Saturday, August 18, 2012

5-to-1 research dollar match -- DONATE NOW!

Dear ME/CFS Patient,

Last month I sent you a letter telling you about a very important ME/CFS research opportunity with Simmaron Research Foundation* and encouraging you to help support it. I want to thank you for your wonderful response. I'm happy to report that Simmaron received 175 gifts totaling $12,000. That means there will be $60,000 more in ME/CFS research done thanks to your generosity!

In the last letter, I shared my own personal story of how I learned that I am one of a small group of people with ME/CFS who is at high risk for developing non-Hodgkin lymphoma.  Many of you wrote to me expressing your concern for me, for which I am deeply grateful.  However, I also received a few notes from people who were offended by my revelation, feeling that I was using scare tactics to get them to donate money. 

I want to assure you that it was never my intention to scare you into making a donation.  Rather I wanted to emphasize the fact that there is an urgent need for more quality ME/CFS research and that right now, with Simmaron Research's cerebral spinal fluid study, we have an unprecedented opportunity to multiply our research dollars five times over.

The sad fact is that for at least a subset of ME/CFS patients like myself, there is a higher than average risk of developing cancer.  That's not a scare tactic; it's simply reality.  It is also a reality that a 2006 study showed that people with ME/CFS have an increased risk of premature death from not only cancer, but also from heart failure and suicide. 

The major risk we face as ME/CFS patients, though, is the loss of our quality of life.  That's not only a risk but also a reality for virtually every person with ME/CFS.  This disease prevents us from living the life we want to live - the life we deserve to live.

Because of these risks, we simply can't afford to wait until the government decides ME/CFS is deserving of more research dollars.  We have to help ourselves now.  Our lives may depend on it. 

The research project I told you about last month is focused on analyzing the cerebral spinal fluid of patients in an effort to understand the neurological and immunological aspects of the disease, as well as to identify a biomarker for ME/CFS.  Researchers working with Dr. Dan Peterson on the study have reported promising early results and everybody is excited. A biomarker for ME/CFS would mean early diagnosis. Most important, it would legitimize 'Chronic Fatigue Syndrome'. We desperately need that to happen.

$830,000 Up For Grabs!

The Mason Foundation in Australia believes in this research so much, it has dedicated $830,000 to fund the second part of what is the largest-ever collaborative international ME/CFS project. But with one caveat: phase I of the study must first be funded.

Patients have already raised the first $87,000 of the $225,000 needed to complete phase I, thanks in particular to the kind generosity of Linda Tannenbaum of the Neuro-Immune Disease Alliance, Inc. and to your recent donations.  Patients and our loved ones are the heroes after all. But we are still short $138,000.

That means $830,000 in possible ME/CFS research is up for grabs. All we need to do is raise $138,000 more to get it. We can't count on the government. But we can count on ourselves to do what is right, and we can count on support from our family and loved ones.

So I challenge patients and other members of the ME/CFS community to make this research happen. Donate a dollar, and the Mason Foundation will multiply it by $5 - that's already as much as the investment the government made for you last year. Make a $10 donation and buy $50 worth of research. Donate $1,000 and we are $5,000 closer to our goal of getting well. Patients have never had such a good opportunity!

Go to Simmaron's website (SimmaronResearch.com) to make a tax deductible contribution to fund this research. If we don't pay for research ourselves, patients' lives will continue to be wasted, and some lives will even be lost. This is our chance to make a difference. I have faith that we will.

Our goal is early diagnosis, treatment, and a cure. Patients and dedicated researchers are making it happen now.  We are working together as a community to raise money to fund our own research. But we need your help. There has never been a better time or a better opportunity to fund ME/CFS research. I ask that you visit Simmaron's website today to make a tax deductible donation to support research that will give patients a better tomorrow. Every dollar you give buys five dollars of research.

Your fellow patient,




Rich Carson

ProHealth Founder; former support group leader



@RichCarsonsDeal



P.S.  Help us spread the word.  Forward this letter to your family and friends and encourage them to join you in supporting this important ME/CFS research opportunity. 



