail
program is out of sorry.

I have a word doc of this e mail. If you would like that, please
let me know.

Hello from Pat Fero, Wisconsin CFS Association:

After our son died on July 4, 2005, I diverted any calls about CFS in
children because I thought that it would be cruel to parents of a kid
with CFS to hear about my experiences. The Baldwin family, Black
Mountain, NC called me late that summer to continue the communication
we had had since 2004. Lisa listened to me describe what happened to
Casey. I was careful to say that the chances of her son having
similar problems would be next to nothing.

Thus, since the fall of 2005, I have talked with Lisa many times.
When problems with Ryan's medical care began to mount, Lisa scanned
MD documents, letters to organizations, politicians, and finally
court documents. I have a file of these documents.

At this time Ryan is in a foster home, the parents charged with
medical abuse and "Fictitious disorder by Proxy." The situation is
entirely unbelievable. Lisa has expanded her website to include the
latest details.

Since I am not able to provide anything more, maybe the ME and CFS
community can help. Hence, I summarized a bit of Ryan's story from
Lisa's commentary.

A few things to keep in mind before you read the paragraphs below.
1. Ryan was determined to be medically disabled by Social Security
Administration in 2004 and again in 2008. Ryan did not draw
disability until 2009 because the Baldwin's income disqualified him.
With a reduction in income, they reapplied in 2008 and Ryan's
disability was granted. After receiving his second SSI disability
check this year, Ryan was removed to foster care.

I am in contact with the grandfather who believes that Ryan's
Medicare check now going to the county and his special needs status
that may make him eligible for federal money, is a reason to keep the
child in foster care. I cannot confirm this, and have no evidence of
this, but other such schemes to increase Health and Human Services
money have been investigated in Massachusetts, California, and Texas.

2. The parents have an attorney who is being paid for by a friend.
The family has a NC advocate and it took Lisa well over a year to
find an atty who would take the case. The first hearing was in
January and at that time, Ryan completed a psychiatric evaluation. I
have a copy. No problems were found. The second hearing was in early
February and a third will be in April. The medical reviewer for this
case is a Chapel Hill Pediatrician who gives seminars on child abuse
for CME credit. I question her objectivity about CFS and the obvious
inability to look at the entire medical record.

3. I think this is about the CFS diagnosis and the ignorance of the
medical community. It is also about the family's insistence on
quality care for the child, which means they have filed complaints on
local and state offices for a number of years. The result is to blame
the mother, a common thought with CFS and other unexplained illness
in children. This case is out of control.

Thank you in advance for any steps you might take to help. I so
apologize for the length of this, but I let my letter sit for a week
and seem to be unable to keep it short. I have years of supporting
documentation and I am willing to answer any questions and/or release
documents once I have the approval of the family.


Parent's and Grandparent's Legal Rights Defense Fund
Help Free Our Son Ryan Michael Baldwin

Please Help. We feel that a problem like this needs to involve our
local community - as without it we lose ourselves.

Please Call or fax NC Governor Bev Perdue and ask her to free
(medically disabled) Ryan Baldwin from DSS abuse. Please ask Governor
Perdue to investigate!

919-733-4240 or fax 919-733-2120.

Please donate to Baldwin Legal Defense Fund at:
Lisa and Rodney Baldwin
SunTrust Bank
200 Hwy 9
Black Mountain,
NC 28711
(828) 669-3568

Please contact any reliable media sources and we will talk with them.
We have all the records and nothing to hide.

Ryan is medically disabled and carries a diagnosis of CFS (2004),
severe autonomic dysfunction (2005), a progressive heart conduction
system block (LBBB) with right axis deviation (2008), and
Mitochondrial disease (2008). He has been to Johns Hopkins (2004),
Mayo Clinic (2005), Cleveland Clinic (2006), and was on referral to
UNC Chapel Hill for Mitochondrial disease (2008) when Buncombe County
NC Department of social services (DSS) interfered with all his
medical care. Before and during these years, we have tried to work
with local Primary Care MD's and local specialists.

Ryan was taken from us on 1/23/2009. He was first placed with his
grandparents. That was suspended after 2 weeks because DSS suspected
that they bought into our "fictitious belief" that Ryan is sick and
this made the situation worse for the child. Ryan was taken to a
medical foster care home for 4 weeks and is now 3 hours away from us
in another foster care where we have no access.

