The Fight is on...Imperial College XMRV Study

[MEKoan]

Dear WPI,



Koan

 

[Orla]

Thanks Dipic, I agree with Dr. Yes's comment (below):

But I noticed that she back-pedaled a lot when you asked her about her direct criticisms of the WPI.

The important statement is her last one:

"Our data simply says that we cannot find this virus in a UK cohort."
Or rather, could not find it. That would be more scientifically accurate. But look how different this (appropriately modest) interpretation of her results is from the statements she made to the press, such as:


"We are confident that our results show there is no link between XMRV and chronic fatigue syndrome, at least in the UK."
That is a huge, and hugely different, statement... They don't seem like they are based on the same set of data, do they? Her later statement, the one she emailed you, is far more accurate. Compare it to the technicolor statement she made publicly and you can see the degrees of hype and hyperbole that went into their PR effort.

Very, very unprofessional and un-scientific.

And the frustrating thing is is that there is so few scientists involved in ME/CFS, that making sweeping statements that could potentially discourage further exploration in this area at this early stage, makes her remarks to the press especially frustrating. Luckily some of the other studies have already started.
Orla

 

[spit]

In case anybody else - like me - is wondering what a plasmid is, this from ucbiotech.org:

Man, I'm sorry. I was getting all over the place with language and it probably made things more confusing for a lot of folks.

In this study, the positive control used a plasmid that included the full XMRV genome, which means essentially that it's a little chunk of bacterial genome subcloned to contain the full XMRV chunk. It's a pretty standard way to move genes around. The "plasmid" isn't the important part of it, it's just a carrier for the XMRV here.

 

[kwietsol]

Thumbs up, WPI!

Thank you, WPI, for your incisive critique of the Imperial College study. And thanks, in particular, for being willing to point out that the Imperial folk may have been testing "fatigued psychiatric patients" rather than true CFSers. That needed to be said.

May your news release get as wide play across the pond as did the Imperial study results. Your words could lift some spirits over there.

 

[bluebonnet]

It is my belief that two of the reasons this this flawed study has been rushed through is to both deny National health Testing to UK patients and to deny National Health antiretroviral reatment to any UK patient who tests positively fro xmrv using private tests.

Also to keep ME/CFS firmly in the hands of the UK psychiatrists who are making a mint from it and several of whom also work for large insurance companies who would have to pay out to ME sufferers if it were proven to be a physical illness. The psychiatrists involved and the Medical Research Council have been working hard (and successfully) to prevent the latter since the early 1980s.

I agree. My ME/CFS doctor has told me that Simon Wessley's whole career and reputation hinges on finding no
XMRV association or any other pathogen or toxin responsible for ME/CFS. How utterly pathetic and unethical.

 

[JayS]

I''m still on page 24, so this may not matter so much given what can come to light in a 42-page thread that's only a day old. But...given what I saw about the associations with UCSF and King's College, I placed a phone call to a relative earlier who has been with UCSF for many years. We don't speak often, and I was lucky to get hm, so I didn't spend a lot of time.

He didn't know of Nixon of the top of his head, and his field has no bearing on CFS/ME, psychology or psychiatry. He said XMRV sounded vaguely familiar but that he wasn't really up on it. I told him a bit about the association with Wessely & that I would follow up with links explaining why this would seem disconcerting to us. I have no idea if there's anything he can do, or even if he would be so inclined--but he did say he knew of a colleague who might find this worth passing on to.

Of course if there's any reason for a followup I will post further. I"ve got some catching up to do on this thread.

 

[usedtobeperkytina]

Has anyone mentioned the idea of sending the UK samples to WPI and see if they can find it using their testing, instead of the one McClure used?

Why not swap samples? Wouldn't that be interesting?
If they did, they could solve this dispute rather quickly.

I remember DeFreitas offered to have the CDC come to her lab and see how she did it. Not interested, they said. Wasn't necessary. She can come down to Atlanta.

ugh, if people will just talk and work together. Pride and competition. Then the money runs out on DeFreitas. And the study that was blind, she couldn't finish because of Hurricane Andrew and her health.

