Saturday, July 19, 2008

Private Funding Opportunities for CFS Research

I'm not set up to take donations for this blog, but I would urge my readers to make donations to support research.  With CDC/NIH giving True CFS short shrift, and polluting their research pools with psychiatric patients who don't actually have CFS, the bulk of the useful research into post-viral CFS has been paid for with private dollars.  Your contribution can help get a million Americans the cure that will allow them to go back to work.

[As Craig points out, there is no online donate button at the CFS Research
Foundation website.  But one can donate online  at
http://urlcut.com/donatetocfsrf  
Here
i.e.
http://www.cafonline.org/apps/charities/charityprofilelink.aspx?MainId=64337&SubId=146003&Source=CAF&CharityName=CFS+Research+Foundation .
There are, of course, other groups in the US, UK and around the world raising
money for research. Tom]
------------------------------------------------------------------------------------------------------


http://www.cfidsreport.com/News/08_Privately_Funded_CFS_Research.htm

----------------------------------------------------------------------------------
Private Funding: Opportunities for assisting CFS Research are Numerous and
Diverse
----------------------------------------------------------------------------------


(Craig Maupin at http://www.cfidsreport.com ) - April 2008 - When people think
of medical research, they often think of government agencies. In the United
Kingdom, the Medical Research Council (MRC) funds a large amount of medical
research. In the United States, the Centers for Disease Control and the
National Institutes of Health also fund medical research. Most mainline
advocacy for chronic fatigue syndrome (CFS) has often focused on increasing
the funding levels at these agencies.

Yet, government funding is only a small portion of the total research monies
spent on medical research. As of 1995, the top twenty-five charitable
foundations for a variety of diseases in the United States funded a healthy
total of 1.2 billion dollars of grants (ref: aaas.org). In the United Kingdom,
the Association of Medical Research Charities estimates that its members spent
roughly £791 million on medical research in 2006/7. These private efforts have
produced remarkable results. Privately funded research has delivered a
staggering number or research breakthroughs, from breakthroughs for diabetes,
to Parkinson's Disease, to cancer.

Chronic fatigue syndrome is developing a network of foundations and charities
focused on privately funded research. Unbound by politics or agency
directives, these foundations are free to pursue a wide variety of research
projects for CFS. In fact, many advocates believe that privately funded
research is a must, if understanding of the biology of CFS is going to
progress. According to Dr. Neil Abbott of ME Research UK, biomedical research
for CFS, a predominantly woman's illness, will be unlikely to occur in the U.K
without private funding. Abbott says that Freedom of Information Act requests
have yielded evidence that the MRC rejected 30 biomedical applications for CFS
research.

The good news is that opportunities for families, friends, and communities of
those who suffer from CFS to fund private research abound. Several foundations
in both the United Kingdom and the United States are dedicated to CFS
research, focusing on identifying biomarkers and scientific understanding of
CFS. In fact, these foundations are now considered by many clinicians,
advocates, and researchers alike to be involved in the cutting-edge of CFS
research.

The CFS Report has compiled a list of foundations that sponsor private
research. These foundations have contributed to strides in CFS research.


1. The CFS Research Foundation -- The CFS Research Foundation is best known
for funding the research of a multidisciplinary team led by U.K research Dr.
Jonathan Kerr, but they have been around since the early 1990's, funding a
wide variety of projects. M Kerr's team, to date, has already produced
remarkable results. In April 2008, Kerr published the first-ever study looking
at the complete genetic picture of people with CFS. He found a distinct
genetic profile for CFS, as well as 7 unique subgroups that merit further
investigation. The choices made by the foundation's scientific advisors and
directors have, thus far, been excellent.

The CFS Research Foundation has a simple, yet well-conceived, website
(http://www.cfsrf.com ). At their site, information is presented on how
donations can be made to fund Kerr's research, as well as any other
applications for CFS research that the foundation may receive. The Foundation
lists its scientific advisors and directors. Any research findings that result
from their grants are also posted. The donation forms are not geared toward
assisting U.S. or international donors, and the foundation currently lacks the
ease of online giving through credit card or Paypal.


2. ME Research UK. The United Kingdom is also home to our second research
foundation on our list, ME Research UK. ME Research U.K not only funds
research, but they actively stimulate interest in CFS research within the
scientific community by disseminating information and holding conferences. The
foundation benefits from wise, savvy and consistent leadership.

ME research UK has a website full of information on CFS/ME and their efforts.
http://www.meresearch.org.uk/  The website also features many ways for donors
to donate, featuring secure online donation in international currencies.



3.   The Whittemore Peterson Institute - Our third foundation hails from the
United States, where announcement by the Nevada legislature of a new research
center in the heart of Nevada's Reno countryside produced waves of optimism in
the CFS community in 2007. The research institute, headed by philanthropist
Annette Whittemore, whose daughter suffers from CFS, aims to provide funds for
new research and stimulate interest in CFS among physicians and researchers.
Well-known CFS clinician Dr. Daniel Peterson and a docket of advisors assist
the foundation in steering research into productive areas of inquiry. The
Whittemore Peterson Institute has a website that features easy donations by
credit card or Paypal in denominations of U.S. dollars. The link of for the
Whittemore-Peterson Institute is as follows. http://www.wpinstitute.org/



4. The HHV-6 Foundation -- Based inSanta Barbara California, the HHV-6
Foundation was founded in 2004 by Annette Whittemore and Karen Loomis to
"encourage scientific exchange between scientists and to provide pilot grants
for promising scientific and clinical research". The foundation is focusing
its efforts on developing better tests for HHV-6, a virus that may play role
in CFS. Their website, http://www.hhv-6foundation.org , offers complete
information on HHV-6, their directors and scientific advisors, and relevant
research. The site also features a online donation form, featuring easy
donation via Paypal account.



