ME (CFS) and XMRV

In 2009, Whittemore Peterson Institute scientists discovered a significant link between a newly-found retrovirus, xenotropic murine leukemia virus-related virus (XMRV), and the neuroimmune disease, ME/CFS. Their ground-breaking discovery was published in the world-renowned journal Science, on 8th October, 2010.

http://www.wpinstitute.org/xmrv/docs/wpi_pressrel_100809.pdf

http://www.sciencemag.org/content/326/5952/585.abstract?keytype=ref&siteid=sci&ijkey=m3wzKT4yJqEyk

This discovery brought renewed interest to the much-maligned disease and a flurry of research was conducted in order to confirm the link.

On August 23rd 2010, US government scientists validated the link, announcing they had found an association between a family of infectious murine leukaemia viruses and ME/CFS. They reported that 87% of those sampled carried at least one of the retroviruses, along with 7% (1 in 14) of the healthy controls.

http://www.rescindinc.org/fdanihpressconf.mp3

http://www.cfscentral.com/2010/08/fdanihharvard-xmrv-study-same-thing.html

http://www.pnas.org/content/early/2010/08/16/1006901107.full.pdf+html

http://www.pnas.org/content/early/2010/08/16/1007944107.full.pdf+html

XMRV is similar to HIV, the retrovirus that causes AIDS.

Following the validation study several countries banned ME/CFS patients from giving blood. In many cases these bans are for life.

For more information on XMRV and the Whittemore Peterson Institute, please visit the following site: http://www.wpinstitute.org/

If you would like to donate a regular, small amount to help push this research on, then please consider participating in the COUNT ME IN campaign. For more details visit: http://www.facebook.com/note.php?note_id=160913563956987

Key Scientific Papers & Related:

Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome Science http://www.sciencemag.org/content/326/5952/585.abstract?keytype=ref&siteid=sci&ijkey=m3wzKT4yJqEyk

Detection of MLV-related virus gene sequences in blood of patients with chronic fatigue syndrome and healthy blood donorshttp://www.pnas.org/content/early/2010/08/16/1006901107.abstract

Aug. 23, 2010 – Detection of MLV-related virus gene sequences in blood of patients with chronic fatigue syndrome and healthy blood donors PNAS FDA Press Briefinghttp://www.wpinstitute.org/news/docs/FDAbriefing_082310.pdf

Blood Donor Bans:

http://mcwpa.org/in-the-news/blood-donor-bans/


Pertinent News & Blog Reports:

A Big Splash From an Upstart Medical Center New York Timeshttp://www.nytimes.com/2009/11/12/giving/12SICK.html

New Hope in Fatigue Fight Wall Street Journal http://online.wsj.com/article_email/SB10001424052748703846604575447744076968322-lMyQjAxMTAwMDIwMzEyNDMyWj.html

Viruses Found in Chronic Fatigue Syndrome Patients – National Institute of Health NIH Research Matters http://www.nih.gov/researchmatters/august2010/08302010chronicfatigue.htm

The Lingering Mystery of Chronic Fatigue Syndrome http://well.blogs.nytimes.com/2011/01/03/the-lingering-mystery-of-chronic-fatigue-syndrome/?ref=health

Exhausted by Illness, and Doubts http://www.nytimes.com/2011/01/04/health/04fatigue.html

XMRV and CFS – It’s not the end http://www.virology.ws/2010/12/22/xmrv-and-cfs-its-not-the-end/

Gearing Up for the Big Search for XMRV http://blogs.wsj.com/health/2010/11/17/gearing-up-for-the-big-search-for-xmrv/


Other XMRV Links:

Cleveland Clinic - 40% of patients with aggressive prostate cancer have XMRVhttp://www.plospathogens.org/article/info%3Adoi%2F10.1371%2Fjournal.ppat.0020025

XMRV: Virological, immunological and clinical correlations in patients with chronic lymphocytic leukemia and mantle cell lymphoma http://www.wpinstitute.org/news/docs/Snyderman_XMRV.pdf

Xenotropic Murine Leukemia Virus–related Gammaretrovirus in Respiratory Tracthttp://www.cdc.gov/eid/content/16/6/1000.htm

