"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

Tuesday, January 19, 2010

A Picture is Worth a Million PWC Words.

Imagine being attacked during a morning swim in the ocean surf. You recognize instantly something must be eating you alive. You don't know what it is, but in a moment during the struggle, you reach underneath the surf when the monster is revving up for another attack, and you can feel that your flesh is ripped apart on your legs. You now understand the damage being inflicted upon you even if you don't know what the monster is. You can make educated guesses based on the violence of the attack, and given the evidence underneath the surf; and based on those inferences alone, you can better plan your attack and/or hopefully your escape.

Dr. Lucinda Bateman showed us a slide yesterday in her Webinar presentation on XMRV, hosted by the CFIDS Association, and this is how I felt when viewing it. I could SEE the damage being inflicted on my body during post-exertional malaise. It was another one of those CFS watershed moments for me. We still don't know what is causing the damage or why, but the slide I will show you below clearly details the violent damage being inflicted. It is evidence I can use to recognize what I might be able to do to attack the monster, and increase my quality of life. It also is evidence I can show to the people in my world, that may not understand the violent attack of CFS.

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.  Quoting from the Blood Biomarkers article:

"First, the investigators’ logic is based on mouse experiments they conducted to understand sensory muscle fatigue and pain. These animal studies showed that there are molecular receptors that act together to detect the metabolites produced by muscle contraction. Second, the investigators used the findings from mouse experiments to develop a hypothesis for examining the blood in CFS patients and controls to look for activity of genes shown to detect metabolites that result from using muscles. Third, they used the kind of moderate, full-body exercise that is known to cause post-exertion fatigue in CFS but is well-tolerated by healthy control subjects."

For years, PWC's (Patients with Chronic Fatigue Syndrome) have been trying to tell their doctors and caregivers how they are physically feeling.  For years we have tried to tell our family and friends the same.  We physically cannot tolerate exercise, unless we wanted to experience a near death experience for days after.  They couldn't get that. And I can see that. We don't Look sick.  Most of the time, every word we have tried to use to explain the debilitating fatigue was in vain. I explain it as partying hard all night with alcohol and recreational drugs; smoking a pack of cigarettes when you don't smoke, and staying up all night. Then with no sleep, you start climbing Longs Peak with a 40 pound pack, and the worst hangover you have ever had. Then, as you reach the top at appx. 14k feet, you get the worst flu of your life. Add it all up together and that's how a PWC feels every day.  I know this is what it feels like, because I actually did this in my thirties, before I got ill. Yes, it was a bad day. :+)

Regardless of how we try to explain it, it just seems impossible to understand.  Or, if your reference does get through to whomever you are explaining it too, inevitably they think "There's no way. There's no way someone can feel that way day in, and day out, for weeks or months, or even years? They have Got to be exaggerating"   Well, we don't have to try and explain it anymore; at least try to explain why we 'crash' after exceeding our limitations.  This picture speaks a million PWC words, and then some, about what happens. 

(Click on the image to enlarge)
The top slide in the image represents healthy controls after 25 minutes of exercise on an Airdyne bicycle (uses both arms and legs to turn the wheel). The middle slide represents results of CFS patients given the same test. The bottom slide represents MS patients, as well given the same test.  I can try to interpret for you?, but I am sure I wouldn't do it justice. So, I do recommend a short trip to the article for a detailed explanation. One thing I can tell you is that by looking at the above slide, it's just astonishing what happens to us during post-exertional malaise.  I can point to the tallest marker in the middle slide which represents the results from the PWC testing, the pink one?, and tell you it is associated with cardiac outputAnd I cannot help but wonder how this relates to Dr. Paul Cheney's theories, and evidence, that a PWC's heart has a Left Ventricular Diastolic Dysfunction (Page 5 in the PDF) but not in the normal sense of the definition. Cheney comments that:

"...patients with M.E. (and CFS) suffer from cardiac problems since they cannot pump sufficient blood to the heart. He explains that the inability of very ill patients to stand up is the body protecting itself from cardiac stress and possible death. Cheney explains that if patients draw down their lifestyle to live within the means of the reduced cardiac output, then progression into congestive cardiac failure (CCF) is slowed down, but if things continue to progress, a point will be reached where there is no adequate cardiac output, and dyspnoea (Shortness of breath) will develop, with ankle edema and other signs of congestive cardiac failure. In order to stay relatively stable, it is essential for the patient not to create metabolic demand that the low cardiac output cannot match. Attempts to push beyond limits will cause injury or death."
Any PWC that has doubtful family and friends, doctors and caregivers?; all they need to do is show them this slide and the corresponding literature that backs it up.  It says it all.  Thank you to all the doctors, scientists, and PWC's that participated in this ground breaking discovery of what literally happens to us during post-exertional malaise.  You just helped us save energy in trying to explain what happens, and how we physically feel.  You validated our own sense of just how physically sick we truly are.  I cannot express to you my thanks for this evidence.

Thursday, January 14, 2010

Just tell the truth already UK; get out of bed with the insurance industry....

... and leave their seduction behind. We understand the insurance industry is more powerful the the US IRS, and that the big bad scary wizards are frightening you from behind the curtain. We also understand they are no doubt wanting the US and the UK to be on the very same page with respect to CFS/ME. Because if they are not, it makes it more difficult to control how CFS/ME is diagnosed now, and in the future. What was that you say UK?, oh yeah, that the DSM-IV (Psychiatric Bible) is being revised and the insurance industry wants to make sure that CFS/ME would be classified as a somataform disorder (hysteria), even though "WHO classifies it currently as a neurological disease, and by the CDC as a disease of the nervous system?"** Wait what?, the edits are to be published for review this month? And publication for the new DSM-V is due in May, 2013? Gosh, go figure you want to stall. 

How can this happen? Well, it can't if there is any evidence that reveals CFS/ME is a Neuroimmune Disorder. If XMRV is found to have a high association with CFS/ME patients, then the insurance carriers are screwed. But wait. I'm confused.  Why again does the UK specifically state that CFS/ME patients cannot donate blood? Why was I recommended by my first diagnostician in 1998, who is now in the CFS department at the CDC, to also not donate blood? Since when is a somataform disorder an infectious disease?

The insurance industry needs to legalize that any diagnosis made for CFS/ME on this planet comes from the psychiatric industry, because they currently save 10's of billions of dollars every year by not having to pay out long term disability benefits to CFS/ME patients. They will do everything in their power to move this proven Neuroimmune illness into the DSM-V, to maintain the influx of illegal wads of cash. The Psychiatric industry needs it too. How else will they be able to keep their CBT and GET programs up and running?.  The corporations are not blameless either; but that's exactly what they hope to be.  I personally saw one shift to new policies provided by their insurance carriers, that specifically excluded CFS/ME and Fibromyalgia patients in 1996. And I want to know how much Big Pharm gains to net with the medications the psychiatric industry will use to 'maintain' this 'hysterical' disease. Are you kidding me? The Scientology cult scam has nothing on you people.

The insurance industry will attempt to slow any CFS discoveries down to a crawl or even a halt, until they have what they want.  And the UK weasels, and their CDC/NIH cohorts in the US, need to maintain their bed bug relationships with those who are keeping them alive and squirming.  But you can't hope to continue much longer.  Look around you. Are your industry friends still acting towards you in the same way? Are you sure? Those whispers you hear in the hallways? They are not hallucinations.  You will be on the way out soon, and your colleagues and peers know this, and will want to get as far away from you as possible.  So, those of you in the UK that are still under the wizards spell, we get that either you are trapped by them under the bed covers, and/or so tongue-tied by your egos inability to say "Damn, we screwed up", that you continue to spew mis-information concerning CFS/ME and the XMRV findings. But, for crying out loud; either join the WPI in a positive and open engagement to CORRECTLY replicate their research, which was done in concert with the National Cancer Institute and the Cleveland Clinic, or just slink away in shame already. Trust me, we won't follow you. Except for the criminal proceedings.