5. The CFIDS Association of America - Final on our list is the CFIDS
Association of America. The CAA has mostly been known for its political
advocacy, requesting increases in funding from federal agencies charged with
medical research. However, the CAA recently hired Dr. Suzanne Vernon, formerly
of the Centers for Disease Control, to head up a privately funded research
effort in the U.S. However, at this juncture, little is known about Vernon's
philosophy toward CFS, and the Association's past support of the CDC's
stress-based model for CFS is controversial. However, should advocates see
research funded by the CAA that falls outside the typical research funded by
the CDC, the CAA could be a revived player, given Vernon's stature, abilities
and contacts. The website for the CAA is www.cfids.org.

Favorable Ruling for the Worker

Favorable ruling for the worker in this US Supreme Court Erisa LTD Case:

http://www.scotusblog.com/wp/wp-content/uploads/2008/06/06-923.pdf

JUSTICE BREYER delivered the opinion of the Court.

The Employee Retirement Income Security Act of 1974
(ERISA) permits a person denied benefits under an employee
benefit plan to challenge that denial in federal
court. 88 Stat. 829, as amended, 29 U. S. C. §1001 /et seq./;
see §1132(a)(1)(B). Often the entity that administers the
plan, such as an employer or an insurance company, both
determines whether an employee is eligible for benefits
and pays benefits out of its own pocket. We here decide
that this dual role creates a conflict of interest;
that a
reviewing court should consider that conflict as a factor in
determining whether the plan administrator has abused
its discretion in denying benefits; and that the significance
of the factor will depend upon the circumstances of the
particular case. See /Firestone Tire & Rubber Co. /v. /Bruch/,
489 U. S. 101, 115 (1989).

Goodbye Full Accessibility (ADA changes)

Good-Bye Full Accessibility - Information Bulletin #250 (6/08)

In 1990, the disability community, Congress, state officials and businesses made numerous compromises to obtain the passage of the ADA. Despite these compromises, then President Bush, disability leaders and Congress trumpeted the eventual full accessibility of public and private facilities. Sometime in the future, people with disabilities would achieve equal opportunity with nondisabled and full accessibility would be achieved. Since 1990, we have seen some progress - curb cuts are now more the norm; ramps provide access to some stores and businesses (definitely not in everyone); some public swimming pools, playgrounds, and governmental buildings provide a degree of accessibility (often begrudgingly); sports venues are more accessible.

However, by and large, neither the governmental entities (Title II of the ADA), nor private business entities(aka public accommodations) (Title III of the ADA) have taken the initiative on their own and said "oh, Congress has made disability a civil right, and we will do the right thing and make our facilities and programs accessible."

Rather, progress has been slow, often requiring disability advocates to take the initiative and demand governmental and business entities to comply with the 1990 law and not make more compromises. The process is slow because disability advocates may not exist in a community, or they get frustrated that change is difficult.

On June 17, 2008, the Department of Justice issued proposed rules to the ADA's federal regulations which, if adopted, will significantly undercut the original 1990 compromises and will impose numerous regressive restrictions. Many of the proposed rules will ensure that full accessibility will be, at best, postponed indefinitely. These proposal rules, together with all the background information, cost estimates, commentaries etc., total about 1000 pages!

This Information Bulletin will address only the Title II requirement of "program accessibility ... when viewed in entirety" and the Title III requirement for removal of "readily achievable" barriers from existing facilities.

Here are two proposed changes: Title II - Section 35.150(b)(4) and (5). The current "program accessibility" regulation requires a public entity's programs and services be accessible, when they are "viewed in their entirety."

Re the proposed rule "Existing play areas and recreation facilities." If a public entity has "multiple play areas as part of its program," for program accessibility "only a reasonable number but at least one of such play areas would be required to undertake structural modifications to provide access for individuals [i.e., children] with disabilities." The "reasonable number but at least one" rule applies also to swimming pools and state parks. Does DOJ forget that "program access" for the past 18 years already implicitly required "at least one"accessible facility, or the program in its entirely would not be accessible? With the proposed rule, wouldn't public entities shoot for the minimum - one, regardless of the changes that might make many or all of the play areas accessible? DOJ asks if the "reasonable number, but at least one" is workable, or should DOJ provide a list of factors that a public could use to determine how many of the existing play areas or swimming pools to make accessible.

Folks - these are our children with disabilities! DOJ asks if play areas should have a "safe harbor from compliance with the applicable requirements in the 2004 ADAAG." This means that some play areas that might be in compliance with local standards could be exempt from ADAAG standards that presumably require greater accessibility.

Does anyone think DOJ would have proposed a "safe harbor" to end discrimination based on race? gender? How can there be a "safe harbor" that perpetuates discrimination?

