Friday, December 18, 2009

Dr. Klimas information

Many of you have been fortunate enough to view the XMRV lecture by Nancy
Klimas, M.D., which was videotaped and edited by Dan Moricoli of CFS
Knowledge Center, and some of you have inquired about how to donate
directly to Dr. Klimas to support her research.  Donations in any amount
are always welcome!  All donations are tax deductible and can be made
online with a credit card or by check to the address listed below.

1.  For online gifts by credit card:
Go to the link at www.med.miami.edu/give .  In the Gift Designation
section of the online form, in the "Other" designation box, type in
"*Morton Fund for CFS Research*".  Complete the rest of the form as
instructed.

2.  For gifts by check:
Make your check payable to the University of Miami Miller School of
Medicine, _AND_ include in the memo section of your check "*Morton Fund
for CFS Research*".  Mail to the following address:

University of Miami
Office of Medical Development
Attn:  Elizabeth Goldberg
1500 NW 12 Avenue, JMT Suite 1020E
Miami, FL 33136

3.  If further information is needed, contact Elizabeth Goldberg at
305-243-3492 or email to egoldberg@med.miami.edu


Pat Sonnett
Miami CFIDS Support & Advocacy Group
 
 
 
 
 
 

Thursday, December 17, 2009

Cornell seeks post-doc to study XMRV

parvofighter at the Phoenix Rising forums posted the following find-

http://forums.aboutmecfs.org/showthread.php?t=1772

**********************************

http://www.upstatenyherc.org/c/job.cfm?str=1&site_id=671&sort=date_&max=25&jb=6316632

Post Dr Assoc
Cornell University
Cornell University, located in Ithaca, New York, is an inclusive,
dynamic, and innovative Ivy League university and New York's
land-grant institution. Its staff, faculty, and students impart an
uncommon sense of larger purpose and contribute creative ideas and
best practices to further the university's mission of teaching,
research, and outreach.

The Department of Molecular Biology and Genetics seeks a postdoctoral
research associate to study the role of the newly discovered
retrovirus XMRV in chronic fatigue syndrome (CFS).  Blood from a
cohort of CFS patients and controls in upstate New York will be
examined for the presence of virus, viral proteins, and antibodies to
viral proteins.  Sequences of XMRV from different patients will be
obtained in order to characterize the diversity of viruses in the
population.  Whether virus sequences correlate with functional status
of CFS patients will be determined.  This project will be undertaken
in collaboration with the Whittemore-Peterson Institute in Reno,
Nevada and the Columbia University Center for Infection and Immunity
as well as with several physicians treating CFS patients.  For more
information regarding the Department of Molecular Biology and
Genetics, visit http://mbg.cornell.edu/.

Qualifications:
PhD degree in an area of Molecular Biology and/or Biochemistry or
Virology.  Prior experience with mammalian cell culture and/or
retroviruses is desirable but not required.


Please send cover letter and CV with names of three references to
Prof. Maureen Hanson, Dept of Molecular Biology and Genetics, 323
Biotechnology Bldg., Cornell University, Ithaca, NY   14853 or to
cfs.study@gmail.com.  Applications will be received for consideration
until a suitable candidate is identified.


Cornell University is an equal opportunity, affirmative action
educator and employer.

Job: Molecular Biology & Genetics
Primary Location: Ithaca
Requisition Number: 11845
Organization: Molecular Biology & Genetics - AG

Tuesday, December 15, 2009

Yet more on CBT

Carl Graham asks us whether CBT as a concept has been sufficiently polluted in CFS research and clinical use that it will have to be retired.

My answer is an unqualified "Yes."

The key is the association with ANOTHER questionable concept in psychiatry: "inappropriate illness beliefs."

"Inappropriate illness beliefs" is itself a type of ideology, a type of belief system. It requires the assumption that if there is no APPROVED objective test for a medical condition, then the condition must belong in the domain of psychiatry. In the history of medicine, the reverse has always been the case. Charcot's hysterics were epileptics and victims of third-stage syphillis. Women with hysterical paralysis turned out to have Multiple Sclerosis. "Cold Mother Syndrome" is now called autism.

I have no quarrel with psychiatry as a profession. There is no doubt that the profession of psychiatry has saved patients with such biological disorders as bipolar syndrome and schizophrenia from myths of demons or self-indulgence. And many who would have dropped by the wayside have been saved by the counseling they received from intelligent and caring therapists.

But psychiatry as a profession is also a minefield of confused and inappropriate diagnoses.

It is exceedingly ironic that White, Wessely, Sharpe, and Chalder, the most visible psychiatrists pushing this particular brand of sophistry on the public, always open their presentations (in print or lecture) with the claim that they are breaking down Cartesian mind-body dualism. They then proceed with a dualistic theory as to what is wrong with the patient and how to fix it.

One has to reach back to the "four humors" to find such a thoroughly theory-driven model of how the body works.

Yet article after article is published, the "peer reviewers" apparently losing all their critical reasoning skills. The same research is repeated; the authors all cite each other frequently. The result is the appearance of scholarship with no scholarship.

Here is an example of the excesses to which the theory of "cognitive behaviour therapy" coupled with "inappropriate illness beliefs" has taken us, from the King's College, London, website on CFS for professionals:

http://www.kcl.ac.uk/projects/cfs/health/

"Many clients have built up an infrastructure of support, a coping network, to help them manage their illness. One of my clients had, over the years, established a rota of friends and volunteers, who visited two or three times daily to help her with meals, washing, housework etc. Mostly she was in a wheelchair, and walked only with crutches. She wore a neck-collar to support her head. For her, the road to recovery involved the gradual dropping of each one of these props. To put it in her words, she had to "wean herself of" her network of support, her chair, her crutches, her collar.

"Each new reduction in her dependence was a step into the unknown. This required enormous courage and persistence. Each move back into (her words) 'real life' was potentially that step too far that would send her into relapse. The spectre of the bed and the wheelchair is never far from the mind of many sufferers.

"This weaning is not quick. Two years later we carry on the journey, though her strides are that much firmer and more confident. Therapists used to working with anxiety must acquaint themselves with a far slower pace of change, much less spectacular progress. They must acquire patience, and lower their own unrealistic expectations of speedy recovery. In short, we must fall into pace with the client."

If these psychiatrists are wrong - if so-called "chronic fatigue syndrome" really is caused by biomedical phenomena - and if the vast majority of patients with "CFS" who are confined to wheelchairs are there because of medically verifiable physical limitations, the scenario described on the King's College website is unspeakably cruel. The reader is reminded of scenes from "Elmer Gantry."

As long as that practice remains; as long as patients are grossly mistreated in the name of a false science; as long as insurance companies and government institutions rely on such advice - how can a thinking person take the chance of dignifying such practices by promoting the phrase "cognitive behaviour therapy"?

No matter how well meaning, in the end the author risks having his/her own words used in an act of unspeakable cruelty. Why would you take that chance?

