Friday, November 27, 2009

Poetry Book to benefit CFS charities

http://www.lees7.co.uk/Birches/Newsletter_pdf/2009_09_Sep.pdf

[Photo available on the site]

A former Eldwick resident, Lois Owen,
who died earlier this year aged 34, left
behind numerous paintings, poems and
writings. Her draft text of a book
dedicated to improving the quality of life
for those confined to their beds or
housebound due to illness or disability is
in the process of being edited.


However, a selection of her poems
has already been produced. Poems
range in mood, subject and structure
and something of Lois' creativity,
exuberance, compassion and faith, as
well as her anguish and suffering, can be
evidenced in this selection.


The booklet of poems costs £2.50 and
all proceeds will be divided between
three charities:

• M.E. Research UK which funds
biomedical investigation into the causes,
consequences and treatment of
M.E./C.F.S.;

• Action for M.E. which provides
information and support for M.E.
sufferers and campaigns for more
research, better treatments and greater
understanding of M.E.;

• 25% ME Group which is a support
group for severely affected M.E.
sufferers and of which Lois was a
member.

Lois battled with a severe form of M.E.
for over 19 years. The initials M.E. stand
for 'myalgic encephalomyelitis' but the
illness is more accurately termed
'myalgic encephalopathy' (muscle pain
and abnormality of brain function).

Despite her disability, Lois gained a First
Class Honours degree at the University
of Derby and established the first
therapeutic arts service for
disadvantaged and vulnerable people in
Derby called Arts in Action.

Anyone wishing to obtain a copy of
the booklet of poems can do so by
ringing (01274) 770797.
(TK: That's the number for UK residents; for outside the UK, it's +44 1274
770797 e.g. in some countries, one would dial 0044 1274 770797 and from the
US, 011 44 1274 770797)


On Baildon Moor in 1994

Take me high upon a hill
Where cows stand and sway
Ignorant and silent,
Where the wind hushes and rushes
Wildly through my hair,
And I let it.

Take me high upon a hill
Where the grass grows terse and brown
And the air is young
And the landscape lies stark and lone.
There I'll find a place
Of solitude.

Take me high upon a hill
Where white ponies gallop slow,
Like a dream below,
Where the drones that come and go
Do not enter my world.
I do not care.

Take me high upon a hill,
Up Spring Lane, not far,
To rouse my senses and lull my mind,
From where I left my sorrows
Far behind.






Has CDC lost its credibility?

There is a new topic on the CDCchatter.net board on the CDC and XMRV (and Swine
Flu).

Jill

--------------------------------------------

-- Has the CDC lost its Credibility with the American public? --

Posted by: Anonymous on Sunday, November 22, 2009 - 02:32 PM 121 Reads

The CDC seems to be taking some major hits with its credibility and reputation
with the American public. Changes in H1N1 reporting numbers did not help with
public perception. See ABC News and their reporting on CDC three-fold increase
OVERNIGHT of H1N1 numbers - "Seeming Overnight Surge in H1N1's Death Toll:
Number Change Underscores Uncertainty About Virus" Http://abcnews.go.com/Health/
SwineFluNews/h1n1-deaths-triple-overnight/story?id=9057650).
An increase in deaths from 1,200 to 4,000 made in one day by the CDC does not
look very good. Add to this the fact that the seasonal flu kills 36,000 people
by comparison and the CDC looks even worse in reliability of data and analysis
-- and possibly hype. The numbers of people who refuse to get the H1N1 vaccine
are large and show that the public does not trust what the CDC says – regardless
of the possible complications of getting the virus. And then there is the XMRV
virus discovery in October by the Whittemore-Peterson Institute in Nevada that
put a very hot spotlight on the CDC's work on Chronic Fatigue Syndrome. The
Internet websites and blogs seemed to explode overnight with vitriolic attacks
against the CDC and conspiracy theories abounding.

Has the CDC lost its credibility with the public? Has the reputation of the CDC
been badly damaged? Why are some of our best and brightest researchers leaving
in large numbers? Is it fear for their reputations and careers with the
association of CDC on their resumes or something else altogether?