* More About Simmaron Research:

Simmaron Research Foundation is a dynamic new nonprofit organization that was founded by the ME/CFS patient and medical community to solve the mystery of this devastating disease. Their goal is two fold - find biomarkers that will lead to a diagnostic test for ME/CFS, and find effective treatments.



Dan Peterson, MD, considered a founding father of modern day ME/CFS medicine, has given them access to the rich repository of biological samples, data and records that he has collected over more than 25 years of clinical work and research.



A look at the list of researchers who are working with Simmaron and Dr. Peterson, one of the Foundation's scientific advisors, reveals some giants in the field of virology, immunology, and cell biology. These guys know what they are doing.






ProHealth, Inc.  |  2040 Alameda Padre Serra  |  Santa Barbara, CA 93103 USA

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Thursday, August 16, 2012

Whittemore Federal Lawsuit Delayed

Source: Reno Gazette Journal
Date:   August 15, 2012
Author: Martha Bellisle
URL:    http://www.rgj.com/apps/pbcs.dll/article?AID=2012308160009


Harvey Whittemore's federal lawsuit delayed
-------------------------------------------

After listening to lawyers for Harvey Whittemore and his former
partners trade attacks, including claims of death threats, broken
legs, thugs and lying to FBI agents, a federal judge shut down
Whittemore's federal case against the Seenos to avoid duplication with
their case in Las Vegas. U.S. District Judge Larry Hicks issued late
Wednesday a temporary stay putting Whittemore's case on hold. He said
a written order will follow.

Thomas and Albert Seeno Jr. sued Whittemore in January, claiming he
misappropriated funds from the Wingfield Nevada Group. The former
lobbyist responded one week later with a federal suit accusing the
Seenos of racketeering. The Seeno lawsuit filed in Clark County
District Court sparked a federal investigation that led to felony
charges against Whittemore for allegedly making illegal campaign
contributions to U.S. Senate Majority Leader Harry Reid, D-Nev., in
2007 and lying to federal agents. Whittemore has pleaded innocent to
the four charges. His trial is set for Feb. 26, 2013. Whittemore sat
in the courtroom with his wife, Annette, on Wednesday, but did not
speak during the morning's arguments.

Kent Robison, representing the Seenos, praised the judge's decision.
'It's certainly a victory for the Seenos but also is a victory for the
public and taxpayers,' Robison said. 'Judge Hicks saved the judicial
system hundreds of thousands of dollars. It was a well-thought-out,
courageous, enlightened decision.'

Earlier in the day, Robison told the judge that Whittemore should have
filed his complaints against the Seenos in the state court case but
instead went 'forum shopping' - hoping for a better deal in federal
court. Whittemore's state counter-suit in the Seeno case duplicated
his federal claims. Robison urged the judge to put Whittemore's case
on hold until the state case is resolved. Staying the case will save
the court money and time, he said. The state case involves about 200
witnesses and 'hundreds of thousands of documents,' he said. Repeating
that work in federal court would be a waste, he said.

Whittemore's federal case claims that the Seenos threatened him in
order to make him give up his assets and property. But Robison said
when Whittemore talked to the police, he told them there was no
criminal activity and he did not want an investigation. 'We know Mr.
Whittemore has a problem telling the truth to the FBI,' Robison said.
'There's no reason to believe he would here.'

Whittemore's lawyer, Dan Bowen, objected to that comment, saying
nothing had been proved. Bowen said the federal case was against the
Seenos, not Wingfield, and it should be allowed to go forward.
'Wingfield did not threaten to murder Mr. Whittemore and his entire
family,' Bowen said. The Wingfield company did not threaten to break
Whittemore's legs and did not send a thug to the Whittemore home to
collect goods and jewelry, Bowen said. Members of the Seeno family
did, he said. Bowen said the claims made in the federal case cannot be
made in the state action, but Hicks disagreed.

