Thursday, March 11, 2010

March Webinar

Join us for our March webinar

"Going With the Flow -- Blood Flow, That Is"
 
Please join us for our third 2010 Webinar!
 
Thursday, March 18, 2010
12:00 p.m. (Eastern) - 1:00 p.m.
Guest Speaker: Marvin Medow, PhD, New York Medical College
 
It has long been established that many people with CFS experience symptoms like light-headedness associated with upright posture, broadly called orthostatic intolerance. Is it possible that these symptoms could be connected to impaired blood flow, ultimately reducing the amount of blood that flows to the brain? That's what researcher Marvin Medow, PhD, and his team at New York Medical College are investigating with their grant from the CFIDS Association of America.

Dr. Medow is a physiologist and associate director of the Center for Hypotension at New York Medical College, where he works with Julian Stewart, MD, a longtime CFS researcher.

At this webinar, Dr. Medow will describe his study and the techniques his team uses to measure blood flow and chemical changes that may explain many of the symptoms experienced by CFS patients. You'll learn more about orthostatic intolerance, tilt table testing, transcranial Doppler and microdialysis. Suzanne D. Vernon, PhD, scientific director of the CFIDS Association of America, will moderate the program.

This program is the third in the CFIDS Association's 2010 webinar series. To learn more about webinars in general, please visit
http://www.cfids.org/webinar/what-is-a-webinar.asp. Past Association webinars are described and archived at http://www.cfids.org/webinar/series2010.asp.
 
Participation is limited to 1,000 people. Please register now at https://www1.gotomeeting.com/register/817083361
 

Thought for the Day

 
 





CFS Facts on Facebook

 

  





XMRV statement from Dr. Enlander

ESME IVWZ

KBO: 0817.905.582


In October the Whittemore Peterson Institute in Nevada published a report on
the presence of XMRV virus in the ME/ CFS patients. This report, published
in Science, created much excitement in the medical world and in the media.
The report suggested the aetilogy of ME/CFS was indeed a physical disease,
tending to change public opinion.

However, we must temper this excitement with careful research that
replicates or denies the thesis. This new research must be careful to
replicate or deny the original research with a large cohort of patients and
controls.

There are numerous groups with their own agenda who wish to confirm or deny
the original research. Large government grants and insurance disability
interests are at stake. These groups have rushed to publish unsatisfactory
comparative research with anecdotal results
, based on small number of
ill-defined patients, stale specimens and differing research methods.

It would be helpful if there was a collaborative effort to test a
significant number of the same specimens in different research centers.
Perhaps 200 Fukuda criteria and Canadian criteria patients and controls
could be divided and tested in multiple centers in a double-blind trial to
replicate or deny the original research. It is time for the psychological and physical researchers to collaborate rather than cast aspersions on each other's work. ESME would support such collaboration.

Dr. Derek Enlander



*The European Society for ME is a non-profit group, operated entirely by
volunteers. You can support ESME with a donation by visiting: **
http://esme-eu.com/donate/category114.html


*Your donation will go directly to our goals of educating doctors and
helping scientists to solve the puzzle of ME/CFS:
www.esme-eu.com

* * *
I started to be taken more seriously after a fibromyalgia clinical trial gave me a C-Reactive Protein test, then deemed me "too sick" for the clinical trial. 
 
C-Reactive Protein demonstrates infection/inflammation, without identifying the exact cause.  Good for viruses that don't have a test yet.  Suddenly, this was not just all in my head any more, even though we still don't know whether it's XMRV or something else.


Wednesday, March 10, 2010

Get paid to fill out CFS Questionnaire

I want to urge everyone reading this (who has a fatigue illness, whether ME-CFS, Lyme or Fibromyalgia) to complete this survey. We need to establish that we are not depressed, emotionally wacked out individuals. This is a battle we will have to fight until we win!