Is there a problem internal to the CDC or just the perception of inadequacy of
the CDC by the media and public?

Thoughts on the above would be greatly appreciated.

Full article: 'Has the CDC lost its Credibility with the American public? ' (494
bytes more)

URL of the CDC chatter thread:
http://www.cdcchatter.net/index.php?name=News&file=article&sid=782  
 
* * *
 
Yes, it appears that the rest of the public is starting to find out what we've known all along, that once CDC takes a position on something, it is loathe to change that position, even when more information comes along.







Thursday, November 26, 2009

Finally, some GOOD news from CDC

Please encourage CFS patient and
professional groups to engage with CDC in it's XMRV replication efforts


Dear All,

At the October 2009 CFSAC meeting held in Washington D.C., Dr. Nancy
Klimas raised concerns about CDC's XMRV replication effort to CDC
ex-officio Dr. Michael Miller, noting special concern in regards to
potential patient cohorts CDC might be using in their study. Dr.
Klimas noted that the only samples CDC has available to it are from
the Georgia GCRC and Wichita, Kansas population studies, both of which
used the 2005 'Empirical' definition for selecting participants. Dr.
Klimas went on to note that CFS prevalence rates which CDC devised
using the Empirical definition are highly inflated from previous
estimates. This concern is supported by research conducted by Prof.
Leonard Jason of DePaul University on the Empirical definition, which
found the Empirical definition does in fact include people with other
illnesses in place of CFS such as depression.

In his response to Dr. Klimas, Dr. Miller stated that the CDC CFS
program is not in charge of the CDC XMRV replication effort and if Dr.
Klimas had concerns she and others should contact CDC's retroviral
program which is in charge of conducting the study and "be a part of
this" by offering well-defined patient samples.
However Dr. Miller's
emphasis seemed to be on the fact that CDC's CFS program was not in
charge of the replication effort which was not the concern raised by
Dr. Klimas, but rather the fact that CDC was using GCRC and Wichita
samples which were obtained using the Empirical definition which
focuses on 'unwellness'.

Dr. Klimas-
"I would ask you please, as the boss, to be careful how this is done,
it could do tremendous damage if it's done badly. Tremendous damage.
To get cohorts that are very cleanly described, very clear, and not
just the population based broad cohorts that you have in your freezer,
which is what you have in your freezer and all that you have in your
freezer, rather you let some of us that also have very well defined
cohorts in our freezers that were defined in a research setting for
comparison."

Dr. Miller's response-
"...we are hoping that for those who are interested, as you certainly
have patient samples available, that if you are interested, I think
you should contact the retrovirus laboratory and offer those samples
and be a part of this. I think you will find an interest there."

I suggest that we as CFS patients, who are the ones with the most at
stake in this matter, approach as many CFS patient, professional and
research organizations as possible, both in the US and abroad, to
request that they to follow up on these concerns with CDC's
retrovirology program to voice their concern regarding CDC's
'Empirical' patient group and to offer well defined CFS patient
samples for CDC to include in it's XMRV replication effort. As has
been said before, an ounce of prevention is worth a pound of cure.

Email addresses for various organizations-

US- Canada-
CFIDS Association of America- CFIDSLink@cfids.org
National CFIDS Foundation- info@ncf-net.org
IACFS/ME- Admin@iacfsme.org
National ME/FM Action Network- ag922@ncf.ca
UK-Ireland-
25% ME Group- enquiry@25megroup.org
MERUK- meruk@pkavs.org.uk
CFS Research Foundation- cfsresearch@btconnect.com
ME Association- meconnect@meassociation.org.uk
Irish ME/CFS Association- info@irishmecfs.org
Irish M.E. Trust- info@imet.ie
Blue Ribbon for the Awareness of ME- info@brame.org
Tymes Trust(website)- http://www.tymestrust.org/contactus.htm
INVEST in ME- info@investinme.org
AUS-NZ-
ME/CFS Australia- mecfs@mecfs.org.au
Associated New Zealand ME Society- info@anzmes.org.nz
Europe-
European ME Alliance(website)- http://www.euro-me.org/index.html
European Society for ME- post@esme-eu.com
ME/CFS Foreningen- mail@me-cfs.dk
Norges Myalgisk Encefalopati Forening(website)-
http://www.me-forening.no/index.php
Riksföreningen för ME-patienter- info@rme.nu
Association Francaise du Syndrome Fatigue Chronique et du
Fibromyalgie- cfs-spid-asso@wanadoo.fr
CFS ASSOCIAZIONE ITALIANA- cfs@cro.it
Fatigatio e.V. Bundesverband Chronisches Erschöpfungssyndrom-
info@fatigatio.de
ME/CVS Vereniging- reactie@me-cvsvereniging.nl
ME-Platform- ME-Platform-beheer@reijenga.xs4all.nl
 