Before becoming disabled Ryan was an A student and extremely
educationally gifted. He played on a traveling soccer club at age 10.
After symptoms became severe, Ryan was home schooled at Keystone
National High School and we have paid out of pocket for his
educational program for the past 3 years. He was on target to
graduate next year after completing just three more courses.

Now, in foster care, Ryan receives no educational assistance (Telex
recorder, scribe, help with organizing) with his Keystone program.
DSS states that foster care does not do home schooling.

Buncombe County DSS is now asking Ryan to prove his disabilities to
them. He is held medical hostage at a Warrensville, NC foster home
and is denied appropriate medical care. The wheelchair(s) he uses
daily to conserve energy-- are being kept from him. His old power
wheelchair is in Weaverville, NC at Grandpa's house waiting for
pickup and his manual chair is in the back of a DSS Foster Care
placement Social Worker's car after she forgot to unload it. If Ryan
wanted to go for a walk, he would have no assistance. Furthermore,
Ryan is in a basement bedroom and must climb stairs to get meals or
communicate by phone. There is no wheelchair access.

Of note, his wheelchair attorney fought for Ryan's chair, a power
$22,000 wheelchair for close to 1 year. His new wheelchair deemed
medically necessary by Blue Cross Blue Shield, NC is not available to
him. Ryan has used a power and manual wheelchair for 5 years and
Cigna approved both in 2004. Clearly, he needs these medical aids.

This abuse to Ryan is ongoing while he proves his medical disability
to an uniformed and possibly biased foster parent. We have no idea
what information was provided to the placement parents. The
communication link we had was though Grandpa and that, too, is now
limited because after talking to Ryan numerous times, Grandpa e
mailed the court appointed guardian to ask for help and to complain
about the lack of medical care. Ryan is not holding ground. He is
relapsing. The guardian, in turn, informed the court and now all
calls are put on speakerphone. Grandpa is not allowed to ask about
medical issues. *

Ryan has not seen any friends or family in 7 weeks. His advocates
have not been allowed contact. Ryan misses his dog, his friends, and
us. Ryan has loving family who can accommodate his disabilities. Why
is he not with us?

We deserve better treatment as Buncombe County residents and US
citizens. Our children must not be subjected to such abuse. Please
help our plight and return Ryan Baldwin.


**In my last contact with the grandfather, he told me that any mail
Ryan receives must go to the guardian. I had planned to send the
kid a fruit basket IF I could get the address. Grandpa tells me that
Ryan's diet is limited and nutritional needs are not being met. In
addition, Ryan's phone access, aside from the speakerphone deal, is
limited. The Baldwin's feel like Ryan is in a holding tank. What can
we do?

In my letter about Ryan Baldwin posted 03/28/09, I left out contact information. So here it is: Lisa Baldwin (parent) 828-275-8823 or email address on website at Jerry Rice - local advocate 828-275-7607 home 828-667-3022 advocate phone #'s please leave a message and time to get back in touch.
Pat Fero - advocate
608 837 9540

Wednesday, March 25, 2009

Reno Conference Overview by Dr. Komaroff posted

From CFIDS Assoc. Facebook-
Two of the presentations from the IACFS/ME Research & Clinical conference
held earlier this month are now available for (free) demo at .

