More on Ryan Baldwin

Hello to all of you,

I gathered any e mails I could find from a list being worked on 
informally for the Chronic Fatigue Syndrome Advisory Committee 
(CFSAC) a group that meets twice a year in Washington DC. I added 
those that I had in a database. At some point, all of you offered 
help for people with CFS and FM and perhaps ME.

PLEASE excuse the mass e mail, but I have no other way to communicate 
across the county about an urgent matter involving a kid in North 
Carolina who has now been in foster care for about 3 months. I do not 
want to attach any documents here, the letters a group of us have 
sent to the Governor of NC, any court documents or other important 
information because I expect about 50% of these e mails to bounce.

Once I determine the addresses that work, I can get back to you. The 
issue is two fold. When something important happens, a thing that may 
effect every single person with FM or CFS or ME, we have to find ways 
to communicate and this makes our community grow.  In this case it is 
about a child I have been following for 5 years. I never thought, 
never thought, that the parents would be accused of medical abuse 
when they have been adamant about their son's medical care.  However, 
once the child did get a CFS diagnosis, problems escalated and doors 
closed. We all know about this because we have lived though it. We 
find windows, but we are adults and may have learned how to manage. 
In this case, the kid is not only sick every day, but now sits in a 
foster home while the adults try to prove that mom and dad are guilty 
of "Factitious Disorder by Proxy."

WELL, as you might imagine, I have much to say about this and a lot 
of documentation, so right now I have said enough. Once I determine 
who really gets this e mail, I will narrow my search. 14 or more 
groups have signed onto a letter and even more people as individuals, 
so we are in the middle of a huge effort to inform people nationally.

If you know of a group in your area, would you please forward this e 
mail? Again, my apologies, if you get this e mail in error or find it 
twice in your in box.

Thanks for your time and I hope you are doing okay,

Pat Fero
WISCONSIN

 

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Response to Baroness Thornton

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      >>> Help ME Circle <<<<
>>>>    17 April 2009   <<<<
Editorship : j.van.roijen@chello.nl
mail scanned by Comodo I. Security
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References:
Countess of Mar slates NICE & Health Insurance
Industry; Help ME Circle, 6 April 2009; see:
http://bit.ly/UrDCZ
The Countess of Mar & Gognitive Behavioural
Therapy; Help ME Circle, 8 April 2009; see:
http://bit.ly/6XGQi


All *Help ME Circle*'s articles may be reposted, if
you leaf the heather intact.


~jan van roijen


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IN ANGER

Gurli Bagnall


"Plenty of people are still dying of diseases
which other people do not believe."
(Dr. M.N.C. Dukes  -  British Medical Journal)


This quotation came to mind when reading the open
letter written by Baroness Thornton to the Countess
of Mar on 2 April, 2009. That she felt the need to
continue presenting her argument after the debate in
the House of Lords in the form of an open letter, will
serve to remind many readers that when ill health
strikes, adult status is replaced with that of a minor.

An example of that is the request for assisted
voluntary euthanasia by a patient suffering
intolerable pain as part of a terminal illness. The
request in English speaking countries is rejected yet
owners of similarly ill animals in the same countries
could be prosecuted for cruelty if the pets were not
afforded a merciful release.

In these circumstances the opinions of the sick are
not called for and if given, are ignored. Doctors who
have no conscience about causing disease, disability
and death through "preventable medical error", adopt
an attitude of outrage as they state, "We're here to
save lives, not to take them."


In exercising their conscience votes, members of
parliament impose their personal fears and religious
beliefs upon the affected who understandably have
an entirely different point of view.

Similarly, the guidelines for the management of
Myalgic Encephalomyelitis (ME) as decided by NICE
are concerned with politics, not reality. That NICE
has the support of the medical profession in general,
the Judiciary, and certain members of parliament and
the House of Lords, including Baroness Thornton,
speaks for itself.


One would have hoped the authorities at this level
would take responsible action; would lift the edges
of the carpet to see what is hidden underneath;
would be concerned about the reasons for the
contention.

Instead, and as the Baroness has ably
demonstrated, there are many in authority who have
no experience or knowledge of ME; who do not have
the intellectual acumen or who simply cannot be
bothered to seek the answers. Adding to the dangers
for those who suffer the condition, are the conflicts
of interest amongst the law makers.



The following  comments made by Baroness
Thornton need special mention.



QUOTE:

"…it would be inappropriate for me to comment
on the quality of evidence that NICE used to
develop the guidelines as it is an independent
body."


