#65~ CFSAC + ME/CFS/FM "Awareness DAY" Today !!

  This Wonderful Week actually started off with Mother's Day and many children delivered much love to their mothers in the way of Donations to the Whittemore Peterson Institute to HELP raise money for the URGENTLY Needed research to help everyone in a MORE timely manner... 
Kudos to all of the children and Mothers that came thru and Gave 

what you KNEW was needed and NOT just more things.. you gave 

so that you could have more YEARS with which to LOVE the person in whose name you donated...

Bless you all~ WAY to GO !!!

We are Officially in the middle of AWARENESS WEEK and it is  

TODAY International 2010 ME/CFS/FM Awareness DAY !! 

(including actually ALL Neuro Immune Diseases)

Then on Monday we had the full 1 day CFSAC meeting in Washington DC, was NOT ONLY attended the FIRST TIME EVER by the Asst. to the Sec. of the Dept. of HHS, Dr  Howard K. Koh, but he was actually ON the Agenda for a

"Welcome Statement from the Assistant Secretary for Health"

I want to THANK the person that made these videos available for the World to SEE.

Here is Dr. Wanda Jones PhD., Dr. Howard Koh~HHS,
and the CFSAC members & ex-officio members.
These are all shown here as ONE Segment with the 
"money quotes" in the 3rd part...

My thought in including these here was for those people that were unable to watch the CFSAC meeting LIVE and also for those around the world that would like to get a look at the USA  CFSAC, and this might be a good section to show and SHARE with those you Wish to MAKE AWARE "This WEEK of ME/CFS" this might HELP speak for you....






As you can tell THIS got the Week off with a Grand manner..
not exactly a CURE yet.. but an IMPORTANT STEP for CFS in the USA.

The CFSAC made quite a few recommendations that 
will be going to the HHS for Review and Reply~

They recommend that all people diagnosed with CFS do NOT donate blood~ PERIOD.

They recommend that the HHS Secretary include the education and training of medical providers for CFS in Health Care Reform.

They  categorically "Reject" the attempt to classify CFS as "Psych" in the ICD.

They also made many motions that have to do with their charter, but these I believe were the MOST Important to the patients and public.

Many other videos are already on youtube and many of the written testimonies are available via .pdf download HERE

Some of the Highlight Testimonies I also would like to share with you are as follows :

Annette Whittemore from WPI ~



We received Testimony from Nancy McGrory Richardson, Education and Outreach Director for Hemispherx Biopharma that Makes Ampligen...
explaining the FDA new requests and how they are progressing.



One Patient Testimony I REALLY wanted to bring to you was from
Dr. Mary Schweitzer PhD. Please listen to her points..


Another Testimony I wanted to you hear was from
Dr. Fred Friedberg PhD President of IACFS/ME




The activities and communications are coming FAST and Flurious
and I am adding many MORE "NEW" patient Blogs to this blogroll..for your places to go for commraderie and possible info that might help you. I've also added more to the Herbs/Meds section. I am listing these for INFO only and I am NOT advising you to take anything w/o your Dr's advice.

If you have NOT downloaded a Ribbon anywhere to add to whatever you need it for to HELP Raise Awareness PLEASE feel FREE to download one of the ones I have added at the Top and you can also still add a Twibbon to your avatar by using the Twibbon's shown. We know you by your Ribbons ♥


How many have added a BIG BLUE RIBBON to your 
lamp post or tree out front.
..to Raise Awareness in your neighborhood?

Another member, Diane Martin, from "down-under"
has also created a flyer (above) you MAY download and print and Pass OUT to your friends, Dr's office waiting rooms, any place you thing you can set some..
Thanks Diane ♥♥♥


Many folks that are having Birthdays during this time and month are
asking that everyone instead of giving them Birthday presents to 
Please Donate to  the WPI so more research can be done to HELP us quicker.


Please if you ARE a Mother or have a child donate  in their name
as many Mother and children ARE effected.. Mostly 60% Females.


http://www.wpinstitute.org/help/help_donation.html

The week is getting off to a GREAT start.. let's WRITE DOWN all the Ideas of things we aren't doing NOW so we can organize and DO THEM next year for SURE, OK?

Hope the rest of the week continues as good as the first part and that I have MORE to report back soon...

**GO TEAM GO**

#64~ Letter to the Editor by Dr Judy Mikovits~XMRV+ U.K.