Psychiatry as a profession should be so embarassed by this performance to assign the phrase "Cognitive Behaviour Therapy" to the dustbin of history, along with eugenics and phrenology (the belief that a person's character can be assessed by looking at the shape of his/her head). Do not say it "could" mean something different. A set of rogue psychiatrists has given a fixed meaning to this concept, and it has been applied to extend the suffering of patients with a severe disease. AND THE PROFESSION OF PSYCHIATRY HAS DONE NOTHING TO STOP THIS.

Why the profession itself has not risen up in anger against this false scholarship is, frankly, beyond me. Perhaps it has to do with the patient in the above scenario almost always being a woman. Neurasthenia, like hysteria, has historically been considered a "woman's" disease - attributed by such as Simon Wessely to men only when they fail in the most manly of duties, warfare. Perhaps lingering prejudices against women's internal makeup have provided the loophole through which these clearly absurd ideas have spread unchecked. But neurasthenia does not have the most respectable history. In the nineteenth century, it was paired with hysteria to create the medical view that young women should not be permitted to study science or math in high school (if they were permitted to attend high school at all). Freud's version of "neurasthenia" came from the case of Anna O, whom he concluded secretly wished to have sexual relations with her father as a child. Only the release of Freud's private papers showed the opposite: Anna O herself had come to Freud because her father HAD sexually abused her. After extensive efforts to treat her, the good doctor decided that her claim was too grotesque to be true. Only then did he create the OTHER version of the story - that she had imagined it because she wished it to be so.

With such a history, I would think psychiatrists would be doubly careful to police their profession for such misguided theories.

We are not talking about something hidden away in a corner. The CBT/GET pushers and proponents of "biopsychosocial" medicine have been unusually prolific - often publishing more than one paper on the basis of a single study. They cite each other frequently, so they would show up on the citation index as highly regarded, too. Highly regarded by themselves alone, perhaps, but the citation index does not make these distinctions. It simplies counts the citations - the more, the better, no matter why.

Do you really expect bureaucrats to make the fine distinctions between one form of CBT and another? They do not, as a rule, and the money is behind the cruel version. Children and young people have been taken from their families and placed in foster homes or psychiatric institutions on the beliefs bolstered by proponents of CBT and GET. It has taken its time getting to the United States, but with the help of Emory's psychiatry department and Reeves' "empiric [sic]" questionnaires, the U.S. has finally arrived at a purely psychiatric view of CFS.

As long as psychiatry refuses to clamp down on the con artists of Cogitive Behaviour Therapy and "CFS/ME" as they sometimes call it, a thinking professional should run, not walk, from their terminology. The dangers are too great: the risk lies in legitimizing an inherently illegitimate activity.

Has CBT as a concept been sufficiently polluted in CFS research and clinical use that it will have to be retired?

My answer is an unqualified "Yes."


Mary M. Schweitzer, Ph.D.

* * *
15 years ago, Dr. David Bell noted that fully half of the people originally diagnosed with hypochondria or "all in your head" were eventually diagnosed with a very real physical disease that matched the symptoms they'd complained about all along.

I was told in 1988 that I did have a very real illness, for which there was no blood test yet, but I was ahead of the technological curve, and had to wait for medical science to catch up to prove it. With the first MRI machine in the Tahoe area, Peterson/Cheney found brain lesions similar to those in MS; this information was ignored by those who wanted to blame the problem on "depressed menopausal women". Five years ago, I had a C-Reactive Protein test, which shows inflammation/infection, can verify that a person has a virus without needing to identify which one; the "off the charts" results still were not enough to convince some people that I'm physically ill, not faking. Now we have XMRV, and I'm sure there are still those who are going to deny that this is good enough evidence that patients have a physical disease, not a psychiatric flaw.

It's taken 21 years since my initial diagnosis for technology to prove that I wasn't lying, I wasn't faking, I wasn't malingering ... there really is a virus behind my problems.

Unfortunately, a study has shown that it takes 17 years -- a full generation -- for research findings to become common medical practice. So just because we, as patients, know about XMRV, that does not mean that the average doctor knows (or cares to learn); expect it to be 2026 when more doctors than not recognize CFS as a retrovirus to be treated accordingly. Say it takes 5 years from now to determine that Drug X is the best treatment -- that puts it at 2031 (almost 50 years after the Tahoe and Lyndonville epidemics!) -- before most doctors are prescribing Drug X.

I hope that Hillary Johnson has it in her to write a sequel to "Osler's Web", talking about the horrors that patients have undergone since the end of the original book, and what roadblocks are put up to the acceptance of the notion that CFS=XMRV.






More on CBT

I have noted over an extended period references in discussions on ME/CFS
treatment about what CBT is and how, based on that, it could not be
applicable to treating a biologically based disorder except to assist
with comorbidities such as anxiety or depression.

I agree that, based on typical descriptions, it makes little sense to
expect a CBT based approach would be of benefit in a medical condition.
It appears this way, however, because the definition being used does not
fully describe what is being done by many who work with CBT based
approaches in behavioural medicine practice. Of course CBT can be used
to assist with comorbidities, but it can also be deployed directly as a
part of treatment for a chronic disease where there are components of
pain, fatigue, inflammation and mood change and sleep disruption
implicated in the disease process.

The CBT used in psychoneuroimmunological interventions is not limited to
changing 'irrational beliefs'. For instance there are demonstrated
changes in inflammatory cytokine production related to reduced
threat-based responding. CBT is currently being applied to treating
inflammatory bowel disease for this reason. Guided imagery used to
facilitate sensory-motor neural reprocessing in an affected body part is
demonstrating benefit in CRPS related pain problems. There are a host of
similar examples where CBT is used to address things other than beliefs.

The view that all those involved in CBT based treatments accept the idea
that irrational thinking has lead to a somataform disorder in a patient
who has a chronic disease is entirely unfortunate. There is little
support for a mind-body split in any area of health. The idea that
problems are either entirely physical or psychological cannot endure any
sustained scrutiny. For instance, there is evidence that a pathogen
initiated cytokine response can be exacerbated and maintained by
psychological factors (eg; Brydon, et al. (2009) Brain, Behavior, and
Immunity, 23, 217-224). Clearly, this demonstrates that having ongoing
symptoms following an infection is not evidence of a somataform disorder
but of an extended sickness response. A number of the issues that can
exacerbate and maintain a sickness response are absolutely susceptible
to behavioural interventions. None of this requires that a patient had
any kind of psychological or psychiatric disorder.

Lastly, and most importantly, there is no need for medical and
behavioural interventions to compete. The best possible benefit to
patients will be served by collaborative multidisciplinary treatment
approaches which address the complexity of the presenting disease
processes.  It is essential to improved treatment that both health
professionals and patients are encouraged to abandon dualistic
perspectives which result in the politicising of health care. This is
important for the management of health disorders generally and for
chronic health problems in particular.

Best regards,

Carl Graham
Clinical Psychologist
 





Monday, December 14, 2009

Who do we contact?