Here is the description and links to the survey:
Unexplained Chronic Fatigue Questionnaire Study - Volunteers Needed

Individuals who have had severe, unexplained fatigue for at least six months and who have no serious abnormalities on medical tests are wanted for a study of chronic fatigue. Patients who qualify for the study will be asked to complete three questionnaires over a six month period. Participating in the study will not alter the treatment that your physician gives you. The purpose of the study is to evaluate whether patients treated by certain types of physicians improve faster than patients treated by other types of physicians. If you may be interested in participating in this study, please contact the study coordinator, Kathleen O'Connor at (801) 587-4741. For more information email kathleen.oconnor@hci.utah.edu or visit our website at https://hci-as2.hci.utah.edu/CFSurvey/app

We will send you $25 if you complete two questionnaires, one given to you at the time you enroll and a second given to you three months later. We will send another $25 to you for completing a questionnaire six months after you enroll. If you need to get results of your laboratory tests from physicians other than the physician who told you about this study, we will give you an additional $15 for giving us the results of all of these tests.

LDN and MS, CFS, fibromyalgia

*Note:* Low Dose Naltrexone (LDN) has proven effective for some patients in
a number of diseases including MS, CFS and fibromyalgia. Two members of the
About.com community have written about LDN. On the Multiple Sclerosis blog
by Julie Stachowiak, Ph.D. she said she began LDN after "... couple of bad
relapses, none since starting Copaxone, but *worsening, horrible, awful,
brain-numbing **MS-related
fatigue<http://ms.about.com/od/signssymptoms/a/fatigue_over.htm>
*, which is driving me to do *something*."
http://ms.about.com/b/2009/04/21/julies-low-dose-naltrexone-journal-preparation.htm
Journalist Adrienne Dwello on About.com: Fibromyalgia & CFS has also written
about LDN.

http://chronicfatigue.about.com/od/treatingfmscfs/p/LDN.htm

2010 European LDN Conference: LDN can be used as effective treatment for
people with MS 10. March 2010 03:09

People with MS (Multiple
Sclerosis<http://www.news-medical.net/health/Multiple-sclerosis-%28MS%29.aspx>)
and others suffering with a range of often debilitating inflammatory
conditions such as Chronic Fatigue
Syndrome<http://www.news-medical.net/health/What-is-Chronic-Fatigue-Syndrome.aspx>and
Fibromyalgia, will take heart from advances in treatment for their
conditions, and will follow events at The 2nd European LDN Conference with
interest.

"Following the success of last year's inaugural conference, we are returning
to Glasgow. There have been a number of important developments in the past
year and this year's conference is set to be a landmark event."

Taking place in Glasgow on 24th April, 2010 at the Thistle Hotel in
Cambridge Street, The 2010 European LDN conference is again organised by Dr
Tom Gilhooly of the Essential Health Clinic in Glasgow with support from
Linda Elsegood and the LDN Research Trust. According to Dr Gilhooly,
"Following the success of last year's inaugural conference, we are returning
to Glasgow. There have been a number of important developments in the past
year and this year's conference is set to be a landmark event." The
conference is sponsored and supported online by BIG ON Glasgow.

LDN – Low Dose Naltrexone – was initially developed as a treatment in the
United States in the 1980s. Working with opiate addicted patients, it was
realised that in low doses, Naltrexone could actually be used to increase
endorphin levels, effective in the treatment of MS. It was first used as a
treatment for MS in 1985.

As an MS sufferer, Linda Elsegood spent two years bed-bound until treatment
with LDN enabled her to regain the use of her motor skills. She set up the
charity LDN Research Trust with the aim of increasing awareness and to raise
funds for clinical trials. The LDN Research Trust has a database of over
3,000 people using LDN treatments in the UK.

As one of the small number of practices administering LDN in the UK, Dr
Gilhooly and his fellow GPs at The Essential Health Clinic are hoping to
raise the profile of LDN. Dr Gilhooly comments "LDN treatment can aid a
better quality of life for both long-term sufferers and those newly
diagnosed. I hope the conference will result in many more patients becoming
aware that this could be a treatment for them."

The conference will attract leading medical professionals and patients
interested in the use of LDN in several conditions including Multiple
Sclerosis<http://www.news-medical.net/health/Multiple-sclerosis-%28MS%29.aspx>,
Chronic Fatigue
Syndrome<http://www.news-medical.net/health/What-is-Chronic-Fatigue-Syndrome.aspx>and
Fibromyalgia, Crohn's Disease, IBS, Parkinson's Disease and
Autism <http://www.news-medical.net/health/What-is-Autism.aspx>
among
others. Dr Jarred Younger of Stanford University will present some of his
exciting findings on the use of LDN in Fibromyalgia and will highlight
several patient testimonies on the subject.