Conference overview by Anthony Komaroff, MD-

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The danger of doctors

I've had patients who met post-traumatic stress disorder criteria... where their trauma was their interaction with their physician around this illness. They came to a doctor with Chronic Fatigue Syndrome; they left the doctor with PTSD.
                                                               -- Nancy Klimas, MD
In fact, 77% of CFS patients report negative experiences with health care providers, and 66% believe the treatment they received made them worse.  As a result, many patients have lost faith in the medical profession and have simply stopped seeking any treatment, considering it a waste of time, money and their limited energy to attend an appointment where they will likely again be verbally abused as being lazy or crazy rather than physically ill.
This can result in other health problems going undiagnosed or untreated, bringing with it the risk of premature death from something that could have been treated if not for (a) the patient's well-founded distrust of doctors, or (b) the proclivity of doctors to attribute any new symptom to either the CFS or the patient's over-active imagination.
I've been told that I'll never work full-time again because of the treatment I received; I was allowed to deteriorate too far while the doctors arrogantly ignored my attempts to tell them what treatment would help me.  I begged, I pleaded, I explained, and not only did I not get the pills that would have gotten me back to work, I was verbally abused for "not wanting to get well because then you'll have to go back to work".  If I didn't want to go back to work, then why on earth would I repeatedly be asking for prescriptions????
Despite a family history that should have sent me directly to screening for the cause of one particularly troublesome symptom, I had to wait several years until finally a new doctor was willing to order that test; when I got there, the specialist asked "what took you so long?" and when I told him the doctors refused to order the test because they were convinced all my symptoms were part of the CFS and couldn't be from any other disease, he muttered "I hope I find something, so you can sue them for all they're worth".
It's the doctors like that who have prevented me from losing faith in Modern Medical Science entirely, though I will admit that I don't have the blind faith some people have.  I don't believe doctors are infallible gods, and if they want to know why, they can just read through my medical records and see all the medical errors that have resulted in my health being permanently damaged.  There has to be some reason why, after the 1987-88 relapse that had even stronger symptoms, I was back to work full-time in a few months, but this relapse, which started off much milder, resulted in years off work, and that reason is very simply explained as the result of the 1988 doctor knowing what needs to be fixed, and the 2000-2003 doctors not having a clue, and not wanting to listen to what my former specialist had taught me.
A chiropractor, doing his standard set of first-appointment x-rays found three fractured vertebrae that explained a lot of the pain that previous doctors had been trying to tell me was a figment of my imagination, and refusing to treat.  Unfortunately, a pain management specialist tells me that untreated pain can cause structural changes to your nerves in just a matter of hours, and therefore, the years of pain I endured while doctors kept telling me to take Advil even after I said handsful of Advil didn't do a thing except give me an ulcer, have resulted in pain that will last the rest of my life.  Had anyone taken x-rays sooner, they would have discovered there was a valid reason for my constant pain; instead, they ascribed it to a vivid imagination, or "just another symptom of CFS", and thus caused me a bigger problem than I had originally.
Other patients have also died or nearly died from the same attitudes about CFS.  Why should we not suffer from extreme distrust of the medical profession when we see such neglect, incompetence and outright malpractice all around us?

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Tuesday, March 24, 2009

Nancy Klimas Interview

Source: Miami Herald
Date:   March 24, 2009
Author: Gigi Lehman <>

Seeking answers for chronic fatigue syndrome
Chronic Fatigue Syndrome expert discusses name, symptoms
Dr. Nancy Klimas of the University of Miami Miller School of Medicine is a
world-renowned expert in Chronic Fatigue Syndrome and president of the
International Association for CFS/ME.

Q: Has there been any success in getting Chronic Fatigue Syndrome renamed,
and if so, what is the new term?
A: We are still using the name even though we all acknowledge it's a
perfectly horrid name, because it's got name recognition now and it's kind of
hard to shift. While in Europe it's often called myalgic encephalomyelopathy,
which certainly would be more persuasive that this is a serious illness with
very debilitating consequences. With Chronic Fatigue Syndrome, 'Well, I have
fatigue too' is the usual answer.

Q: What are the symptoms of CFS?
A: The big one would be post-exertional relapse. There aren't many illnesses
that get worse when you exercise... There are eight criteria, and a patient
has to have four: post-exertional malaise, unrefreshing sleep, impaired
memory or concentration, muscle pain, multi-joint pain, headache, tender
lymph nodes and sore throat. They have to be more than six months in duration
for adults.

Q: Tell me more about your research at UM.
A: One of the things that's been a problem... is that we don't have a blood
test that doctors can order to say 'Aha! You have Chronic Fatigue Syndrome.'
We have a really interesting study where we are putting patients on a bike
and exercising them very moderately and then following with blood tests to
see what's causing the relapse.
We're doing genomic studies where we look at patients before, during and
after exercising and seeing what genes got turned on or off by the exercise
and then compare them to healthy [participants].
We're also doing a lot of research to see if there's a difference between
Gulf War Illness and Chronic Fatigue Syndrome.