Doesn't DOJ remember that in the late 1980s the U.S. Department of Transportation proposed a rule that a public transportation program would have a "safe harbor" if 3% of its expenditures went for accessibility. The disability community, and the Third Circuit recognized in its ADAPT v. Skinner decision, recognized that limiting accessibility and integration to "safe harbors" are an anathema to civil rights, the same as Congress and President Bush in 1990.

Related to the problem of a "safe harbor" is the DOJ question "what is the 'tipping point' at which the costs of compliance ... would be so burdensome that the entity would simply shut down the playground?"

The ADA is a civil rights statute that is supposed to ensure for disabled folks the equal opportunity and the same benefits as nondisabled people. But let's get real! Does anyone know of any public entity in the entire country that has closed down any public playground or swimming pool becauseof inaccessibility? DOJ wants to hear if "existing play areas less than 1,000 square feet should be exempt" from accessibility requirements. This size was chosen because of an assumption that such small areas represented 20% of the play areas located in public schools. Great! Disabled children in those schools could be effectively kept off the play areas, presumably like they are being kept out of mainstream classrooms. Every small neighborhood tot lot would be exempted. The rule making asks if 50% of monkey bars, sliding boards, and other "elevated play components" in playgrounds should be exempt from accessibility. DOJ asks if "additional ground level play components" should be substituted for the "elevated play" components.

Title III - Section 36.304. The current regulation requires removal of barriers in public accommodations when it is "readily achievable" to do so. It is important to remember that the existing federal regulations require removal of barriers only when it is "readily achievable" - which on a caseby case basis ensures that only reasonable modifications will occur. "Safe harbors" will exempt from barrier removal even those situations that are "readily achievable" to be made accessible.

A small business will receive a "safe harbor" if it spends in a given year one percent of its gross revenues on barrier removals. Advocates who have been frustrated since 1990 asking businesses to "remove barriers" by building a ramp or making a bathroom accessible, now will have the fun of arguing about a businesses "gross revenues" in a given year (what, Mr. Businessman, is your basis for accounting?) and the costs of any alleged barrier removal the business claims it has made. Should advocates ask if the business took a tax deduction or received a tax credit for the barrier removal? If it claims it did, should the advocate take their word or request to read their 1040s? Then come back the next year and start the entire process again on another inaccessible element. And we thought it was difficult to get a ramp with the existing regulations.

The proposed regulations also question whether to fully enforce the Access Board's guidelines for stages, auditoriums, witness stands, assistive listening systems, golf courses, service animals, golf cars, mobility devices, auxiliary aids, captioning, video interpreting services and other areas.

You have 60 days to submit comments. All comments must be sent by 8/18/2008. Refer to Documents ID DOJ_FRDOC 0001-0025 (Title III, Public Accommodations) and DOJ_FRDOC-0001-0026 (Title II, Governmental Programs). You can find these documents at the following web address, as well as submit your comments on-line by going to http://www.regulations.gov.

Steve Gold, The Disability Odyssey continues

Back issues of other Information Bulletins are available online at http://www.stevegoldada.com  with a searchable Archive at this site divided into different subjects. To contact Steve Gold directly, write to stevegoldada@cs.com  or call 215-627-7100.

Facing Life's Traumas to Help Others


Reply to an article about Lynne Garnham, who has written a book after being
diagnosed with M.E. as well as long-standing stress-related illnesses (link
below my signature).

I am concerned that, the way this is written, it will be assumed that M.E.
ALWAYS a stress-related, or psychiatric, illness.

If anyone has the energy to reply, you should go to the online form here
http://www.peterleemail.co.uk/contactus.aspx
tick the box for Editor and make sure you say it is a letter intended for
publication.

Cheers
John
drjohngreensmith@mefreeforall.org

*Peterlee Mail Letters*.

Lynne Garnham is a very exceptional example of a person who has been
diagnosed with M.E. (*Myalgic Encephalomyelitis*) on top of her
long-standing stress related illnesses of anxiety and agoraphobia (*Facing
life's traumas to help others, Peterlee Mail, 17 June 2008*).

The vast majority of people with M.E. started with a viral infection, like
glandular fever, chicken pox or pneumonia; or had a vaccination such as TB,
hepatitis, or polio; or were poisoned by some chemicals, perhaps in the
environment, or due to crop spraying but they did not have a history of
psychiatric illness.

It must not be assumed, therefore, either: that M.E. has a psychiatric
cause, or that M.E. causes symptoms of any psychiatric illness, for example,
clinical depression.

So, while a process of deconditioning, in which Lynne faced her fears, may have helped her (though it doesn't work for everyone), it would not be suitable for M.E. sufferers - what fear have they to face? - and it is illogical to hope that Cognitive Behaviour Therapy (CBT), developed for treating people with psychiatric illnesses, such as anxiety and depression,
will be of any value to them.

There is no evidence that CBT has any lasting benefit, without relapse, for people with M.E. Contrary to the conventions of research, trials are still
going on while CBT is already recommended, a practice that would be quite
unacceptable, for example, in drugs testing.

The more intelligent, scientific, approach would be to properly publicly fund biomedical research, to better understand the cause of M.E. in the hope of suggesting an appropriate treatment, instead of adopting CBT as a panacea, as this government has done because it is fashionable and cheap, albeit unproven and generally ineffective.

