Saturday, April 18, 2009

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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Friday, April 17, 2009

Response to Baroness Thornton

~~~~~~~~~~~~~~~~~~~~~~~
Send an Email for free membership
~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:
      >>> Help ME Circle <<<<
>>>>    17 April 2009   <<<<
Editorship : j.van.roijen@chello.nl
mail scanned by Comodo I. Security
~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:


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


````````




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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Thursday, April 16, 2009

Why don't your Friends help you?

I'm frequently asked why I don't get my friends to help me, and accused of having offended or overdone pleas for help to the point that they no longer want to deal with what's assumed to be my excessive neediness.  In fact, my alleged girlfriends haven't given me even one minute of assistance since I got sick; visiting the sick simply isn't at the top of their list of things to do.  I couldn't even get one to make a five-minute detour to bring me some soup from the Chinese restaurant.  She was "too busy"; that was the first and last request I ever made of her.
 
To explain the situation, and make it clear that the problem isn't only me and my personality, I'm going to borrow a few words from the recent rant of a hometown friend who also moved to California; he has a completely different personality than I do, so it's not "you're too demanding" or "you're too pushy" that's the problem, because he's a gentle soul who invited people to a party. 
 
And before you suggest "if he's such a good guy, why don't you ask him for help?", it's because this is a big state, and he's hundreds of miles away.  I would not ask him to drive the equivalent of Atlanta to Philadelphia every weekend, or even twice a month, to deal with my household chores that I cannot do myself. 
 
They ... swear on their mother, they will attend, that is until the Southern California phenomenon strikes and its name is "Something Better." ... "Something Better Came Along! Dude! Why should I have to lose out, I mean something better came up! If you were really my friend you'd understand!"
 
The Offender's point of view is of course the modern narcissistic one. ... It's not irresponsible of me as I am being very responsible for myself choosing the best for myself.
 
... Your work, your party and your friendship has no value unless you are the something better that weekend. Please be aware friends, as what ever happens in Southern California seems to eventually make its way across the globe to invade your hometown.
 
Unfortunately, even when I was healthy and offering up parties rather than chores, invariably the first question my female friends asked was whether there would be any dateable guys there.  If the male invitees were deemed too old or too poor or too blue-collar, forget it; they could find Something Better to do, somewhere more exclusive where they might meet that single doctor or lawyer who would let them quit their jobs to become pampered wives.  Never mind that my guests offered scintillating conversation and I promised gourmet food – these girls' only interest in life was finding Mr. Right, and just from hearing that Tom's already married, Dick's retired with a solid government pension, and Harry's in construction was enough to tell them that Mr. Right wasn't going to be at my party.  There would be better pickings elsewhere.
 
I've even noticed that phenomenon among hired cleaners.  I've had a couple of college-age girls come in, and the first question – sometimes before they even ask what chores I need done – is whether I have any college-age sons.  Once they learn that I don't, and my friends don't, and my neighbors don't, and all they're going to get out of cleaning my house is the $15 or $20 an hour they charge, I can forget about them ever remembering to come back a second time.  They've bought into the Cinderella notion that if they clean enough houses, they'll eventually find Prince Charming who will sweep them off their feet, out of the ashes, and live happily ever after.  Cleaning my house won't lead to that fairy tale ending, so I'm just a waste of time.  Oh, they'll promise to come back next Tuesday, but by next week, they're off in search of Something Better, a new client who does have a marriageable son, or better yet, a new client who is a rich single man.
 
Even when I hired a woman my own age, she was scheming on one of my male friends who popped in occasionally while she was here.  As soon as he took a job out of town, she stopped being diligent about the cleaning: she didn't need to impress me with her wifely skills.  Her reason for being here was made clear the day I talked to her about needing to clean properly – she stormed off, screaming over her shoulder "Brian would rather marry me than you!"  Aha!  She might have adult children, but she still had the same ulterior motive as the younger cleaners: to marry a man above her station.  Once he left town, cleaning my house no longer offered the Something Better she was looking for. 
The problem in getting people to help when you're sick has nothing to do with the person doing the asking and everything to do with the narcissism of the person being asked to help.  "What's in it for me?", and if the answer is only "a good feeling inside for helping the less fortunate", they'll go off in search of Something Better – something that offers cash or romance or more enjoyable entertainment.