Letter to the Editor

---

Judy A. Mikovits, PhD, Director of Research, Whittemore Peterson Institute, Reno, Nevada

    Since the publication of the Science article in October 2009 concerning Xenotropic murine leukemia-related virus (XMRV) in patients with chronic fatigue syndrome (CFS) (1), there have been three PCR-only papers published that have been unable to detect this agent (2-4). As these papers have generated questions concerning the presence of XMRV in persons with CFS, we wish to document the precise methods used when XMRV was amplified from the patient samples. We would urge researchers not to rely solely on DNA PCR on unactivated PBMCs, and offer our assistance if needed.

Why are reports of negative PCR studies occurring?

    The first possibility is that like HTLV-1, and unlike HIV-1, the worldwide distribution of XMRV is low, particularly in Europe, and that chronic disease such as CFS may have varied environmental triggers in different parts of the world. In our subsequent work since the publication of the Science paper, we have found XMRV in persons from around the world and we think this explanation is unlikely.

    A second possibility is that there is more sequence diversity in XMRV than previously reported. That is, because of strain differences, PCR detection will occur only if the primer sequences employed are correct for that particular strain. However, PCR sequences generally are from conserved regions of the viral genome, so this explanation may also be unlikely.

    The replication rate for XMRV could be very low and/or the levels could fluctuate in a given individual over time. This explanation may apply for individuals, but would be unlikely to apply to large numbers as the three negative studies have used. However, if any of the last three are true, single round PCR of genomic DNA isolated from PBMCs, using primers based on published sequences from using highly specific PCR based on the sequence of a single molecular clone, (VP62) might not result in the amplification of XMRV, even from an infected individual.

    A fourth explanation is that peripheral blood mononuclear cells might not be the main reservoir for the virus. It should be noted that early in HIV infection, PCR of peripheral blood mononuclear cells will not detect the virus, as the reservoir is in macrophages. It is only later that CD4 cells become infected and PCR of peripheral blood becomes positive. From in vitro studies we are aware of tropism of XMRV, however no full investigation of in vivo tropism has been carried out to date. There are other possible explanations for the disparity of results between the Lombardi et al study and the PCR-only studies which are currently being explored.

    However, despite the current assumption that PCR answers all questions, there are serious flaws in this assumption, and PCR-only papers are rarely published without supporting data. For this reason, the Science paper employed several other biologic technologies in asserting that XMRV is an infectious retrovirus, and a human pathogen linked to persons with CFS. It should be noted that the question of XMRV "causing" CFS was never discussed in the Science paper.

    Because of these issues, we will describe below the methods we and other investigators currently use to reproducibly detect XMRV. Because we wish to accurately share technical information, the following will be quite technical, and possibly difficult for clinicians. Again we would like to offer any assistance we might be able to give in discussing these methods.


AMPLIFICATION METHODS FOR XMRV DETECTION:

1) REVERSE TRANSCRIPTION (RT)-[PCR]

    To avoid problems with laboratory DNA contamination, we perform nested PCR with separate reagents in a separate laboratory room designated free of high copy amplicon or plasmid DNA. Negative controls (absence of added cDNA or DNA) were included in every experiment. Two methods are used. TRIzol method is used to extract RNA. PBMC (2-5 million) or plasma (250 μL) are added to 1 mL TRIzol reagent (or 750 uL TRIzol LS reagent) and RNA prepared according to manufacturer’s instructions. The final RNA pellet was suspended in 14 to 30 μL of RNase-free water, and quantified using the Quant-iT RiboGreen RNA (Invitrogen). Reverse transcription (RT) with SuperScript VILO cDNA synthesis kit (Invitrogen), cDNA was made by a mixture of oligo d(T) and random primer with 2.5 μg total RNA. Subsequent optimization of the nested PCR revealed that an increase in starting template leads to a reduction in false negatives. 