Wednesday, November 25, 2009

Klimas Clinic opens Dec. 4

The time has finally arrived!  Dr. Nancy Klimas will open the new
Chronic Fatigue & Immune Disorders Research and Treatment Center
(Chronic Fatigue Center for short) in December.  Located in Kendall at
8720 N. Kendall Drive, Suite 108, Miami FL 33176, the clinic will begin
seeing patients on Friday, December 4th.  Clinic days will be Mondays
and Fridays for the near future.  The clinic is a private fee-for
service clinic, meaning that full payment will be requested at the time
of service, and forms will be given to you to submit to your own
insurance provider.  Labs will be drawn at the clinic but will be billed
directly through your insurance provider.  For more information, visit
the web site at www.cfsclinic.com .  If you have any questions or want
to make an appointment, email the clinic at info@cfsclinic  or call
305-595-4300.

The Chronic Fatigue Center is a private clinic, separate and apart from
the CFS Clinic at the University of Miami, so everything at UM will
remain the same.
 
 
  





Message from CFIDS.org

Getting "Right" and Giving Thanks

Seven weeks ago, a consortium of researchers at the Whittemore Peterson Institute,
Cleveland Clinic and the National Cancer Institute published results of a study
linking XMRV, a human retrovirus, and CFS. XMRV had previously been linked to an
aggressive form of prostate cancer.

This Oct. 8, 2009 publication in Science continues to attract worldwide media attention
and has ignited interest in CFS from many disciplines within the scientific community. As Dr. Daniel Peterson stated at the Oct. 29, 2009 meeting of the federal CFS Advisory
Committee, "XMRV is a scientific stimulus package for the field of CFS research." We couldn't agree more. Congratulations to the team led by Dr. Judy Mikovits at
the Whittemore Peterson Institute and inspired by the Whittemore family, especially
Andrea Whittemore-Goad, who has suffered with CFS for 20 years since age 11.

In recent weeks, the U.S. Department of Health and Human Services has formed an
interagency task force that is meeting regularly to replicate the XMRV findings, address validation
studies, develop appropriate screening and diagnostic tests, and address the safety of the blood supply. There has not yet been a formal statement from the
Department about this interagency effort, but the National Cancer Institute (part
of the National Institutes of Health) posted an informational question-and-answer
page about XMRV on November 18, 2009. More information from the federal agencies
is expected soon, especially on the topic of blood safety.

Numerous follow-up studies are reported to be under way at academic centers and
government labs in the U.S. and other countries. On November 11, the Cleveland Clinic hosted a meeting of researchers studying XMRV
in prostate cancer, CFS and other diseases. Last week, the Medical Research Council of the U.K. held a meeting on CFS/ME at which XMRV studies were discussed. These investigators are proceeding
cautiously to ensure that their results are comparable to the initial study based
on the characteristics of patients and controls tested, and the laboratory methods
and procedures utilized. Although it's tempting to pass along rumors about which
groups might have found positive and negative results in samples they've tested so far,
we will await published data from authoritative sources before posting updates.

