"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.

Friday, May 28, 2010

The Evidence since 1954

This is by no means complete, as there are an estimated at least 3,500 pieces of documented literature speaking to the physiological basis for CFS/ME. But, it's a start, and cleary it states the obvious.

Documented involvement of Viruses in ME/CFS

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Tuesday, May 25, 2010

New Threat to US Blood Supply

From the Wall Street Journal today:

""We learned from HIV that we have to react aggressively to every next potential threat," says Michael Busch, director of the Blood Systems Research Institute in San Francisco and a member of a federally funded group studying whether the retrovirus XMRV, which has been linked to chronic fatigue syndrome, poses a threat to the blood supply.""

New Threats to U.S. Blood Supply

I notice they mention INTERCEPT by Cerus.

"The FDA declined to approve Intercept in the U.S. after a 2003 clinical trial showed a slight risk of a respiratory injury from blood treated with the system. Cerus Chief Medical Officer Laurence Corash says that in more than 75,000 transfusions in Europe there hasn't been any increased incidence of lung injuries with Intercept-treated platelets. The FDA doesn't accept European data. But Dr. Corash says the company is discussing "requirements for the size of a new clinical trial with the FDA, as well as preparing an alternative clinical study approach."

Since there was a successful trial of inactivating XMRV recently (Collaboration between WPI and Cerus), hopefully they will reconsider and look again at INTERCEPT.

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Wednesday, May 19, 2010

Car 54 - Where Are You??

"There's a hold-up in the Bronx, Brooklyn's broken out in fights; there's a traffic jam in Harlem that's backed up to Jackson Heights; there's a Scout troop short a child; Khrushchev's due at Idlewild...Car 54 - Where Are You?"

Ahhh There you are!! *cough*CDC*cough*

The CDC has published an article on .gov regarding an XMRV study. Although it does not focus on CFS patients, it does speak to the prevalence of controls, and how it concurs with the results of other studies with respect to a 3.7%'ish infection in controls. It references the WPI,CC,NCI study stating:

"Detection of XMRV in PBMCs and plasma of patients with chronic fatigue syndrome raises the possibility of blood-borne transmission; sexual transmission has also been hypothesized on the basis of indirect evidence"

The study concludes:

"Together with earlier observations on increased XMRV replication in RNase L–deficient cells (1,12), this finding implies that the immune system plays a role in controlling XMRV replication. It remains unknown whether immunosuppression predisposes a patient to secrete infectious XMRV from the respiratory tract or whether presence of virus might be meaningless for epidemiology in a way similar to HIV-1 (15). Future studies should address whether the respiratory tract might serve as a source of XMRV infection or whether immunosuppression might cause an increased risk for primary infection."

This 'could' be Very important in understanding why there were specific CFS related outbreaks.

Xenotropic Murine Leukemia Virus–related Gammaretrovirus in Respiratory Tract

It's good to see the CDC show up to the party. A bit late, BUT still. I am thinking as they move towards understanding transmission rates, wouldn't their Best bet be to use a CFS XMRV +ve cohort to do so, since the XMRV prevalence is so high in them? Will they include immunoincompetent (ahem HIV) samples inhouse? Have they tested for XMRV against their HIV sampls already?

Stay Tuned for more Car 54 action packed episodes!

EDIT: XMRV in human respiratory tract (From Virology Blog) This article is much easier on the brain to read. It puts it in a context the non-medical professionals can understand.

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NOTE: For those not nearly as old as I am, Car 54 was a TV show in the 1960's that followed the 'madcap' adventures of two police officers stationed at the 53rd precinct in the Bronx.

From Wikipedia: Car 54

Tuesday, May 18, 2010

XMRV on Tour!

Unconfirmed sources tell of a late May tour by Dr. Peterson, Medical Director of WPI, to Europe and Sweden/ Finland.

XMRV - a novel retrovirus: What Doctor Should Know about it.

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WPI and Cerus Confirm Inactivation of XMRV by the INTERCEPT Blood System

Astonishing positive news about the blood bank safety issue.

WPI and Cerus Confirm Inactivation of XMRV by the INTERCEPT Blood System

Although, the article stated the recommendation and presentation will not be put before the AABB until October. Hopefully, they will address it sooner if we keep this alive in the media.

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Monday, May 17, 2010

Kenneth Feinburgh, we need you!

