"It is (ME/CFS) like some great constricting snake that denies its victims the final convulsion." Llewellyn King

"A CFS patient feels the same or worse than congestive heart failure. The same or worse than late stage AIDS." Nancy Klimas: View video here.

"A CFS patient feels every day significantly the same as an AIDS patient feels two months before death." Dr. Mark Loveless, AIDS and CFS researcher, in a statement to congress on CFS Awareness day, May 12th, 1995.

Saturday, March 27, 2010

A Light in the Darkness?

In January of this year, I wrote the article "A Picture is Worth a Million PWC words" here on my blog. It focused on the amazing CFS study performed by Dr. Alan and Kathy Light and team, as reported in "Blood Biomarkers for CFS". For those who may have missed it, here's a fast recap.

"According to Blood Biomarkers for CFS: A Light at the End of the Tunnel, "Alan R. Light, PhD, and his team at the University of Utah Health Sciences Center have identified genes that increase in activity following moderate exercise."  The discovery was published in Journal of Pain. "

And here is the remarkable slide showing gene expression activity, following moderate exercise exertion, in the control group (Top of slide), the CFS group (Middle), and the bottom slide, although not apparent here, represents an MS group, and overlaying it, another control group, with the exercise increased markedly, to see if they could reproduce what the PWC data was revealing. The results were, and still are astonishing, and vindication for all PWC's who experience dismissal, ridicule and disdain for trying to explain to the world how ill we are.

(Click on the image to enlarge, and for further details see my original blog posting I mention above.)
So now, Cort from Phoenix Rising  (and if I have failed to do so, let me just say Thank you Cort! You are another one of the titans of CFS advocacy that we need so very very much!) has written a followup on what is currently happening in Utah today, as a result of the Light's study, and the XMRV association with CFS/ME discovery by the Whittmore-Peterson Institute, the National Cancer Institute and the Cleveland Clinic.

"We had heard that the three dozen or so people who participated in the Light’s fascinating exercise study were brought back to get tested for XMRV. What we didn’t know is that that study has recently been expanded - greatly. Since one thing researchers do not do is repeat negative studies, the only logical conclusion we can draw is that enough CFS patients tested positive for XMRV to make a greatly expanded and obviously much more expensive study worthwhile."

There may be some opinion of what this means on Cort's part, but he is Not without the facts to back it up, or he just wouldn't have 'gone there'. So, I invite you all to read his latest publication. It's good news, and so very welcome to us who have shouldered the stinging brunt of the quick and dirty so called 'replication' studies from the UK, and the Nederlands. 
Thank you so much Cort, for this very encouraging followup!

˙·٠•●♥ ƹ̵̡ӝ̵̨̄ʒ ♥●•٠·˙

Tuesday, March 23, 2010

XMRV is infective in primates and produces an immune response

"XMRV is infective in primates and produces an immune response. The presence of XMRV in EPS and effect of semen on infectivity suggest sexual transmission. The presence of an ARE and the stimulatory effect of androgen suggests that XMRV integration into host DNA could impart androgen stimulation on cellular genes, serving as a potential oncogenic mechanism."

See entire abstract here:

Characterization of XMRV in prostate cancer

˙·٠•●♥ ƹ̵̡ӝ̵̨̄ʒ ♥●•٠·˙

Monday, March 22, 2010

Invest in ME: Letter from America

"Dr. Mary Schweitzer from Delaware, USA, was a tenured professor of history before becoming ill with ME in 1994. Mary has been an active and very passionate advocate for people with ME for several years writing articles and taking part in the CFSAC (Chronic Fatigue Syndrome Advisory Committee) meetings to allow the patient's voice being heard."

Another article from Mary that pinpoints where the truth, and non-truths lie.

Grass Roots Advocacy; by Khaly Castle

See all comments as well for further information. And yeah Khaly, a big thanks to Erik Johnson as well from me, for still speaking about his experience, and sharing his comprehensive personal knowledge on what happened in 1984 in Incline Village, Nevada. But I want to thank you again Khaly, for being able to express so damn well in your articles, what I cannot. 