Yours sincerely
drjohngreensmith@mefreeforall.org
Dr John H Greensmith
ME Free For All. org

Facing life's traumas to help others (Peterlee Mail, 17 June 2008)

http://tinyurl.com/4nv2yf

 * * *

Too often, erroneous psychiatric explanations are given for the symptoms of CFS.  I started my first business at 14, have always worked, yet was written off by one doctor as "you resent your husband making you work".  His solution was that I stand up to my husband and tell him that I wanted to quit.  No amount of telling the doctor that I had no intention of quitting and wanted him to make me well so I could continue to work had any effect.  As far as he was concerned, I was mistaken if I thought that the "flu" I had in February was responsible for the symptoms I was having in November -- he knew that my symptoms were entirely caused by an argument with my husband. 

A dozen years later, the same symptoms that were supposedly caused by being married were now related to being divorced and would go away if I could just find someone to marry me.  Again, the statement that I had a flu-like illness, and was diagnosed by a virologist, was discounted because it was easier to diagnose a psychiatric problem and hand out anti-depressants than to search out the evidence of a post-viral neurologic condition.

If anti-depressants and psychotherapy are enough to get you back to work, you don't have CFS.  It's that simple.

CFS is not caused by disliking your job or fear of exercise.  It is demonstrably caused by a virus (see prior post on the Viruses Conference), and the only two drugs that have shown any promise in treating it are both anti-virals.

However, there are plenty of doctors who will erroneously diagnose any case of chronic fatigue as CFS, unaware that there are specific diagnostic criteria ... it's more than just feeling tired.  And therein lies the problem -- they issue a misdiagnosis, treat the patient for whatever is actually wrong (depression, blood pressure, thyroid, etc.), and then tout that they have cured CFS when their treatment is successful.  But then the CFS experts who know that their patients have True CFS try the same treatment and it doesn't help, because it's not the right treatment for what their patients have -- it's the right treatment for thyroid or depression or celiac disease.

In the early days of CFS, there was a doctor who got nationwide media exposure for his innovative method of treating CFS patients with medication for low blood pressure, and the suggestion was made that we could do the same at home by increasing our consumption of salt.  Well, even swallowing salt by the spoonful did not cure my problems, and when the CFS experts went to try it on their patients, they found that some of the certified post-viral CFS patients already had high blood pressure and did not need drugs to raise their blood pressure to normal levels. 

Conclusion: this doctor misdiagnosed his patients, mistakenly calling LBP "CFS" so that he could cure them and get his 15 minutes of fame.

Patients' Presence Counts (and other NICE case info)

PATIENTS' PRESENCE COUNTS: NICE - AUTUMN JUDICIAL REVIEW.

Dear All,

The 17 July 2008 UK High Court decision on the NICE ME/CFS Guideline
Judicial Review is a major breakthrough. From the very bottom of my heart:
thank you to all who worked quietly and diligently behind the scenes, gave
of their time, energy, money and support and thank you very much to those
who enabled me to be there. We have a long way to go and a lot to do in a
short time before we have a shot at achieving success but: hope is now
restored. Whilst outcomes are of course not guaranteed, for the first time
in the UK, even though it is on narrow points of procedural law and not on
wider medical science issues, we at long last have the prospect of a fair
hearing before an institution with real power to act in our favour.

Now the really important bit for the hearing itself... the first thing both
counsel and our solicitor said yesterday was they felt the fact that the
court had been full of patients had a significant impact upon the outcome.
Justice Cranston clearly expressed compassion towards ME patients generally
as well as the litigants in particular. Again, this morning, I have been
contacted by our solicitor to say that patient support prior to the hearing
and in the public gallery was crucial. I believe therefore that it is
absolutely imperative our solicitors now try to secure a courtroom with a
large public gallery and we/you all work to absolutely pack it with
well-behaved (that part is very important) and informed patients and carers
for both days of the autumn hearing. If patients cannot attend then send a
relative or friend in your place. Even if so many people attend that some
have to wait outside in the hall this will send an absolutely invaluable
message to the Judiciary, press and beyond.
We simply have to let the
establishment know that we will not go away and we will not stop struggling
until we get proper science, proper medicine, proper care and nothing short
of justice.

PLEASE can folk start organising to attend the hearings now? Spread the word
as widely as possible within the ME community and friends and family. It is
impossible for me to be involved much in this aspect of things myself as I
have to focus on matters legal. Why not consider organising discounted
block-booked overnight accommodation at a nearby travel-lodge or student
residences: perhaps with a coach or two to ferry folk from accommodation to
the court on both days? This is highly doable and would be self-financing by
the individuals. The importance of this hearing cannot be overemphasised.
Please therefore; someone or some team of individuals please get organising!
I know it is a lot to ask but we have got to garb this opportunity one
hundred per cent.

We will let you know dates, times and room number as soon as we know them. I
am afraid that the Royal Courts of Justice building is not particularly
disabled-friendly but I managed to get around in a wheel chair and we should
not be put off. Please, please, please DO go to the hearings if you can and
if you cannot please send someone in your stead. Information regarding court
location, access and services can be found at the web address below.