Who else is better suited to represent us for compensation from the health insurance industry? No one.

Compensation Czar Kenneth Feinberg

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Saturday, May 15, 2010

Links to May 10ths 2010 CFSAC Speakers

Annette Whittemore

On video

Mary Schweitzer 

All public speakers

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X Rx Blog

Harvard/Einstein educated, and at one point, Assistant Director of the ED and Director of Urgent Care at Santa Clara Valley Medical Center. Dr. Jamie Deckoff-Jones blogs about her and her daughters' XRMV treatment using HIV Anti-retrovirals.

X Rx

I plan on referencing and steering my infectious disease doctor to her informaion. What's kinda sad, is that I HAVE to steer her towards anything conncerning XMRV.

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Wednesday, May 12, 2010

Where we aren't, anymore.

Today is May 12th. It is International CFS/ME Awareness Day.

I have watched it come every year for appx. 15 years of the 17 I have been ill with CFS/ME. I try to be involved, but sometimes it is just futile. I try to write letters; send emails. Usually, I end up watching it leave with a sense of defeat, and paying acutely and severly for the expended energy I seemingly used in vain.

Last year on October 9, 2009, Science published a study done between the WPI, CC and NCI. It detailed an association between CFS/ME and XMRV. There's so much information on this blog about this already, so I am by-passing the details.

For me, saying that the results of this study marked a watershed ping on the CFS/ME horizon of possibilities is an understatement. IMHO, this discovery has the potential to sever our being held hostage in an endlessly bleak and unfathomable CFS/ME nebula.  I feel we've never been closer to an answer, and possibly treatments. And if we can't make the world aware of us as much as we want today?, my wish is that all PWC's (Patients with CFS/ME) ON THIS PLANET are aware of what has changed towards the positive for us since October 9, 2009.

So, at 11:21 am, on this day of May 12th, 2010, I proclaim that we are on a New pilgrimage. We are rising up. We are strengthend with a restored covenant of new actualities; intent on manifesting our dreams of thriving in health and abundance, as is the right of every human.  Turn Left HERE!  Where we were has been blinked out of existence. It's in the stars people.

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Want to help?  Visit the Whittemore Peterson Institute and donate. ANY amount helps.

Tuesday, May 4, 2010

Positive ‘XMRV-study’ a matter of time

A dutch press release during the multi-day 'Centennial Retrovirus Meeting' conference in Prague.

Kick-back from Dr. Coffin on the XMRV/CFS non replication studies performed.

Can I just say, awesome.

ESME on Dutch Press Release

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Dr. Bell makes a personal appeal to fund WPI's research with XMRV/CFS

Even the smallest donations are appreciated.  Please help!

Taken from WPI's web site

David S. Bell MD, FAAP
Lyndonville, NY 14098
May 1, 2010

To my friends with ME/CFS,

I would like to put out a personal appeal for funds to be sent to the Whittemore-Peterson Institute (WPI) in order to speed up the progress of the current research. Here is my reading of a very complex situation.

Medical authorities, educational institutions, governmental agencies, and most practicing physicians have disrespected and minimized CFS in just about every way possible, from creating an insulting name for the illness to advising extreme caution in treatment, except cognitive behavioral treatments.

It is easy to dismiss my remarks to follow by saying that I am biased. And it is true, I am very biased and for twenty-five years I have quietly sat on the sidelines believing that science will win out and true progress will be made. I am beginning to think this has been a great mistake. The profession I love has failed miserably.

In 1985 an outbreak of CFS hit Lyndonville NY and affected 210 persons, 60 of whom were children. The official response from the CDC and the New York Health Department was that this was mass hysteria. No one talked with a single patient. In 1990 I worked with Dr. Elaine DeFreitas and Dr. Paul Cheney and a retrovirus was found and the material published(1). A second paper had been accepted by PNAS and contained a photograph of C-type retroviral particles from a tissue culture of spinal fluid of one of the children in the Lyndonville outbreak. This paper was suddenly pulled and not published after a couple of flawed negative papers. A complete description of these troubled times is in Osler'sWeb by Hilary Johnson. The funding for our studies was pulled and all work on this abruptly stopped.

I think the same tactics are being employed to hamper the current work on XMRV by the WPI. The WPI is a private organization and, as I understand it, no federal grants or funding has been forthcoming. There have been three negative PCR-only studies, which have established only that CFS cannot to be superficially studied. At this time no study that has attempted to replicate the WPI study has been heard from. Many CFS research organizations have declared publically that "XMRV is a dead issue."