Tina

 

[Michael Dessin]

Yes, we should all work together, but contiually forcing your point of view, as the WPI does on the world is not the way to go. An all out mass campaign for XMRV on Facebook and as many other outlets is a little premature at this point. When others contact WPI on different findings and causative agents, do you really think WPI is so open...XMRV or broke they are going for...hope it pans out, our credibility as a community is at stake.

Peterson preached HHV-6 for years now XMRV.....If XMRV does not pan out, next time around it will be much harder garnering any respect or support for future findings

Mike

 

[Michael Dessin]

Yes, we should all work together, but contiually forcing your point of view, as the WPI does on the world is not the way to go. An all out mass campaign for XMRV on Facebook and as many other outlets is a little premature at this point. When others contact WPI on different findings and causative agents, do you really think WPI is so open...XMRV or broke they are going for...hope it pans out, our credibility as a community is at stake.

Peterson preached HHV-6 for years now XMRV.....If XMRV does not pan out, next time around it will be much harder garnering any respect or support for future findings

Mike

Sorry, some how my post got here twice.

 

[flybro]

why did she say they couldnt control the differences in the cohorts? they did not choose patients who had evidence of immune activity and/or inflammation in their bodies...as WPI did. thats a major factor, i would think.

I'm not sure of my take on this, but it looked as though they deliberately screened those problems out.

 

[hvs]

I'm assuming that the authors chose PLoS for the speed factor, because if they really stand by this research and think it's solid, it almost certainly passes the "importance" test for most traditional journals. And the speed factor is itself about politics, frankly. If this is solid, they almost certainly could have published it in a lot of different journals, but that would have taken longer, and they didn't choose to do so. You can read that a number of ways.

Agreed, spit. And with that I think we're arriving at the take-home message from this whole little episode:

1. It is bad for us, our families, and our kids that British newspapers uncritically ran this story, regardless of its merit, with headlines that blared the downfall of the xmrv theory. This is a political disease and we don't need headlines like that.
But...
2. It's good that the first so-called "replication" attempt was so obviously terrible: based on a mystery patient population, devoid of controls and therefore incapable of proving much at all, an apples/oranges comparison per Dr. Vernon, published without peer review, etc. etc.

 

[hvs]

Cort quoting an email from Dr. McClure:

Our data simply says that we cannot find this virus in a UK cohort.

False: her data "says" that they were incapable of finding xmrv in anyone at all. Healthy people, CFS/ME patients, ...anyone. What can we conclude from that? Pretty much nothing.

But...you know...the UK newspapers should go ahead and declare the WPI paper in frickin' Science bunk.

 

[fds66]

Another article appeared in Science Now daily news. Seems to have more information in it including a comment by John Coffin. I have bolded a few new things including a comment about how many VipDX tests are positive.

http://sciencenow.sciencemag.org/cgi/content/full/2010/106/1

Chronic Fatigue Syndrome Attacked Again

By Sam Kean
ScienceNOW Daily News
6 January 2010
Here we go again. Late last year, scientists seemed to be homing in on the cause of chronic fatigue syndrome (CFS)�excessive tiredness and other symptoms that have no known biological cause--by finding a supposed viral link. But a new paper challenges that link, a development that may plunge the field back into the same confusion and acrimony that has characterized it for years.

Many CFS patients report that their symptoms began after an acute viral infection. Yet scientists have been unable to pin CFS on common viruses such as the Epstein-Barr virus. As a result, patients have faced skepticism for years that CFS might not be a real disease, or that it is perhaps a psychiatric disorder.


A team of American researchers thought it finally struck pay dirt last October when it reported in Science that it found DNA traces of a virus in the blood cells of two-thirds of 101 patients with CFS, compared with 4% of 218 healthy controls. XMRV is a rodent retrovirus also implicated in an aggressive prostate cancer, though why it might cause or be associated with CFS remains unclear.


Other scientists were dubious about the XMRV connection. They criticized the Americans for not explaining enough about the demographics of their patients and the procedures to control for contamination. Several virologists around the world practically sprinted to their labs to redo the experiments, and the discovery that a clinic associated with the Science paper was selling a $650 diagnostic test for XMRV made the issue more pressing. A British team already exploring the XMRV-prostate cancer link won the race, submitting a paper to debunk the claim on 1 December.