Hicks said Whittemore's attempt to recover $60 million is directed at
Wingfield, not the Seenos. Whittemore will need to fight that battle
in state court, he said. The judge said he did not necessarily accept
the argument by Robison that Whittemore was 'forum shopping' by filing
the case in federal court. But he said the two cases were
substantially similar and it would be a waste of court resources to
keep them on parallel paths. 'The state court action in this case
concerns virtually the same damage claims as claimed in this case,''
Hicks said. 'This is clearly the kind of extraordinary circumstances
that warrant a stay by the federal court.' Hicks stopped short of
dismissing the federal case so that he could make sure no problems
arose in the state case, being heard by Clark County District Judge
Elizabeth Gonzalez. The trial for the state case has been set for May
20, 2013. He said Whittemore can amend his counterclaims against Seeno
as part of that state case.

--------
(c) 2012 Reno Gazette Journal

- - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -
Source: Associated Press
Date:   August 2012
URL:    http://www.lvrj.com/news/u-s-judge-delays-whittemore-lawsuit-166378146.html


U.S. judge delays Whittemore lawsuit
------------------------------------

RENO - Lawyers for Harvey Whittemore and the ex-business partners he
is suing in court offered a glimpse Wednesday of the legal and
political fireworks on the horizon as the Nevada developer and
lobbyist awaits a criminal trial for alleged campaign fundraising
violations. 'We know Mr. Whittemore has a little bit of a problem -
according to the grand jury - telling the truth to the FBI,' said Ken
Robison, a lawyer representing Thomas Seeno and Albert Seeno Jr. of
Concord, Calif.

His comments drew a rebuke from U.S. District Court Judge Larry Hicks
during spirited arguments in federal court in Reno on Wednesday
regarding jurisdiction of the case involving the former business
partners. 'I'm going to caution both sides against personal attacks on
one side or the other,' Hicks said.

The judge later decided to put on hold Whittemore's $60 million civil
lawsuit against the Seenos in his federal courtroom while similar
litigation between the two sides continues in Clark County District
Court. 'The state court action in this case concerns virtually the
same damage claims as claimed in this case,' he said. 'This is clearly
the kind of extraordinary circumstances that warrant a stay by the
federal court.'

Hicks said he stopped short of granting the Seenos' request to dismiss
the federal case entirely so he can be sure Whittemore's rights are
fully protected during the state proceedings. He said Whittemore can
amend his counterclaims against Seeno as part of that state case.

Whittemore, 59, who has close ties to Senate Majority Leader Harry
Reid and other prominent Nevada politicians, was indicted earlier this
year on four counts related to campaign contributions made in 2007 to
an unnamed elected federal official. His trial was originally
scheduled for Aug. 7 but has been postponed until early next year.

--------
(c) 2012 Associated Press

Wednesday, August 15, 2012

Fibromyalgia Network

Get  in the loop with the most comprehensive and up-to-date information available to patients anywhere! The Fibromyalgia Network is Member-supported and does not accept advertisements from drug companies or anyone else. Cost is only $28/year.
 
Fibromyalgia Network Membership benefits include:
quarterly ad-free Journal
monthly eNews Alerts between Journals
referrals to doctors and support groups
treatment advice from the experts
suggestions for easing pain and other symptoms

oin online or call us toll-free at (800) 853-2929. Our office hours are weekdays, from 9 a.m. to 5 p.m. PST. If you prefer to join by mail with a check or money order, please print an order form.

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The Fibromyalgia Network invites you to our Facebook page to visit with other fibro patients, ask questions, and enjoy the company. It's free and we post several articles each week. www.facebook.com/FibroNetwork



PO Box 31750 | Tucson, AZ 85751-1750 | (800) 853-2929 | www.fmnetnews.com  
© 2012 Fibromyalgia Network





What the Fibro Experts Say

The current issue of the Fibromyalgia Network Journal is hot off the press, and it's packed with treatment suggestions and research on your symptoms. Here's what some of the experts in our current issue are saying:
"Treatment targeted at low-grade autoimmunity is very helpful in fibromyalgia patients," says David McLain, M.D.

"We found the timing of the last meal was positively associated with consuming more calories, which equated to two pounds per month," says Kelly Baron, Ph.D., M.P.H.