    Identification of XMRV gag and env genes was performed by PCR in separate reactions. Reactions were performed as follows: 750 to 1000 ng DNA/cDNA, 2 μL of 25 mM MgCl2, 25 μL of HotStart-IT FideliTaq Master Mix (USB Corporation), 0.75 μL of each of 20 μM forward and reverse primers in reaction volumes of 50 μL. For identification of gag, 419F (5’-ATCAGTTAACCTACCCGAGTCGGAC-3’) and 1154R (5’- GCCGCCTCTTCTTCATTGTTCTC-3’) were forward and reverse primers. For env, 5922F (5’- GCTAATGCTACCTCCCTCCTGG-3’) and 6273R (5’- GGAGCCCACTGAGGAATC AAAACAGG-3’) were used. For both gag and env PCR, 94 °C for 4 min initial denaturation was performed for every reaction followed by 94°C for 30 seconds, 57°C for 30 seconds and 72 °C for 1 minute. 35 cycles was performed followed by final extension at 72°C for 2 min. For second round PCR, annealing was performed at 54°C for 35 cycles. Six μL of each reaction product was loaded onto 2% agarose gels in TBE buffer with 1 kb+ DNA ladder as markers. PCR products were purified using Wizard SV Gel and PCR Clean-Up kit (Promega) and sequenced.

    Alternatively, in the first round of PCR, cDNA is synthesized followed immediately by the first round of PCR amplification using USB Taq polymerase and master mix according to the manufacturer’s instructions, using 0.5 ug RNA as template and the previously described GAG-O-F (F542) and GAG-O-R (R1153) as the sense and antisense primers, respectively (1). The second round of PCR was performed using 5 ul of the reaction mix, the primers GAG-I-F (F603) and GAG-I-R (R1015) using 0.5 ul USB Taq polymerase and Invitrogen PCR buffer, supplemented with an additional 0.5mM MgCl2. The PCR products were then separated on a 1% agarose gel, and the PCR products of the expected size (413 bp) were recovered with a QIAEX II gel extraction kit (Qiagen) and sequenced. Using a similar approach for the amplification of env sequences using previously described primers only resulted in the amplification of a small percentage(gag positive samples.


2-VIRAL AMPLIFICATION BY TRANSMISSION TO LNCaP (Biological amplification)

    Two methods are used to detect virus following transmission to LNCaP cells. The first uses nested PCR: Plasma from 20 mL of anti-coagulant blood is flash frozen and PBMC isolated by ficoll-hypaque density centrifugation. The PBMC are activated for three days RPMI-1640 medium supplemented with 10% fetal calf serum, 2 mM glutamine, 1 mM sodium pyruvate and antibiotics supplemented with PHA (1 μg/mL) and IL-2 (20 units/mL). In 15 mL centrifuge tubes, 5 x 105 detached LNCaP, 1 x 105 activated PBMC free of IL-2 and 50-250 μL of autologous plasma in 250 μL of RPMI complete media are centrifuged for 10 min at 1500 rpm. The entire contents of the cell pellet are cultured in a T-25 flask in complete RPMI 1640 media for 4-5 days until the LNCaP cells are confluent. DNA is then extracted from the cells and nested PCR for gag is performed as previously described. A companion negative normal donor is always run under the same conditions.
  
3-VIRAL ISOLATION

    Cell-free plasma (100-150 μL diluted to 300 μL with serum-free tissue culture media) is added to a six-well culture plate with the LNCaP cell line (30-50% confluent). Negative normal plasma is included in one well in each plate as a control. The plates are centrifuged 5 min at 1500 RPM, rotated 180o to prevent drying out part of the culture and centrifuged again for 5 min. It is important to minimize toxicity in the plate and conditions will vary with type of centrifuge used. Each well is given 3-4 mL of complete RPMI. For cell-cell transmission, 1 x 106 PBMC given PHA but no IL-2 are added to a six-well culture plate with the LNCaP cell line (30-50% confluent) are centrifuged and cultured as above. For PCR determination the cell/plasma samples are culture for 5 days then harvested. For viral isolation, after overnight incubation, the plasma/PBMC is removed and fresh media is added. The cultures are grown until confluent, expanded by transferring to T-75 flask. Productive virus isolation is determined at passage 2 by immuno-blotting or PCR detection and sequencing.

        In sum, we have had success in identifying XMRV with the above methods. We remain confident that XMRV is linked to CFS and further studies are proceeding. We are aware that the research concerning XMRV's role in persons with CFS and other neuro-immune illnesses is in its infancy, and eagerly look forward to emerging knowledge in this field.