The team, led by Myra McClure, a professor of retrovirology at Imperial College London, examined DNA from the blood of 186 CFS patients ranging in age from 19 to 70, with an average age of 40. Most were markedly unwell. McClure's team used a PCR machine--which copies and amplifies scraps of DNA--to search for two viral sequences, one from XMRV and the other from a closely related virus. They discovered nothing. At a press conference discussing the results, published in PLoS ONE, McClure was blunt and confident: "If there was one copy of the virus in those samples, we would have detected it."


This null result prompts the question of what--if anything--was wrong with the original paper. In their own paper, the PLoS ONE authors seem to suggest that contamination was at fault, stating that they were careful to work in labs that had never handled XMRV and in PCR machines that analyze no mouse tissues. But McClure says her group merely wanted to make that explicit, not accuse anyone.


Regardless, the American team followed the same procedures, says Vincent Lombardi, a biochemist at the Whittemore Peterson Institute for Neuro-Immune Disease in Reno, Nevada, and co-author of the Science paper. He also expressed bewilderment that the McClure group didn't search its CFS samples for the same DNA sequence as his team had, raising the possibility that that's why the two groups came up with different results. McClure and colleagues, however, looked for not only an XMRV sequence but also a sequence in a closely related virus, MLV. That MLV sequence, highly conserved among viruses of its class, would presumably have been found if XMRV was present, they said.


One distinct possibility, says John Coffin, a microbiologist at Tufts University in Medford, Massachusetts, who studies retroviruses, is that both papers are right. He called the PLoS ONE paper too "preliminary" to settle the debate and said XMRV could show more genetic variety, and thus be harder to detect, than anyone assumed. It's also possible that distinct strains of XMRV appear in different parts of the world, like the retroviruses HIV and HTLV (a leukemia virus).


Coffin says one more possibility, raised by many different scientists, is that CFS is actually a suite of diseases that presents the same symptoms and so might have many causes. Lombardi seconds this point. "It's na�ve to think that everyone with chronic fatigue has the same etiology. There's probably going to be a subset of people with CFS that have XMRV, and it will probably end up being classified as XMRV-related CFS."
All of this leaves doctors and patients in a muddle. There's no doubt they're hungry for information. Out of curiosity, Lombardi did a Google search on "XMRV" the day before the Science paper hit and found about 22,500 hits. Three months later, there are 400,000 hits.


But some scientists, including Coffin and McClure, fear that Lombardi's clinic took advantage of that hunger by offering the $650 diagnostic test, 300 of which have been administered so far. Lombardi's group never claimed XMRV caused CFS, so it's not clear what a patient could do with a positive result. Lombardi argues that patients can avoid infecting other people with XMRV and have their diagnoses validated, if nothing else. His test results also bolster the science in the original paper--he says 36% of tests have detected XMRV, including a few from the United Kingdom.


To resolve the dispute, both sides say they are willing to work with the other and possibly test each other's samples. In the meantime, more papers exploring the link are slated to appear in the next few months, and each side says it knows of work supporting its hypothesis. Meanwhile, the field will continue to churn. As McClure told Science, "We take no pleasure in finding colleagues wrong or dashing the hopes of patients, but it's imperative the truth gets out."

 

[Countrygirl]

Thank you fds66

fds66,

A brilliant find! :Retro smile: Thanks for posting this.

 

[Alexia]

Well.. I find 36% already a lot considering the tests are new and probably need to be improved.

 

[Katie]

Think of 36% as first round results, the second round of results on a FDA approved/standardised test will be much higher. We also don't know if the people being tested have ME/CFS or are relatives, partners or in the early phase with the highest chance of misdiagnosis. I know some folk here bought tests for children, spouses and parents etc so the pool of people that 36% came from is wide.

We're in for the long haul, I'm not touching a test until it's approved and Dr Kerr has had a hand in it which he will be doing by the summer. I want a badass test with a lot less room for error than their is now, we're standing on the cutting edge and testing is very rough around the edges just like the early days of HIV testing. I don't think I could cope with a false result either way, especially with trying to get better (at least 80%) to return to uni, I'm too emotionally invested.