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Wednesday, April 15, 2009

New Fibro Clinic in Illinois

Internationally Renowned Fibromyalgia Researcher Opens a Private Clinic in Illinois



ANAHEIM, Calif. (April 15, 2009)-The National Fibromyalgia Association
is pleased to share that Dr. Muhammad B. Yunus, a rheumatologist and
renowned fibromyalgia specialist, is opening a private clinic, Yunus
FibromyalgiaCare Center, in early May in Peoria, Illinois. His practice
will be dedicated to fibromyalgia and myofascial pain syndrome.



"Finding an understanding and knowledgeable doctor in the area of
fibromyalgia is an ongoing challenge for individuals affected by the
disorder," says Lynne Matallana, president of the National Fibromyalgia
Association. "We are excited that such a caring and experienced
physician will help to fill this great need."



Referred to as the "Father of Fibromyalgia," Dr. Yunus is a pioneer in
fibromyalgia research. An internationally-renowned researcher and
speaker, he has written a number of original publications, including
"Primary Fibromyalgia," a 1981 pivotal paper which helped introduce a
new perspective of the disorder to the medical community. This
publication included the results of his study that suggested the first
data-based criteria for FMS, which was widely used by researchers until
the American College of Rheumatology (ACR) criteria was published in
1990.



A board certified rheumatologist, Dr. Yunus has been involved in
fibromyalgia research from the beginning of his professional career. He
saw fibromyalgia patients at the University of Illinois College of
Medicine at Peoria, where he has been a professor of medicine for more
than 25 years. Currently he works with the university one day a week and
remains active in research, publishing and teaching.



Yunus FibromyalgiaCare Center is located at the Proctor Professional
Building at 5401 N. Knoxville, Suite 218, Peoria, Illinois 61614.
Patients will be seen by physician referral only. To make an appointment
with Dr. Yunus, please have your physician's office call (309) 693-2244.










Sandy Bennett

Director of Communications

National Fibromyalgia Association

www.FMaware.org

714.921.0150, ext. 202








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Letter Writing Time!

 
This week's Newsweek has an article:
 
 
I direct you to one paragraph:
 "Yet public and private funding for research lag far behind other neurological afflictions, at $35 a patient (compared, for instance, with $129 for Alzheimer's and $280 for multiple sclerosis). It is time to remedy that gap, and to raise epilepsy to the front ranks of public and medical concern."
 
 
CFS gets about $1/patient, so I don't know what they're *itching about!
 
 
 
You can post a comment on the website, but please also send a copy to:
 
 
 
HERE'S MY LETTER
 
Epilepsy advocates are rightly concerned that their $35 per patient research funding lags far behind other neurological diseases, such as Alzheimer's and MS, but they receive far more than the $1/patient spent researching Myalgic Encephalomyelitis (a/k/a "Chronic Fatigue Syndrome"). 

ME/CFS costs the US economy $26 billion each year, yet, in its BEST year received only $12 million in research funding.  Although CDC estimates it affects 4 million Americans, only about $4 million a year is spent on research for a treatment or cure of a neurological disease which produces a "level of disability that's equal to that of patients with late-stage AIDS, patients undergoing chemotherapy, patients with multiple sclerosis", according to Dr. Nancy Klimas.  By some estimates, 40% of patients are completely disabled by their disease and cannot work -- more than the 1/3 of epilepsy patients who cannot manage their symptoms. 
 
Some experts, most notably Dr. Richard Bruno in the US and Dr. Elizabeth Dowsett in the UK, believe ME/CFS is related to that most dread disease of all, polio.  Unlike epilepsy, ME/CFS is contagious, which means everyone is susceptible to suffering from it.
 
Yet, research funding for ME/CFS continues to lag behind other neurological diseases which are not contagious and therefore pose no threat to those who are not genetically programmed to develop them.
 
 
RESOURCES:
 
 
 
 


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CFS Research Petition

I have set up the appended petition.


I know other people would have used other words but I wanted to keep things
as simple as possible.


If people write to me with alternative wordings, I do not promise to answer
as I have a lot of other work to be doing at the moment.  Other people can
always set up their own petitions if they like.


