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Dr. Bell States It's Urgent to Speed XMRV Research Given Stifling Interests; Issues Personal Appeal for Contributions to WPI

  [ 304 votes ]   [ 12 Comments ] • May 6, 2010

Dr. Bell has issued the following open appeal, fearing that “the current political and scientific organizations who do not want to see retroviral involvement will attempt to stifle studies on XMRV in CFS,” while “Huge amounts of money are spent on studies on cognitive therapy…”

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 Ostler's Web by Hillary 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 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 publicly 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 heterogeneous).

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 outs 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. Lets 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

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No thank you.
Posted by: ZenMonkey
May 2, 2010
Until it can be satisfactorily explained why Judy Mikovits is presenting at the AUTISMONE conference, where quacks go to gather, and why she has publicly speculated on a link between vaccines and autism, I will not send money to the WPI. I have supported the CFIDS Association's SolveCFS fundraising effort instead and encourage others to do the same.
Reply Reply

WPI and Dr Mikovits
Posted by: oerganix
May 2, 2010
Nothing will probably satisfy you, but it has been shown that XMRV replicates when the immune cells are activated by infection. What do you suppose vaccines do? They activate immune cells. Therefore, it is plausible that activated immune cells stimulate XMRV to replicate.

Of course, Dr Bell couldn't possibly know more about WPIs and Dr Mikovits' qualification than you, right? He couldn't possibly know the dark history of derailed attempts to actually find the cause and the cure/treatment of CFS, right?

What vaccine maker do you work for?


David Bells suggestion has much merit
Posted by: IanH
May 3, 2010
I have donated $40 to WPI, $10 for each of my family who suffer from CFS. At least this is money for sorely needed research. If I put it anywhere else it is lost. Also just to let you know of research being done in australia. Their government is funding $2.5m to identify markers for CFS. My daughter is part of the research. It would be nice to know where else research is occuring Ian Hodgson
Reply Reply

Count me in!
Posted by: LaurieEm
May 4, 2010
Thank you Dr. Bell - I've just "beamed" some money via Paypal. I would hate to see the momentum die down to nothing. Three cheers for WPI - please use it well.
Reply Reply

Posted by: Abby B
May 4, 2010
I have donated $50 and then another $10.
Reply Reply

Dr David Bell
Posted by: shirleyb121101
May 5, 2010
For those of you not aware, Dr. Bell discovered CFS in his patients in Lindenville,NY at the same time it was discovered in Lake Tahoe. I was diagnosed with CFS in 1988. Dr. Bell is also a physician of the highest itegrity, and has devoted his life's work to finding a cure for CFS. Dr. Bells' endorsement of the work at WPI Institute only strengthens my own confidence in the fact that WPI Institute will disccover the medication necessary to restore our good health. For the first time in all these many, many years of suffering, we have reason to hope I made a contribution to WPI a few months ago, and will again.
Reply Reply

How many people will see this though?
Posted by: IanH
May 5, 2010
I just wonder how many people read this site, even this article? How can Dr. Bell's challenge be made more widely known? I recently attended a meeting of chronic fatigue group in Australia. Only about half knew of the discovery of XMRV. Of those about half thought it was just another virus that will "come and go". So within the population with cfs there is much skepticism and many sufferers still think at the symptoms level and not at the research level. I wonder about other support groups, how much discussion goes on about research and how much commitment is there to $ support research?
Reply Reply

Posted by: PiperMom
May 6, 2010
I was diagnosed with CFIDS over 23 years ago. Recently I tested negative to XMRV, and I still gave my $10.00. Why? because I know that even if it does not benefit me right now, it will benefit others. This is a truly nasty disease! Yes, I have it. I just have a variation of it. I have no idea from whom or where I picked this up. All I know is that I fit the guidelines, and my doctor diagnosed me immediately. As for Dr. M speaking to a gathering of quacks... why not? She just might persuade one of them that this is very real, and that one person might help. We don't speak to those who already know about the disease. We must educate those who don't, no matter who or where they are. Anita
Reply Reply

To ZenMonkey
Posted by: oerganix
May 6, 2010
Nothing will probably satisfy you, but it has been shown that XMRV replicates when the immune cells are activated by infection. What do you suppose vaccines do? They activate immune cells. Therefore, it is plausible that activated immune cells stimulate XMRV to replicate, and while replicating in the body of a child, cause brain damage that leads to the autism spectrum. Of course, Dr Bell couldn't possibly know more about WPIs and Dr Mikovits' qualification than you, right? He couldn't possibly know the dark history of derailed attempts to actually find the cause and the cure/treatment of CFS, right? What vaccine maker do you work for?
Reply Reply

I doubt XMRV is "the" cause - but it doesn't matter
Posted by: IanH
May 31, 2010
I doubt if XMRV is the CAUSE of CFS. But you have to admit since WPI linked it to CFS there has been more intense activity. I believe CFS is a chronic immune dysfunction possibly caused by a variety of pathogens interacting with a dysfunctional immune system. Look at all the viruses that are implicated, EBV, HHV6, HHV7, HERV-K18, HERV-H, HERV-W, CMV, Human Parvo-B19, some Enteroviruses and XMRV. What does that tell you?? Are these viruses all causes? So we have to look at the conditions which change the immune system to such a chronic disablement or state. I don't think it is just the pathogens. Nancy Klimas is well onto this, looking at cytokine networks. The recent study treating people with HHV infections using antivirals specific for HHV's found success by removing those agents in some of the people but that doesn't mean that HHV's are the cause of CFS. Questions are: Are different forms of CFS caused by different pathogens? Are the different forms (symptoms) caused by polymorphisms? If you remove a pathogen does the CFS go away? Are the pathogens interacting with a dysfunctional immune system, if so, what has caused the change in the immune system: Multiple infections? Certain pathogen interactions? Neurological dysfunction creating immunological dysfunction (eg as is one theory in shingles)? I could go on but every piece of the puzzle needs help. XMRV is the strongest correlated pathogen so far so we need to get to treating people with XMRV to see if their CFS goes away when XMRV goes away.
Reply Reply

What is this review rating mean anyway
Posted by: IanH
Jun 5, 2010
:Was this review helpful?" I dont understand how someones comments about a review is a "review". The ratings/votes on these things is often nonesense.
Reply Reply

Vaccines and bio-weapons testing
Posted by: BeckieC
Sep 19, 2012
Several classified documents that have been "de-classified" hold the answers to most of these "new" fatiguing diseases. I am sick because of military vaccines. I know which ones caused which aspect of Gulf War Illness. About 6 years prior, Lake Tahoe was hit with pandemic fatiguing illneses without vaccines. Mycoplasma is a microbe that behaves like a virus; 13 different species invented in the U.S. and crop-dusted over resort communities at least 5 times since 1958 at Punta Gorda, FL. Then Plum Island, NY, became the mysterious lyme disease. We call it weaponized lyme, when early treatments for lyme do not work. In those patients that have inhaled crop-dusted lyme, we find XMRV. In Gulf War vets that served 101st Airborne during 1991 Desert Storm, we find lyme or weaponized lyme. In 82nd Airborne down the East Coast in North Carolina, we find no lyme, not even weaponized. But all were vaccinated by military pre-deployment and thereafter.
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