Response from the CFS community to the initial study, media reports and burgeoning
online discourse has run the gamut from salvation to skepticism, from relief to
fear, from euphoria to panic. These varied and dynamic reactions have created communications
challenges, as organizations and individuals have tried to keep up with the latest
news and separate data from opinion and rumor from fact. With the many channels
by which people now receive information, new sites have sprung up and existing ones
are busier than ever. We're using a combination of new and traditional media to
keep our constituency informed. Content, tone and timing are all important and,
at times, we acknowledge that we have gotten only one of the three completely right. And we recognize that these missteps have created some questions and strong feelings
about our response to the XMRV study. Be assured that we share the hope and anticipation
that these important findings will lead to immediate advances in diagnosis and treatment. And know that we're listening to feedback, shared both directly and indirectly,
with us. We're constantly working to refine our messages to ensure that we deliver
the factual, focused communications you count on.

On this Thanksgiving eve, we express gratitude for the dedicated efforts of all
researchers, professionals, and volunteers who seek to advance understanding of
CFS, including the team led by the Whittemore Peterson Institute. We are most grateful
for the sacrifices of donors at all levels who have sustained the CFIDS Association
of America over the past 22 years and who share our relentless determination to
make CFS widely understood, diagnosable, curable and preventable.

For more information about the topics mentioned above, please visit http://www.cfids.org/XMRV/default.asp#info.

With warm wishes for a peaceful Thanksgiving holiday,

Kim McCleary
President & CEO
The CFIDS Association of America
November 25, 2009

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Our Mission:
For CFS to be widely understood, diagnosable, curable and preventable.

Our Strategy:
To stimulate research aimed at the early detection, objective diagnosis and effective
treatment of CFS through expanded public, private and commercial investment.

Our Core Values:
To lead with integrity, innovation and purpose.
 






Tuesday, November 24, 2009

Expert Answers on Chronic Fatigue Syndrome - Consults Blog - NYTimes

 

Are There Two Viruses Linked With Chronic Fatigue Syndrome?

Q.

Dr. Klimas: I really want to know more about what you think of the specific findings of Dr. DeFreitas. Do you think there are two retroviruses associated with Cfids? I know there needs to be more study, but do you have an educated guess as to how they interact and if they are causative or just epiphenomena?

For example, if this were solely hypocondriasis or conversion disorder, I would want to know so I could start therapy on it.
Justin Reilly

A.

Dr. Klimas responds:

Elaine DeFreitas's work and that of Dr. Michael Holmes of New Zealand both involved scanning electron micrographs of viruses. Their findings look a great deal like those that were published in the recent Science article by Dr. Lombardi and colleagues, which Ms. Grady wrote about in The Times,) that found a possible link between chronic fatigue syndrome and the XMRV retrovirus. Could they be looking at the same virus? I don't really know, because I am not a laboratory virologist. But it makes good sense to me.

I remember in the early 1990s a member of our laboratory, Dr. Roberto Patarca, found evidence of production of an enzyme called reverse transcriptase in our cell cultures, more evidence of an active retroviral infection. So the key thing now is for another reputable lab to find the same thing in chronic fatigue syndrome. Then we will see what happens next.




Monday, November 23, 2009

Notes on XAND and XMRV

 





Deadline extended on Bell Lecture

To all who are planning to attend Dr. Bell's lecture on December 6, 2009 in Batavia NY:

Please note the Holiday Inn has extended the deadline for room reservations at the reduced rate of $72 double and $92 suite to Monday NOVEMBER 30TH.

You must specify "Lyndonville Research Group" to get the discounted rate.

----------------------------------------------------------------------------

David S. Bell/Lyndonville News
www.DavidSBell.com
12851 Roosevelt Highway
Lyndonville, NY 14098
USA
 





 

Sunday, November 22, 2009

An Essay on ME/CFS and Psychology

ME/CFS Australia's latest blog entry is "An essay on ME/CFS and Psychology".



We discuss the role of psychology in ME/CFS and acknowledge the important
role that psychologists and psychiatrists can play in assisting some people
cope with ME/CFS. We ask for clarity concerning the role of psychology and
ask health practitioners to begin to take into consideration the iatrogenic
harm that comes from a healthcare system
which has not always dealt well
with this 'emergent' condition. Public health officials, psychologists,
psychiatrists and consumer groups can work together to provide a narrative
that brings healing to patients.