I have been somewhat understated in the hope that people will be willing to
sign it.
I hope researchers and medical doctors as well as patients and their loved
ones will sign it.


If people feel it is useful, please try to get as many signatures as
possible.  You don't have to post all of this - even just posting the links
is useful:
http://CFSdefinitionpetition.notlong.com
i.e.
http://www.ipetitions.com/petition/empirical_defn_and_CFS_research

People with websites, blogs, etc could link to it.

Tom Kindlon


P.S. People do not need to donate to the site.

~~~~~~~~~~~~~~~~~~~~~~
http://CFSdefinitionpetition.notlong.com
i.e.
http://www.ipetitions.com/petition/empirical_defn_and_CFS_research


Title: CDC CFS research should not involve the empirical definition (2005)


Text:
The petition
We call on the Centers for Disease Control and Prevention (CDC) to stop
using the "empirical" definition[1] (also known as the Reeves 2005
definition) to define Chronic Fatigue Syndrome (CFS) patients in CFS
research.

The CDC claim it is simply a way of operationalizing the Fukuda (1994)
definition[2]. However the prevalence rates suggest otherwise: the
"empirical" definition gives a prevalence rate of 2.54% of the adult
population[3] compared to 0.235% (95% confidence interval, 0.21%-0.536%) and
0.422% (95% confidence interval, 0.29%-0.56%) when the Fukuda definition was
used in previous population studies in the US[4,5].

The definition lacks specificity. For example, one research study[6] found
that 38% of those with a diagnosis of a Major Depressive Disorder were
misclassified as having CFS using the empirical/Reeves definition.

References

[1] Reeves WC, Wagner D, Nisenbaum R, Jones JF, Gurbaxani B, Solomon L,
Papanicolaou DA, Unger ER, Vernon SD, Heim C. Chronic fatigue syndrome--a
clinically empirical approach to its definition and study. BMC Med. 2005 Dec
15;3:19.
Link: http://www.biomedcentral.com/1741-7015/3/19

[2] Fukuda K, Straus SE, Hickie I, Sharpe MC, Dobbins JG, Komaroff A. The
chronic fatigue syndrome; a comprehensive approach to its definition and
study. Ann Int Med 1994, 121:953-959.

[3] Reeves WC, Jones JF, Maloney E, Heim C, Hoaglin DC, Boneva RS, Morrissey
M, Devlin R. Prevalence of chronic fatigue syndrome in metropolitan, urban,
and rural Georgia. Popul Health Metr. 2007 Jun 8;5:5.

[4] Reyes M, Nisenbaum R, Hoaglin DC, Unger ER, Emmons C, Randall B, Stewart
JA, Abbey S, Jones JF, Gantz N, Minden S, Reeves WC: Prevalence and
incidence of chronic fatigue syndrome in Wichita, Kansas. Arch Int Med 2003,
163:1530-1536.

[5] Jason LA, Richman JA, Rademaker AW, Jordan KM, Plioplys AV, Taylor RR,
McCready W, Huang CF, Plioplys S. A community-based study of chronic fatigue
syndrome. Arch Intern Med. 1999 Oct 11;159(18):2129-37.

[6] Jason, LA, Najar N, Porter N, Reh C. Evaluating the Centers for Disease
Control's empirical chronic fatigue syndrome case definition. Journal of
Disability Policy Studies 2008, doi:10.1177/1044207308325995.

Further reading:
Problems with the New CDC CFS Prevalence Estimates
Leonard Jason, Ph.D., DePaul University
http://tinyurl.com/2qdgu4  i.e.
http://www.iacfsme.org/IssueswithCDCEmpiricalCaseDefinitionandPrev/tabid/105/Default.aspx

Brief comment from Tom Kindlon: I have Chronic Fatigue Syndrome (CFS) for
over 20 years. I want a lot of research progress in my lifetime and believe
the empirical definition (2005) (also known as the Reeves definition (2005))
decreases the chances that this will occur this: abnormalities that would
show up using a more strictly defined definition won't show up using the
empirical/Reeves definition; and abnormalities that might show up in the
broad group covered by the empirical/Reeves definition are not necessarily
representative of CFS patients. This messes up the CFS literature even
further.


Petition sponsor:

Tom Kindlon, a patient with Chronic Fatigue Syndrome (CFS) for over 20
years. I have done a lot of voluntary work in the area for over a decade.
Recently I had two letters on CFS published in medical journals.


Links

The paper defining the empirical/Reeves definition can be read at:
http://www.biomedcentral.com/1741-7015/3/19

Some comments on the paper have been posted at:
http://www.biomedcentral.com/1741-7015/3/19/comments


An article by Leonard Jason PhD on the issue can be read at:
http://tinyurl.com/2qdgu4  i.e.
http://www.iacfsme.org/IssueswithCDCEmpiricalCaseDefinitionandPrev/tabid/105/Default.aspx
 
 
 
 
 


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Recent Polio News from Dr. Bruno

This information is included here because Dr. Bruno thinks CFS and polio are related.
 
 

Polio infection seen in death of Minnesotan
The Associated Press - Tuesday, April 14, 2009