Many people are asking who they should contact as well as some of the
questions that remain to be answered. The following are a few of the
possibly pertinent contacts as well as some issues that may not have been
widely discussed with these contacts.

To whit: there has been considerable discussion regarding Dr. Miller's
statement of October 2009 that XMRV testing will be moved to the retrovirus
lab in the Division of HIV/AIDS Prevention. What Dr. Miller did not cover
was who would be paying for the testing of XMRV in patients who may have CFS
depending on which definition is used to currently define whether they now
have CFS. According to former CDC contractor Kim McCleary of the CAA in 2008
testimony before the DHHS CFSAC, most funding for CFS is paid yearly to Abt
Associates regardless of whether they had performed the requested services.
One possible point of view is that this leaves very little money for
collaboration with external experts outside of Emory University's Psychiatry
and Behavioral Division. If the CFS program doesn't have sufficient funds to
pay for adequate and scientifically rigorous studies testing who does?

Nor did Dr. Miller did state who in the retrovirus lab would be put in
charge of any XMRV studies. This may be pertinent as both Drs. Walid *
Heneine* and Brian J. Mahy continue to work in the HIV/AIDS Prevention
Division.

Dr. Heneine was part of a team lead by Dr. Tom Folks who were unable to
reproduce the retrovirus work of Drs. Elaine DeFrietas, Dan Peterson and
Hilary Koprowski in CFS patients. Dr. Mahy is infamous for his participation
in the diversion of congressional CFS funding to other areas in the 1990s.
Dr. William C. Reeves also participated, but gained Whistle blower
protection when a 1998 GAO investigation revealed the misallocation of
research funds. Repayment of that funding has now run out and Dr. Miller
purportedly told CFS advocate Cort Johnson that additional funding had not
been requested. So who pays for it?

The suggestion was also made at the October 2009 CFSAC meeting that all CDC
XMRV lab work be done at a neutral lab and under the supervision of a
neutral entity such as the NCI. It's a win/win proposition. That way the CDC
no longer has to continue to send out emails to virologists worldwide
claiming they cannot replicate the XMRV study because they don't know who
the patients were. The CDC also avoids accusations of impropriety and
malfeasance and CFS experts and researchers are reassured that the rigorous
protocols used in the Mikovats study are adhered to. As well as verification
that only specimens from a well-defined group of CFS patients currently
matching the specifically defined CFS patients tested by the WPI and the NCI
are used.

Of course the CDC is hardly the only entity who will be testing for XMRV in
CFS patient groups. Those studies should also be shown to adhere to
established protocols and rigorously defined patient groups currently
meeting the 1994 Fukada definition and the 2003 Canadian Consensus Protocol.


These questions and others may be addressed to all or some of the following
parties:

Dr. Howard Koh is the DHHS Secretary over both the Office of Women's Health
Research and the Office of Scientific Integrity.
c/o Ms. Dinah Bembo, Assistant to the ASH
200 Independence Avenue SW, 716G
Washington, District of Columbia 20024
202.690.7694
dinah.bembo@hhs.gov

*
*

*The two CDC contacts listed below oversee the work done by Dr. William C.
Reeves and Dr. Michael Miller regarding CFS.
*

*
*

*Mitchell L. Cohen, MD*
Director, Coordinating Center for Infectious Diseases/CDC
1600 Clifton Rd NE, Bldg 1
Atlanta,  GA 30329Phone: (404) 639-1603
Fax: (404) 639-2780
Email: mlc1@cdc.gov


Rear Admiral Ali S. Khan, MD MPH

Acting Director, National Center for Zoonotic, Vector-Borne, and Enteric
Diseases, Coordinating Center for Infectious Diseases
Centers for Disease Control and Prevention
Mailstop A‐26, 1600 Clifton Rd.,
Atlanta, GA 30333

Email: ask0@cdc.gov

as well as

J Michael Miller
1600 Clifton Rd NE, Bldg 1
Atlanta,  GA 30329

Phone: (404) 639-3029
Fax: (404) 639-0382
Email: jmm8@cdc.gov

The Department of Health and Human Services also has a Board of Scientific
Counselors who interface with the Coordinating Center for Infectious
Diseases (CCID) which is the division the CFSRP is under at the CDC. Their
charter says they meet twice yearly, but the last minutes posted are from
2008. Note: Retroviruses and CFS are not usually what these people are
experts on, so links to  official documentation, testimony or direct links
to the WPI site or possible copies of CFS expert Dr. Nancy Klimas comments
from the NYT would lend credibility to any communication.

Executive Secretary is:

EXECUTIVE SECRETARY
Janet Nicholson, Ph.D.
Senior Advisory for Laboratory Science
Coordinating Center for Infectious Diseases
Centers for Disease Control and Prevention

jnicholson@clsi.org
jknl@cdc.gov

*
Members also  include:

Barry J. Beaty, BS, MS PhD; Professor; Virology
Colorado State University
Department of Microbiology, Immunology and Pathology
105 Infectious Disease Annex, Foothills Campus
Fort Collins, Colorado 80523-1692

*Barry*.*Beaty*@colostate.edu .

B.S., M.S., Ph.D. (University of Wisconsin).

Dr. Beaty is a professor of virology and is a leading researcher at Colorado
State's Arthropod-Borne Infectious Disease Laboratory. His research has
included the prevention and control of diseases including yellow fever,
malaria, Dengue fever, West Nile virus, and mosquito-borne encephalitis.

Ralph DiClemente, PhD
Associate Director
Emory/Atlanta Center for AIDS Research
Rollins School of Public Health, Emory University
Atlanta, GA

rdiclem@sph.emory.edu
Term: 12/27/2007 - 9/30/2010

John Lind Gittleman, Ph.D
Dean
Odum School of Ecology
University of Georgia

ecohead@uga.edu

Gail A Bolan, M.D.
Chief, STD Control Branch
Department of Health Services
State of California
Richmond, CA

gbolan@dhs.ca.gov
Term: 1/4/2008 - 9/30/2010


Matthew L Boulton, MD MPH (Dr. Boulton is one of the four external reviewers
of the CDC CFSRP in 2008. Both Dr. James Oleske and Dr. Gudrun Lange have
publicly criticized the CDC since then.)
Associate Professor
University of Michigan
Ann Arbor, MI

mboulton@umich.edu
Term: 12/21/2007 - 9/30/2011

Samuel Lawrence Katz, M.D.
Professor and Chair
Emeritus of Pediatrics
Duke University Medical Center
Durham, NC
Term: 1/16/2008 - 9/30/2010


Marcelle C. Layton, M.D.
Assistant Commissioner
Bureau of Communicable Disease
New York City Department of Health and Mental
Hygiene
New York, NY

mlayton@health.nyc.gov
Term: 2/20/2008 - 9/30/2010

Robert A. Weinstein, M.D.
Interim Chairman
Department of Medicine
John H. Stroger, Jr. (Cook County) Hospital
Chicago, IL

rweinste@rush.edu
Term: 9/2/2008 - 9/30/2012


Mary Elizabeth Wilson, M.D.
Associate Professor of Medicine
Harvard Medical School
Washington, DC

mary_wilson@harvard.edu
Term: 8/29/2008 - 9/30/2012

 





Klimas XMRV Lecture Video on line

 
I've seen this posted several places but haven't seen it show up on Co-Cure yet-

The presentation by Nancy Klimas from a month or so ago, "XMRV CFS/ME
& You" is now online at the cfsknowledgecenter website. I think the
presentation by Dr. Judy Mikovits at the University of the Pacific is
being held back until her group publishes some of the findings
mentioned there.