CONCERN:

This statement highlights that the Baroness is aware
of the controversies in regard to the "evidence"
used, yet she chose to make this an exercise in
avoidance and contempt.

The quality of the evidence used by NICE and other
"independent" bodies has been the concern raised
too many times to be dismissed in this manner. If
not appropriate during this debate, when IS it
appropriate?



*****



QUOTE:

"It Is not helpful to differentiate between
biomedical and psychosocial treatment as, based
on the currently available clinical evidence,
patients are best served by a holistic approach."


CONCERNS:

1)   This is at odds with the first quotation. Here,
the Baroness has found it expedient to accept the
"quality of evidence" which NICE has acted upon.

If one is charitable, one must assume that this was
an instance where the Baroness considered it was
too much trouble to look for the truth.  However, it is
difficult to accept that she is unaware that clinical
evidence of physical disease is available in
abundance and has been presented to NICE and
other "independent bodies" time and again; and each
time, it has been ignored.

It  seems appropriate to remind the Baroness and
those she supports, that people have died and are
dying due to the lack of ethics which her letter so
clearly displays.

2)   To claim the NICE approach to management of
ME is holistic, is absurd.



*****


QUOTE:

"The guidelines recognises there is no one form of
treatment to suit every patient and it does not
force patients into treatments they do not want.
In fact, the guideline emphasises a collaborative
relationship between clinician and patient…"


CONCERN:

This is no doubt the reality for those who can afford
private, specialist  care. However, where illness
compromises the financial status to the point of
poverty, it is NOT.  A patient in this situation, takes
what is on offer or faces the very real possibility of
having his below-the-bread-line income removed.
The Baroness shows a remarkable lack of empathy.


*****


QUOTE:

"It goes so far as to say that healthcare
professionals should recognise that the person
with CFS/ME is in charge of the aims of the
treatment programme."


COMMENT:

The Baroness is no doubt skilled in many areas, but
expertise in the intricacies of entertaining does not
offer experience in THIS field. Her statement is so
out of touch it would be laughable if it were not so
tragic.


*****


THE MOST BREATHTAKING QUOTE OF ALL:

"CBT is a rehabilitative approach designed to offer
patients practical steps to help them manage their
physical symptoms. "


COMMENT:

The Collins Concise Dictionary defines the following
words:

a)  "convalesce" is to recover from illness, injury or
the after effects of a surgical procedure.

b)  To "recuperate" is to recover from illness or
exhaustion or financial losss.

c)  To rehabilitate is to help (a physically or mentally
disabled person or an ex-prisoner) to readapt to
society or a new job as by vocational guidance,
retraining or therapy;  to restore to former position
or rank; to restore the good reputation of.

An example of common usage as found in the
reference software of the Mac OS X computer, reads
as follows: "…such rehabilitative  techniques as
prisons without bars".


Within living memory, the common usage of
"rehabilitation" referred to criminals while
"convalescence" and "recuperation" referred to those
recovering from an illness or injury.  At what point
did disease become synonymous with criminality?
Certainly it demonstrates a change in the attitudes
to the sick and the dying by the medical profession
and other bodies of authority.

That which has not as yet changed, is this: be it
convalescence, recuperation or rehabilitation,
recovery has to occur first and be part and parcel
of the process.


Has the Baroness taken the process a step further?
Are her choice of words signalling another change in
attitude?  A change in which the patient goes
straight from onset of disease to the rehabilitative
approach; namely, CBT?

Are the "practical steps to help patients manage
their physical symptoms" another way of telling
seriously diseased and dying people to take up their
beds and walk? When can we expect CBT
"rehabilitative treatment"  to replace chemotherapy,
insulin, antibiotics, beta blockers etc ?

Is the message to the terminally ill who have had
voluntary euthanasia rejected:  "Stop malingering!
Get back to work!"?

Where did such philosophies come from, and what
sort of people embrace them?


Baroness Thornton's letter presents a typical
picture of the problems ME victims face. The
sufferers are at the mercy of authorities who are
out of touch, who have no sense of reality, who
have no conscience,  who have conflicts of
interest and who give every impression of
enjoying their monstrous actions.

The tone of the letter is coercive. The views of the
people who are affected are dismissed as irrelevant;
when it comes to their futures, they have no say. As
always, they are expected to bow down to the
opinions of those who have never endured a serious,
long-term illness in their lives and to submit to the
abuse of those in positions of privilege.  How
different it would be if the latter were struck down
en masse, with ME.


Who could be more deserving?





Gurli Bagnall  - Patients' Rights Campaigner
URSULA@xtra.co.nz

17 April, 2009

 

 

 

 

 

 

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