"If I wake up 15 times a night, I don't have insomnia. I'm waking up because I have fibromyalgia," says Thomas Roth, Ph.D.
 
"A decrease in the regional gray matter volume in the thalamus was found in patients with chronic pelvic pain," says Sawsan As-Saine, M.D.

"These impairments may lead fibromyalgia patients to organize information inappropriately, resulting in forgetfulness and problems with concentration," says Yongmin Chang, Ph.D.

"Dietary manipulation is a relatively simple and low cost nonpharmacological intervention," says Kathleen Holton, Ph.D., M.P.H.

"People may be seeing multiple doctors and think they are falling apart. For the physician who does not recognize the related conditions, they may think this patient is a 'train wreck,'" says David McLain, M.D.

"Even after you treat their sleep, fibromyalgia patients often wake up feeling terrible and unrefreshed. So I find myself treating their day," says Karl Doghramji, M.D.

"Our study shows that central nervous system abnormalities, such as reductions in spinal pain inhibition, occur most strongly in fibromyalgia but are also present in irritable bowel syndrome patients," says Philippe Goffaux, Ph.D.


Get  in the loop with the most comprehensive and up-to-date information available to patients anywhere! The Fibromyalgia Network is Member-supported and does not accept advertisements from drug companies or anyone else. Cost is only $28/year.