From the cfsknowledgecenter.ning.com website-
"Dr. Nancy Klimas' lecture & slide presentation: "XMRV CFS/ME & You".

A compelling and comprehensive review of the disease, the XMRV virus
discussed in detail and what lies ahead. Even the most knowledgeable
in attendance gained new insights into their illness and the prospect
of a new road to recovery. A particularly interesting Q&A session
follows the formal presentation.

The two hour session garnered rave reviews from the 150 people lucky
enough to attend. It is a MUST SEE video for all afflicted with or
affected by ME/CFS.

Most of the video was made in near dark conditions to accommodate the
slide presentation.

It has been tightly edited down to 83 minutes and divided into 12
segments for easy, and repeated, viewing."

http://cfsknowledgecenter.ning.com/video


Direct links-

Segment 1: Background, overlapping conditions, viruses
http://cfsknowledgecenter.ning.com/video/xmrv-lecture-segment-1

Segment 2: Viruses & CFS/ME, WPI & XMRV
http://cfsknowledgecenter.ning.com/video/xmrv-lecture-segment-2

Segment 3: XMRV, NK & T cells, latent & retro viruses
http://cfsknowledgecenter.ning.com/video/xmrv-lecture-segment-3

Segment 4: Retro viruses, Biomarker
http://cfsknowledgecenter.ning.com/video/xmrv-lecture-segment-4

Segment 5: Antibodies, what we don't know, cancer (video missing)

Segment 6: Virus life cycle, immune modulation drugs
http://cfsknowledgecenter.ning.com/video/xmrv-lecture-segment-6

Segment 7: What's next in research
http://cfsknowledgecenter.ning.com/video/xmrv-lecture-segment-7

Segment 8: Research funding & advocacy
http://cfsknowledgecenter.ning.com/video/xmrv-lecture-segment-8

Segment 9: Testing for XMRV, Q&A: Antibodies
http://cfsknowledgecenter.ning.com/video/xmrv-lecture-segment-9

Segment 10: Q&A: Drug timeline, U of M clinic & studies
http://cfsknowledgecenter.ning.com/video/xmrv-lecture-segment-10

Segment 11: Q&A: Morton Fund, Taking care of yourself
http://cfsknowledgecenter.ning.com/video/xmrv-lecture-segment-11

Segment 12: Q&A: The new Miami CFS clinic (video missing)
Posted on 12/14/09, 03:12 pm






A primer for XMRV, XAND, M.E. - and CFS By Mary Schweitzer, Ph.D.

A primer for XMRV, XAND, M.E. - and CFS
By Mary Schweitzer, Ph.D.

A primer for XMRV, XAND, M.E. - and CFS

On October 9, 2009, an article was published by Judy Mikovits et al in the highly prestigious research journal Science announcing the findings that a newly discovered retrovirus, called XMRV, had been found in 67 percent of a sample of patients diagnosed with CFS over a period of 25 years. There are only 3 known human retroviruses: HTLV, HIV (which leads to AIDS), and now XMRV. The importance of this finding cannot be overstated. The Cleveland Clinic had already found XMRV in roughly 10 percent of prostate cancer patients, but the more startling news had been that it was present in 3.4 percent of controls. That was too high. So they began to look for other possible roles this virus played.

The new Whittemore-Peterson Institute, a private research institution created four years ago, in association with the University of Nevada at Reno, which Mikovits heads, combined resources with the Cleveland Clinic and the National Cancer Institute (one of the National Institutes of Health, or NIH) to arrive at this startling conclusion.

Here is a quick primer for those who have been diagnosed with CFS or M.E., and the many who have XMRV but have yet to be diagnosed. I am a social scientist, not a hard scientist, so keep in mind my viewpoint is that of the lay public. I will add more information and sources over time, but right now this basic primer should be of help.



XMRV is not CFS

XMRV cannot be CFS because CFS is what is called a "socially constructed concept," not a scientific one. It means too many different things in the realms of medicine, research, and popular culture, and even has contradictory research definitions.

For example:
According to British psychiatrist Peter White, CFS is a condition of unexplained symptoms that results from "inappropriate illness beliefs." It is best treated with Cognitive Behaviour Therapy (CBT) and Graded Exercise Therapy (GET). And this is pretty much the version of CFS that has been adopted by Britain's National Health Services and their "NICE" medical guidelines.

Patients diagnosed by White and other British psychiatrists as having CFS cannot have any physical explanations for their symptoms. Therefore they cannot have XMRV.

Another way of putting that is: the moment a patient diagnosed in the UK with "CFS" is diagnosed with XMRV, he or she is suddenly free of the interim diagnosis of CFS. By the British medical establishment's own rules. That means that any statement by "CFS" experts in Britain such as Peter White, Trudy Chalder, Michael Sharpe, or Simon Wessely, with regard to XMRV, is out of their field of expertise – they are all psychiatrists.

The official Holmes (1988) and Fukuda (1994) definitions fpr CFS at CDC had no restrictions that could preclude XMRV as either correlated or causal. The Canadian Consensus definition for ME/CFS (2003) rests even more greatly on physical symptoms that could be associated with viruses, and hence associated with a retrovirus. However, many of the patients diagnosed using the CDC's questionnaires created in 2005 do not have any physically verifiable symptoms. Independent research comparing patients diagnosed with the Fukuda definition and those diagnosed using the CDC "empiric" questionnaires found that the latter method left out thirty percent of the Fukuda-defined patients - the ones with the worst symptoms - but added in many more patients with symptoms associated with melancholic depression. Using the Fukuda definition, DePaul researcher Leonard Jason found that one million adult Americans probably have "CFS"; using his questionnaires, CDC researcher Willliam Reeves came up with an estimate of 4-7 million. The significance of the differences between the groups should be obvious.

Thus, whereas the Science article found that 60 percent of a sample of "CFS" patients had XMRV, those patients were diagnosed using more restrictive criteria than is now used by CDC. If CDC tested their Georgia cohort for XMRV, it would be surprising to find more than 15 percent of those patients had XMRV. And this would be true of any attempt by CDC to "replicate" the research using their own questionnaires rather than the Fukuda and Canadian definitions that were used in the Science study.

It is no wonder that the head of the CDC's program on CFS for the past twenty years, Dr. William Reeves, immediately responded that none of the CFS patients in his new Atlanta-area study would have the virus. "Dr. William C. Reeves, who directs the agency's research on the syndrome, has said that he does not expect to find the virus in blood samples from patients. He said that no other studies had ever proved a virus to be the cause, and that stress and a history of sexual and emotional abuse were more likely to play a role in many cases." (See "A Big Splash from an Upstart Medical Center," New York Times, 11 November 2009).

