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R.E.S.C.I.N.D.

Repeal Existing Stereotypes for Chronic, Immunological and Neurological Diseases

Leaders in the Name Change Movement and Originators of:

Sign The Petition for the Recognition of
Myalgic Encephalomyelitis

Tom's CFSAC Testimony in French Part 1

Part 2

RESCIND's last minute push.

If you wrote a letter to President Obama or submitted testimony to the CFSAC, please fax it or email it to the President on May 12, 2011. If you didn't write a letter please send a quick note. See our site for some ideas. Those who are still in Washington and are unable to email or fax the President, please do so when you can.

Contact by web-email:
http://www.whitehouse.gov/contact

Contact by fax:
FAX: (202) 456-2461

We have to fight our battles often from our beds. This is ONE thing that you and your family can do to help yourself out. Remember, the life you save, may be your own!

Good luck!
Jerry and Tom
 

RESCIND's May 12th 10 Letters Campaign

March 1, 2011

Post Far and Wide!

On the cusp of the nineteen year anniversary of May 12th  Awareness Day, RESCIND is proposing the “10 Letters Campaign” for May 12, 2011…

Fellow PWMEs and those who stand with us,

I’ve been lobbying my congressional representatives about M.E. for two decades to no avail. Family members have even participated in the early “Lobby Days” with no results. My latest attempt was in alerting my three representatives to the “virus ad” in the Washington Post. I received one response to it:

Dear Mr. Greyson: 

     Thank you for sharing your thoughts with me.  I will certainly keep your views in mind should this issue come before the Senate. 

Sincerely,

Carl Levin

Why do we keep banging our heads against the wall of congress? Where does the buck really stop?

I remember an interview with President Obama and how he asks his staff to bring him ten constituents’ letters each evening for him to read.

I had written to the President some time ago regarding a situation other than M.E. After several months I had forgotten about the letter I had written to the President but to my surprise I received a small package in the mail with the return address of 1600 Pennsylvania Avenue. In it was a wealth of information on how to solve my problem, who to contact, etc. So, even though it took longer than I expected and I’m sure the President probably never saw my letter, it’s obvious that his staff did read it and they took the time to follow through with an answer for me.

I am writing a letter this May 12th. Not to my Congressperson or Senators but to my President. I would like to suggest that everyone who can, patients, family, doctors, healthy advocates, write a letter to President Obama as well. Not an email. A real signed letter. Please mail your letter so that it arrives as close to May 12th as possible. If we can get enough letters into the White House mail box, maybe one of those ten letters President Obama reads on the evening of May 12th will be one of ours.

I’m not going to write up a cut and paste letter. They should all be different, genuine and from your heart. I will let you know what I’m going to include in my letter and some ideas for you to consider for your letter…

· Of course I will start with my history and the devastation that has been wrought upon me by M.E.

· Then I’ll apprise the President of the malfeasance and corruption going on at the CDC and parts of the NIH. And I will suggest to him whose resignations to ask for.

· We need a proper name that reflects the severity of this illness. The United States needs to recognize M.E. There is a petition with nearly ten thousand signatures at http://www.petitiononline.com/MEitis/petition.html stating just that.

· Along with a proper name, we need a proper clinical definition. The simplest way to do that would be to adopt the Canadian Consensus Criteria. Several of the authors being from the United Sates. http://www.cfids-cab.org/MESA/ccpc.html

· We need funding for research into XMRV and related viruses. A proper replication of Lombardi et al needs to be done to find out once and for all if MuLVs are the cause of M.E. and if not, we need to move on. I’m not going to dwell on M.E. (or CFS) in the XMRV portion of my letter. I’m going to play up the cancer angle because no one’s really afraid of a little fatigue but everyone’s afraid of cancer.

· We need more funding into the ciguatera epitope that was discovered by Dr. Hokama. This neurotoxin biomarker has been found in, I’m told, 100% of M.E. patients. It has already received government funding and needs more funding to flesh out the cause and cure, be it a virus or radiation poisoning.

· I’m going to ask that the President not rely on the CAA for information but to ask for MY thoughts and to look to other organizations such as RESCIND, Wisconsin CFIDS, The NCF, WPI, PANDORA and even my own physician.