 

[Dx Revision Watch]

http://www.mindhacks.com/blog/2010/01/fighting_fatigue.html

Mind Hacks

January 06, 2010

 

[Stuart]

Yes, we should all work together, but contiually forcing your point of view, as the WPI does on the world is not the way to go. An all out mass campaign for XMRV on Facebook and as many other outlets is a little premature at this point. When others contact WPI on different findings and causative agents, do you really think WPI is so open...XMRV or broke they are going for...hope it pans out, our credibility as a community is at stake.

Peterson preached HHV-6 for years now XMRV.....If XMRV does not pan out, next time around it will be much harder garnering any respect or support for future findings

Mike

Mike, I understand how you can feel this way, but I am not so fussed (or did I miss something? It is so hard to keep up with all these sites these days). This seems to come back to the issue of PWC who are XMRV+ vs. -'s. There should be some concern about the first cohort to find a definitive biological link to be seen as the "only" cohort by any group. First there is no claim that XMRV is causative at this time, it could be secondary or piggyback. Second there is no claim by anyone at WPI that this is the only "true" disease, ala the ME vs. CFS divide.

WPI seems inclusive of other Neuroendocrine Immune disorders that may be caused by XMRV, they have expressed interest in MS, Autism, and FM patients and I see nothing that would exclude them from examining other causes of Neuroendocrine Immune disorders that is I believe the mission of the institute, it is not even ME/CFS/CFIDS specific. That said of course the principals involved are a family with a member with a CFS diagnosis. The WPI Facebook cause is "Cure for ME" that is not XMRV specific. Yes I think they will devote much of their attention on this XMRV lead, why would they not given their findings? However, I would be disappointed if they limited themselves to only XMRV research.

Lets not put all our eggs in one basket, there is a proposed NEI Center of Excellence in New Jersey that is supported by the state legislature, and PANDORA appears to support a similar center in Florida. Before XMRV we knew that there were various infections and physical dysfunctions in PWC, we knew if there was an infectious agent found to be causal in a cohort simply eliminating the infection is not likely to undo all the issues we have. This may be the real problem we will face, that studies can be done to see if something like AZT helps really sick patients known to have ME/CFS related infections like XMRV, but that may not bring them back to health. What are unlikely to be studied are the types of treatments that are difficult to standardize and that are non-allopathic.

There are so many pieces of the puzzle; just looking at the interactions in the Methylation cycle alone is daunting. To understand the mechanisms of this disease is to have nailed all of human biology. We need to refine a working model of the illness in its various forms and find what works to treat it. As I said elsewhere, it may end up being like orphan illnesses where you have too few members to study (here due to heterogeneity and multiple etiology), but you still need to work on it and treat it. Any good research on something related to this disease is good for us all. If an agent triggers the same or similar disease processes I have but I dont have that agent as my causation, I am hopeful that knowing something about that trigger helps me. I am still happy with WPI to date, for such a young organization they are doing amazingly well.

 

[Sparklehorse]

Hi all, sorry if this is a dum question or has been answered before. Are the tests being performed by Lombardi the same ones as used in the WPI study? If so, why aren't they finding the same rates of infection (60+%). If they know what tests to use to replicate those used in the WPI's study why can't they get the same results now? It's bugging me why many of the reported results so far seem to have been negative and is beginning to cause me to have doubts about XMRV. I know we have to wait for many more replication studies to come through before making conclusions and I'm still open minded about it all but I am concerned how this is panning out. Surely if the exact same tests are being used then similar numbers of positive outcomes should be being reported? Or am I missing something? I wouldn't be at all surprised if I was, I'm not a scientist! If anyone can put me right please do. Thanks.

 

[Dx Revision Watch]

Stuart wrote:

Lets not put all our eggs in one basket, there is a proposed NEI Center of Excellence in New Jersey that is supported by the state legislature, and PANDORA appears to support a similar center in Florida.

Stuart, I am not a US resident nor a member of the Lyme community but I was sent this material a week or so ago since it relates to the proposed NEI Center of Excellence in New Jersey.