I agree. Few of Dr. Reeves' patients will turn out to have XMRV. That is because for twenty years he has been studying "fatiguing illnesses" – not anything to do with the immune defects and viruses that caused cluster outbreaks of disease all over the United States.

When Dr. Mikovits found that 95% of CFS patients from a large selection of practices in the U.S. had XMRV, it was a result that will not be replicated by the U.S. CDC using its own data sets of "CFS" patients. Because all over the world, CFS has been redefined as a disease of "fatigue," and patients so diagnosed have nothing to do with the original cluster outbreak patients for which the name was created. We patients and our doctors have known this for a long time.

At the first CDC-sponsored conference to come up with a name for the new disease, several experts present suggested that these were outbreaks of Myalgic Encephalomyelitis, a neurological disease that has been diagnosed for over half a century in the UK, and has been coded under neurology by the World Health Organization for forty years. The disease is characterized by significant central nervous system (CNS) dysfunction, brain dysfunction, and muscle pain (myalgia). But the CDC rejected that name, too, because there was no evidence of inflammation, they said. They did not include a reference – not even a footnote – to the possibility that "CFS" was actually "M.E." in the 1988 Holmes article. The link was not made until British psychiatrists, acting in concert with Dr. Straus of NIH, used it backwards: M.E. was really CFS, and CFS was really neurasthenia – a neurosis.

For years the CDC and NIH have brushed off all evidence that subgroups of the total set of people with a "CFS" diagnosis have very specific immune defects and active viruses, because it wasn't true for all of them. Well, now that doesn't matter, does it?

Finally, XMRV cannot be the same thing as CFS because it was first discovered among victims of prostate cancer – apparently at least 10 percent have XMRV. Unless prostate cancer is considered a form of CFS (to my knowledge it is not), then XMRV cannot be CFS.

XMRV is not CFS.


XMRV is a Retrovirus

Viruses fall into classifications. Polio is an enterovirus. Epstein-Barr is a herpes virus. XMRV is a retrovirus. And there are categories within categories. Human Herpesvirus 1 (HHV-1), or herpes simplex virus, causes cold sores. And that's about it. But HHV-8 causes Karposi's sarcoma in AIDS patients – and kills them. None of the viruses just mentioned have anything to do with what we know as "the cold." And even H1N1, the "new" virus that popped out this year, already has variations.

What makes this discovery so profound is there are only three retroviruses known to be active in humans: HTLV, HIV – and now XMRV.

The second reason this discovery is so profound is that retroviruses cause problems by creating an environment for other viruses to flourish and even transform themselves into something new.

Let's look at HIV, then.

HIV is important because it either causes, or is so close to the cause as to be indistinguishable for practical purposes, AIDS. In fact, the name was chosen to refer to AIDS – Human Immunodeficiency Virus – HIV.

AIDS itself means Acquired Immune Dysfunction Syndrome. Ironically, when the CFS outbreak first occurred – in the middle of the AIDS outbreak – many patients on both Coasts called the disease HIV-negative AIDS. Quite a comedown in how you perceive the disease from HIV-negative AIDS to "chronic fatigue syndrome," isn't it? Many patients still refer to the disease as CFIDS – Chronic Fatigue and Immune Dysfunction Syndrome. But from the first article and definition (Holmes, 1988) from CDC, the agency has insisted that they were studying Epstein-Barr negative mononucleosis – best described as being tired all the time for no good reason. Chronic Fatigue Syndrome. As they've branched out into the study of all Fatiguing Illnesses, it's no wonder that Dr. Reeves does not think any of his patients will have XMRV. Many – perhaps most - won't. But they were the wrong patients to be studying in the first place, weren't they?

Patients diagnosed with HIV aren't sick yet. They are quite normal (which has made it easier for them to advocate for action to be taken against the disease – we don't' know we're sick until we're really sick).

The CDC and WHO both consider a patient to have AIDS when he has both HIV and an enumerated AIDS illness such as Karposi's sarcoma (a type of skin cancer that was relatively benign and limited to elderly Mediterannean men) or pneumocystic pnsumonia, once an extremely rare opportunistic disease.

HIV alone does not equal AIDS.
HIV + Karposi's Sarcoma = AIDS
HIV + pneumocystic pneumonia = AIDS

Just as there are perfectly healthy people walking around with HIV, there are perfectly healthy people walking around with XMRV. My husband could be one of them. (Yet another set of people due for early testing - healthy family members of patients who are sick and have XMRV.) Bob has been perfectly healthy the entire time I have had the disease, and this is true of a lot of ME/CFS spouses. Perhaps he is a carrier.


XAND is to XMRV as AIDS is to HIV

XAND means XMRV Associated Neuroimmune Disorder, and XAND is to XMRV as AIDS is to HIV.

As the many of the diseases and immune defects that caused the AIDS epidemic had already become known by the time HIV was discovered, so too many diseases and immune defects associated with XMRV are already being studied in the context of original CFS patients – or CFIDS patients – or M.E./CFS patients (a compromise name recognizing the placement of CFS in the M.E. code under neurological diseases in WHO's ICD-10 – but the U.S. is still on ICD-9 and does not recognize the connection). ME/CFS has the best diagnostic guidelines, the Canadian Consensus Document - and patients so diagnosed have already tested positive for XMRV.

So that is our AIDS. The disease that popped out in the 1980s that the CDC did not deign to actually study, choosing instead to create a "new" disease entity that they described as the result of upper middle class women trying to have it all. It is not the disease that, today, they define mainly as an inability to handle stress because of childhood emotional injuries.

Our AIDS is the disease behind an outbreak of geographic clusters of serious diseases throughout the United States in the 1980s, often (but not always) tied to Epstein-Barr Virus; often described as a bout of the flu that refused to go away. Our AIDS is the disease that the CDC refused to study at all. And our AIDS has been permitted to spread as a result.

There is one intriguing difference between HIV and XMRV. HIV apparently causes AIDS by permitting the AIDS abnormalities and diseases to flourish in an infected body. XMRV may actually cause neurological symptoms by itself.

For now, we could easily - immediately - begin to turn to our "AIDS" - to the cluster of conditions we already know are associated with CFS. Over the past 25 years, using homogeneous population groups that fit either the Holmes or Fukuda definition, or both, clinicians and researchers have come up with a number of immune defects and viruses associated with their "CFS" samples. (Again, not the CDC's CFS samples. The CDC would be the first to tell you that.)

It begins with M.E., which has been associated with coxsackie B for years.