The conference will also look at the relationship between LDN and CCSVI, the
new vascular disorder causing much excitement in the world of MS. Where
CCSVI fits in with LDN in the treatment of MS and other auto-immune
disorders will be the centre of discussion and debate.

SOURCE Cision
http://www.news-medical.net/news/20100310/2010-European-LDN-Conference-LDN-can-be-used-as-effective-treatment-for-people-with-MS.aspx





DSM-V criteria -- vague "fatigue" definition

The comment period for the proposed DSM-V criteria for the APA ends April
20, 2010. Persons interested in commenting on the highly problematic and
vaguely defined  Complex Somatic Symptom Disorder might also wish to note
that CFS patients are not the only patients whose "fatigue" is unrelated to
the definition promoted by Somatic Distress Disorders Work Group member UK
psychiatrist Michael
Sharpe http://ww2.psych.org/MainMenu/.../DSMIV/DSMV/.../MichaelSharpeMD.aspx%20
of "a feeling of lack of energy, weariness, and aversion to effort" (Mead 2007) or
depression.  Fatigue is common symptom of several dozen medical diseases
unrelated to a psychosomatic disorder. In CFS specifically, according to
Carruthers et al (2003) also known as the Canadian Consensus Criteria for
Chronic Fatigue Syndrome/myalgic encephalomyelitis, "fatigue" is an
inappropriate label because the fatigue experienced in ME/CFS is not
normal fatigue whereby energy is promptly restored with rest.

Additionally, in the first half of the decade disability insurance
conglomerate UnumProvident was the subject of multiple law suits brought by
the states of New York, Georgia and California, as well as corrective
regulatory measures brought on behalf of the states of Maine, Massachusetts
and Tennessee. At issue were claims practices that incorrectly listed
multiple diseases under mental disorders including Parkinson's Disease,
Multiple Sclerosis, Chronic Fatigue Syndrome among others primarily because
medical symptoms were incorrectly deemed psychosomatic. This allowed the
insurer to either deny benefits due or restrict payouts to the two years of
payments allowed for stress or mental disorders rather than paying a life
time of benefits as is required for organic diseases.

UnumProvident is but one of the many insurance companies listed under
conflicts of interest by Dr. Sharpe.

As Carol S. North MD, MPE former member of the Committee on Gulf War and
Health: Physiologic, Psychologic, and Psychosocial Effects of
Deployment-Related Stress noted in one study, "...Identification of
somatization
disorder requires the ability to rule out medically based explanations of
symptoms. Only when medically based etiologies can be confidently dismissed
can symptoms be considered somatoform, and assessment cannot
proceed without it." (North 2002)

The totality of the biomedical research is steadily growing and enough
studies provide a medical explanation that such etiologies cannot be
"confidently dismissed."

Dr. North also notes (North 2002) the methodological failures of many of the
checklists and scales used by psychiatrists results in "...the failure to
exclude medical explanations for the symptoms contaminates the desired
somatization data with somatic symptoms of medically based conditions,
thereby overestimating somatization." Dr. Leonard Jason and IACFS president
Dr. Fred Friedberg also note that many of the fatigue scales used have a
ceiling effect whereby they are appropriate for the non-patient population
but do not have the capacity to measure the severity of pathogenic fatigue.
http://www.cfids.org/archives/2002rr/2002-rr4-article02.asp

Below is but one study of patients with Parkinson's Disease which
illustrates some of the points noted above. Others can be found relating to
fibromyalgia and Gulf War Illness.

*Fatigue in levodopa-naive subjects with Parkinson disease.***

Schifitto G, Friedman JH, Oakes D, Shulman L, Comella CL, Marek K, Fahn S;
Parkinson Study Group ELLDOPA Investigators.

Collaborators (139)

BACKGROUND: Fatigue is a common complaint in Parkinson disease (PD). We
investigated fatigue in a cohort of previously untreated patients with early
PD enrolled in the Earlier vs Later Levodopa (ELLDOPA) clinical trial.