If I were a resident of the US I would have significant misgivings about the siting of a proposed "NEI Center of Excellence" within the University of Medicine and Dentistry of New Jersey (UMDNJ) Robert Wood Johnson Medical School (RWJMS).

The following may also have relevance to those currently seeking to bring the Lyme patient community into the XMRV lobby.

The content, views and opinions expressed are those of the author, the President of the Lyme Disease Association Inc., and any queries arising out of the content should be addressed to the author.

---------------------------

Subject: [LymeInfo] [advocacy] Remove Lyme Disease from SR133

TO: Everyone across the country
FROM: Lyme Disease Association, Time for Lyme, and CALDA
DATE: December 31, 2009

Sorry for holiday intrusion. We understand that the holidays are a difficult time to ask you to take action, but we are faced with a situation where we must act now to prevent a dangerous setback for the Lyme community.


URGENT ACTION ALERT NEW YEAR'S EVE

TAKE ACTION TODAY, THANKS.

Pat Smith, President
Lyme Disease Association, Inc.

WHEN: On January 4, 2010, the NJ Senate Health Committee intends to go forward with resolution SR 133, which puts Lyme disease, a specific disease with known etiology, in with autoimmune disorders of no known etiology, such as chronic fatigue [sic], fibromyalgia, multiple chemical sensitivity & Gulf War Syndrome.

The proposed resolution for an autoimmune treatment and research center is the result of a behind the scenes effort initiated by a handful of people in the chronic fatigue [sic] community. Their plans to lump Lyme disease in with CFS and disorders of unknown origin has the potential of redirecting current and future funding away from finding a cure for those with active spirochetal and other tick borne infections. Lyme patients and organizations across the country have worked hard over the years to establish, support and promote treatment protocols that will address active tick borne infections. Lyme disease patients will not benefit from a merger with autoimmune disorders, and in fact, could suffer a tremendous set-back if this were to occur.

WHAT: Call or fax the following NJ Senators today. Leave your name and contact info.

Senate Health Committee

[I'm omitting this list of committee members for brevity, but will supply PM, if requested.]

[...]

BACKGROUND: For those who need background information on the issue: In a clandestine behind the scenes movement, the chronic fatigue [sic] community worked to get the introduction and passage of a resolution in the NJ Assembly in May of this year and although they included Lyme disease as one of the autoimmune disorders having an unknown origin, they did not consult with or inform Lyme patients or the Lyme Community of their plans.

The resolution calls for the establishment of a neuroendocrine immune (NEI - a term coined apparently specifically by these advocates) treatment and research center in New Jersey after their plans to have one in Florida were abandoned. The chronic fatigue [sic] advocates were joined by a few Lyme patients who met in NJ to quietly have this passed. One CFS advocate associated with the UMDNJ promoted his personal agenda for a center with what appeared to be the backing of the University of Medicine & Dentistry (UMDNJ).

After we investigated, we found that not only did he not speak for UMDNJ, the UMDNJ is not supporting this resolution nor the creation of the center. The NEI advocates also stated the proposed center had the backing of the CDC & NIH. We checked with these government agencies and the Lyme program officers knew nothing about their plans for a NJ center or their plans to establish additional autoimmune centers in other areas of the country with the same mission.

The Lyme Disease Association is now a partner with the Environmental Protection Agency in its PESP Program!

Pat Smith, President
Lyme Disease Association, Inc.
PO Box 1438
Jackson, NJ 08527

888-366-6611 Toll free info line
732-938-7215 (F)
http://LymeDiseaseAssociation.org/
------------------------------------

The mission of LymeInfo is to keep you informed of issues that might be of interest to Lyme disease patients. Postings are not meant to imply that we agree with the content of all items we distribute.