1.    Lombardi V, Ruscetti F, Gupta J, Pfost M, Hagen K, Peterson D, et al. Detection of an infectious retrovirus, XMRV, in blood cells of patients with chronic fatigue syndrome. Science. 2009;326(5952):595-89.
2.    Erlwein O, Kaye S, McClure M, Weber J, Wills G, Collier D, et al. Failure to detect the novel XMRV in chronic fatigue syndrome. PLoS ONE. 2010;5: e8519. doi:10.1371/journal.pone.0008519.
3.    Groom H, Boucherit V, Makinson K, Randal E, Baptista S, Hagen S, et al. Absence of xenotropic murine leukaemia virus-related virus in UK patients with chronic fatigue syndrome. Retrovirology. 2010;7(10 [Epub ahead of print]).
4.    Kuppeveld F, de Jong A, Lanke K, Verhaegh G, Melchers W, Swanink C, et al. Prevalence of xenotropic murine leukaemia virus-related virus in patients with chronic fatigue syndrome in the Netherlands: retrospective analysis of samples from an established cohort. BMJ 2010;340(doi:10.1136/bmj.c1018).
*************************************************
Also for those in the U.K. ♥♥♥

"We are having an independent phlebotomy company draw samples in the UK in the next two weeks if you or others would like to participate send me your addresses and contact info ASAP. Yes we will resume blood draws next week and all 200 participants will be drawn in the next few weeks and all the studies will be done This project is our highest priority! It is going very well and being done efficiently. I hope this addresses your concerns

Best wishes, Judy"'

#63~ Dr.David Bell's Appeal- send $10 to WPI - ASAP

Dr. Bell makes a personal appeal to send funds to WPI to speed progress of research

David S. Bell MD, FAAP
Lyndonville, NY 14098

May 1, 2010

To my friends with ME/CFS,

I would like to put out a personal appeal for funds to be sent to the Whittemore-Peterson Institute (WPI) in order to speed up the progress of the current research. Here is my reading of a very complex situation.

Medical authorities, educational institutions, governmental agencies, and most practicing physicians have disrespected and minimized CFS in just about every way possible, from creating an insulting name for the illness to advising extreme caution in treatment, except cognitive behavioral treatments.

It is easy to dismiss my remarks to follow by saying that I am biased. And it is true, I am very biased and for twenty-five years I have quietly sat on the sidelines believing that science will win out and true progress will be made. I am beginning to think this has been a great mistake. The profession I love has failed miserably.

In 1985 an outbreak of CFS hit Lyndonville, NY, and affected 210 persons, 60 of whom were children. The official response from the CDC and the New York Health Department was that this was mass hysteria. No one talked with a single patient. In 1990 I worked with Dr. Elaine DeFreitas and Dr. Paul Cheney and a retrovirus was found and the material published(1). A second paper had been accepted by PNAS and contained a photograph of C-type retroviral particles from a tissue culture of spinal fluid of one of the children in the Lyndonville outbreak. This paper was suddenly pulled and not published after a couple of flawed negative papers. A complete description of these troubled times is in Osler'sWeb by Hilary Johnson. The funding for our studies was pulled and all work on this abruptly stopped.

I think the same tactics are being employed to hamper the current work on XMRV by the WPI. The WPI is a private organization and, as I understand it, no federal grants or funding has been forthcoming. There have been three negative PCR-only studies, which have established only that CFS cannot to be superficially studied. At this time no study that has attempted to replicate the WPI study has been heard from. Many CFS research organizations have declared publically that "XMRV is a dead issue."

Nothing is farther from the truth. I cannot predict the future, but my fear is that the current political and scientific organizations who do not want to see retroviral involvement will attempt to stifle studies on XMRV in CFS. Huge amounts of money are spent on studies on cognitive therapy, and studies proving that CFS is heterogeneous (you can argue that polio is heterogenous).

We have not heard from the CDC, other than the inappropriate comment that this was not likely to turn out to be anything, made right after the Science paper publication in October 2009. We are now eight months later and not a peep. Maybe they are finding XMRV and want to be very careful. Maybe they haven’t looked and are assuming that this heretical idea will blow away. Eight months? 
And the Band Played On.

It is possible that thirty other labs are finding XMRV in CFS or that no one else in the world is even looking for it. Science requires that labs do not disclose their findings prior to publication and I agree with this rule. But is the WPI going to be isolated by the scientific community and wither away because of lack of funding? Is XMRV going to become more of the compost of CFS research?

But there is an alternative. We cannot wait ten years for science to grind outs its conclusions. Every person in the world who believes that CFS is important should send $10 to the WPI. I plan to send $10 today. It may not be much, but it is a start. There may be 10 million persons in the world with CFS. Lets see, that’s…I need a calculator. May 12 is our day. Lets do this.