COMPOSITIONS AND METHODS RELATING TO XMRV-RELATED DISEASES AND CONDITIONS http://www.wipo.int/pctdb/en/wo.jsp?WO=2010132886&IA=US2010035144&DISPLAY=DESC

Of mice and men: on the origin of XMRV http://www.frontiersin.org/virology/10.3389/fmicb.2010.00147/abstract

XMRV retrovirus found in 62% of ME patients tested in Lillestrøm, Norway
http://esme-eu.com/news/xmrv-retrovirus-found-in-62-of-me-patients-tested-in-lillestroem-norway-article440-7.html

THE PREVALENCE OF XMRV IN HEALTHY BLOOD DONORS IN JAPANhttp://www.diagnosesupport.com/health/index.php?option=com_content&view=article&id=305%3Athe-prevalence-of-xenotropic-murine-leukemia-virus-related-virus-in&catid=132%3Axmrv-research&Itemid=8

1st International Workshop on XMRV: Abstracts in Reviews in Antiviral Therapy & Infectious Diseases 2010_8. Abstracts http://regist2.virology-education.com/abstractbook/2010_8.pdf

Distribution of xenotropic murine leukemia virus-related virus (XMRV) infection in chronic fatigue syndrome and prostate cancer Pubmed.govhttp://www.ncbi.nlm.nih.gov/pubmed/20842203?dopt=Abstract

A Third Pathogenic and Lymphotropic Human Retrovirus AIDS Review
http://www.aidsreviews.com/files/2010_12_2_121-123.pdf

**All these were taken from a template on XMRV Bloggerama Day :

http://www.facebook.com/event.php?eid=163069410406270&index=1

as I wasn't able to think properly enough today but with wonderful friends like Andrea Pring offering this template I could still take part. Thank you Andrea.x

This is by Geraldine Hannaway. I have added the links to quotes to make it a bit easier to back them up but all credit goes to Geraldine.x

We will spare a thought this year for the lives about to be devastated by illnesses secretly feared.. Cancer.. MS.. Aids.. Will any of you spare a thought for those of us enduring as cruel a fate.. ME/CFS.. without medical treatment or support.. forced to suffer in silence in a climate of ignorance & disbelief? Can any of you even begin to imagine suffering Cancer.. MS.. Aids without any medical treatment or support?

The following are quotes from eminent International ME Experts;

ME/CFS “is actually more debilitating than just about any other problem in the world.” Dr Leonard Jason

(http://www.fm-cfs.ca/FM-CFS-Quotes.pdf)

“In my experience, (ME/CFS) is one of the most disabling diseases that I care for, far exceeding HIV disease except for the terminal stages” Dr Dan Peterson 

(Dr Daniel L Peterson: Introduction to Research and Clinical Conference, Fort Lauderdale, Florida, October 1994; published in JCFS 1995:1:3-4:123-125) http://www.meactionuk.org.uk/Quotable_Quotes_about_ME.htm

Dr Paul Cheney stated he had “evaluated over 2,500 ME/CFS cases and it can be a nightmare of increasing disability with both physical and cognitive components. Severe cases can have both an MS-like and AIDS-like clinical appearance.” - “We have lost five cases in the last six months”

(Paul Cheney, Professor of Medicine, Capital University, USA:  Testimony Before the FDA Scientific Advisory Committee, 18 February 1993) http://www.meactionuk.org.uk/Quotable_Quotes_about_ME.htm

Dr Dan Peterson found that, “ME/CFS patients experienced greater functional severity than the studied patients with heart disease, virtually all types of cancer and all other chronic illnesses.” 20 years after the epidemic Dr Peterson said he has never had a patient that recovered from ME/CFS. 

 (http://www.mefmaction.net/SupportGroupsCaregivers/Caregivers/tabid/84/Default.aspx and http://www.fm-cfs.ca/FM-CFS-Quotes.pdf)

“There is evidence that the patients with this illness experience a level of disability that is equal to that of patients with late-stage AIDS, patients undergoing chemotherapy (and) patients with multiple sclerosis” Professor Nancy Klimas 

((http://www.meactionuk.org.uk/Prejudice-based_Medicine.htm))

"The signal abnormalities in ME/CFS patients mostly resemble those seen in AIDS encephalopathy. Patients often experience rejection by family, friends and physicians. The illness is hardly 'imaginary' " Professor Anthony Komaroff 