· I’m going to mention the disparity of funding. According to the CDC, there are 4 million M.E. patients in the U.S. And according to the NIH Estimates of Funding for Various Research, Condition, and Disease Categories (RCDC), anywhere from 4-6 million dollars per year has been spent on research. With some years being ZERO! That’s about a buck per patient. Obviously these are the CDC’s trumped up empirical numbers. But higher numbers SHOULD be of more concern. http://report.nih.gov/rcdc/categories/

· I will apprise him of the economic losses due to M.E. and refer him to Leonard Jason’s economic loss study http://www.dynamic-med.com/content/7/1/6 that concluded the direct and indirect cost of ME and CFS to society was estimated to be between $18,677,912,000 and $23,972,300,000.

· The Harvey Alter statement. He won the Lasker Prize for isolating Hepatitis C and is the Chief of Infectious Diseases and Immunogenetics Section of the Department of (Blood) Transfusion Medicine at the NIH:

“I'm not a CFS Dr, but have learned a lot in last 6 months. Absolutely convinced when you define this by proper criteria, it's a very serious, medical disease. Characteristics of a viral disease. If it's NOT XMRV, we must continue the research to find out what is.''

· The New York Times article and the Nancy Klimas quote:

"But I hope you are not saying that C.F.S. patients are not as ill as H.I.V. patients. My H.I.V. patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in the care of their families. I split my clinical time between the two illnesses, and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V."

Dr. Nancy Klimas as quoted from the Q & A New York Times article “Is a Virus the
Cause of Fatigue Syndrome?” - posted online Oct 15, 2009

http://consults.blogs.nytimes.com/2009/10/15/readers-ask-a-virus-linked-to-chronic-fatigue-syndrome/

· And the Dr. Marc Loveless congressional testimony of 1994:

“I have treated more than 2500 AIDS and CFS patients over the past 12 years. and my CFS patients are MORE sick and MORE disabled, every single day, than my AIDS patients are, except in the last two weeks of life”

· And finally I will point out Leonard Jason’s “Causes of death among patients with chronic fatigue syndrome” study. http://www.ncbi.nlm.nih.gov/pubmed/16844674

The address to send your letter to is:
 
President of the United States of America,
Barack Obama
The White House
1600 Pennsylvania Avenue NW
Washington, DC 20500
 
 
I am also contacting the people below and suggest you do the same, if able. It will be pretty much the same letter that I write to the President, just changing the name. However, the President is the most important letter you write!
 
Speaker of the House,
John Boehner
1011 Longworth H.O.B.
Washington, DC  20515
 
First Lady, Michele Obama
The White House
1600 Pennsylvania Avenue NW
Washington, DC 20500
 
Vice President of the United States of America,
Joe Biden
The White House
1600 Pennsylvania Avenue NW
Washington, DC 20501
 
Dr. Jill Biden
The White House
1600 Pennsylvania Avenue NW
Washington, DC 20501As this is being sent out 2 months ahead of May 12th, this should give everyone enough time to put their letter(s) together.

This is up on the RESCIND website so you can refer back to it there, if needed, and for updates on points to be made in our letters.

Other points to make are welcome. If you email them to me I’ll put them up on the RESCIND website. Keep an eye on the website for further information and updates.

Make it short and sweet. Make it long and loud. Just make it into his hands.

Congress isn’t paying attention to us. Will the President?

Jerry

Tom

www.rescindinc.org

10 Letters Campaign Update April 13, 2011

You DO NOT have to write ten letters. You only need to write one.

President Obama has asked his staff to present him with at least 10 letters
at the end of every day of the 50,000 letters the White House receives on
any given day, so that he can get a feel for what the average American is
going through. He wants to hear from People without big moneyed lobbyists
who want to get their point across to the President. Let's make sure he
reads a letter about M.E. on one evening in May.

With just a few weeks to go, here are some updated suggestions:

Is it okay for patients outside the U.S. to participate? Why not?  Let's
show him just what a  global catastrophe this is!

Additional groups he should contact for information:

The IACFSME

People within the government that he can rely on for accurate information:


Harvey Alter
Shyh-Ching Lo
Frank Ruscetti
Sandy Ruscetti


People he shouldn't rely on for information:

Bill Reeves
Tony Fauci
Elizabeth Unger

Invite him to attend a CFSAC meeting.

