ME/CFS -Family’s Nightmarish Experience

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>>>>> Help ME Circle <<<<
>>>> 3 January 2011 <<<<
Editorship : j.van.roijen@chello.nl
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The story below reminds me of a UK Prof, who
created a terrible climate for ME patients all over
the world. (he also dictates the strategy of the CDC,
with the result (by formulating endless stretching
criteria), that the prevalence figures in the USA are
now the same as with the flawed Oxford standards.


In October 2008 The CFIDS Association of America
proudly announced on their website:

More than four million Americans have CFS,
according to studies conducted by researchers
at the Centers for Disease Control and
Prevention (CDC).

http://bit.ly/i7hNu9
(but the text has been changed now).


(Because of brainfog the name of this UK Prof has
slipped me at the moment).


What I remember is, that he is a member of the
supervisory board of a company named PRISMA.

This same company is being paid many millions of
pounds to supply *rehabilitation* programs (such as
CBT and GET) to the NHS for use on *CFS* patients.

He is also an officer of the insurance company
UNUM. Insurance companies save a huge amount
of money in payments if illnesses can be viewed as
mental and not physical.


Anyhow this Prof was involved in a case
where a severely ill, virtually paralysed young
boy with ME/CFS was subjected to horrific
psychiatric *treatment* including throwing
him into a swimming pool:

i.e swim or drown....





He couldn't swim......!




~jan van roijen





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http://bit.ly/dYoMA8


MOUNTAIN Xpress
Ssheville & Western North Carolina



The Beat: 2010's biggest hits



by Jake Frankel

on 01/02/2011


The Mountain Xpress website can often appear to be
a publication unto itself. In addition to showcasing
much of the content that’s published in our weekly
print edition, the online outlet offers a plethora of
exclusive breaking news, videos, reviews,
slideshows, podcasts, personals, community forums,
aggregated citizen reports and much more.


In 2010, eyes and ears tuned into that world like
never before, with Web visits up nearly 40 percent
over 2009. Here’s a look at some of the most visited
areas of Xpress’ online landscape.



1)

News: Social services,
social media and sustainability


The news story garnering the most online views last
year was *Local Family Feels Vindicated by
Breakthrough Research.* [http://bit.ly/eyZFHR].

The article, written by Xpress contributor Nelda
Holder, was the third in a series of stories tracking a
Black Mountain family’s nightmarish experience after
an unidentified source accused Lisa and Rodney
Baldwin of medically neglecting Ryan, their only
child.

This installment included an interview with Ryan
after he was diagnosed with XMRV, a rare
neuro-immune disease.



Recounting his time in the custody of
the Buncombe County Department of
Social Services, Ryan explained that
he:

*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. …

I definitely believe that changes need to be made
in how social workers handle these sorts of
situations.*





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jan van roijen: I left away the rest
of the other *most-viewed news stories*

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http://bit.ly/eyZFHR



Local family feels vindicated
by breakthrough research



by Nelda Holder

in Vol. 17 / Iss. 08 on 09/14/2010



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’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.



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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 [http://bit.ly/6nwGh5], 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.


Mountain Xpress:

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?


Ryan Baldwin:

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.


Mountain Xpress:

Do you have any suggestions concerning training or
education for social-service workers investigating
medical-neglect complaints in a situation like yours?


Ryan Baldwin:

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 under-
standing 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.


Mountain Xpress:

Is there anything else you'd like to say?


Ryan Baldwin:

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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for the many comments see: http://bit.ly/dYoMA8






~jvr










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