Patients from the cluster outbreaks were prone to immune defects such as T-cell inversions, natural killer cell dysfunction, and a defective form of Rnase-L. They were far more likely than the normal population to have HHV-6 (particularly Variant A), Cytomegalovirus (CMV), mycoplasma, a particular enterovirus that caused severe IBS symptoms, and parvovirus B19. Conditions such as parathesias, photophobia, chronic hypothyroidism, chronically low adrenal levels (never formalized into a disease name), and the autonomic nervous system dysfunction known as NMH/POTS (neurally mediated hypotension/postural orthostatic tachycardia syndrome) were brusquely dismissed with a sample of, say, 35 patients. The press release would say, for example, "HHV-6 has no statistical relationship to CFS." And that would be the end of that.

Each time researchers discovered a biomarker or virus connected to a cluster of patients who fit the Holmes or Fukuda research definitions of CFS, the CDC or NIH brushed it aside because the finding was never a "perfect marker for CFS."

That meant that we are starting out with a list of possible cofactors with which to connect the retrovirus XMRV to the disease XAND.


What is XAND?

Note:XAND is a proposed name already in use, but it will take years for it to become official. Since XMRV is a newly discovered disease, we believe that the use of the new name XAND from the beginning will avoid confusion resulting from existing definitions for associated diseases.

XAND (pronounced "Zand") stands for XMRV Associated Neuroimmune Disorder.

To understand it, let's go back to the AIDS model again.

HIV by itself is not AIDS. You have to have one of many defining diseases to be diagnosed with AIDS.

HIV + Karposi's sarcoma = AIDS
HIV + pneumocystic pneumonia = AIDS

So what is XAND?

XMRV + natural killer cell dysfunction = XAND
XMRV + active HHV-6 = XAND
XMRV + active CMV = XAND
XMRV + T-cell abnormalies = XAND
XMRV + Coxsackie B = XAND

The disease that XMRV has now made it possible to diagnose is XAND.

And, depending on funding, this can happen very quickly. As I mentioned, we already have a lot of candidates for co-factors in terms of patterns of immune markers and viruses. All we need is to put the two together.

It would be nice if the CDC and NIH took over at this point. But patients, advocates, clinicians and researchers who have danced the dance with both agencies for a quarter of a century - while this retrovirus was permitted to spread unabated [Dr. Peterson has a patient sample from 1984 that contained the retrovirus] - they did everything in their power to hide it.

While there are obviously new scientists and researchers at NCI and DHHS who want to do the right thing, we are understandably nervous about all the bureaucratic officials still there who were part of the quarter-century cover-up.

For years, NIAID refused to fund any research into "CFS" unless it included a study of major melancholic depression. Since 2000, NIH has funded less than 5 million dollars of research into CFS (and not some other project disguised as CFS) - $5 per adult known to have the condition.

For obvious reasons, none of us are particularly thrilled at the idea of CDC controlling the research, either. As Dr. Nancy Klimas pointed out during the October 29 CFSAC meeting, it was the CDC that slammed the door on retrovirus research on CFS patients in 1991. We'd be just as happy to let Dr. Reeves pursue his fatiguing illnesses off into the sunset.

One suggestion has been that, in the beginning, due to the urgency, perhaps research funding on XMRV and the public face of XMRV should be placed directly in the head office of the Department of Health and Human Services. With the United States in the middle of the greatest potential health care overhaul in United States history, that is not very likely.

That is why we must support outside institutions such as the Whittemore-Peterson Institute and the British group InvestinME, until the government accepts the responsibilities of this very serious, contagious illness.


Myalgic Encephalomyelitis

Where does XMRV fit in with M.E., or Myalgic Encephalomyelitis?

Perhaps M.E. is a cofactor: XMRV + M.E. = XAND.

Perhaps we can divide M.E. into ME-XMRV and ME-Ramsay (just as there are cases of prostate cancer that have nothing to do with XMRV).

Margaret Williams has suggested a natural relationship because of decades of evidence that M.E. is related to coxackie B. (See The Role of Viruses in M.E., 2009.)

Unlike CFS, M.E. is a disease, a disease that has been diagnosed for half a century and coded under neurological diseases in ICD-10, the World Health Organization's current International Classification of Diseases (G93.3) - and it has been there for FORTY YEARS.

The whole "CFS problem" might not have gotten away from us had the authorities followed the advice of specialists who strongly suggested, in 1987, that the 1980s outbreaks were due to M.E.

And M.E. would be a well-known disease today, as M.S. is, had it not been for a cult of British psychiatrists who claimed to follow the theories of "biopsychosocial" medicine (and whose answers fit well the needs of insurance companies and national health agencies to save money after the unexpected jolt of AIDS).

How silly it will look to have attributed the results of a retrovirus to "inappropriate illness beliefs."

Pay me now or pay me later. Every year the authorities refused to face this disease head-on, they saved money in the short run by leaving patients out in the cold. But they also increased costs in the long run by ensuring the disease would spread from the tens of thousands to millions - and now, without an end in sight.

Had everyone involved dealt with the "CFS" outbreaks as outbreaks of M.E. at the time, we would not have anywhere near so many people sick today. Perhaps they did not have M.E., but we would have learned a lot about what they did have. And patients with M.E. would not have been sacrificed to the effort to bury CFS.

The CDC and other agencies have suggested that the 3.5% estimate for the normal population effectively makes the retrovirus endemic. Really? If it is indeed too late to stop the spread, precisely whose fault would that have been? I don't think I want to take their recommendation that there is no need to continue to study the disease. Just how long do we want to play chicken with it?

Mr. President: Please appoint a private commission of retroviral, XMRV, and originalCFS and M.E. experts to organize the funding, testing, and treatment of patients with XMRV and XAND. Please do so as soon as possible because we have already lost 25 years, and this is a contagious disease.

The good news is that the answers are only a blood test away. It is a matter of organization, care, and funding. This time, let's get it done right.

Let's insist that the correct terminology for diseases in the context of a retrovirus be used. The CDC always said that when there was a scientific reason to drop CFS, we would drop CFS. WE MUST INSIST UPON IT THIS TIME.

XMRV is not CFS.
XMRV is to XAND as HIV is to AIDS.
After 25 years, time to study the right disease. Let's conquer XAND.

Mary M. Schweitzer, Ph.D.


Postscript

Scientists have a lot to keep them busy. Hundreds of thousands of patients diagnosed with "CFS" are going to want to take the test, which is currently being offered in the $500-$600 range at VIP labs in Reno. Eventually the testing process will have to be more formalized, but at least they have made the test available so patients do not have to wait. Profits from the XMRV test will go to further research at the Whittemore-Peterson Institute.

Warning: This research is in very early stages, so don't pin your hopes on a single test. It would be best to work through a physician, particularly one familiar with the comorbidities that turn XMRV into XAND, or a physician who would change your treatment protocol if it turned out you had XMRV. However, most ME/CFS patients in the United States have no one to work with who comes close to being a specialist on the disease they have, and I can understand the desire to find out if what you believe in your heart is true: there is a retrovirus underlying the whole problem. I just want to warn patients not to be discouraged if these early tests don't turn out to be positive. There is a lot that will come from this research. Five years from now the scene will be dramatically transformed.