For Lyme information, see:
http://www.LymeInfo.net

--------------

SR 133 Page 3:
http://www.lymediseaseassociation.org/HR741/SenateNEIDResolution.pdf

16 STATEMENT
17
18 This resolution urges the Governor and respectfully
19 memorializes Congress to encourage the establishment of a research
20 center in New Jersey dedicated to understanding and treating
21 chronic neuroendocrine immune illnesses (NEIDs) such as Chronic
22 Fatigue Syndrome/Myalgic Encephalopathy (CFS/ME),
23 Fibromyalgia, Gulf War illness, Lyme disease and Multiple
24 Chemical Sensitivity Syndrome.

http://www.lymedisease.org/news/lyme_action_alerts/236.html

Click here to see the Senate Resolution that will be voted upon

NJ Senate Resolution SR 133

Click here to see the Letter sent last week to NJ Senators asking for removal of Lyme from resolution Letter to NJ Senate by Lyme Groups

WHO: NJ residents or businesses; also, any Lyme organizations nationwide who have not already signed above letter. No others please at this time, thanks!

WHAT: Call or fax the NJ State Senate sponsors Christopher "Kip" Bateman and Loretta Weinberg.

WHERE: Bateman Phone: (908) 526-3600 Fax: 908-707-4578
Weinberg Phone: (201) 928-0100 Fax: 201-928-0406

WHEN: Start Tuesday October 13, 2009

WHY: To remove Lyme disease from this resolution & from the center

HOW: Call or fax the two senators. Tell each of them

Including Lyme disease with disorders with no known cause will hurt Lyme patients everywhere and prevent them from receiving treatment.

Please remove all references to Lyme disease from the Resolution.

Leave your name, address, contact info (if group, leave group name)

Also, check if either Bateman or Weinberg is your senator Find your NJ State Senator If so, tell him or her you are a constituent.

Proposed NJ bill which "Urges Governor and memorializes Congress to encourage establishment of research center in New Jersey dedicated to chronic neuroendocrine immune disorders." at:

http://www.lymediseaseassociation.org/HR741/SenateNEIDResolution.pdf
==========================================

Lyme Disease Association, Inc.
PO Box 1438, Jackson, New Jersey 08527
888-366-6611 Lymeliter@aol.com 732-938-7215 (Fax)
LymeDiseaseAssociation.org

Re: Proposed Senate Resolution 133, Neuroendocrine Immune Disorders Center
http://www.lymediseaseassociation.org/HR741/NEIDfinal.pdf

Dear Senator:

The national Lyme Disease Association, which has 35 associated organizations nation-wide, is writing to you on behalf of the undersigned organizations in reference to SR-133 (AR-202), which recommends creation of a Center of Excellence in New Jersey dedicated to a new concept of chronic Neuroendocrine Immune Disorders. According to the resolution, these disorders currently include Chronic Fatigue Syndrome/Myalgic Encephalopathy, Fibromyalgia, Gulf War illness, Lyme disease, Multiple Chemical Sensitivity Syndrome, and other environmental illnesses.

The proposed Center would attempt to establish new diagnostic and treatment protocols for these conditions, provide patient care for individuals in the State of New Jersey afflicted with them, and serve as a repository for related autoimmune research data, patient data and publications.

All of the other conditions in the resolution, except Lyme disease, are of unknown origin. As you know, Lyme is an infectious disease with a known cause, the bacterium, Borelia burgdorferi, identified nearly 30 years ago. Therefore, we feel Lyme disease should not be included in this resolution. We ask that it be removed in its entirety before the bill moves forward.

Since Lyme is not an autoimmune disorder, is not in the category of diseases of unknown origin, and already has established diagnostic and treatment protocols to address this complex infectious disease in all stages, we feel it is erroneous to include Lyme in a resolution for a Center simply because it shares some symptoms with unrelated disorders. Others agree.

A study of the regions institutions finds that Harvard University (the "world leader in immunology research, specifically concerning immune defense and inflammation"), the Mayo Clinic, and the recently created John's Hopkins' Autoimmune Disease Research Center do not include Lyme disease on their lists of autoimmune disorders!the latter covering over 60 autoimmune conditions with unknown etiologies. Columbia University has established a research center specifically for Lyme and other tick borne diseases as well as an evaluation service for Lyme disease patients, with no autoimmune diseases included.