METHODS: A total of 361 patients were enrolled in the randomized,
double-blind, placebo-controlled ELLDOPA trial and assigned to receive
placebo or carbidopa-levodopa 37.5/150 mg, 75/300 mg, or 150/600 mg daily
for 40 weeks, followed by a 2-week medication washout period. Subjects who
scored >4 on the Fatigue Severity Scale were classified as fatigued. PD
severity was assessed using the Unified Parkinson's Disease Rating Scale
(UPDRS), Hoehn-Yahr scale, and Schwab-England Activities of Daily Living
Scale. A subgroup of subjects underwent [(123)I]-beta-CIT SPECT to measure
striatal dopamine transporter density.

RESULTS: Of the 349 ELLDOPA subjects who completed fatigue measures, 128
were classified as fatigued at baseline. The fatigued group was
significantly more impaired neurologically (UPDRS, all subscales and Hoehn
and Yahr staging) and functionally (Schwab-England Scale) but no significant
differences were observed in beta-CIT measurements between the two groups.
Analysis of covariance showed a greater increase in fatigue score from
baseline to the end of the 2-week washout in the placebo group (0.75 points)
than in the three groups receiving levodopa (increases of 0.30 [150 mg/day],
0.36 [300 mg/day], and 0.33 [600 mg/day]; p = 0.03 for heterogeneity).

*CONCLUSIONS:* Fatigue is a frequent symptom in early, untreated,
non-depressed patients with Parkinson disease (PD), affecting over 1/3 of
the patients in this cohort at baseline and 50% by week 42. Fatigue was
associated with the severity of PD, and progressed less in patients treated
with levodopa.
Neurology. <javascript:AL_get(this,%20'jour',%20'Neurology.');> 2008 Aug
12;71(7):481-5.






CFS / MS / LDN Conference

http://www.cisionwire.com/glasgow-health-solutions-ltd/conference-offers-hope-for-people-with-ms

Glasgow Health Solutions Ltd
9 Mar, 2010 19:48 CET

Dr Tom Gilhooly GP , Essential Health Clinic

Conference offers hope for people with MS.

The European LDN Conference will be held in Glasgow on 24th April 2010.

People with MS (Multiple Sclerosis) and others suffering with a range of
often debilitating inflammatory conditions such as Chronic Fatigue Syndrome
and Fibromyalgia, will take heart from advances in treatment for their
conditions, and will follow events at The 2nd European LDN Conference with
interest.

Taking place in Glasgow on 24th April, 2010 at the Thistle Hotel in
Cambridge Street, The 2010 European LDN conference is again organised by Dr
Tom Gilhooly of the Essential Health Clinic in Glasgow with support from
Linda Elsegood and the LDN Research Trust. According to Dr Gilhooly,
"Following the success of last year's inaugural conference, we are returning
to Glasgow. There have been a number of important developments in the past
year and this year's conference is set to be a landmark event." The
conference is sponsored and supported online by BIG ON Glasgow.

LDN - Low Dose Naltrexone - was initially developed as a treatment in the
United States in the 1980s. Working with opiate addicted patients, it was
realised that in low doses, Naltrexone could actually be used to increase
endorphin levels, effective in the treatment of MS. It was first used as a
treatment for MS in 1985.

As an MS sufferer, Linda Elsegood spent two years bed-bound until treatment
with LDN enabled her to regain the use of her motor skills. She set up the
charity LDN Research Trust with the aim of increasing awareness and to raise
funds for clinical trials. The LDN Research Trust has a database of over
3,000 people using LDN treatments in the UK.

As one of the small number of practices administering LDN in the UK, Dr
Gilhooly and his fellow GPs at The Essential Health Clinic are hoping to
raise the profile of LDN. Dr Gilhooly comments "LDN treatment can aid a
better quality of life for both long-term sufferers and those newly
diagnosed. I hope the conference will result in many more patients becoming
aware that this could be a treatment for them."

The conference will attract leading medical professionals and patients
interested in the use of LDN in several conditions including Multiple
Sclerosis, Chronic Fatigue Syndrome and Fibromyalgia, Crohn's Disease, IBS,
Parkinson's Disease and Autism among others. Dr Jarred Younger of Stanford
University will present some of his exciting findings on the use of LDN in
Fibromyalgia and will highlight several patient testimonies on the subject.

The conference will also look at the relationship between LDN and CCSVI, the
new vascular disorder causing much excitement in the world of MS. Where
CCSVI fits in with LDN in the treatment of MS and other auto-immune
disorders will be the centre of discussion and debate.