˙·٠•●♥ ƹ̵̡ӝ̵̨̄ʒ ♥●•٠·˙

Tuesday, March 16, 2010

Letter to the U.K. Secretary of State for Health, from Invest in M.E.

Written and submitted by The Chairman and Trustees of Invest in ME

What a deliciously accurate letter based on the U.K.'s policy about people with M.E./CFS donating blood. It lifts my heart to read letters such as these.

Monday, March 8, 2010

There's something about Mary... and Khaly

Mary Schweitzer that is. And Khaly of CFS Un-Tied. There are many others that on a daily basis I gather strength and solidarity from their continued struggle to help us all be aware of the truth.  But these two I want to specifically hug from afar today. Thank you for your insights, your hard work to get the facts recorded and published, and then to make them accessible to all PWC's (Patients with Chronic Fatigue Syndrome) and the world. 

Every day, my day starts out pretty much the same. The questions I ask myself do not vary so much.  "Can I sit at the computer today?" "Will I be able to absorb any new CFS related scientific and medical political information that may be on the WPI facebook site? "If I can actually absorb it, will I have the brain power enough to comment on the new releases and articles?" Will I remember any of it after lunch?" "If I can perform these tasks, will I be banished to the couch for the remainder of the day for exceeding my limits, with fatigue so bad I cannot hold up the remote control for the tv; or just hold the phone (I never answer on bad days, unless I want a near death experience)" Experience says yes. However, it's just so critical that I stay up to date on what is happening, that I make a silent agreement with the CFS demon that I am prepared to exist uselessly on my couch for the rest of the day if I can just mash a few keys for the CFS defensive. 

We're at war. Every day there are emergency alerts to warn PWC's and our advocates about incoming unsubstantiated findings concerning CFS, and/or quick and dirty so called 'replication' studies that must be addressed.  There are articles that proclaim shoddy findings that refute the WPI's, the Cleveland Clinic's and the national Cancer Institute's XMRV findings in Science on October 9th, 2009.  We are few to respond, because most of us are too ill to even get to a computer. But to dismiss us as useless and insignificant is a mistake. A monumental one.  I may not be able to walk around the block, but it is a strategic error to think my spirit, my personal power, and my will to live to see those pay for trying to marginalize our lives, and extinguishing the dignity of all PWC's for greed and power, are just as fatigued as my physical self.  I have a weapon. Actually I have many, but today it's about just two.

These women are fierce warriors. Their understanding of the past and present bio-medical and bio-political issues is our tip of the spear of truth.  It's because of their tenacity and dedication that I am able to mash the CFS defensive keys on my keyboard.  Countless times I have been able to use their hard work to our advantage, through links in comments I make sure to write daily, as needed.  BAM! POW! Take That, and THAT Dr. Wessely and Dr. Reeves. SLAM! Your powers are what are useless and insignificant these days.  That's right, retreat to the rear!... to your backrooms, and sort out the 'how' and the 'when', and 'who' you can blame as you sputter and fume.  And don't look to those who have been pulling your strings for the last 20 years. You can rest assured they 'think' they have obliterated any past affiliations with you already. And everything else will be blurred.  And the ones that 'think' they have safely retreated; well, they need to upgrade their arsenal. Theirs are no match for the likes of Mary and Khaly. 

So Mary and Khaly, I thank you.  Thank you for your presence. Thank you for your dedication. You fortify our ranks with courage and strength.   

ASCO GU: Novel Retrovirus Mimics HIV Transmission

"SAN FRANCISCO -- A novel retrovirus implicated in prostate cancer appears to be transmitted much the way HIV is, researchers found. 

The recently-discovered xenotropic murine leukemia related virus -- dubbed XMRV -- likely spreads through contact with blood and semen, Eric A. Klein, MD, of the Cleveland Clinic, and colleagues reported here at the Genitourinary Cancers Symposium....."

see more here