Among the questions to be answered: How is the virus transmitted or activated? Is XMRV by itself a symptom-causing disease, in addition to the peculiar role it plays in conjunction with other diseases (as do all retroviruses)? What diseases are activated by XMRV? What treatments are already available, and how long will it take to get new treatments to patients? What does it mean that roughly 3.5% of apparently healthy people are positive for XMRV?

For a good summary of the issues involved, by a clinician in the center of the battlefield for 25 years, read Dr. David Bell's description of XMRV and XAND. There are good British summaries, one by Margaret Williams and another by the British research organization MERGE.

For a clear and professional seminar on XMRV, watch the presentations by Dr. Dan Peterson and Dr. Coffin on the videotape of the October 29, 2009, CFSAC meeting at DHHS in Washington. Go to the main CFSAC website at http://www.hhs.gov/advcomcfs/. Click on "Day 1 videotape" in the box to the right of the page. You need to have RealPlayer to view it (it can easily be downloaded for free at RealPlayer if you do not already have it.) Dr. Peterson's presentation begins at roughly one hour and 23 minutes into the video for Day 1; Dr. Coffin's presentation follows.

I have had the disease derisively called "CFS" for two decades; I have been unable to work for 15 years. My natural killer cell function is 2%; I have the abnormal Rnase-L. I suffer from recurring bouts of Epstein-Barr, and I have chronically active cytomegalovirus (CMV), HHV-6 (Variant A), and HHV-7. I responded well to the immune modulator Ampligen but the FDA has so restricted it I cannot get it any more on the East Coast, so right now I am very ill. I do not know whether I have XMRV, but the finding is very exciting for everyone who has had to live with "chronic fatigue syndrome" since the CDC insisted on using that name in 1988.

The private Whittemore-Peterson Institute needs your help to continue this work. It is a nonprofit institution founded by the parents of a patient who has had the disease for over 20 years - since she was 12. A donation as low as $5 will help speed up the time it takes to get people tested, identify cofactors, start treatment with existing remedies, and continue research on the nature of the disease and new treatments to offer.

Other similar nonprofit patient-run institutions created to support research include Invest in ME in the UK, and the HHV-6 Foundation.

Our world is about to change.

Mary M. Schweitzer

 







Sunday, December 13, 2009

Statements of Concern about CBT/GET for High Court Review


  Statements of Concern about
  CBT/GET provided for the High
  Court Judicial Review of February
  2009

  Margaret Williams

  12th December 2009

  Over twenty internationally renowned ME/CFS experts provided
  Statements in support of the Claimants' case for the Judicial
  Review of the National Institute for Health and Clinical
  Excellence (NICE) Clinical Guideline on "CFS/ME" that was
  brought by ME/CFS sufferers Douglas Fraser and Kevin Short
  and heard before Mr Justice Simon in February 2009 in the High
  Court in London.

  Many authors of the Statements expressed concern about the
  recommendation by NICE that the primary management
  intervention for ME/CFS should be Cognitive Behavioural
  Therapy and Graded Exercise Therapy (ie. CBT/GET, which are
  the subjects of the PACE Trial).

  Regrettably, many of the experts' Statements were not used.

  At the eleventh hour, NICE strongly objected to much of the
  material that was to have been relied upon in Court,
  threatening to seek a substantial "wasted costs" Order against
  the Claimants' solicitor and also potentially against the
  Claimants' barrister personally, a significant threat which had
  a devastating effect on the case in that - without consulting
  with either of the Claimants or with any of the Claimants'
  non-legal advisors - the Claimants' lawyers decided to
  withdraw much of their evidence, to change the pleaded case,
  and to apologise to NICE and to the Court.

  As is well-known, the Judicial Review failed on all counts. The
  Judge ruled that the Claimants' evidence was unconvincing,
  unreliable, unfounded, untrue, and entirely without merit; that
  their contentions "cannot be sustained" and that their claims
  were "seen to be baseless".

  Mr Justice Simon subsequently granted NICE's application for
  wasted costs and as a result, the Claimants' solicitors' firm
  (Messrs Leigh Day & Co) were obliged to pay NICE £50,000 in
  damages.

  Unfortunately, the substantial evidence that was provided for
  the Claimants' lawyers cannot enter the public domain (for
  example, evidence that addressed NICE's lawyers' Defence
  (Grounds / Arguments), Exhibits, or the 24 Witness
  Statements submitted in support of NICE).

  Because their case had been changed without any consultation
  or agreement (a serious breach by the Claimants' lawyers), the
  Claimants lodged a formal complaint against their own former
  solicitors and barrister
; initially, both Leigh Day & Co and the
  Head of Chambers at One Crown Office Row robustly denied
  any failure to act in the clients' best interests.

  However, the Claimants pursued their complaint and submitted
  it to both the Legal Complaints Service (LCS) and the Bar
  Council Standards Board.

  Whilst numerous heads of the Claimants' complaint to the LCS
  about Messrs Leigh Day & Co were not able to be addressed
  by the LCS (because some of them involved a complaint about
  professional legal advice given or not given, about which the
  LCS advised that further independent legal advice should be
  sought with a view to pursuing a negligence claim) and some
  procedural complaints were dismissed, the substantial
  complaint (ie. failure to obtain clients' instructions before
  submitting a second Witness Statement) was upheld and the
  LCS ruled in favour of the Claimants.

  The complaint to the Bar Council Standards Board about the
  barrister was referred by the Complaints Administration
  Department to the Complaints Commissioner, who requested
  an Opinion from a barrister; the barrister's Opinion has now
  been received by the Complaints Commissioner but the ruling
  is still awaited.

  Regarding the experts' Statements, it is not known if Mr
  Justice Simon read even the ones that were initially provided
  for him.

  They were certainly not mentioned in Court and there is no
  mention of them in the official transcripts or in the Judgment
.

  Extracts from some of the Statements for the High Court that
  supported the Claimants include the following:

  *) "In my view, the Guideline is biased and over
  rigid in its recommendations and will put a large
  number of ME sufferers at risk of harm through its
  strong recommendations for the use of CBT and GET.

  CBT is based on the idea that somatoform disorders
  are maintained by abnormal or unhelpful illness
  beliefs which lead to abnormal or unhelpful
  behaviour.

  The first requirement for a somatoform diagnosis is
  that there be no physical cause for the symptoms.
  This is not the case in ME/CFS"

  (Malcolm Hooper,
Professor Emeritus of Medicinal
  Chemistry, University of Sunderland, November 2007)

  *) "Two forms of treatment.are CBT and GET. CBT
  is a psychological treatment. Its application in what
  is certainly an organic disorder is basically irrational.

  Its putative mode of action is based on the
  proposition that patients with ME/CFS feel unwell
  because they have an 'abnormal illness belief', and
  that this can be changed with CBT.

  It has never been proven to be helpful in the
  majority of patients with ME/CFS.
GET comprises a
  regime of graded exercise, increasing incrementally
  over time.