The "Secret" UK ME Files

~~~~~~~~~~~~~~~~~~~~~~~~~
Send an Email for free membership
~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:
  >>>>> Help ME Circle <<<<
>>>>   15 August 2012    <<<<
Editorship : j.van.roijen@chello.nl
~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:


Thanks to Marry Molendijk <molendijk40@zonnet.nl>


REVIEW August 2012:

The "Secret" M.E. files in the
National Archives at Kew in
London, UK-

by Valerie Eliot Smith


Introduction

Given the recent cyber-activity (Facebook and
elsewhere) regarding the above files, it might
be helpful for me to outline the history and
context of these files.

I use the term "ME" to describe the spectrum
of illnesses which is often reduced to the term
ME or ME/CFS. It includes the following
although the list is not exhaustive: Myalgic
Encephalomyelitis, Chronic Fatigue Syndrome,
Fibromyalgia, Post-Viral Fatigue syndrome and
several others.

The reference numbers of the above documents
are BN141/1 (the "DWP" file, originally closed in
1992 until 2072 and then opened in April 2012)
and FD23/4553 (the "MRC" file, originally
closed in 1991 until 2071 and opened in
November 2007).

There may well be other files and they will be
subject to the same procedures and scrutiny
as these files.


Legal background

When files from the various Departments of
State (Health, Education, Work and Pensions
etc.) are archived in the normal way they are
reviewed in case they contain confidential
information. It is necessary here to distinguish
between "confidential" and "secret". Secret
files are subject to a different process of
classification - for example, reasons of national
security such as prevention of terrorism.

The ME files are not in the "secret" category;
however, some of the information which they
contain is confidential in that it reveals
sensitive personal details about named
individuals (eg. medical information) or the
information itself was given in confidence (eg
proposals for research funding). Any public
authority is under a statutory duty to protect
the privacy of its citizens (ie. you, me and
everyone else in the UK) so these files – like
many others – were closed and then archived
in the National Archives (TNA) at Kew, in the
early 1990's.

The formula under which these files were closed
is contained in a simple, if cumbersome
mathematical calculation. The age of the
youngest person mentioned in the files is
calculated at the time of review. A period of
80 years is added on and that gives the date
when the file can be opened, on the basis that
everyone referred to in the file will have died
by that time so their privacy is protected
during their lifetimes. You do the math, as they
say. It does work – I've checked it. It seems
somewhat gruesome and draconian but due
process is often like that.

Since then, there has been a major policy shift
towards public access to information. This led
to the Freedom of Information Act 2000 (FOIA)
which, amongst other things, enabled the
procedure which anyone can use to request
that a file is opened up. That is how the
information about MP's expenses came into the
public domain, for example.


Accessing the files

At some stage, these particular ME files were
identified by someone unknown and clearly
they tried to access them – possibly without
knowing about this procedure. When they were
unable to obtain the files, it may have been
incorrectly assumed that the files were
"secret" rather than merely confidential and so
the rumours began.

When I first heard about these files some years
ago, like many other people, I was intrigued. I
decided to see if they could be accessed using
this process. Initially, I was only aware of the
details of the DWP file so I started with that in
September 2011. It took considerable
persistence and effort but I followed the
process and took it through three stages of
appeal. There are further stages which you
can move on to if necessary, but, at that
stage, the Office of the Information
Commissioner (OIC) – having reviewed the full
file - agreed that it should be opened in April
2012 so I didn't need to go any further.

[I should point out here that anyone can
request the opening of any file covered by the
FOIA at any time regardless of all other
considerations. That doesn't mean it will be
successful but the process is available and the
information is displayed on government
websites and those of public authorities].

However, the DWP file did contain information
which was exempt from disclosure under
Section 40 of the FOIA – as I described in the
fifth paragraph of this article (towards the
bottom of the first page). I agreed that file
could be redacted accordingly to protect the
sensitive personal details of named individuals
and then released. This is absolutely standard
procedure. I then viewed the file at Kew on 30
May 2012 (it is not yet available online from
TNA website).The redacted portions of the file
are clearly marked as required by the
legislation.

Around this time I tracked down the second file
– the MRC file – and checked it out. To my
surprise, it was already open and available
online from TNA – although again, with
redactions so I downloaded it. It had been
opened up in 2007 so clearly someone else had
already been through the same procedure as I
had with the DWP file. For the record,
Parliamentary Questions and e-petitions will
not get a file opened up on their own; this is
the only process which will achieve it.

In both files, the person doing the redactions
seems to have been somewhat over-zealous
so the current situation is that I still have
ongoing appeals with the OIC against the
redactions in both files and therefore the
process is not yet completed. However, I do
not think that it is likely these appeals will be
successful as the law appears, on the face of
the papers, to have been correctly applied.
Nor do I think that we will learn much more
even the redacted information is disclosed.
There is a vast amount of material available in
the files as they stand - even with the
redactions still in place.

From my own personal point of view, I found -
and still find - reading these files to be deeply
distressing, disturbing and painful. It is utterly
draining, and overwhelmingly depressing going
through them. However, the information
contained there is very old and none of it what
was revealed in general terms was new to me.


My conclusion

I personally had not seen these specific
documents before but it was only additional
evidence of what I and many others already
knew to be the case regarding policy and
attitudes towards patients/benefit claimants in
relation to ME spectrum illnesses. Both
Professor Wessely's and Dr White's views, for
example, have been publicly expressed for
many years and the pervading climate, in my
view, is of confusion, cock-up and total
absence of policy direction rather than active
conspiracy.


The Mission

We need to find a new way of talking about the
ME spectrum of illnesses. We urgently need to
bring about policy change at the highest level.
I have believed this for many years but my
own health has precluded any significant
action. My opinion is that these files may give
us a springboard for such a campaign but
probably no more than that.

But first and foremost – we need an apology
from the UK government in the same manner
that the Norwegian Directorate of Health
apologised to its ME spectrum patient group in
2011. And we need other countries to do the
same.


SHARING AND ATTRIBUTING INFORMATION

Please feel free to share everything in this
article as the more people who have access to
the information, the better. However, I do ask
that I am properly credited with the work I
have done and what I have written as the
effort involved is enormous. I am aware that I
have not properly referenced this article but
everything I have referred to is in the public
domain and is mostly available on the internet.

I welcome comments and discussion but my
health is in shreds at the moment as a result
of the last few days. I need to take a short
break from my work so will not be responding
to anything for the time being.


How to access the ME files

The MRC file (158 pages) is straightforward as
it is available online from TNA website. If you
go to the site catalogue and search for
FD23/4553 you can "shop" and then download
it free of charge.

The DWP file (235 pages) ref. BN141/1 is more
complicated as, when I last checked, it was
not available online as yet. You can view it
either by physically going to TNA at Kew or
you can order a copy of it from the website
but be warned - that is very expensive and
this file contains a lot of duplication so money
is wasted on copying duplicate documents.
There seems to be a copy of this file currently
available via the file-sharing site
"yousendit.com" (see the "Invest in ME" group
on Facebook) but I suspect that will be
temporary.


About me

I am a barrister and I also have a background in
media and communications. I first became ill
with ME in my mid-twenties in 1981. I
continued to work and study until 1999 when

other serious health problems intervened.
These exacerbated my ME and I have been
unable to work since then.


And finally.....

I send my very best wishes to all fellow ME
spectrum sufferers, families, friends, carers
and all those who believe in us and support us
worldwide. Thank you.



VALERIE ELIOT SMITH

14 August 2012