Include Pat Fero's updated National Institutes of Health Funding for Chronic
Fatigue Syndrome Grants: A Ten-Year Profile:

http://www.rescindinc.org/NIH%20CFS%20funding%203.29.2011%20.pdf

Ask him to watch the State of Knowledge Workshop on M.E.

http://videocast.nih.gov/PastEvents.asp

Thank you and please keep the suggestions coming! All of this will be posted
on our site. Keep an eye on the website for further updates.

Jerry
Tom
www.rescindinc.org

10 Letters Campaign Update April 22, 2011

Thank you, Kelly for posting this! And thank you, Courtney M., for asking
the big question!

This is proof that, now more than ever, President Obama needs an education
about M.E. and CFS. Let's make sure he gets that education this May 12th
with a flood of letters and information about M.E. and CFS!

Courtney asked Obama THE question. How about YOU?

The latest information about RESCIND's "10 Letters Campaign" can be found on
the home page of our website.

Jerry
Tom
www.rescindinc.org


----- Original Message -----
From: "kelly"

Subject: [CO-CURE] NOT: Obama asked for research funding for CFS


> Apr 21, 2011
> Obama: We will end 'manipulation' of gas prices
> Town Hall meeting - Reno, NV
>
>
> 3:37 p.m. -- A woman asks for more research money into the causes of
> chronic fatigue syndrome.
>
> Obama says he's heard of the disease, but is not expert -- and will
> look into it.
>

 

10 Letters Campaign Update April 25, 2011

You only need to send ONE letter. Please mail the letter so that it will arrive on or as close to May 12th as possible.  

However, if you are able to, we would like to start sending letters on May 1st. One per day, every day until May 12th. It can be a printed copy of one letter but please use a “wet” signature (personally sign the letter).  

Again, if you are only able to send one, send it so that it will arrive as near to May 12th as possible so that a majority of our mail comes in on the same day. 

We have an interesting video on the RESCIND website explaining the hows and whys of the 10 letters that President Obama asks for every day. He personally replies to three or four per day. Please take a look:  http://www.rescindinc.org  

Angel Mac has spent a lot of time preparing some great talking points for our letters. Please see:

http://standup2me.blogspot.com/2011/04/113-2nd-chance-pres-obama-can-you-hear.html 

Don’t forget to steer the reader of your letter, hopefully the President, to the proper people and organizations for the correct perspective on this illness. And let the reader know who to steer clear of. This information can be found on the home page of RESCIND’s website. 

"Remember, folks, the life YOU save, may be your own!" 

Be sure to let everyone know if you get any kind of reply! 

Jerry

Tom

www.rescinding.org

10 Letters Campaign Update May 5, 2011

Just one minute ago, I was watching President Obama shaking hands with
members of the fire and police departments, the 9/11 responders after he
laid a wreath at Ground Zero. And the announcer said, "yes, here he is
shaking hands with a 14 year old girl, who wrote a letter to the President.
Did you know that he instructs his staff to bring him 10 letters every
night......and this young girl wrote to the President that she lost her
father on 9/11. He was a firefighter, and this was why she was invited to be
here today to stand in line with all the first responders from 9/11!"

More info on RESCIND's May 12 th 10 Letters Campaign can be found at:

http://www.rescindinc.org


 A brilliant argument for the acceptance of Myalgic Encephalomyelitis by Jill McLaughlin

"Let us not look back in anger, nor forward in fear, but around us in awareness." - James Thurber   

As Awareness Day approaches, many try to find ways to move forward. Since
there has been so little progress, sometimes it is necessary to reflect and regroup. So
start with the basics: Awareness - for what? 

CFS in any form will continue to undermine us. Mark Iverson wrote in his letter
of resignation from the CFIDS Association of America:
 "I favor and the CEO [*who at this time was Kim Kenney (McCleary)]
opposes immediately adopting a very aggressive
stance opposing the discriminatory and incredibly damaging name CFS/CFIDS
(chronic fatigue syndrome/chronic fatigue and immune dysfunction syndrome)
and I believe efforts to change public attitudes are virtually hopeless and
wasted with the present name;..."
 
(or Marc Iverson's resignation letter as posted to Co-Cure on July 13, 2001

How true. So why would we keep it? Myalgic Encephalomyelitis (ME) is an
actual illness, yet some are now trying to push some made-up combination,
hybrid construct as a viable solution. Half truths are more dangerous than lies.

ME/CFS is the next red herring. 