Many thanks and very best wishes to you,

Kev Short.

http://www.hmcourts-service.gov.uk/cms/list_admin.htm

[Permission to Repost].
- - -

NICE JUDICIAL REVIEW & MEDIA COVERAGE.

Dear All,

I have been advised not to give media interviews prior to
completion of the NICE Judicial Review hearing this autumn. Advice
that I am more than happy to take and all media enquiries on NICE/JR
etc should be directed to our solicitor, Jamie Beagent, at Leigh Day
& Co (see below). I would be most grateful therefore if any of you
are contacted by the media for my personal contact details that you
do not give them out and instead direct the media to the solicitors.
I have been repeatedly contacted by the local BBC. I have also had a
local newspaper reporter knocking on my and my neighbours' doors last
night and wish to avoid this as I have a lot to do and am struggling.

jbeagent@leighday.co.uk
Leigh Day & Co, Priory House, 25 St John's Lane, London,EC1M 4LB.
Tel: 020 7650 1248/020 7650 1240 / Fax: 020 7253 4433 /DX 53326
Clerkenwell
http://www.leighday.co.uk/

Many thanks and best wishes,

Kev Short

- - -

A summary of proceedings that took place in the High Court on Tuesday 17 June 2008 is available in the news section of the ME Association website:

http://www.meassociation.org.uk/content/view/590/70

The news section also contains press items covering this important legal case.

- - -

Jamie Beagent (our solicitor) and (separately) Ian Gibson MP et al were interviewed on: BBC Radio Norfolk:
'Breakfast with Stephen Bumfry'.  Programme: 7am to 10am, Thursday 19 June 2008.

Unfortunately this radio item on ME/NICE JR is not in one block but is scattered throughout the programme.

The main piece is at:
0:20:34-0:29:26 (approx) (Kev Short and Doug Fraser's solicitor, Dr Ian
Gibson MP and a producer (?)
on the program whose nephew has it - E-mail from him read out).

https://download.yousendit.com/75E3CC9025578384

Tom Sheridan, Power broker for those without a voice

Source: The Hill
Date:   June 11, 2008
Author: Roxana Tiron
URL:
http://thehill.com/business--lobby/powerbroker-for-those-without-a-voice-2008-06-09.html


[Business & Lobbying]

Powerbroker for those without a voice
-------------------------------------

Before he took calls from Bono and counted Sen. Edward Kennedy (D-Mass.) as
a friend, Tom Sheridan was a New York social worker getting his feet wet in
Washington with a tough decision to make.

A nascent AIDS advocacy organization in the late '80s asked Sheridan three
times to start the first AIDS lobby in the United States. Sheridan, who at
the time was not openly gay and feared the stigma associated with the job,
repeatedly said no. He turned to his grandmother, a devout Catholic, for
advice, expecting that she would reassure him of his decision.

He didn't count on Mother Teresa.

The famous humanitarian had recently opened an AIDS hospice in D.C., and
Sheridan's grandmother reminded him of this during their conversation. "If it
is good enough for Mother Teresa, why wouldn't it be good enough for you?"
she said at the time. Sheridan listened to his grandmother's wisdom and took
the job with the AIDS Action Council , representing a turning point in his
career as a master coalition builder for social causes.

"There is a great passion he has about doing the right thing," said Rep. Rosa
DeLauro (D-Conn.), who met Sheridan more than 20 years ago during Walter
Mondale's presidential campaign. "He wants to give a voice to people that do
not have a voice. He is indefatigable."

AIDS now is just part of Sheridan's portfolio. Sheridan opened his own firm
in 1991, after several years of what he calls the "best and worst job," at
the helm of the infamous AIDS lobby - a coalition of 140 organizations named
NORA, short for National Organization Responding to AIDS . Sheridan to this
day recalls the job as being "emotionally and physically draining." By 1990,
he was going to at least three funerals a week. He had come out, but felt he
needed a break.

At 30, Sheridan quit the AIDS lobby and spent a month in Africa, climbing
Mount Kilimanjaro, a lifelong dream. When he returned, Sheridan - who was
instrumental in passing the Americans with Disabilities Act (ADA) and the
Ryan White CARE Act - decided that he would never again take on one single
issue.

The Sheridan Group now has a varied portfolio including: the American Cancer
Society; the Chronic Fatigue and Immune Dysfunction Syndrome Association;
Oxfam; and Bono's Debt AIDS Trade Africa (DATA) organization, as well as the
ONE campaign to end global poverty.

Sheridan does not take naturally to stars. The first time Bono called him,
Sheridan thought he was talking with American rocker Jon Bon Jovi. He asked
the Irish legend why a singer from New Jersey would take such an interest in
Africa.

Unfazed by Sheridan's pop culture faux pas, Bono convinced him of his
dedication to the cause. Bono reached Sheridan through Bobby Shriver. Sen.
Edward Kennedy, Shriver's uncle, recommended Sheridan for the endeavor.
Kennedy had worked closely with Sheridan on the ADA legislation and other
health-related issues.

"A lot of celebrities use Washington to distract from other things,"
Sheridan, 47, said in an interview at his office far from K Street. He calls
the area NoMa (North of Massachusetts Avenue) -- his own "New York-ism" for
the still up-and-coming neighborhood by the Washington Convention Center.
"The issue is not getting served, but the celebrity is served by the issue,"
he added. "Bono was not looking to distract the public."