This post can be accessed at: http://wp.me/pGhFq-3i   



Subscribe
http://feedburner.google.com/fb/a/mailverify?uri=MeCfsAustraliasBlog&loc=en_US%22  to this Blog via email

-------------------------------------------------------------------
Paul Leverenz
Chairman, ME/CFS Australia
www.mecfs.org.au  
e: pleverenz@mecfs.org.au  

  
* * *
Dr. Klimas has noted that many patients go to a doctor with CFS and come out with Post-Traumatic Stress Disorder, caused entirely by the way the doctor acted toward them.
 
Sophia Mirza was so turned off by the way doctors had treated her that she didn't want a doctor called even when she was dying.  Many patients have very nearly reached that point; if I could write my own prescription refills, I wouldn't ever see a doctor, either.




Free Coloring Book!

[It is best to view the press release at the site, with the nice images
which can't be seen in a plain text message like this.  Also different
sections in the press release use different font types.  I think this could
also be useful to explain the illness to a child when an adult has it e.g.
I'm going to ask my sister to consider showing it to my nephew (7). Tom]


http://www.me-cfs.info/Diverse/Press%20visit.pdf

www.me-cfs.info
PRESS RELEASE
New book, free download: http://www.me-cfs.info/born.htm

16th November 2009, Contact: Vivian@me-cfs.info

Visit ME SMEA's Colouring Book
Text and layout: Vivian Hvenegaard
Sketch: Vivian and Frederikke Hvenegaard

===========

SMEA's Colouring Book, Visit ME, is dedicated to children with Myalgic
Encephalomyelitis - Post Viral Fatigue Syndrome - Chronic Fatigue Syndrome
(ME/CFS, G93.3) and to children who know somebody suffering from this severe
disorder.



==========

Hi, nice to meet you, how are you?

I'm SMEA, the little forest slug who lives in a big and beautiful tree in
the wood called Slugwood. That's where all the other forest slugs also live.

I have been affected by ME for quite some years now and I've still not
recovered, but I'm certainly better now than I was years ago.

I love colouring sketches. I was thinking that you also might like to
colour, so therefore here is my new book without colours! Then you can paint
the drawings, like you want them to be.

Please, come into the wood with me and see how we live..

You can download my Colouring Book, Visit ME here:
http://www.me-cfs.info/born.htm

=========

Originally, the Christmas drawings in Visit ME, SMEA's Colouring Book were
meant as a sequel to the children's book SMEA Life at a Snail's Pace
published in Denmark in 1999. However a decline of the author Vivian
Hvenegaards ME put an end to the huge work with drawing and painting
materials for a new book, and the project was shelved for many years.

The inspiration to the stories about SMEA and the snail-symbol of the Danish
ME/CFS Association developed years ago when Vivian's youngest daughter
Susanne and a friend, both affected by ME, made a snail race. Among the
audience where Dr. David Bell and Jill Moss the founder of AYME in England,
both were guest speakers at a ME-workshop in Denmark.

The two girls had the viewers by the palm of their hands while they were
having a lot of fun making the snails' race properly and in the right
direction. Quite some snails were disqualified, as they tried to take an
easy ride on the houses of their competitors.

The name SMEA was formed from the initial letters of the four youngest ME
children diagnosed with ME in the Danish ME/CFS Association back in the late
90's, whereas DEKS were the initials of the four youngest children in the
association in 2007 which, incidentally, happened to be boys.

When Frederikke, who is Vivian Hvenegaards oldest daughter, went on
maternity leave in 2007, Vivian asked her if she might fancy making some
additional drawings for a colouring book.

Frederikke is qualified as a designer in the clothing industry. In her spare
time she is an art performer. She also has a thorough knowledge of ME, as
both her parents and a sibling were affected by ME in 1995. Consequently she
had to provide her ME family with much practical help, and has been a great
blessing for them, especially during the first tough years when the disease
was exacerbating.

Vivian Hvenegaard is the owner and editor of the website www.me-cfs.info
which publishes information and news about ME and CFS in Denmark.