2

While we recognize that this proposed Center may prove beneficial for those suffering from the disorders cited, to now categorize Lyme disease as a Neuroendocrine Immune Disorder is not only medically and scientifically incorrect, but it also is contrary to the best interests of Lyme patients, the researchers, and the medical professionals treating those with Lyme disease. For example, many diseases share the symptom of coughing, but treatments for a cold, lung cancer, and tuberculosis are very different. The treatment is based on the underlying cause of the illness, the pathophysiology, and progression of the disease, not the symptoms alone.

Reclassification at this point in time could also set aside evidence gleaned from more than 21,000 peer reviewed scientific articles on Lyme disease describing the causative organism, testing, treatment, modes of dissemination, strain-to-strain variation and more. The pathogenesis of Lyme disease has even been studied in animal models, including non-human primates, demonstrating the persistence of the bacteria. While additional research on Lyme disease is certainly needed, no one has demonstrated that the other diseases under the so-called NEID umbrella share anything in common with the cause, bacteria, pathophysiology, or coinfections that underlie Lyme disease or that treatment approaches appropriate for these diseases would be appropriate for Lyme disease.

Our organizations have made significant progress in educating about Lyme disease, the most prevalent vector-borne disease in the US today. This summer, through our concerted efforts, the US House of Representatives and the Senate Appropriations Committee passed language in the HHS Appropriations bills which includes the terms chronic Lyme disease and persistent infection, recognizing that chronic Lyme is persistent infection, and not a collection of vague symptoms with unknown etiology.

We have highlighted some of the dangers to patients of minimizing Lyme disease by obscuring its bacterial origin and calling it autoimmune. Thus we ask that the words and the concept of Lyme disease be removed from SR-133 before any further action is contemplated. Patients nationwide expect leadership from an informed Senate of the State that, in 2008, contained 12% of all nationally reported case numbers of Lyme disease, equal to 34,850 new victims in New Jersey alone (the CDCs reported total times ten, the CDCs own factor for underreporting).

The national Lyme Disease Association and the undersigned groups respectfully ask for the immediate removal of Lyme disease from the resolution for establishment of a Neuroendocrine Immune Disorders Institute and from any and all current or future plans for such a Center. Your action will help Lyme patients in New Jersey and nationwide receive the appropriate treatment necessary for them to live productive lives. If the Lyme Disease Association can be of further assistance to you regarding any Lyme-related matters, please do not hesitate to contact me. My email is Lymeliter@aol.com and my cell number is 732 713 9083. Thank you.

Sincerely,
Patricia V. Smith
President,
Lyme Disease Association, Inc.

3

[List of co-signatory Lyme organisations ommitted for brevity.]

---------------------

The following material is provided by Suzy Chapman:

The Robert Wood Johnson Medical School (RWJMS) has a Medically Unexplained Physical Symptoms (MUPS) Center - run by Dr Javier Escobar, MD, in the department of Psychiatry.

Javier Escobar, MD, is the Director of the University of Medicine and Dentistry of New Jersey (UMDNJ) Robert Wood Johnson Medical School (RWJMS) Medically Unexplained Physical Symptoms (MUPS) Research Center, which has been supported with over $4M in funding by the US National Institute of Mental Health (NIMH).

Dr Escobar is a member of the APA's DSM-V Task Force and he serves as a Task Force liaison to the DSM-V "Somatic Symptom Disorders" Work Group and is said to work closely with this group.

In August 08, Dsr Escobar and Marin co-authored a Special Report for Psychiatric Times:

"Unexplained Physical Symptoms Whats a Psychiatrist to Do?"


Dr Escobars DSM-V Task Force member bio and COI disclosure lists the following interests:

http://www.psych.org/MainMenu/Research/DSMIV/DSMV/MeettheTaskForce/JavierEscobarMDMSc.aspx

Principal Investigator and Director of the MUPS Research Center in Primary Care.
Associate Dean for Global Health and Professor of Psychiatry and Family Medicine at the University of Medicine and Dentistry of New JerseyRobert Wood Johnson Medical School.
Member of the National Advisory Committee for the Robert Wood Johnson Foundations Physicians Faculty Scholars Program.
Former senior advisor to the Director of the National Institute of Mental Health (NIMH) in 2004.
Former member of NIMHs National Advisory Mental Health Council.
Former advisor to the World Health Organization, Geneva.
Member of the Food and Drug Administrations Advisory Committee on Psychiatric Drugs.
Standing member of several research review committees for the National Institutes of Health (NIMH, NIDA, and NIA) and the Veterans Administration, and other national task forces.