What is ME/CFS? Is it ME? Is it CFS? Is it something else? Is it the Canadian
criteria? Is it none of the above?  Usually met with stunned silence, or
with differing meanings or interpretations.

We do know what it is not: 

ME/CFS is not an actual diagnosis as there is no ICD code. 
ME/CFS is NOT a name change or new name. The only real purpose of a
name change has been to get rid of the derogatory and demeaning CFS.

And ME is not new. 

ME/CFS implies that they are the same. They are not. They have different
definitions and can select different patient populations. There may be some
overlap of vague symptoms, but they are different in nature and outcome. 

CFS was intended to be a provisional term used for surveillance purposes.
CDC states that ME and CFS are different and that CFS excludes
neurological illness; thus it excludes ME. If CFS excludes ME, how does
ME/CFS or CFS/ME make any sense whatsoever, scientifically or even logically? 

Everyone has their own meaning and understanding of what ME/CFS means,
or should mean, or believe it will mean. (*The Canadian Criteria is not an ME
definition but has features of both.) There are numerous
- and differing - explanations that flood the internet: what it is, the prevalence etc.

Within the same article there are often different terms and references:

"ME patients"  or "ME/CFS studies" or "CFS research" and often
switch back and forth. 

And there's CFS/ME, but do not dare confuse this with ME/CFS!

And of course we always must proclaim that CFS is not "chronic fatigue!" 

Yet we have resource centers and petitions and even paid advertising
using and promoting this confusing, undecipherable gibberish.

Then we  muster the requisite outrage and handwringing when the
"dumb" doctors or journalists or even the general public don't get it or
get it wrong. 

Throwing everything into some ME/CFS pot will not help anyone but will
continue the misunderstandings and confusion and will be open to the same
interpretations or misinterpretations that we've had all along. 

Having a valid diagnosis (which uses established terminology and definitions)
that describes a homogeneous patient cohort for research purposes is critical. 

We have never had this, and there are groups/advocates that still try to deny, ignore
and even actively try to prevent this from occurring. Groups continue to spring up, but still
perpetuate the ME/CFS myth (and even faux "ME" groups that do the same),
evoking this as some false forced unity while banning and censoring those who
refuse to conform. 

The different definitions and names and usage have caused the vast
majority of the problems with the stigma and trivialization, and the broad
and varied definitions create the differing and conflicting research results.
Studies almost never specify what definition was used or how patients
were selected so we never really know what or who was being studied.
This is sloppy, unscientific and it is time to put a stop to it. Unfortunately,
it is up to us, as our organizations and even professionals have failed us
miserably. 

Those with ME want a valid diagnosis of ME (not combined or connected to CFS)
that can be recognized and diagnosed now, not another artificial creation
or at best watered down combination that can be broadened, redefined etc.
Whatever the rest or whenever the cause is proven can be sorted out later. 

We are on our own and require a true grassroots effort. Contact HHS and
cc Congress and continue to educate the media. True ME
advocates have no reason to attend the CFSAC meeting (at the last meeting,
Dr. Hanna stated that people were requesting that ME be recognized
independent of CFS). 

Be clear that ME needs to be recognized as originally defined and described
and that these groups do NOT represent ME!

Jill McLaughlin

For more information on the problems with the various, conflicting names
and definitions, see:

http://www.hfme.org/whobenefitsfromcfs.htm

CDC - CME: A Primer for Allied Health Professionals (WB3151): Chapter 1.1 - Chronic Fatigue Syndrome

www.cdc.gov


A CALL FOR ACTION: THE RECOGNITION OF MYALGIC ENCEPHALOMYELITIS AS A SERIOUS AND DEBILITATING DISEASE

http://www.petitiononline.com/MEitis/petition.html

Accomplished singer, song writer and musician Susan Wenger,

of the band Cinder Bridge, has generously donated a song about M.E. to R.E.S.C.I.N.D.

Please follow this link to learn more:

Everybody Knows About ME

Help advocate for children for Awareness Day, May  12th!

 
The National MOMS ON A MISSION (MOM) has raised funds  through their "Cents
for CFIDS" campaign to enable advocates a chance to  identify more children
with CFIDS/ME.  Last year, distributing booklets to  school nurses in their
towns helped identify children who were  misdiagnosed.  MOM raised enough
money this year to offer the booklet  "Guidelines for Schools: Understanding
and Accommodating Chronic Fatigue and  Immune Dysfunction Syndrome and
Fibromyalgia (CFIDS/FMS) to the first 30  nonmembers who reply to the National
CFIDS Foundation, Inc. so that  they may distribute them to the schools in
their area. 
 