The conference website www.bigonldn2010.com  contains the agenda,
registration form, venue details plus more information, news and videos on
LDN. BIG ON Glasgow will film and post the conference oline. The website
also offers the opportunity to join BIG ON LDN forums.

For more information contact Ramsay McLellan on 08700 53 6000 or email
ramsay@essentialhealthclinic.com
Visit www.essentialhealthclinic.com

Glasgow GP Dr Tom Gilhooly, an Omega-3 expert, has been at the forefront of
research into the relationship between nutrition and a number of common
medical conditions, including mental health issues. At his Glasgow Practice,
The Essential Health Clinic, Gilhooly treats people suffering from MS,
Crohn's disease and other hard-to-treat conditions with Omega-3, with
impressive results.

Visit www.essentialhealthclinic.com

Tuesday, March 9, 2010

With new medicines, doctors don’t know what works best

 

  





iGive : Raise money for Whittemore Peterson Institute

 
 
You are currently supporting: Whittemore Peterson Institute

To date, you've raised $11.59 for your chosen cause(s).
Please allow up to 30 days (after the shipment/travel date) for your purchase and resulting donation to be credited to your cause automatically.

Your current cause has raised: $315.91
 
 
Everyone, please use this link whenever you need to search for something online.  Not only does each search raise funds for XMRV research, but they sometimes find things that google doesn't.
 
Please also start your shopping through iGive.  Many stores will donate a percentage of your purchase to your chosen charity, and some have coupons on the website, which helps you, too!
 

Monday, March 8, 2010

Interview with Sophia Mirza's mother

[I'm just sending the link to this to see if we can get it into the top 10
most read. Tom]

Real life: The long goodbye

Devoted mum Criona Wilson helplessly watched on as chronic ME took the life
of her daughter Sophia. Now, she is fighting to raise awareness about this
debilitating illness

http://tinyurl.com/ykjwtzc  i.e.
http://www.independent.ie/health/case-studies/real-life-the-long-goodbye-209
1686.html 
 






 

Ciguatera

Dear Fellow Patients,

Since we began to fund research into ciguatera eight years ago, our federal
government has never mentioned the work despite repeated publications of 
replicated work and despite the lead researcher being the expert consultant
to  every agency on the federal level in this area.  That fact has changed
with  a publication by Robert W. Dickey, the Director of Food Safety at the
FDA. 

Although a marker for ME (CFIDS) does not exist, those testing positive to 
the assays are above 95% including those diagnosed with "CFS", ME, 
organophosphate poisoning, and PVFS.  The numbers are close to 800.   The
"ciguatera epitope", as it was dubbed, is named since the careful testing  showed
there were minute differences between ciguatera and what has now been  found to
be a marker for autoimmune diseases. 

The medical article is on our website (_http://www.ncf-net.org_
(http://www.ncf-net.org) ).  The testing  protocol is also available under "Research We
Have Funded" and "Ciguatera" while  the anesthesia protocol can be found
under "Resources" and "Patient/Physician  Info". 

For better health,

Gail Kansky
President, National CFIDS Foundation, Inc.
103 Aletha Rd.
Needham, MA 02492-3931
781-449-3535
http://www.ncf-net.org




Sunday, March 7, 2010

What's old is new again?

What's old is new again?


May be reposted.

With the renewed interest in retroviral causes of M.E. and Bill Reeves
moving on with his psychological studies, I thought this would be the
perfect time to add an interesting video to the RESCIND website. It's a 1996
story featured on Prime Time Live to coincide with the debut of Hillary
Johnson's book, Osler's Web. Featuring a zany cast of characters like
Stephen Strauss indicating that CFS is psychological, Bill Reeves calling it
hysteria, and Phil Lee stating that he believed a retro virus could be
involved and the government is making progress! Why did you throw us under
the bus, Phil?

Notible cast members include Paul Cheney, David Bell, Elaine DeFreitas,
Hillary Johnson as well as patients from the Tahoe and Lyndonville
outbreaks.

It's stated in the video how little progress had been made up until 1996 and
it's disconcerting how little progress has been made since.

I'll be trying to post more of these historical videos as time and health
allows.

Jerry
http://www.rescindinc.org