After 25 years of work in this field I do not have much. But I have my integrity. I feel that WPI has made an important discovery and I feel they are an ethical organization, they are not padding their pockets. But I also have my fears. And the greatest fear of all is that their discovery may not be appropriately followed up.

For the 9,999,999 other people out there who think CFS is both real and important, send $10 to: Whittemore Peterson Institute, 6600 N. Wingfield Parkway, Sparks, NV 89436.


Thank you.

David S. Bell MD, FAAP


1. DeFreitas E, Hilliard B, Cheney P, Bell D, Kiggundu E, Sankey D, et al. Retroviral sequences related to T-lymphotropic virus type II in patients with chronic fatigue immune dysfunction syndrome. Proc Natl Acad Sci. 1991;88:2922-6.

#62~ NEW Members of the CFSAC, brief UPdate

As you ALL know by now the CFSAC will be meeting on May 10th, 2010 Wash DC
and it will be Open to the public and will be webcast.  http://videocast.nih.gov. 

Realplayer is required to view the webcast, and 
I "HIGHLY Suggest" you download it at least the day BEFORE and Make sure it works OK...
The meeting will also be archived for future viewing on the CFSAC website.

I have posted the hours and agenda in a previous post. 

Here's ANOTHER Testimony submitted  for the meeting:
The CFIDS Association submitted a 5-page written statement:
http://www.cfids.org/advocacy/cfsac-testimony042610.pdf. 
CEO Kim McCleary will attend the meeting and will present an abbreviated
form ( aka 3 minutes) of these recommendations during the public testimony.

*******************************************
NEW CFSAC Committee Members:

Dane B. Cook, PhD
Madison, WI
Term: 05/10/10 to 05/10/14 (new)

Eileen Holderman
Galveston, TX
Term: 05/10/10 to 05/10/14 (new)

Michael Houghton, PhD
Danville, CA
Term: 05/10/10 to 05/10/14 (new)

Susan M. Levine, MD
New York, NY
Term: 05/10/10 to 05/10/14 (new)

Gailen Marshall Jr., MD, PhD
Jackson, MS
Term: 05/10/10 to 05/10/14 (new)

Wow...5 NEW Members as of this next meeting Date?
I wonder who they are and what their credentials are?
And how much of the past CFSAC History they are familiar with? A little written background would be appreciated since they are Representing us, ya know?
A link with a brief Bio "would have been" REALLY Nice ♥
Do any of you know who these folks are? P_lease let us know if you do...OK? Thx


Please remember to get your Blue Ribbon for your online avatar so HELP Raise Awareness for ME/CFS/XAND ~ ASAP ♥
 

#61~ Annette Whittemore CFSAC Testimony 5/10/2010

Written Testimony Submitted to the CFSAC by Annette Whittemore/WPI  for the CFSAC May 10, 2010 meeting.

Reprinted with permission from the WPI.

Whittemore Peterson Institute

Testimony of Annette Whittemore

CFSAC

April 25, 2010

The United States governmental entity responsible for alerting and protecting the American public from threats to their health is the Centers for Disease Control, better known as the CDC.  The CDC’s mission is to collaborate to create the expertise, information, and tools that people and communities need to protect their health – through health promotion, prevention of disease, injury and disability, and preparedness for new health threats.

Yet, one to four million Americans still suffer from a poorly understood, debilitating disease which was first identified in the United States in three separate recorded outbreaks over 25 years ago, including:

Incline Village, Nevada

Lyndonville, New York and

Miami, Florida.

The individuals who became ill that year came from various economic classes, different age groups, including children and adults and affected people in a small rural town, a large lakeside community and a huge metropolitan area.   The individuals in those outbreaks all exhibited the same complex symptoms, yet none of the patients were examined by the government employees who were sent to investigate. 

The doctors who alerted the CDC were not told of the other communities in the United States experiencing the same phenomenon.   Despite the serious concerns about the severity of the patient’s symptoms and their rapid decent into disability, the CDC refused to investigate further.  The CDC concluded that this was a new form of EBV mono.  They convened a meeting, in which they decided to call this illness “chronic fatigue syndrome” rather than adopt the name that was being used in the UK: myalgic encephalomyelitis (M.E.).  M.E. at that time was already a well characterized infectious neurological disease causing a similar complex illness.