Dr. Escobar has been an active researcher in the areas of clinical psychopharmacology, psychiatric epidemiology, psychiatric diagnosis, and cross-cultural medicine and Psychiatry. Currently Dr. Escobar is the principal investigator of two projects funded by the National Institute of Mental Health and also collaborates as mentor, co-investigator or consultant in several other NIH-funded projects in the areas of mental disorders in primary care, treatment of somatoform disorders, cross-cultural psychiatry, psychiatric epidemiology and development and mentoring of new psychiatric researchers. He has published more than 200 scientific articles in national and international books and journals.

Dr. Escobars APA DSM-V disclosure statement declares income from or interests in Eli Lilly, Pfizer, BMS, Forest, Wyeth, Johnson & Johnson, Bristol-Meyers Squibb, and American Association of General Psychiatry.

In 2008, a Special Report by Humberto Marin, Javier I. Escobar, MD: Unexplained Physical Symptoms Whats a Psychiatrist to Do? was published in Psychiatric Times. Vol. 25 No. 9, August 1, 2008

(Free access to full paper here: http://www.psychiatrictimes.com/display/article/10168/1171223 )

Escobar and his co-author define Functional Somatic Syndromes (FSS) to include:

Irritable bowel syndrome, Chronic fatigue syndrome, Fibromyalgia, Multiple chemical sensitivity, Nonspecific chest pain, Premenstrual disorder, Non-ulcer dyspepsia, Repetitive strain injury, Tension headache, Temporomandibular joint disorder, Atypical facial pain, Hyperventilation syndrome, Globus syndrome, Sick building syndrome, Chronic pelvic pain, Chronic whiplash syndrome, Chronic Lyme disease, Silicone breast implant effects, Candidiasis hypersensivity, Food allergy, Gulf War syndrome, Mitral valve prolapse, Hypoglycemia, Chronic low back pain, Dizziness, Interstitial cystitis, Tinnitus, Pseudoseizures, Insomnia, Systemic yeast infection and Total allergy syndrome.

and that:

These labels fall under the general category of functional somatic syndromes and seem more acceptable to patients because they may be perceived as less stigmatizing than psychiatric ones. However, using DSM criteria, virtually all these functional syndromes would fall into the somatoform disorders category given their phenomenology, unknown physical causes, absence of reliable markers, and the frequent coexistence of somatic and psychiatric symptoms.



Perhaps as a corollary of turf issues, general medicine and medical specialties started carving these syndromes with their own tools. The resulting list of medicalized, specialty-driven labels that continues to expand includes fibromyalgia, chronic fatigue syndome, multiple chemical sensitivity, and many others.

These labels fall under the general category of functional somatic syndromes and seem more acceptable to patients because they may be perceived as less stigmatizing than psychiatric ones. However, using DSM criteria, virtually all these functional syndromes would fall into the somatoform disorders category given their phenomenology, unknown physical causes, absence of reliable markers, and the frequent coexistence of somatic and psychiatric symptoms.

In Table 1, under the heading Functional Somatic Syndromes (FSS) Escobar and Marin list:

Irritable bowel syndrome, Chronic fatigue syndrome, Fibromyalgia, Multiple chemical sensitivity, Nonspecific chest pain, Premenstrual disorder, Non-ulcer dyspepsia, Repetitive strain injury, Tension headache, Temporomandibular joint disorder, Atypical facial pain, Hyperventilation syndrome, Globus syndrome, Sick building syndrome, Chronic pelvic pain, Chronic whiplash syndrome, Chronic Lyme disease, Silicone breast implant effects, Candidiasis hypersensivity, Food allergy, Gulf War syndrome, Mitral valve prolapse, Hypoglycemia, Chronic low back pain, Dizziness, Interstitial cystitis, Tinnitus, Pseudoseizures, Insomnia, Systemic yeast infection, Total allergy syndrome