Q: Does the fact that most CFS patients are women affect how physicians treat
the disease? (It is sometimes treated as a psychiatric disorder.)
A: I would have to say yes. I've had patients who met post-traumatic stress disorder criteria... where their trauma was their interaction with their physician around this illness. They came to a doctor with Chronic Fatigue Syndrome; they left the doctor with PTSD.
(c) 2009 Miami Herald Media Co.

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Monday, March 23, 2009

Doctors and Lawsuits

According to Nancy Gibbs in this week's Time magazine, "Most people file lawsuits out of anger, not greed.  In states that passed 'apology laws' that let doctors express regret when things go badly without having it thrown back at them in court, some hospitals have seen malpractice suits drop by half."
I'll agree.  I was very angry that my doctors refused to even acknowledge that they had no idea what to do for me.  I was very angry that, despite my telling them from the very first appointment what my diagnosis was and what prescriptions would get me back to work, they persisted in saying things, both to my face and to Disability investigators, about my "not wanting to get well because then you'll have to go back to work", completely ignoring that I had been trying to work throughout, and had been telling them what had gotten me back to work in the past.
Had the doctors ever said anything that indicated they were sorry for ruining my health so I'll never work full-time again, or acted like they were willing to learn from their mistakes so they would not do this to another patient, I probably would have negotiated a settlement in which they paid very little money (likely just a refund of my medical bills), but agreed to sign letters to Disability stating that I was, in fact, physically ill and unable to work, and therefore, eligible for Disability benefits.
But, the only way I could get to talk to them was to file a lawsuit and summon all of them for depositions.  Now they couldn't interrupt, they had to listen to what I said, they couldn't leave the room when we got onto uncomfortable ground.  I made sure to ask detailed (educational) questions about whether they had read certain studies showing that CFS patients do have objective physical findings, can't exercise, aren't helped by anti-depressants, etc.
Yes, that lawsuit cost me several thousand dollars and many hours of paperwork, and didn't net me a dime, but the next time they deal with a CFS patient, maybe they'll remember hearing something that it's not all in your head, and give the patient the right treatment and not press them to get their head examined and exercise till they're permanently impaired.  And that was all I really hoped for, was to get their attention long enough to educate them, since they weren't willing to stop lecturing me during appointments long enough for me to lecture them.
I'm still angry that I never got anything that sounded like an apology, and, in fact, was accused that "nothing you said made sense".  But, the good news is, since there was no settlement, there was no confidentiality agreement, so I am free to talk about the problem as much as I like, and to publicly name names, and there's not a damn thing they can do about it.  They were so excited to get off the hook on a legal technicality that they never considered the downside of not offering me a few dollars to sign an agreement that would have permanently hidden their sins.


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Sunday, March 22, 2009

More on the Reno Conference

Coming Home: Dr. Peterson at the IACFS/ME Conference
by cort on March 21, 2009

Reno (the Littlest Big City in the World') is not your typical conference
destination but it was hard to imagine a better spot for the 9th
International IACFS/ME meeting. Much water has passed under the bridge since
the plight of those Incline village residents made headlines across the
country thrust this disease back out into the open. At the time Dr. Peterson
was living the good life with a small practice in a resort town in Sierra
Nevada ski country.

Deluged with ill patients that summer of 1984 his life would change forever.
The CDC would come and go, 'yuppie flu' would become a byname for this
disorder , another unfortunate name would be coined, a national patient
organization would rise, scandals would come and go…and many of the patients
would remain, except for a few dedicated physicians and caretakers, for the
most part ignored by the medical profession.

The emergence of the Whittemore-Peterson Neuro-immune Institute is the
clearest example that that problem is slowly but surely changing. What a
remarkable achievement it is. Who would have ever thought that just over the
hill from that small resort town the first facility dedicated to the study
of this disease would emerge 25 years later? Or that those poor,
misunderstood patients would several decades later begin to lay a foundation
for a new interpretation of this disease?

Despite all that bad things that have happened there is unalloyed good one.
The doctor who struggled in the hinterlands for decades finally is getting
the support he wanted and needed. Thanks to work of one couple with a very
ill daughter this disease is, at least in this small corner of the US,
getting the recognition it deserves.