Thus began a twenty five year battle between patients and doctors who fully realized the severity of this illness and a government that has yet to commit an appropriate level of financial resources to aid the discovery process necessary to help individuals with this disease.  Not only has the lack of adequate resources been a major road block to discovery, but the CFS scientific review committees are currently ill-equipped to review many of the biologically complex scientific grant requests.  Attempts to engage in biological research by basic researchers from virology and retro virology have generally been turned down in favor of studies aligned with a psychological theory of illness. 

Years of misdirected research have resulted in a lack of a medical specialty for this group of patients to rely on for expert care.  Doctors have been left without adequate knowledge and the tools to effectively care for their patients. The sick have been turned away by major medical centers, ignored by government, and their claims denied by insurance companies who refuse to pay for diagnostic tests and experimental treatments.

How could this happen to such a large group of sick people in this day and age of modern medical technology?  Who could possibly benefit by this inhumane treatment of sick human beings?

My husband is fond of the quote made popular in the Watergate era: “follow the money”.  His take on it is more specific: When something doesn’t seem right, “follow the money”.

 

So if one follows the money in this case, we can perhaps begin to unravel the mystery of this crime against humanity.  We know that when this disease was first reported to our governmental authorities, another more deadly illness had recently been identified, HIV-AIDS.  Our nation was debating how to approach this new “gay man’s disease”, until it struck a young child and a famous athlete, neither who were gay.  Countries around the world were struggling to meet the heavy demands of HIV, when myalgic encephalomyelitis began to take its equally heavy toll on the lives of the innocent.

But this disease was a disease that apparently could be ignored.  It seemed to impact mainly woman.  There was no immediate organ damage that could be detected.  It did not kill the afflicted rapidly enough; it only caused a profound disability that could last a life time.  

However, a life time of disability requires a life time of disability payments and huge medical bills; something no government or private health insurance provider wants to be responsible for.  The only way to avoid medical and disability payments for the sick is to claim the illness is due to a psychological disturbance or mass hysteria, blame the patient for their illness and offer cheap psychological treatment and exercise therapy.   As long as no one discovers the true cause of the disease, these entities are safe from any expectation of actual medical intervention.  A physical disease may remain in the psychiatric domain if it is called a psychosomatic illness; “meaning a disorder in which mental factors play a significant role in the development, expression, or resolution of a physical illness.” 

Despite years of private research and thousands of papers describing the physical deficits found in these patients with this illness, our government and medical entities continue to ignore the evidence in favor of those who espouse a simplistic psychological theory of illness. 

But those who stand to gain by misdirecting research funding can not stop the truth from being revealed.  What greater evidence is required to support the request for responsible action than the finding of a new human retrovirus replicating in this population of patients?  Knowing the significance of this discovery, why has the US government not asked CFS patients to stop donating blood until the cause of this disease is better understood? 

Prostate cancer and XMRV research has been made a priority at the National Cancer Institute and major universities as evidenced by the publication of new findings.  Yet, there has been no such commitment by those at the National Institute of Allergy and Infectious Disease.  Why is this?

Are we to blindly and meekly accept that those who suffer from XMRV (who have been inappropriately branded as having a fatiguing illness called “CFS”) are undeserving of the same medical care afforded others infected with a retrovirus?

I believe this is not time to end the CFSAC but rather a time for the CFSAC to exhibit its commitment by sending its strongest recommendations to the Secretary of Health and following those recommendations with actions:

·      Educate the research and medical communities about the number of individuals impacted and the severity of this disease.  Recommend that the CDC define ME by the immunological and neurological abnormalities that exist, the many co-infections that are frequently found and the physical complications of this long term illness.  It is time to agree on a proper name for this disease and to reflect the most current scientific knowledge in the definition of this disease.

·      Seek congressionally mandated research dollars that more closely match the number of individuals impacted by the disease and the severity of the illness.  Millions of Americans are ill with ME and yet the NIH allocates a mere $1.00 to $4.00 per year per person.  The loss in economic dollars is conservatively estimated to be $9 billion per year.  With that kind of economic loss to our society, why isn’t this disease funded at the level of hepatitis C which is currently at $93 million a year? Patients diagnosed with ME also suffer from inflammatory bowel disease, cognitive impairment, fibromyalgia, anemia, gall bladder disease, chronic Lyme disease, sleep disorders, chronic pain, depression, hormonal dysregulation, frequent viral infections, heart disease, and cancer.  Yet these sick Americans are forced to seek unproven medical treatments for symptomatic relief due to the lack of scientific understanding of the underlying immune deficiency that is driving this disease.