Visit SMEA at: http://www.me-cfs.info/born.htm  (free download)

Visit Frederikke's Art Gallery at www.GalleriHvenegaard.dk
 





Dr. Bell to Lecture Dec. 6 in NY -- Tickets Available

Lecture on XMRV and CFS/ME/Fibromyalgia



Public Lecture, December 6, 2009 in Batavia, NY on XMRV and ME/CFS


Because time is getting near, I wanted to give an update on the XMRV lecture in Batavia on December 6, 2009. I have received many letters saying that they did not want to drive from Toronto or Syracuse if there would not be tickets available. So we have put together a way to buy tickets on the website. Actually, "we" is not appropriate as I am computer illiterate. Debbie in our research group has been working with Carrie, our webmistress (who donates all her activities, by the way).

So the lecture will be from 2 pm to 5 pm at the Holiday Inn of Batavia NY (8250 Park Road, Batavia, NY 14020), right next to the NY State Thruway. Tickets may be purchased via the web site. (http://www.davidsbell.com/DSBEvents.htm#tickets)

If one wishes to stay at the Holiday Inn, there will be rooms available at the reduced rate of $72 double and $92 suite.  Holiday Inn guarantees the room rate if booked by November 23rd. After that it's back to regular rates. Specify: Lyndonville Research Group.  Click here to make your reservations.

The cost at the door the afternoon of the lecture will be $15. I have absolutely no idea of how many persons will be coming, and the Hotel needs an estimate. They can accommodate up to 400 persons with advance notice.

I do not want to get people's hopes up too high. Officially I will say that the association between XMRV and CFS/FM/ME is "being studied and has not been proven". I will have no new information on treatment, just ideas of where this may go. We will not be taping the lecture as it is expensive and I expect the material is likely to change rapidly over the next six months. Material will be presented from the Science paper, Dr. Dan Peterson's testimony at the CFS Advisory Committee meeting, our hopes for a study to help confirm these findings, and lots of interesting stuff.



Research Trials


This material is taken from a WPI announcement. Clinical trials will likely be an important direction for the future, but do not expect results quickly.

New treatment strategies for immune modulation and antiviral strategies have been successfully developed for chronic inflammatory disease over the last decade. Each of these drugs has had to undergo extensive investigation before obtaining approval for general use.

A critical need is sub grouping the spectrum of neuro-immune disease in order to stratify patients according to the appropriate therapy. The current translational and clinical research studies at WPI have clinical trials as endpoints. While WPI currently has no open clinical trials, when trials are initiated they will offer patients the opportunity to participate in clinical trials that are designed to test the effectiveness of new forms of therapy. Clinical trials are voluntary, and our team will only involve patients who are entirely comfortable with the process.

Another critical need is a comprehensive database of patients with information on your diagnosis, conditions, family health and similar items. You can help by completing the research questionnaire and including your information for our researchers to study.

All clinical trials conducted here at WPI are approved and closely monitored by the University of Nevada's Institutional Review Board (IRB). No WPI staff have any financial interests or holdings in the various pharmaceutical companies who produce drugs used to treat chronic diseases.

If you would like to be considered for participation in current or upcoming clinical trials, and include your information in our research database, please complete this research questionnaire-
http://www.wpinstitute.org/patient/volunteer_form.html

For more information, please contact:

Research Program Coordinator
Whittemore Peterson Institute
6600 N. Wingfield Parkway
Sparks, NV 89436
patientinfo@wpinstitute.org



Tax Deductible Contributions to Lyndonville Research Group


If you wish to make tax deductible contributions to the Lyndonville Research Group, please mail your checks to:

The Connecticut CFIDS and FM Association, Inc.
PO Box 3010
Milford, CT 06460

800-952-2037
860-659-3651

Checks must be made out to THEM. In the "memo" should be written "Dr. Bell's Research".  Then they will mail us 100% of the donation.


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To Subscribe: If you wish to either subscribe or unsubscribe to the Lyndonville News, go to http://www.davidsbell.com/DSBJoin.htm and enter your information. The e-mail subscription is free.

Disclaimer: Any medical advice that is presented in the Lyndonville News is generic and for general informational purposes only. ME/CFS/FM is an extremely complex illness and specific advice may not be appropriate for an individual with this illness. Therefore, should you be interested or wish to pursue any of the ideas presented here, please discuss them with your personal physician.

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© 2009 David S. Bell