All is needed is the advocates name and regular address so  that the number
of booklets requested may be sent out by the USPS within the  United
States.  The number of booklets will be sent when you let us know  how many
schools are in your town or district enabling you to distribute  one to each
school.
 
One mother from MOM said the problem begins with getting a  diagnosis and
the consequences can be frightening.  She wrote,
 
   "It took three years and referrals to 5  specialists before my child was
    diagnosed and, by then, the school system  had labeled Michael as
    depressed and school phobic, filed against  me for neglect of my child's
    education and we got a 'no finding', they  took him to court as a
truant.
    It was so confusing.  One symptom  would leave and three others would
    appear or reappear.  None were  that unique, but they were so very
    intense.  And we were the lucky ones  with good medical coverage to
    keep pursuing it!  No child has the  resources to pursue this on their
own
    and Michael was too young to be able to  explain his complaints!"
 
MOM wants advocates to know that the children with CFIDS/ME  are counting
on you to help. Last year, there were eleven children identified  that they
heard about who had not been diagnosed correctly.  MOM  is hoping to make
that number higher this year but considers just one child  helped a major
success.  The National CFIDS Foundation continues to offer  their "children's
packet", consisting of over 30 pediatric medical journal  articles, for parents
to help with individual advocacy with  the children.
 
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_ (http://www.ncf-net.org

 

National Institutes of Health Funding for Chronic Fatigue Syndrome Grants: A Ten-Year Profile

Pat Fero, MEPD
Executive Director
Wisconsin ME/CFS Association, Inc.
3/26/2011

View PDF

Pathogens in the Blood Supply
Tuesday, March 29, 2011 | 1:00 PM - 5:00 PM
The New York Academy of Sciences

Question asked by Jerry:

Dr. Mikovits, herpes virologist and clinician, A. Martin Lerner has stated in his last three papers that XMRV and related viruses may in fact cause the inability to fight off herpes viruses and other co-infections in his patients. What are your thoughts? Do you have any plans to work with Lerner to see if HGRVs make the difference between his patients who recovered with herpes anti viral therapy and those who have not been able to recover with therapy?

Answered by Dr. Mikovits:

“Exactly, yes. That is our exact hypothesis. That XMRV causes an immune dysfunction if you will, an acquired immune deficiency that keeps the immune system from regulating viruses such as HHV-6 EBV as Dr Lerner has shown. CMV we have a lot of patients with active CMV. We have 30 year olds with active shingles, enteroviruses, Babesia you name it. It looks like an acquired immune deficiency to us, similar to AIDS is the hypothesis.

And yes Dr Lerner and I have talked a lot in the last year about doing exactly that study and we simply haven't had time yet.”

 

SPREAD THE WORD                                Speak Up About ME! MAY 11th 2011

Speak Up About ME - INVISIBLE NO MORE!  is an ME/CFS Awareness Project that aims to empower our youngest patients. This endeavor is supported by a coalition of ME/CFS organizations including P.A.N.D.O.R.A., the Rocky Mountain CFS and FM Association, the Vermont CFIDS Association, the ME-CFS Worldwide Patient Alliance, Phoenix Rising, CFS Solutions of West MI, CFOG (Chronic Fatigue Syndrome and Fibromyalgia Organization of Georgia) of Georgia and Facebook's cause-project page. 

Speak Up About ME -INVISIBLE NO MORE!

It is time to YANK (not tug) the nation's heartstrings.

Young People with ME/CFS --JOIN US in Speaking Up About ME!

Make your voice heard!

Be INVISIBLE NO MORE! 

How will we yank people's heartstrings? Through the attendance of a record number of young people and their families on May 11th 2011 the Chronic Fatigue Syndrome Advisory Committee meeting (CFSAC) in Washington, D.C. 

Historically, few young people have attended this event. Speak Up About ME will change that, as those who became sick as children or in their teens proclaim themselves to be INVISIBLE NO MORE! Parents, guardians, and representatives from organizations supporting this project will accompany the young folk who go to Washington. The project will also represent young patients who cannot attend due to health or finances by delivering their testimonials via video, telephone, e-mails and letters. 