·      Request that research be conducted on XMRV in infectious disease by the NIAID and outside researchers to continue the valuable work begun at the WPI.  The human retro virus, XMRV, has been found by WPI researchers in diverse disease populations, including cancer, autism, fibromyalgia, gulf war illness and ME, in men, woman and children.   Yet four of WPI’s most recent grants were denied funding on the basis that not enough is known about XMRV to warrant further investigations. 

·      Create and fund Centers of Excellence in neuroimmune diseases to care for patients with complex disorders caused by infectious agents.  Scientific medical criteria should be developed that hold these Centers to standards of performance that include timelines and effectively measure demonstrated outcomes.  All such Centers should be interconnected to provide medical consistency in care.  They should include research, clinical care and medical education components from classroom lectures, to residencies and fellowships in neuroimmune disease.

·      Request a congressional hearing to determine why this disease has been so poorly managed by the CDC and NIH, in order to assure the American public that the failure to recognize a serious threat to the nation’s health will not be repeated.

There is no question that the CFSAC, as defined by its charter, can be an important avenue to a meaningful discourse between those who care about M.E. and those who are capable of initiating action from within the government.

The question is: Has the CFSAC achieved the goals stated in their charter?

The charter states its purpose …..as established to provide science-based advice and recommendations to the Secretary of Health and Human Services and the Assistant Secretary for Health on a broad range of issues and topics pertaining to chronic fatigue syndrome (CFS).

Is this goal being aggressively pursued?  Is scientific evidence being reported to the Secretary of Health?  What actions have been taken by the Secretary of Health that would provide evidence that this information is being acted upon?

The Function of the committee is stated below:

The Committee shall advise and make recommendations to the Secretary, through the Assistant Secretary for Health, on a broad range of topics including: (1) the current state of knowledge and research about the epidemiology and risk factors relating to chronic fatigue syndrome, and identifying potential opportunities in these areas; (2) current and proposed diagnosis and treatment methods for chronic fatigue syndrome; and (3) development and implementation of programs to inform the public, health care professionals, and the biomedical, academic and research communities about chronic fatigue syndrome advances. 

The WPI took the earlier recommendations of this committee seriously.   In fact, we built our Institute on the premise that this disease and others very similar to it, deserves “Centers of Excellence” that can bring answers to patients and doctors, in the same manner as multiple sclerosis and muscular dystrophy have successfully done.  We believe that to find answers to this complex disease we must combine the translational efforts of basic and clinical researchers working in collaboration with knowledgeable physicians.  This is the dream of the WPI: to bring discovery to a disease which has impacted millions of lives, to develop effective treatments and to one day provide preventative measures that will stop the spread of the disease.

This is not something that we can afford to do alone.  If this committee will confirm that it is more than a sounding board for frustrated patients and doctors and that it can effectuate the necessary changes in this field, then the WPI fully supports the renewal of its charter.

Martin Luther King, Jr. once said, “The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy”.  I believe that courage is the combination of knowing the right thing to do and then doing it. Please show us you have the courage to make this happen.

Thank you for your time and attention.  
 

#60~ Thanks Dr Peterson for EVERTHING~ WPI ♥♥♥

Whittemore Peterson Institute announces search for medical director.

Planned transition paves a smooth path for the fall opening of the new Institute
Reno, Nev.
–
As part of a planned transition, the Whittemore  Peterson Institute (WPI) announces the national search for a full time Medical Director as 

Dr. Daniel Peterson retires from this position.
 

Dr. Peterson, a pioneering physician in describing methods of diagnosing, managing and treating myalgic encephalomyelitis (ME/CFS), was one of the
first physicians to identify this disease in the United States.

“Dr. Peterson was central figure in the establishment of the Whittemore Peterson
Institute,”
remarks Annette Whittemore, founder and president of WPI.
“We are deeply grateful to him for his significant advice and support through
the development of the Institute.”

“I am extremely proud to have been a part of the creation of this medical research
institute which promises to bring exciting new answers to patients with
complex neuro-­‐immune diseases,” states Dr. Peterson who will continue his
internal medicine practice in Incline Village, Nev.

The WPI will soon begin a national search for a new full-­‐time medical director
and practicing physician with extensive experience in infectious disease, clinical
trials and medical management.