Minnesota health officials are investigating the death of a person who was infected with a strain of the polio virus.

The patient was infected with the live polio virus that was used in the oral vaccine, which was discontinued in the U.S. in 2000, the Department of Health said Tuesday. The vaccine now in use is injected and doesn't contain live virus, and officials said this case poses no risk to the general public.
"This is a very rare occurrence and does not signal a resurgence of polio," State Epidemiologist Ruth Lynfield said in a statement.
The patient died last month with polio symptoms that included paralysis, but the department said it's not known to what extent polio contributed to the death. The patient also had a weakened immune system and multiple health problems.
It's likely the patient became infected from someone who had received the live-virus vaccine before its use was stopped, the department said. Aaron Devries, an epidemiologist with the department, said testing here and at the Centers for Disease Control and Prevention showed that the patient probably acquired the virus 10 to 15 years ago and continued to carry it around all these years. He said they don't know why the patient became ill from it only recently.
The department said it was working to determine if any health care workers might have been exposed. It said only unvaccinated people or people with deficient immune systems who had direct, ungloved contact with the patient's bodily secretions would be at any risk.
Citing patient privacy laws, the department did not release any details about the victim.
Officials said this type of polio infection is very rare. Only 45 cases of vaccine-derived paralytic polio disease in people with immunodeficiencies have been reported in the world since 1961, according to the Centers for Disease Control and Prevention.
In these rare cases, the health department said, someone who has either never been vaccinated or has a weak immune system can get the polio virus from someone who has been vaccinated and is excreting the virus in their stools. Sometimes, but not always, these infections result in illness, as happened in this case.
The other reported U.S. instances of vaccine-derived polio infection also occurred in Minnesota, in 2005. Five children from the Amish community near Clarissa in central Minnesota, which had low rates of immunization, were infected but did not develop outward symptoms.
Lynfield said they suspect the reason all the U.S. cases were detected in Minnesota was because of its advanced public health reporting system.
The CDC says the oral vaccine is still used in countries where naturally occurring polio is still a threat because it's better at stopping the spread of the virus. The U.S. switched to the injected vaccine because wild polio has already been eliminated from the Western Hemisphere, and the few cases of polio that were occurring, about 8-10 per year, were caused by the oral vaccine itself, not the wild virus.
The last case of naturally occurring paralytic polio occurred in the U.S. in 1979, but health officials said the new case was a reminder for people to make sure their immunizations and their children's shots are current. Most people in the U.S. have been vaccinated against polio.
But vaccination rates against polio are dropping, warned Dr. Richard L. Bruno, chairman of the International Post-Polio Task Force and director of The Post-Polio Institute at New Jersey's Englewood Hospital and Medical Center. He noted that the CDC estimates that more than 1 million U.S. toddlers aren't vaccinated against it. And he said there's always a danger polio could return via another country where it's endemic.
"We must do more to vaccinate America's children against this deadly and disabling disease," Bruno said. "America's next polio epidemic could be just a car or plane ride away."

______________________________________________________________________________

INTERNATIONAL
POST-POLIO TASK FORCE
International Centre for Post-Polio Education and Research
at Englewood Hospital and Medical Center
Englewood, New Jersey  07631  USA
877-Post-Polio    201-894-3724
PostPolioInfo@aol.com
PostPolioInfo.com

For Immediate Release

POLIO KILLS IN MINNESOTA

DEATH GIVES "NIPP IT YEAR" NEW EMPHASIS

Tuesday April 14, 2009:  The Associate Press today reported the death of a person infected with the live poliovirus used in the oral vaccine that was discontinued in the US nine years ago. The health department says the patient died with polio symptoms, but it's not known to what extent polio contributed to the death.  The patient also had a weakened immune system and multiple health problems.  The Minnesota department of health says the patient most likely became infected from someone who had received the live-virus vaccine before its use was stopped.