All of the young participants will wear identical shirts, emblazoned with the project title, Speak Up About ME, to be purchased through Zazzle (MCWPA Young People t-shirt for CFSAC MCWPA Young People T-Shirt for CFSACMCWPA Young People T-Shirt for CFSAC http://www.zazzle.com/mcwpa_young_people_t_shirt_for_cfsac-235549423522548832). In addition, each shirt will be customized with a slogan that shows how much of the patient's life has already been ruined by the illness. (For example, my son Matthew's shirt will announce "sick 6 of 18 years.") 

As well as attending the meeting, young people who come to Washington will get together for lunch. This will be a great opportunity to meet and bond with other patients. In addition, as many of the group as possible, will visit their congressmen/women and senators (taking taxis to minimize loss of energy). They will also hand out cards to their elected representatives. These will resemble trading cards, with the young person’s name and photo on the front, along with the phrase "Thank You for Remembering ME." ME, of course, will refer not only to the patient but to Myalgic Encephalomyelitis. The back of the card will have bullet points about ME/CFS, including its negative economic impact. (The cost of the cards, taxis and lunch is being covered by donors.) 

Through these actions, Speak Up About ME will highlight the faces of young people with ME/CFS and encourage more funding for biomedical ME/CFS research. 

To empower this project, please share your media contacts with us. The more media coverage of these young patients on Capitol Hill, the more public awareness of ME/CFS and the more YANK on people’s heartstrings. 

You can also mentor a young person by helping him/her write their testimony. You can do this via email, phone, etc.

Help spread the word via blogs, forums, groups, Facebook, the Facebook Cause Page, etc. 

Contact medical professionals. Ask them to encourage their pediatric patients to be part of this project. 

Families of young ME/CFS folk and young ME/CFS folk, contact Denise, (mother of two teens with ME/CFS who are SICK of being sick and tired) at

YoungMECFSfolk@gmail.com  or             speakupaboutme@gmail.com         with questions. 

We want to benefit from your expertise, so give us your input. All e-mails will be confidential. 

Help us get young ME/CFS folk involved and INVISIBLE NO MORE! Let’s make this happen!

This project will benefit us all!

Thank you for your help!

http://www.speakupaboutme.org/

Sign up.                 Participate.                     Help.

XMRV & AMPLIGEN
A Report from the 9th Hemispherx Biopharma Investigators Meeting March 3-6, 2011


·            Gene Sequencing in Persons with CFS
·            XMRV Subset Analysis and Ampligen Treatment
·             What Is Ampligen?

Annette Whittemore and Dr. Judy Mikovits eloquently refute the latest contamination papers.

Dr. Judy Mikovits:

    " As one would expect (that there would be different opinions).  And this is really a great time
of HOPE.  Because we've also determined in our research this year - and that will be coming out
published very soon - we're understanding WHY the (XMRV) virus hurts the immune system.
We're understanding what's going wrong to make you sick, and that's another step to making people
well.  So it's a great time of excitement and research around the world.  We expect treatments next year (2011)."

 

Ladies and Germs,

Ten days ago, the American Red Cross announced a new plan to "actively deny" CFS patients from donating blood. The Red Cross controls about 50% of the US blood supply.

On December 6th we worked with the MCPWA.org to put an ad in the Washington Post about Dr. Alter and Dr. Lo's article that strongly backed up the SCIENCE paper from October, 2008 from the WPI.

Now, on the 14th of December, the FDA panel voted 9 to 4 to recommend banning any blood donations from any ME or CFS patients until XMRV is ruled in or out as a possible cause of disease. Yesterday, Dr. Harvey Alter, after a long day of back and forth, where Drs. Mikovits, Hansen and Lo literally "wiped the floor" with naysayers like Dr. Coffin and Dr. Stoye, Dr. alter came out with an unplanned statement that can be found on our website which ended with:

“I'm not a CFS Dr, but have learned a lot in last 6 months.  Absolutely convinced when you define this by proper criteria, it's a very serious, medical disease.  Chars of a viral disease.  If it's NOT XMRV, we must continue the research to find out what is.”

Thank you ValB626 for the transcription!

It is our recommendation that you all write to THANK Dr. Alter at:

halter@dtm.cc.nih.gov

Write him a clear, concise and cogent THANK YOU for his kind comments.