The Whittemore Peterson Institute will move into a new 100,000-­‐square-­‐foot
state-­‐of-­‐the art research and medical facility, the Center for Molecular Medicine,
at the University of Nevada in the fall of 2010.
Dr. Judy Mikovits will continue to lead the comprehensive research program at the
WPI, which will be the first in the world dedicated to neuro-­‐immune diseases
integrating patient treatment, basic research, clinical trials and medical education.

To learn more about the institute and ongoing research, please visit
http://www.wpinstitute.org.


For the FULL article download the pdf.

http://www.wpinstitute.org/news/docs/NewMedicalDirector_042810.pdf.

#59~ CFSACmeeting~ 4/10/10 Public Comment ???

Would YOU wait bedridden for 6 months for a 3 min. public comment?

I was SO Shocked and Personally INSULTED when I saw this that I just HAD to post about it to all of you... Are you AWARE that not ONLY will this be a ONE DAY (instead of the usual 2 ) meeting BUT the Public Comments have been reduced 
to 3min each ( instead of the usual 5 minutes ) AND NOW I SEE that there will 
ONLY be 30 minute IN TOTAL allowed for Public Comment ??? 


That is a HUGE Slap in the FACE to the Constituents they ARE Being PAID to Represent and they won't even give us adequate time to comment ?  I HOPE all commentators have brought FAST SPEAKING Helpers or a prerecorded version 
that they can play in FastForward Mode "chipmunk voice" so that their entire statement  CAN be made.. Sheez.. 25 years of PTSD and now this ???


THANKFULLY, Annette Whittemore of WPi HAS been granted 3 minutes to speak. Hallelujah ~


If the QUALITY of this MEETING is NOT EXCELLENT enough to make up for the lack of time/days allowed... I think it is TIME for there to be a VERY Vocal 
Public Input... I won't say exactly WHAT and to WHOM yet we will be directing
all of our input, (obviously Elected Officials ) among MANY Other PLACES...


I'm talking a HUGE Patient UNITED Campaign... WAY MORE than the CFIDS Assoc has ever done.. as WE WILL BE HEARD THIS TIME .... IT IS TIME FOR THIS 
DISGRACE AND Lack of HELP to those of us that WANT to be WORKING AND PAYING TAXES AGAIN.. Hello ? Help this Economy ?? Do I need to add up for you the MILLION of Dollars/Sterling/Euros that the NEGLECT of the ME/CFS Community has COST not only the USA but the UK and other countries
around this world.. It might be truthfully enough to make a REAL dent 
in the deficit.


But FIRST, some folks NEED to Take the PLUGS OUT Of Their EARS
and "Get a CLUE"...


I *Thought*  we were having a World Recession...TOO BAD they decided NOT to help 28 million people that COULD be Working and Helping our countries... but NO.... We ARE Being ignored and falling thru the cracks and unless this meeting BLOWS the ROOF OFF the Building...because it is SO FANATASTIC.... then our plans WILL be put into action...
Enough is Enough...
We WILL Be Silent NO MORE. Period !!!


Please Be SURE to "Tune IN" on May10th or whatever DAY/Time it is based on your timezone ♥♥♥ 

For further contact:
Chronic Fatigue Syndrome Advisory Committee (CFSAC)
Office of Public Health and Science
U.S. Department of Health and Human Services
Hubert H. Humphrey Building, Room 712E
200 Independence Avenue SW.
Washington, DC 20201
(202) 690-7650 (Voice)
(202) 401-4005 (FAX)
cfsac@hhs.gov (Email)

Agenda

May 10, 2010

9:00 am

Call to Order Opening Remarks Roll Call, Housekeeping

Dr. Christopher Snell Chair, CFSAC Dr. Wanda Jones Designated Federal Official

9:15 am

Welcome Statement from the Assistant Secretary for Health New Members Statement on CFSAC Interests/Goals

Dr. Howard K. Koh CFSAC New Members

10:00am

Remarks from Dr. Elizabeth Unger

Dr. Elizabeth Unger

10:30am

Blood Safety Update on XMRV

Dr. Jerry Holmberg

11:00am

Review/Update of past CFSAC recommendations

Committee Members

12:30pm

Subcommittee Lunch

Subcommittee Members

1:30pm

Public Comment (on CFSAC charter)

Public

2:00pm

Review and Discussion of CFSAC Charter and ByLaws

Committee Members

4:00pm

Adjourn