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May 12th: Celebrating Nineteen Long Years!
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The Real History Behind the Name Change Movement Donate to RESCIND
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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
Tom's CFSAC Testimony in French Part 1
RESCIND's last minute push.
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 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/16844674The address to send your letter to is: 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 10 Letters Campaign Update April 13, 2011 You DO NOT have to write ten letters. You
only need to write one.
10 Letters Campaign Update April 22, 2011 Thank you, Kelly for posting this! And
thank you, Courtney M., for asking 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
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:
Help advocate for children for Awareness Day, May 12th!
National Institutes of Health Funding for Chronic Fatigue Syndrome Grants: A Ten-Year Profile Pat Fero, MEPD
Pathogens in the Blood Supply 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.
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 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
Annette Whittemore and Dr. Judy Mikovits eloquently refute the latest contamination papers.
Dr. Judy Mikovits:
Ladies and Germs, “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:
Thank you to ValB626 and XMRV Global Action for the following statement from Harvey Alter, M.D.
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