ME/CFS -Family’s Nightmarish Experience

[Guest guest]

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 el

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 and Rodney

Baldwin of medically neglecting , their only

child.

This installment included an interview with

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, 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.*

``````````

jan van roijen: I left away the rest

of the other *most-viewed news stories*

``````````

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 and Rodney Baldwin of medically

neglecting , 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 , who spent 10 months

in three separate foster placements.

The family was reunited last November.

````

The one-page letter dated Sept. 1,

2010, contained the following

statement:

*I wanted to inform you that your son '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 and your

family*.

The letter, addressed to Baldwin, was signed by

Judy Mikovits, director of research for the

Whittemore 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

enrolled for testing, explained. Getting the

positive test results, she said, has made them *more

optimistic that treatments will follow that will help

.*

*We have lived with '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.*

, 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

( your test results?

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.

( 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?

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?

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?

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@....

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