"For reasons we don't understand, the live poliovirus remained inside this person for ten years, mutated and became virulent, then contributed to the person's death,"  said Dr. Richard Bruno, chairperson of the International Post-Polio Task Force.  "This death is the latest sad reminder that polio may be forgotten in the US, but that it is far from gone." 

Alarming Drops in Polio Vaccination in US Border States and Ports of Entry.

Unfortunately, rates of polio vaccination have decreased in the US in spite of six other US polio cases since 2005 -- five of them in Minnesota -- caused by poliovirus imported into the US, and in spite of polio breaking free of vaccination efforts last month in Africa, with Kenya and Uganda reporting their first polio cases and deaths in twenty years.

"The latest Centers for Disease Control data show drops in polio vaccination in twenty states and in ten large US cities," said Dr. Bruno, who is also director of The Post-Polio Institute at Englewood Hospital and Medical Center "The CDC estimates that more than one million US toddlers are unvaccinated."

"Even Minnesota has had a decrease in polio vaccination, which is obviously disturbing," said Dr. Bruno.  "It is frightening that states with the largest drops lie next to Mexico and Canada, across whose borders the poliovirus is believed to have been imported into the US since 1997."   Seventy percent of the states that border Canada had drops in polio vaccination as did Arizona, Texas and New Mexico.

City Children Living in Poverty Have Lowest Polio Vaccination Rates.

Dr. Bruno is also concerned about cities that are major points of entry into the US -- New York, Philadelphia, Houston and Seattle -- where drops in polio vaccination were also reported.

"Toddlers living in poverty have the lowest polio vaccination rates -- below 87% in Boston, Indianapolis, Memphis and Phoenix, and below 85% in Detroit, Houston and Seattle -- rates lower than in Western Pacific countries that include Cambodia, Mongolia and Vietnam," said Dr. Bruno.  "I'm worried that those who recently had polio in the US are canaries in the mine shaft."

"NIPP IT YEAR" Underscored by Minnesota Death.

The International Post-Polio Task Force proclaimed 2008-2009 "National Immunization for Polio Prevention in Infants and Toddlers -- or 'NIPP IT' -- YEAR," to prompt parents, healthcare professionals and state health officials to ensure that all American children receive four doses of the injectable, inactivated polio vaccine by age two.

"'NIPP IT YEAR' is intended to raise awareness of the need for polio vaccination, to stop state legislatures from allowing parents to refuse vaccinations for their children because of a "philosophically objection" to vaccines, and hopefully 'nip' America's next polio epidemic in the bud," said Dr. Bruno. 

The polio vaccine has been a victim of its own success.  Young parents do not vaccinate because they have not experienced the devastation, death and disability caused by diseases vaccines eliminated, or are unaware that polio remains a scourge transportable from Africa, Pakistan, Afghanistan and India

"With the ease of air travel, what will happen when a polio-infected individual lands in one of America's potential polio pockets, like New York City, and passes poliovirus to the estimated 24,000 infants and toddlers in that city who are not immunized?" asked Dr. Bruno  "We must do more to vaccinate America's children against this deadly and disabling disease.  America's next polio epidemic could be just a car or plane ride away."   

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Hillary Johnson's CFS website

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Tuesday, April 14, 2009

Another CFS/ME Research Blog

Chronic Fatigue Syndrome and Myalgic Encephalomyelitis Research Blog

Dear Friends,

Please visit the newest blog from The Patients Voice.  In this blog we are very keen to explore your thoughts and ideas about the experience of suffering from Chronic Fatigue Syndrome or Myalgic Encephalomyelitis.

We would therefore like to invite you to participate in the blog.  Firstly by having a look at the blog and secondly by participating yourself by leaving a comment on your CFS or ME experience.  It is a great opportunity to share experiences and information about CFS or ME.

To visit the blog please go to

http://www.thepatientsvoice.org/Chronic_Fatigue_Syndrome/

Blogs are a wonderful way for our members to connect with each other.  But not just that they are a great way to disseminate information with people who suffer from CFS or ME. 
This is a great opportunity for you to share with other members and enrich all our knowledge.