XMRV might be the cause of ME and CFS and FMS and maybe even Autism or Gulf War illnesses. But whatever the cause, Dr. Alter has been convinced that M.E. and CFS are REAL! And they are SERIOUS!

You can read Dr. Alter’s bio on our site.

Sincerely,

Tom & Jerry
www.rescindinc.org.

And while you are at our site, PLEASE read the M.E. petition and sign it!
We are at 8800 names and closing in on 10,000 signatures.

 

 

Thank you to ValB626 and XMRV Global Action for the following statement from Harvey Alter, M.D.

 
Dr. Alter:

“When a group finds a new agent, become biased that it’s real. When it’s not found by another group, they become even more biased it’s unreal. Our goal should be to find the truth. The truth will out over the next year. I concur we have no evidence for causality, especially when we’re at the LoD and assay performance is so critical

But I still want to counter by saying that the current evidence for disease association is very strong that XMRV or MLV is strongly associated with CFS. In those labs who do find the agent, it's very reproducible. Year after year, same patients test positive. Confirmed by sequencing, reproducible over time. Dr. Hanson has demonstrated how critical the assays are. When tweaked assays, the findings are identical to Lo lab.

Diversity of XMRV/MLV being confirmed in WPI lab, so XMRV is the not only agent being confirmed there. In hundreds of negative controls in same lab (Lo’s) all results were negative, Lo has done what Coffin recommended to test for contamination, Always negative for contamination. It isn't logical to suggest otherwise. Stoye used single-case anecdotal information to try to make a case. Simply because it has happened in the past isn't valid to negate reproducible data from 4 different laboratories.

I'm not a CFS Dr, but have learned alot in last 6 months. Absolutely convinced when you define this by proper criteria, it's a very serious, medical disease. Characteristics of a viral disease. If it's NOT XMRV, we must continue the research to find out what is''.

 

Information taken from the National Institues of Health Clinical Center

Senior Staff


 
Harvey Alter, MD
Distinguished NIH Investigator
Chief, Clinical Studies
Associate Director of Research
Department of Transfusion Medicine

Academic Degrees
B.A., University of Rochester
M.D., University of Rochester School of Medicine

Email: halter@dtm.cc.nih.gov

Portrait of Harvey Alter

Biosketch

Dr. Harvey Alter earned his medical degree at the University of Rochester Medical School, and trained in internal medicine at Strong Memorial Hospital and at the University Hospitals of Seattle. In 1961, he came to the National Institutes of Health as a clinical associate. He then spent several years with Georgetown University, returning to NIH in 1969 to join the Clinical Center's Department of Transfusion Medicine as a senior investigator becoming Chief of the Clinical Studies and Associate Director of Research in the Department of Transfusion Medicine at the NIH Clinical Center.

Dr. Alter is also a clinical professor at Georgetown University.

Dr. Alter co-discovered the Australia antigen, a key to detecting hepatitis B virus. Later, Dr. Alter spearheaded a project at the Clinical Center that created a storehouse of blood samples used to uncover the causes and reduce the risk of transfusion-associated hepatitis. He was principal investigator on studies that identified non-A, non-B hepatitis, now called hepatitis C. His work was instrumental in providing the scientific basis for instituting blood donor screening programs that have decreased the incidence of transfusion-transmitted hepatitis to near zero.
 

In 2000, Dr. Alter was awarded the prestigious Clinical Lasker Award and in 2002, he became the first Clinical Center scientist elected to the National Academy of Sciences (NAS) and in that same year was elected to the Institute of Medicine. Only a small number of scientists nationally are elected to both these scientific societies.

Selected Honors and Awards

Appointed as NIH Distinguished Investigator, 2008; Presidential Award, Society for Advancement of Blood Management, 2006; Recipient of the First International Award for Science, INSERM, Paris France, 2004; American College of Physicians Award for Outstanding Work in Science, 2004; Elected to National Academy of Sciences, 2002; Distinguished Scientist Award American Liver Foundation, 2002; Presidential Award, International Society of Blood Transfusion, 2002; Elected to the Institute of Medicine, 2002; Albert Lasker Clinical Research Award, 2000; James Blundell Prize, British Blood Transfusion Service, 1994; Karl Landsteiner Award, American Association of Blood Banks, 1992, Elected to the American Association of Physicians, 1992; PHS Distinguished Service Medal, 1977