Bono, Sheridan said, comes to Washington several times a year without fanfare
and walks the Capitol hallways armed with facts and concrete results of
previous congressional funding or help. "You can't be an advocate for the
world's poorest people and not show a little humility," Sheridan said of
Bono, who more often than not travels to the Hill without a posse.

Sheridan is now working with singer Ricky Martin on another challenge: human
trafficking and slavery, an issue less talked about, and without an actual
advocacy organization behind it. The Ricky Martin Foundation launched a
campaign against human trafficking, but without Sheridan's experience the
effort may not easily attract political capital. "We are doing for them what
we did for the AIDS lobby: We are building a coalition," Sheridan said.

Those who know Sheridan say that coalition-building is his forte. "Tom is a
tremendous strategist," said Dan Smith with the American CancerSociety
Foundation. "Tom is a master coalition builder; he has a wonderful gift in
trying to find common interest in people."

Sheridan's rise to fame in the non-for-profit community could not have been
more coincidental. Sheridan started out as a social worker in New York with
responsibility over a group home for mentally disabled adults. He quickly
realized that not even zoning permits could be obtained without political
astuteness and decided to go to Washington, the heart of politics.

He started with the National Association of Social Workers in his early 20s,
where he was in charge of setting up a political action committee. He later
joined the Mondale campaign for two years, earning $15 a day. After Mondale's
defeat, Sheridan lobbied for the Child Welfare League . There, he learned
about "border babies": infants born to mothers with HIV who were dying, or
who themselves had HIV. The New York foster care did not know how to manage
these children at a time when everybody was "desperately afraid of the
virus."

Through Sheridan's lobbying, Congress passed legislation to create specialized
foster care programs and high incentives for foster parents willing to take
these children. It was considered the first piece of legislation ever to deal
with AIDS.

Sheridan downplays the significance - sticking with the strategy that got the
law passed. Sheridan underplayed the AIDS issue at the time to get lawmakers
to support it. Ultimately, he made the issue about hospitals and hospital
support, he said. That was enough for the fledgling AIDS community. The rest
is history.

"He brings a fighting spirit and a caring feeling to the people of the
movement he is representing, in a more personal and committed [way] than in
any other original lobbying or formal setting," said Kim McCleary with the
Chronic Fatigue and Immune Dysfunction Association.

McCleary describes Sheridan as an underdog, representing issues that may not
have a chance of being heard. "It's like the David-and-Goliath struggle," she
said. And like David, Sheridan always wins.

--------
(c) 2008 The Hill

Sleep Problems and Thalamic Size

http://www.immunesupport.com/library/showarticle.cfm/ID/8914



Positive relationship between sleep
problems and thalamic size in patients
with Chronic Fatigue Syndrome


Source: American Psychosomatic Society 65th
Annual Meeting, May 2007


by T Lutgert, et al.

ImmuneSupport.com

06-09-2008


[Note: The thalamus is a right and left pair of brain
structures.]


Chronic fatigue syndrome (CFS) is characterized by
disabling fatigue of unknown etiology. Sleep quality
is poor in CFS patients. The thalamus is a key
subcortical structure in sleep disorders and certain
cognitive functions previously shown to be impaired
in CFS patients. We investigated the association
between subjective sleep quality and thalamic size
in CFS.


Twelve right-handed otherwise healthy CFS patients
[patients] and 12 age-, gender-, and handedness-
matched healthy controls completed the Jenkins
Sleep Questionnaire summing up responses on four
items asking for

a) difficulty in initiating sleep,
b) awakening during the night,
c) awakening during sleep with difficulty maintaining
     sleep, and
d) awakening exhausted in the morning despite
     having slept as usual.


Thalamic size was determined by MR-based
volumetry.


Logistic regression revealed that sleep problems
significantly predicted CFS status (OR = 2.66, 95%
CI 1.11-6.38), whereas total thalamic volume and
thalamic size of either side did not.


More sleep problems correlated with greater total
thalamic volume in patients (r=0.62, 95% CI
0.07-0.88, p=0.032) but not in controls (r=-.034,
p=0.30).


In addition, more sleep problems also correlated with
right thalamic size in patients (r=0.70, 95% CI
0.21-0.91, p=0.012) but not in controls (r=-.080,
p=0.81).


The strength of correlations between sleep problems
and total thalamic volume (p=0.028) and right
thalamic volume (p=0.046), respectively, differed
between patients and controls.


We found a positive relationship between more sleep
problems and thalamic volume in CFS patients
compared to non-CFS controls.



The finding provides a basis for further studies on a
possible role of the thalamus in sleep complaints
and fatigue of patients with CFS.

Source: Abstract 1664 from American Psychosomatic
Society 65th Annual Meeting, Budapest, Hungary May
7-10, 2007. (From a pdf of all abstracts, only some
of which have been published, at
http://www.psychosomaticmedicine.org/misc/2007APSabstractsforjournal.pdf ,
by Lutgert T, von Kanel R, Remonda L, Wiest R,
Kiefer C, Begre S. Departments of General Internal
Medicine, Neuroradiology and General Internal
Medicine, University Hospital, Berne, Switzerland.