````


Invest In ME is unreachable at this moment,
but you can download the file from:
http://yousend.it/MYPZ37

Name: National Archive NB 141-1.pdf
(166.2 MB)


~jan van roijen





~~~~

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Ampligen

Hemispherx Biopharma, manufacturer of Ampligen, has announced that the FDA has accepted its revised application as complete. A decision on marketing approval for Ampligen as a treatment for CFS is expected by Feb. 2, 2013, according to regulations that guide FDA. From RTT News: http://bit.ly/PZZHwg

80% of Medication Mayhem Is Preventable!

80% of Medication Mayhem Is Preventable!
                                    That's a new finding by doctors in Sweden, who found that 80% of "adverse events" from taking medications could have been prevented — if the doctor had been more attentive to making sure the drug was correctly prescribed and to monitoring the patient once they started taking the drug.
                                    And in a similar recent study, researchers from the University of Pittsburgh found that 90% of adverse drug reactions were potentially preventable.
 
 
(From Dr. T)
 
 

Save the Next Dance for M.E.

http://wpinstitute.org/news/docs/SaveTheNextDance2012.pdf
http://wpinstitute.org/news/docs/SponsorshipLevelsForm.pdf

Save The Next Dance For M.E.

August 13, 2012

Imagine that you are perfectly well one day and suddenly become ill
with a terrible flu-like illness, but instead of being ill for a short
period of time, you don't get well again! That is what it is like for
the millions of people who suffer from neuro-immune diseases such as
myalgic encephalomyelitis/chronic fatigue syndome (ME/CFS) and Gulf
War illness (GWI). They may have a few good hours in a day or a few
days of some relief, but for the majority of time they remain ill. You
may not be able to take away the pain and suffering, but you and I can
do something to make a real difference. Together, we can give those
who are ill the hope that one day soon things will change.

This year, we are not holding our annual I Hope You Dance dinner gala.
Instead, we are staying home in recognition of those who suffer from
chronic debilitating diseases that keep them from experiencing the
simple joys of living, such as attending work or school, playing their
favorite sport, or dancing!

Instead of asking you to dine and dance with us as usual this
September, we are asking that you help us by donating what you would
have spent on our annual gala event. By supporting the work of the
Institute, you give hope to the millions who are dreaming of the day
they will experience the joy of being well again. Your generous gift
to WPI represents hope for answers, hope for research and hope for a
cure.

Doctors and researchers at WPI are working every day to find the
answers for those who wait for a chance to return to their lives once
more. This field of medicine has too many unanswered questions. There
are no blood tests to diagnose these diseases. There are no FDA
approved treatments to end the chronic cycle of illness. Yet, we know
that with the support of committed scientists and knowledgeable
doctors, the answers are not far away. While some patients are
starting to see improvement, we have much more work to do to weaken
the devastating grip of neuro-immune diseases. Our mission remains
steadfast. Our hearts and minds are focused on finding answers for
those who suffer. Your generous donation is crucial to our success.

Please consider giving a donation in honor of someone you love, or
simply to help one of the millions of people looking to WPI for
answers. Your donation can make a real difference today in the lives
of so many.

With deepest gratitute,

Annette Whittemore, President WPI