Nothing is farther from the truth. I cannot predict the future, but my fear is that the current political and scientific organizations who do not want to see retroviral involvement will attempt to stifle studies on XMRV in CFS. Huge amounts of money are spent on studies on cognitive therapy, and studies proving that CFS is heterogeneous (you can argue that polio is heterogenous).

We have not heard from the CDC, other than the inappropriate comment that this was not likely to turn out to be anything, made right after the Science paper publication in October 2009. We are now eight months later and not a peep. Maybe they are finding XMRV and want to be very careful. Maybe they haven’t looked and are assuming that this heretical idea will blow away. Eight months? And the Band Played On.

It is possible that thirty other labs are finding XMRV in CFS or that no one else in the world is even looking for it. Science requires that labs do not disclose their findings prior to publication and I agree with this rule. But is the WPI going to be isolated by the scientific community and wither away because of lack of funding? Is XMRV going to become more of the compost of CFS research?

But there is an alternative. We cannot wait ten years for science to grind out its conclusions. Every person in the world who believes that CFS is important should send $10 to the WPI. I plan to send $10 today. It may not be much, but it is a start. There may be 10 million persons in the world with CFS. Let's see, that’s…I need a calculator. May 12 is our day. Let's do this.

After 25 years of work in this field I do not have much. But I have my integrity. I feel that WPI has made an important discovery and I feel they are an ethical organization, they are not padding their pockets. But I also have my fears. And the greatest fear of all is that their discovery may not be appropriately followed up.

For the 9,999,999 other people out there who think CFS is both real and important, send $10 to: Whittemore Peterson Institute, 6600 N. Wingfield Parkway, Sparks, NV 89436.

Thank you.

David S. Bell MD, FAAP

1. DeFreitas E, Hilliard B, Cheney P, Bell D, Kiggundu E, Sankey D, et al. Retroviral sequences related to T-lymphotropic virus type II in patients with chronic fatigue immune dysfunction syndrome. Proc Natl Acad Sci. 1991;88:2922-6.

Lightning Strikes Children: An Expose by Khaly Castle

"Will we stand by and watch lightning strike children?"

Well said. Pleaase read this expose. They are going to experiment on 90 children with CFS/ME with behaviour modification techniques. If they HAVE to experiement, why can't they experiement on adults?

Khaly explains what they will do to them.

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Saturday, May 1, 2010

Dr. Myhill Banned for Prescribing B-12 and Magnesium

Dr. Sarah Myhill has been an ME/CFS advocate, and care provider for 30 years. Her focus is on Ecological Medicine, and she states that:

"...Ecological Medicine. 'is' ...how I treat various conditions, the sort of diets that I use and the lifestyle changes that I recommend and the micronutrient supplements to take in order that they can sort out their own medical problem."

She has treated those whom have been told there is 'Nothing more I can do', by their primary doctors, as in the case of Patricia Chell. She was told they could do no more for her, and she had cardiac heart failure. Please watch her story here:

Private Powys GP banned from prescribing drugs by GMC

Basically, Dr. Myhill is being banned because she gives B12 and Magnesium shots. And because she helps ME/CFS patients.

Please visit Dr. Myhill's web site, and show your support. Please download her 'free' information before she has to take it down as mandated by the UK GMC (General Medical Council). Yes 'free', and that's the way she works. We cannot believe how she is being treated. Mostly due to the fact imho, that she treats ME/CFS patient (and exceptionly well), when the UK equivalent of the CDC treats ME/CFS as a psychological illness (We have abnormal illness beliefs; although there is published literature stating otherwise and has been circulating for 20+ years.) Instead of treating ME/CFS patients with dignity and support, they instead back down doors in the UK; evict children with this illness to a mental hospital where they are subjected to dangerous exertion levels. One woman died after this 'treatment'.  They also took a child and Threw her in a swimming pool to 'prove' she was faking. She almost died. And they say Dr. Myhill "... is a potential risk to patients??"

The UK GMC is Unbelievable. Criminal.

Dr. Myhill's web site

Please show your support by signing Ruth Myhill's (Dr. Myhill is her 'mum' :+)) 


Join her facebook support site.

Thank you for supporting her!

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