Here, I will give you an out (as if you haven't already built this back door). See, it's true that people get chronically fatigued. All kinds of people. Chronically ill people with cancer, diabetes, or heart disease, can be chronically fatigued. People that have other genetic and hereditary diagnosed illnesses can be chronically fatigued. People with lifestyles that aren't exactly um.. conducive to long life and happiness, can be chronically fatigued. Psychiatric patients can also be chronically fatigued.  So, just say "Oh well yeah, we get it now. And our program does help some that are chronically fatigued, but they most likely do not have XMRV.  CFS/ME patients do have XMRV. And XAND (XMRV Associated Neuroimmune Disorder) is to XMRV as AIDS is to HIV." See how that works? Although it's doubtful, you may still have your careers (your reputation is still shot though. I mean come on, if you think your reputations will survive this, then now would be a good time for you to commit yourselves voluntarily. I will supply the referral). You can still help those who do suffer from chronic fatigue. No harm, no foul. Well, wait. You did contribute to the neglect, and deaths of thousands CFS/ME patients. You (UK) forcibly removed CFS/ME patients from their homes, and admitted them to mental institutions, where you tortured them until they died 2 weeks after their release.  WHO ARE YOU PEOPLE? HOW DO YOU SLEEP?

Seriously, how the Hell do you sleep?

Please help me help the Whittmore-Peterson Institute continue their XMRV related research.  They want a treatment. They want a cure. Go here to learn how you can help.

Wednesday, January 6, 2010

WPI's statement regarding the UK's bogus replication study.

In light of the UK's announcement of their XMRV replication study today, and how they failed to connect XMRV with any of their CFS patients?, here is a statement from WPI:

NOTE: WPI conducted a 6 month rigorous peer review of their findings before sending their research to Science for publication. The UK reviewed theirs for.. um... 6 days? 

Those of us who have been ill with CFS/ME for many years, recognize the actions of those who are trying to impede the process of replicating WPI's research that points to the new XMRV retro-virus having associations with CFS/ME. They are running for cover, and using mis-information such as this as a distraction, and to soothe the psychiatric and insurance industry demons. They can try to slow down progress to a crawl. It might give them time to think of how to save their reputations, and their careers. They are running out of breath trying so hard. It is a marathon they cannot finish, much less win. Remember now, just because someone is in front of the pack, doesn't mean they are leaders.

We've lost Jack

I met him in the WPI forums in October. Here is his post that Christine Douglas received permission from Jack to use. I hope it's ok for me to share:

Posted by Jack, October 2009.

At this point; my main concern is Hope for all of the much younger. I was fortunate. I didn't contract this until age 50-(15)-years ago. At least I had a very good life until then. I truly lived "La Dolce Vita" (the sweet life). So please understand that my "rage" & skepticism isn't about "me"; but for those who do have the time if treatment becomes available. Years ago; when diagnosed with "Chronic Epstein-Barr Virus"; I was warned that in my future ,I might develop Cancer. I was told that people with unusually high titers of "Epstein -Barr", carried this potential Cancer risk,--Lymphoma, etc.- So even then ; it was known that their was a viral "link", but was never pursued, because @ that time it was referred to as the "YUPPIE FLU" for those of you who might not be aware of our "hypochondriac Stigma", which still exists to date, unfortunately, but is "slowly" becoming acknowledged as REAL. I was diagnosed with Prostate Cancer 4-1/2 years ago & refused ALL treatment. My urologist thought that I was out of my mind. After all; "they" could CUT, BURN or POISON it. I was told by him that the most time I would have on this Lovely planet was 4 years, without treatment. Well folks; I'm here 6 months longer than my "Expiration Date". My reason for refusing treatment is that my immune system is & was shot & that any of the options presented to me by my very concerned Uroligist; would kill me due to "trauma" from any, or all suggested alternatives. We are too ill to endure conventional means.

After all; death isn't all that bad. At least one dies "from" Prostate Cancer.--ME/CFS, you die "with" it ! --Well, I am a living testimonial that there IS a "Viral link" with ME/CFS. Now; the major question is which virus is the "ONE", or is it a synergistic effect of many, which wreak havoc in the immune system & allow these mutations to occur ? Every new day is a "Bonus" for me & I PRAY for all of us & ask that this "cure" will be available to the young in the very near future. Death for me would be a reprieve from this “Zombie” like existence.


Jack De Luca, our WPI friend and advocate, committed suicide yesterday.  God bless you and your family Jack. Sleep In Heavenly Peace.