Dr. Leonard Jason on CFS

Editorship : j.van.roijen@chello.nl
Outgoing mail scanned by AVG AV
~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:


Quotes from below:


*....There is a movement developing around the
world of people using different terms,  and some
are using the term M.E./C.F.S.

The C.D.C. and the CFIDS Association are  two of
the last large organizations in the United States
who have not come aboard....*

``

*....So if your case definition is imprecise and you
blur the categories, and that brings into it people
who dont have the illness, you ultimately have
problems with estimating how many people have
it. ...*

``

*....If you have patient samples that are different,
ultimately what will happen is its very hard to find
genetic or biological markers because theres been
such imprecision in how its been identified. So
what happens is that people say, We cant find
anything, it must be psychogenic....*


~jvr


````````



From: Jill McLaughlin <mclaughlinjill@cox.net>


http://www.nytimes.com/2008/05/30/health/healthguide/esn-chronicfatigue-expert.html?scp=1&sq=chronic+fatigue+syndrome&st=nyt  



New York Times



Expert Q & A




Learning Firsthand About
Chronic Fatigue Syndrome


By DAVID TULLER

Published: May 30, 2008


Leonard Jason is a professor of psychology at
DePaul University in Chicago and the director of
the universitys Center for Community Research.
He is on the  Chronic Fatigue Syndrome Advisory
Committee to the federal Department of Health
and Human Services and is a board member of the
International Association for CFS/ME, an
advocacy group.


Leonard A. Jason, Ph.D



Q: What is it about chronic fatigue syndrome that
makes it so challenging for  many people patients
themselves, doctors, family members?


A: Fatigue is a universal human experience, and in
fact most people are very hard-working and feel
fatigued a lot of the time. And severe fatigue is one
of the most common complaints that people bring to
their physicians. Because so many people have
general fatigue and continue to function, they think,
Whats that? Thats not a disease, its just a fact of
life. So theres a perception both among medical
personnel and the lay public that its something that
you push yourself through, you deal with it.
Theres a
tendency to think, Well, youre stressed out, get
some better sleep, take some antidepressants.

With heart disease or cancer or AIDS, you have an
immediate feeling from your family, your work
associates, your friends, that this is something we
need to be sympathetic to, we need to make
accommodations for. Whats strikingly different
about this illness is that the majority of people not
only have to deal with a particularly debilitating
health problem, they also have to deal with the
stigma and societal reaction and disbelief and
illegitimacy, and that is crushing.
Your work
colleagues say youre malingering, medical personnel
say theres nothing they can find so they'll refer you
to a psychiatrist, and your friends begin to complain
that youre never calling them, you've rejected them.
So this person is in the whirlwind of a terrain of
disbelief that is probably in some ways unique.




Q: Has the perception of C.F.S. changed over the
years?


A: I spend a lot of my time giving talks to audiences
of people I dont know, and I feel its very different
today vastly different than 20 years ago. At that
time, no one had heard of it and there was almost
universal disbelief. Today, that is much, much less. I
dont mean to suggest that there is no skepticism
remaining. Its still present. But it is my opinion that
the people who are skeptical havent really looked at
the literature. Its easy to nurse your skepticism
when you havent really bothered to look.


Q: How much would you associate the skepticism
with the name chronic fatigue syndrome, which is
used in the United States, instead of names like
myalgic encephalomyelitis or myalgic
encephalopathy, which are more common in other
countries?


A: The name is unfortunate. Its a terrible name,
because fatigue is the focus and that is differently
experienced by people who are healthy than by
people who have this illness. I do think if we called
bronchitis or emphysema chronic cough syndrome,
youd probably have very little respect for those
people, but a  name thats more medical sounding
changes peoples perceptions.

When you have a more medical-sounding name,
youre saying the illness is not something fluffy, to
be downplayed and ignored, and health care
personnel think of it as more serious, more
debilitating. I hope there will be a new name, but
the problem is you dont change names lightly, even
bad names, because people  come to recognize an
illness by a name. I think changing it will confuse a
lot of people, so it better be a new name that has
broader acceptability among  patients and
researchers.

There is a movement developing around the world of
people using different terms,  and some are using
the term M.E./C.F.S. The C.D.C. and the CFIDS
Association are  two of the last large organizations
in the United States who have not come aboard.



Q: There are many people who think C.F.S. is just a
form of depression. Whats the connection between
the two?


A: The fast answer is, if you want to do a quick
diagnostic test, you could say, If you were well
tomorrow, what would you do? And the person with
C.F.S. would  give you a list of things that they want
to get back to in their life, and the  person with
classic depression would probably say, I dont know.
Eighty percent of people who have depression have
fatigue, but its not their most serious complaint.
They might have sleep problems, and some
cognitive  problems that are common, and they can
end up being brought into the case definition for
C.F.S.

Some people with this disease do have depression.
If you  basically have a person who says they were
feeling pretty good, now theyre sick, and then they
get depressed, they could have depression as well as
the illness. The real critical problem is when you
have a person who has solely depression and does
not have this illness, but has fatigue. So if your case
definition is imprecise and you blur the categories,
and that brings into it people who dont have the
illness, you ultimately have problems with
estimating how many people have it.



Q: Why does the estimateof how many people have
the illness matter?

A: This all goes back to case definition. If it includes
people who dont have the illness, some might say