Feel free to share this blog with anyone you know might be interested.


Best wishes

Belinda

Belinda Shale

The Patients Voice
http://www.thepatientsvoice.org




 


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Public Meeting at CDC on April 27

 
 
NOTICE OF PUBLIC MEETING AT CDC
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The CFIDS Association of America just received this advance notice of the following public meeting. The Federal Register announcement, copied below, is expected to be published on April 15. The Association encourages all those who are interested in the CDC's research to express their views, in person or in writing. Please send your statements directly to CDC at CFSResearchPlan@cdc.gov .


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CDC Stakeholders' Meeting on CFS Strategic Research Plan

On April 27, 2009, 1:00-5:00 PM, CDC will host an open meeting concerning chronic fatigue syndrome (CFS). The meeting will take place at CDC's Global Communications Center, Building 19, Auditorium B2, 1600 Clifton Road NE, Atlanta, Georgia 30333, and is open to the public, limited only by the space available.

The purpose of the public meeting is to solicit input from interested parties on issues that CDC will consider as it develops a five-year strategic plan for its CFS research program. Input is sought only on the CFS strategic research plan, not on CDC's overall CFS program. As CDC is one of many institutions conducting research on chronic fatigue syndrome, the strategic plan will only address research that is within CDC's purview.

Topics Include: The objective of the five-year strategic plan is to conduct public health research leading to the control and prevention of medically unexplained chronically fatiguing illnesses, in particular CFS. The agenda will focus on the goals and objectives of CDC's CFS research program in five major categories:
Studies of Defined Populations


Provider-based Patient Registries


In-hospital Clinical Studies


Laboratory Studies


Provider and Public Educational Intervention Research

The agenda does not include development of consensus positions, guidelines, or discussions or endorsements of specific commercial products. Agenda items are subject to change as priorities dictate. Members of the public wishing to make an oral statement during the meeting should limit their remarks to five minutes and should address the research agenda. Written comments and suggestions from the public on the research agenda are encouraged and may be submitted to the email address listed below by April 22, 2009. While CDC will carefully consider the individual comments and opinions it receives, it will retain discretion in its decision-making process. A draft strategic plan will also be presented at the Chronic Fatigue Syndrome Advisory Committee meeting held May 27-28, 2009 (http://www.hhs.gov/advcomcfs/ ).

Background: CDC recently solicited and considered recommendations from an external review panel that evaluated the research and professional education components of the CFS research program. The panel's report summarizing the findings of the peer review has been published on the CDC CFS website at www.cdc.gov/cfs/pdf/cdc_cfs_research_program-external_review.pdf . In brief, the panel noted that: (1) the CDC team currently leads the world in both the breadth and depth of their research into CFS; (2) the efforts of CDC have highlighted the public health importance of CFS; (3) all current research projects address important issues; and (4) CDC is uniquely positioned to conduct a broadly based research program derived from the population, a large-scale educational outreach program (particularly to healthcare professionals) and to provide expert web-based resources for patients, their families and non-healthcare professionals. The report included several valuable recommendations which CDC has begun to implement, starting with the development of a strategic plan to drive the program's research, prevention, and control activities for the next five years. This meeting will provide input to that strategic plan.

Persons anticipating attending the meeting are requested to send written notification by April 22, 2009, including name, organization (if applicable), address, phone, fax, and email addresses to the contact below. Additional information on visiting CDC is available at http://www.cdc.gov/about/resources/visitGuide.htm .

For Further Information Contact: CFSResearchPlan@cdc.gov





 


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FM/CFS/ME Resource Doctor Database

http://fmcfsme.com/doctor_database.php

 
Now over 5000 doctors listed!
 
 
 
 
 
 


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