(Anthony Komaroff, Assistant Professor of Medicine, Harvard Medical School: Clinical Crossroads: Conference Report: JAMA 1997:278:14:1179-1185) http://www.meactionuk.org.uk/Quotable_Quotes_about_ME.htm

“Our patients are terribly ill, misunderstood, and suffer at the hands of a poorly informed medical establishment and society” Professor Nancy Klimas

(http://www.meactionuk.org.uk/Prejudice-based_Medicine.htm)

“The most seriously affected individuals may be bed-ridden most or all of the time and can do little or nothing for themselves.” Dr Derek Pheby

(Dr Derek Pheby:  Director, Cancer Epidemiology Research Unit, Bristol University: CFS: A Challenge to the Clinical Professions.  Physiotherapy 1997:83:2:53-56) http://www.meactionuk.org.uk/Quotable_Quotes_about_ME.htm

A study compared the quality of life of people with various illnesses, including patients undergoing chemotherapy, haemodialysis, as well as those with HIV (until the late terminal stage), liver transplants, coronary artery disease and other ailments and again found ME/CFS patients had the lowest quality of life.

Does this sound like an illness warranting no medical treatment, or is it perhaps another that deserves to be added to your most feared list? Scientists have confirmed it to be the latter, recently linking it to a Retrovirus called XMRV.. think HIV.. Governments & the Medical Establishment do not want you to know this! Thanks to their politics & vested interests they have overwhelmingly blighted the field of ME/CFS.. the major players in this high stakes game are hell bent on suppressing the XMRV breakthrough.. covering up their involvement & negligence in what will eventually become known as the biggest Human Rights Travesty of our time! 

ME has reached epidemic proportions with approx 17 million sufferers.. it is also thought to be transmissible.. ME patients in the UK & around the world have now been banned from donating blood (thirty years too late). Please educate yourselves in this deadly disease before you or yours pay the ultimate price! At every opportunity please share this information & help sufferers raise awareness. ME Sufferers undoubtedly have vested interests of their own but theirs are openly declared.. to prevent any other human being from suffering their horrific plight!

Thank you to Geraldine Hannaway for this.x

I Remember Me - A Documentary About ME/CFS

I Remember Me - A Documentary About ME/CFS

This is a documentary was made in 2000 by Kim Snyder and tells the story of the outbreak of a disease at Lake Tahoe in 1984-85 which the CDC failed to recognise as myalgic encephalomyelitis, and ended up renamed Chronic Fatigue Syndrome. The renaming of this disease has led to much patient suffering as the name trivialises a serious neurological illness. In this documentary you will get to hear the testimony of many of the people who were involved in the Lake Tahoe outbreak.

Video 1

Video 2

Video 3

Video 4

Video 5

Video 6

Video 7

Video 8

Video 9

Learning how to say Yes! again.

I've been living with this illness M.E. for such a long time that I have forgotten how to think ahead and not live day to day. It's a hard habit to break but one I am determined to learn again!

What makes us stop saying Yes! when we have a chronic illness?

Is it because we live within boundries of what we are capable of doing without making ourselves relapse big time?

Is it because we create safe places in our routine so we don't make ourselves even sicker...our way of coping and getting though each day?

Or is it because we have had to cancel so many things we had looked forward to and planned for but our body let us down?

These days I initially tend to say no to everything without even wondering if I am able to do it. I then reflect on the possibility that I may be able to do it and re-evaluate my decision.

But that isn't working...I am getting less and less invites...I am being slowly forgotten by those who once thought me an important part of their lives...they are tired of being told no, tired of being let down at the last minute, tired of having to think of me differently these days.

Gone is the vibrant, try anything, fun-loving Carole and in her place is this person who tends to hang back from the fun. They see a woman who has lost her spark and a friend who seems like she would rather be elsewhere.

They are enjoying life quite happily without me and I am the one losing out on this...losing my life bit by bit by being so afraid of what it may cost me in energy.

How do I solve this? Is it as simple as just saying yes to everything? I'd be bed-bound in a week!

Perhaps it's a matter of saying yes to myself more, learning how much I can actually get away with and then taking a leap of faith and asking to be involved in my loved ones lives again!

But I feel safe with No!

No is sometime necessary, when living with M.E.

But...

Yes!...I am going to start saying Yes! a lot more from today.