"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.

Tuesday, January 26, 2010

Crickety-Crockity, Crickety-Crook

The new year has borne fevered challenges in discovering what causes Chronic Fatigue Syndrome/Myalgic Encephalopathy (CFS/ME). Instant collaborations between the bio-industry in the US, in the UK, Sweden, and Norway to mention just a few, immediately followed the Whittmore-Peterson Institute's (WPI) 2009 discovery of the XMRV retrovirus (One of only 3 other retroviruses ever discovered, HIV, HTLV1, and HTLV2), and it's association with CFS/ME.

"All of this has happened before, and it will all happen again."  - Peter Pan

Those who have invested many years categorizing and treating this Neuroimmune disease as a psychiatric illness stand to lose so very much, unless they can prove the collaborative XMRV discovery between WPI, the National Cancer Institute, and the Cleveland Clinic was in error. Imperial College London raced to get their replication study results published recently in PLoS
. It seemed to focus on dismissing the ground breaking discovery, instead of trying to seriously replicate WPI's research. A followup article from Science magazine, discusses what happens when scientists race to replicate ground breaking research. Inevitably, the results from moving too fast can be fraught with errors. In the case of the Imperial College London results, they used the wrong protocols, data pool and bio markers, so of course they failed to detect XMRV in any of their test samples. It's unfortunate that the newest result from Imperial College London was reviewed by peers for only three days before publication (Compared to the rigorous six month peer review for WPI's research). A longer review would have spotted the multiple technical errors. It is obvious the publication was not a serious replication study, but an attempt to mislead Science readers that the WPI study was de-bunked.

"As a special offer for today,

I'll tell you what I'll do.
All those who sign without delay!
Will get a free tatoo.
Why, it's like money in the bank
C'mon, join up, and I'll be frank:
Unless you do, you'll walk the plank!"

The WPI has also been attacked with untruths about their association with VIP Dx, who is offering CFS patients XMRV lab testing. “We structured the licensing contract to be sure that any and all profits that might emerge at VIP Dx from XMRV testing come directly back to WPI to benefit the research program” said Annette Whittemore, President and Founder of WPI, in a press release on Jan. 14th, 2010
. Annette Whittmore founded WPI using her own assets, to hopefully generate meaningful results to help those who suffer from CFS/ME. She has seen first hand how deadly this disease is, from personal experience with her daughter Andrea's battle with CFS/ME.

There is so much at stake here. We are on the verge of understanding what XMRV does, how it is transmitted, and possibly a treatment, or even a cure for CFS/ME. The Health and Human Services Working Group on XMRV will have oversight over the federal effort on XMRV
. Their objectives include (but may be not limited to):

1) Attempting to standardize and validate tests for XMRV. Then they'll test 1,200 healthy donors and 100 patients provided by the Whittemore Peterson Institute.

2) Assessing the prevalence of XMRV in the general populations, the blood supply and in other groups of people with CFS.

3) Finding out how XMRV is transmitted, what effects it may have, and how it may affect other groups.

"No, you can't get friendly with a crocodile
Don't be taken in by his welcome grin
He's imagining how well you'd fit within his skin"

The research to replicate WPI's collaborative discovery, the work being done by HHS to identify the prevalence of XMRV, and the risk to our blood supply is urgent. But it needs to be done with sound science. The CFS/ME community has seen in the past how embedded with other interest groups our own CDC and NIH are. They want CFS/ME legally categorized as a psychiatric illness for several reasons:

1) This serves the health insurance industry goals directly, as they save tens of billions of dollars annually by not having to pay out long term disability benefits to the millions of CFS/ME sufferers in the US.

2) Bill Reeves (Head of the CFS department at the CDC) still has vested interest with his CDC contracts with the Emory Mind and Body Program, and ABT Associates. They even made him an Adjunct professor for Psychiatry at Emory even though he is Not a Psychiatrist. ABT Associates has been investigated and penalized by the Feds for outright fraud in charging hours for non-existent workers
. Hundreds of millions of dollars have been wasted at the CDC when it could have been used to help discover the causes of CFS/ME, rather then used to serve the psychiatric and health insurance industries. It's profoundly shameful, if not criminal.  

"Crickety-Crockity, Crickety-Crook"

3) Publication for the new DSM-V (The Psychiatric Industry's bible) is due in May, 2013. If the UK and the US both use the same language to suggest the CFS/ME is a mental disease, it will make it easier for them to control edits for DSM-V, that would legally categorize CFS/ME as a somataform disorder (hysteria). That would mean only psychiatrists could make the legal diagnosis of CFS/ME. Which means the health insurance industry would be very satiated (their corporate clients too), as would the contractors Bill Reeves wants to continue with at the CDC.

"Yo Ho, Yo Ho, Yo Ho, Yo Ho, Yo Ho
You'll love the life of a thief
You'll relish the life of a crook
There's barrels of fun enough for ev'ryone!
And you'll get treasures by the ton
So come and sign the book
Join up with Captain Hook!

The CDC currently categorizes CFS/ME on paper as a disease of the nervous system, and it has already been proven that CFS/ME is a Neuroimmune disease. But since there is no NIH or CDC recognized standard lab testing that reveals the organic basis of CFS/ME, they can continue to insist CFS/ME is a mental illness. With their special interests threatened, our biggest fear is that they will continue to try and stall any XMRV CFS/ME related research discoveries while our CFS/ME friends continue to suffer and die, and our blood supply safety risk increases. We learned our lesson with HIV didn't we? Seemingly not. 

"Never smile at a Crocodile"
- So say we all Peter Pan, so say we all.

Help continue the research momentum at Whittmore-Peterson Institute by donating. PWC's (Patients with CFS) cannot expect help from government grants. In the last 20 years, there have only been a handful of grants approved for CFS/ME research, even though some of the grant applications submitted received the highest review points ever awarded. We need your help. We need to resolve the CFS/ME crisis now.

Thank you

˙·٠•●♥ ƹ̵̡ӝ̵̨̄ʒ ♥●•٠·˙

: SCIENCE VOL 326 23 OCTOBER 2009: http://www.sciencemag.org/cgi/rapidpdf/1179052?ijkey=m3wzKT4yJqEyk&keytype=ref&siteid=sci
: Failure to Detect Article in PLoS:PLoS ONE 5(1): e8519. doi:10.1371/journal.pone.0008519
:ME Association Reprint:Science 15 January 2010: Vol. 327. no. 5963, pp. 254 - 255 DOI: 10.1126/science.327.5963.254
:WPI In The News:January 14, 2010: WPI Announces Availability of Updated XMRV Testing

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