that at least there are advantages to that because
it gives C.F.S. higher rates and more attention. So if
there are millions of people with this illness, it might
make the policy people take it more seriously. I think
one needs to be wary of that, because if you do
research with this broader group of people, and some
of them dont have the illness, and the  question is
what is the biologic data, how do you interpret that?
If you have patient samples that are different,
ultimately what will happen is its very hard to find
genetic or biological markers because theres been
such imprecision in how its been identified. So what
happens is that people say, We cant find anything, it
must be psychogenic.



Q: You were diagnosed with C.F.S. many years ago.
How did that affect you?

A: That triggered my interest. I got C.F.S. in 1990
after having mononucleosis, and ended up having to
leave my work for about a year and a half. I said to
myself, Well, gee, if this is affecting me like it is, I
should try to do some research. I knew a little bit
about it, beforehand, and then I started reading  the
literature.

The epidemiology done by the C.D.C. was
atrocious. What I read was that this was  an
extremely rare disorder that affected less than
20,000 people, that it was  primarily psychological,
that it affected primarily upper-middle-class
people, that it had a case definition that was put
together by consensus and not by research
methods, and that it had a name that was pretty
trivializing. The prevalence research was very
poorly done. The tests they were using were
inappropriate and had a real bias for psychiatric
morbidity. I realized that one  needed to do basic
work in diagnostics and basic work in
epidemiology. I looked  at it and said, Hey, Ive got
enough work here for the next decade. It was a
real work opportunity for me.



Q: How did you recover?


A: I would say that it was a very slow process. I had
the good fortune that most  people dont have, in
that I had resources. I was a tenure-track professor
with a good income who had people rooting for me,
and nobody every questioned me or said youre
making this up, or its not serious. Everyone knew I
was a very hard worker, and they wanted me back.

How many people who get sick with this have that
opportunity? So they made it possible for me to build
myself back up. I had  benefits and a full salary. I
had a work setting, and a friendship setting and a
support setting that most people dont have. Most
people, the first thing that happens is they lose their
job, and then they dont have enough money. Im still
somewhat careful about how much I do and what I
commit to. I think of myself as being 70 to 80
percent back, not 100 percent.





Publish date: 5/30/2008

Copyright 2008 The New York Times Company


Don't be a victim of medical errors by Elizabeth Cohen/CNN

 
http://www.cnn.com/2008/HEALTH/07/17/ep.surgical.errors/index.html 

Solid numbers are hard to come by, because most states don't require doctors to report surgical errors. To make sure you're not the next victim, you might have to get pushy, like my husband did.

"You need to be that thorn in their side," said Dr. Samuel Seiden, an anesthesiologist who's co-author of a study on surgical errors. "You will catch things. You might also frustrate the nurses, but you have to look out for yourself."
 
5. Train someone to be your advocate

Don't just bring a friend or family member to your surgery; train them to advocate for you. You're likely to be anxious and a little addled before the surgery (not to mention asleep during it), so you'll need help.

So, how did my husband know to follow Tip No. 4, before he had the chance to read his lovely wife's column? He says it was just common sense -- and his submarine training. When you give an order in a submarine, the other person repeats it back to you, and then you repeat the order again. In engineering lingo, it's called creating a "closed loop."

* * *

Many medical errors are a result of miscommunication. 

I'd say maybe my problems wouldn't have happened if I had followed this advice and asked the doctor to repeat back to me what he thought he heard but, in fact, the handwritten notes taken during the appointment are accurate, indicating that he heard exactly what I said about my prior diagnosis.  It's the typed notes that introduce the false/erroneous statements -- the doctor didn't like what he heard so he did some creative writing in order to support the conclusion he wanted to reach, and hoped that noone would ever go back to the original handwritten notes to see where he twisted my words.

Similarly, the doctor who prescribed something I already knew didn't help is contradicted by his own report, which says on page 1, that I had already tried that and it didn't help.  It wasn't miscommunication, it was definitely an error in the doctor's thought process.  Although he wrote down what I said at the beginning of the appointment about things that I'd already tried, he wasn't actively listening so it didn't sink in that what he usually prescribes to patients with my symptoms had already been tried without success.

Read Dr. Groopman's "How Doctors Think" -- an indictment by a doctor of the medical culture, which should be required reading in every medical school in order for the students to be aware of how medical errors come about, and how to prevent them.

Unfortunately, doctors are human and humans make errors.  Equally unfortunately, some of those errors occur despite the patient giving the doctor all the necessary information to get it right, because the doctor has already leapt to a conclusion and isn't really paying attention to anything the patient says.

As Dr. Seiden says, you have to nag until you're sure that the doctor has in fact correctly heard what you said.  If the doctor doesn't know how to differentiate CFS from depression and treats you for the wrong one, he's not the one who's going to pay the price with a lifetime of pain and disability.  It's YOUR life and health that's on the line; if he makes a mistake, it doesn't affect him at all.   You can inconvenience him for a few hours with a deposition in a malpractice lawsuit, but his malpractice insurance will pay the judgment, not him.  Since you're the one who will suffer, you must take responsibility for doing everything possible to ensure that the doctor has given you the correct diagnosis and the correct medication for that condition.