Many of the ill patients are still ill but their blood has provided the
clues that have enabled the institute to produce the first laboratory
derived subset in this disease.

In some ways the ME/CFS community came home after 25 years at the 9th
International Congress and found it a much better place than it would have
ever, given it's history, imagined.

Dr. Peterson started the conference off with a stirring address and perhaps
the best news of the entire conference; that the money in the medical world
is starting to get interested in this disease. We've learned the bitter
truth that suffering and debility, even on a large scale, gives you very
little punch in our medical system. The profit motive, on the other hand, can move mountains and Dr. Peterson brought very welcome news that medical companies are beginning to understand that.

The value of a diagnostic test alone for this disease is estimated to be $120,000,000 a year (picture millions of fatigued people getting tested every year) and the market potential of a drug is projected at $250,000,000 a year. Some diseases are too rare to ever get substantial funding but chronic fatigue syndrome (ME/CFS) is simply too misunderstood – something that can and will be rectified. Once the medical establishment sees a clear understanding of this disease develop – and a chance to make some money – it's possible they will beat a path to our door.

Still Dr. Peterson, never a shrinking violet on the issue of government 'non-involvment', lambasted the government for spending so little ($4,000,000/year-NIH) – barely enough for postage he jeered – for a disease that costs not only it's sufferers so much but the US economy as much as $24 billion dollars a year.

As Dr. Peterson ran through some research highlights he signaled out the
repeat exercise test regimen created by the Pacific Fatigue Lab.
Interestingly he stated that the search for that holy grail - a single
biomarker is over; this is a disease of subsets (or different diseases) some
of which the Whittemore Peterson Institute asserts can be differentiated
right now. On the theme of making a difference he noted the need for the
community to come together and unite over a single name (ME/CFS, CFS/ME).

The Whittemore Peterson Neuro-Immune Institute - The heart of his talk was
about the possibilities engendered by the Institute. Clearly speaking from
experience he stated that ME/CFS researchers are being aided by technology
that they couldn't even have dreamed of as little as three years ago.

As a consequence the medicine of tomorrow will differ greatly from that we
see today. The old paradigm; if you have x disease you'll get Y drug is
ending. Instead physicians will use gene expression and genomic tests to
target specific drugs and treatments for specific patients. Uncovering the
molecular basis of disease will lead to new and unexpected treatments -
something we will later see is already occurring to some degree in ME/CFS.

This molecular approach is already threatening to re-align research
priorities. Not so long after the NIH and CDC pulled the plug on pathogen
testing WPI researchers began doing exhaustive pathogen and immune tests
developed by the National Cancer Institute.
Demonstrating it's tough to keep
a bad virus down the herpes viruses immediately popped out in the Incline
Village cohort patients while cold viruses did in the controls.

What a change in priorities that finding could have. While CDC researchers
pinned the inflammation they found at least in part on obesity (what one
researcher jokingly called the 'fat Wichita subset') and struggled over the
question whether ME/CFS was really metabolic syndrome in disguise, the WPI
purports it is, at least in one subset, the work of herpesviruses.

Coming Home – the Patient Reception

All the doctors that have stuck with us have a personal connection to this
disease. At times, though, one's had the feeling that that connection may be
a bit closer to the surface with Dr. Peterson and in some ways that wouldn't
be surprising. years ago. The modern era of chronic fatigue syndrome or ME
or ME/CFS or whatever you want to call it really began at his and Dr.
Cheney's office in Incline Village 25 years ago. Dr. Cheney moved on but Dr.
Peterson stayed and over two decades later he's still looking after those

In a sense the ME/CFS community came home during the last IACFS conference
and all the connections – the 25 year anniversary, Incline Village next
door, the emergence of the WPI just up the road– appeared to hit Dr.
Peterson  as he got up to speak at the Patient Reception.   It's been quite
a personal and professional journey for Dr. Peterson  he started to speak
and  couldn't get the words out.

Dr. Peterson had reason to be moved.  The ME/CFS community is beset with
enormous challenges but at least in this corner of the world the future
appears to be bright.  The WPI has some big plans on its plate. As the
conference proceeds we'll get some idea of what they are.


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