  It has been almost universally condemned by most
  patient groups. A number of patient surveys have
  shown it to be, at best, unhelpful, and at worst, very
  damaging.

  Its application is counter-intuitive, particularly when
  one of the most debilitating and well recognised
  symptoms of ME/CFS is post-exertional malaise
  which can put some patients in bed for days after
  relatively trivial exertion"

  (Dr William Weir, Consultant Physician, November
  2007)

  *) "The GDG has placed undue reliance upon a small
  number of RCTs that were methodologically flawed
  because they did not adequately define the patient
  population"

  (Dr Terry Mitchell, formerly Consultant Clinical Lead
  (CNCC) of the Norfolk, Suffolk & Cambridgeshire NHS
  ME/CFS Service, 23rd June 2008)

  *) "The predominance of psychologists /
  psychiatrists on the Guideline Development Group is
  entirely inappropriate and has led to a biased
  analysis in my opinion.

  The GDG has placed undue emphasis on a few UK
  clinical trials which support the use of psychological
  treatments, however, these studies did not properly
  or adequately define their patient population"

  (Dr Jonathan Kerr, Hon. Consultant in Microbiology;
  Consultant Senior Lecturer in Inflammation; Principal
  Investigator of the CFS Group, St George's University
  of London, 11th August 2008)

  *) "You will see from my attached treatise that I
  consider that the recommendation of CBT and GET as
  blanket treatments of 'clinically excellent' first choice
  is extremely dangerous to patients.

  I am concerned that NICE claims that an adequate
  evidence base supports CBT/GET, when in fact the
  Guideline Development Group (GDG) relied almost
  exclusively on a handful of extremely controversial
  RCTs (random controlled trials).

  I have no doubt that patients in the research quoted
  by the GDG did not have ME/CFS"
  (Dr Irving Spurr
, Newcastle ME Research Group; 12th
  August 2008)

  *) "My overall impression reading the Guidelines for
  the first time was one of alarm. I will limit my
  comments to the deficiency which has the greatest
  potential for harm to patients.

  The NICE Guidelines do not make any reference to
  the biomedical literature on ME/CFS. A physician
  who is new to the field and who has not had time to
  read the thousands of paper reporting measurable
  abnormalities in ME/CFS may get the impression
  that:

  (1) Biomedical issues are irrelevant in ME/CFS and
  that

  (2) CBT and GET actually make the core symptoms of
  people with ME/CFS better.

  A close read of the literature reveals that none of
  the core symptoms of ME/CFS improve with CBT or
  GET.

  The recommendation for GET stems from the often
  quoted but unproven assumption that deconditioning
  causes or exacerbates ME/CFS. In fact this
  assumption has been disproven (Bazelmans et al
  2001; Harvey et al 2008)
and cannot therefore be
  used as a basis for treatment.

  Informed consent is an ethical requisite in the
  practice of medicine. Informed consent requires that
  patients embarking on any therapy be told the
  potential benefits and risks of the therapy being
  recommended.

  Meeting this legal standard in ME/CFS requires that
  patients be told about the potential benefits and
  risks of CBT/GET. If patients are being coerced to
  believe what is not true, psychological trauma can
  result.

  If patients are pushed to increase activity beyond
  their capabilities, exacerbation of symptoms can be
  expected.
The NICE Guidelines are biased towards a
  particular model of CBT/GET that is widely viewed as
  ineffective and potentially unethical"

  (Dr Eleanor Stein, Psychiatrist, Alberta, Canada, 12th
  August 2008)

  *) "(Graded exercise therapy) is not therapy - it is
  simply the enforcement of an opinion rather than a
  treatment based upon any scientific examination of a
  patient's pathology and treatment of that pathology.

  I believe that those who developed (the) graded
  exercise programme as a valid treatment of ME have
  already been soundly criticised to the Courts. I also
  believe scientific evidence that such a programme is
  against the best interests of ME patients has already
  been presented.

  The benefit of such a programme is to the interests
  of the insurance industry and not the patient.

  Graded exercise programmes may be significantly
  dangerous to many of these ME patients"

  (Dr Byron Hyde
, Clinician specialising in ME, having
  examined over 3,000 patients between 1984 - 2008;
  Ottawa, Canada; 15th August 2008)

  *) "(The GDG) produced a Guideline that
  recommends CBT and GET as the prime treatment
  yet there is in fact published evidence of
  contra-indication / potential harm with GET. This has
  been published by independent researchers (e.g.
  Peckerman et al).

  The NICE GDG claims that CBT/GET are supported by
  significant research. In fact the GDG relied almost
  exclusively on specious reports which are unproven"
  (Dr Derek Enlander
, Virologist specialising in ME/CFS;
  formerly Assistant Professor at Columbia University
  and Associate Director of Nuclear Medicine at New
  York University; Physician-in-Waiting to the UK Royal
  Family and to members of HM Government when they
  visit New York; 18th August 2008)

  *) "I regard the continuing aura of disbelief
  surrounding the illness and mainly emanating from
  the psychiatrists as detrimental to both medical
  progress and the interests of sufferers"

  (Dr Nigel Speight
, Consultant Paediatrician
  specialising in ME/CFS; 20th August 2008)

  *) "It is with regret that I note that the NICE
  Guidelines do not take into account recent
  developments in the management of ME. They lean
  towards a psychological and psychiatric basis, when
  it is now recognised that there are a large number of
  medical problems associated with ME.

  Recent studies on genetics, the central nervous
  system, muscle function and persistent infections
  have shown that there is a great deal of medical
  information available with regard to the management
  of ME"

  (Dr Terry Daymond
, Consultant Rheumatologist and
  recently Clinical Champion for ME for North-East
  England; 22nd August 2008)

  *) "Research from the 'organic school' identified
  many pathophysiological abnormalities in patients
  with ME/CFS resulting from dysfunction in a number
  of vital control systems of the body such as the
  central nervous system, the autonomic nervous
  system, the endocrinological system and the immune
  system.

  The attitude of the 'psycho-social' school continues
  to be to largely ignore this research
. It seems they
  can only maintain their hypothesis by discouraging
  the search for an organic basis and by denying the
  published evidence
, which they are certainly doing.

  This unseemly battle of ideas has been settled
  politically by proclamation and manipulation, not by
  science, and not by fair and open means.

  CBT and GET appear to be based on the rationale
  that patients with CFS/ME have 'faulty' belief
  systems concerning the 'dangers' of activity, and that
  these aberrant beliefs are significant perpetuating
  factors.

  If CBT to 'correct' these 'false' beliefs can be
  combined with a graded exercise programme to
  re-condition these patients, it is virtually promised
  that a significant proportion of them will improve
  both their attitude and their physical functioning,
  and thus cure their illness.

  Using CBT, patients are therefore to be challenged
  regarding their 'aberrant' thoughts and expectations
  of relapse that the 'psycho-social school'
  psychiatrists believe affect symptom improvement
  and outcomes.

  Cognitions concerning fatigue-related conditions are
  to be addressed; these include any alleged
  'over-vigilance to symptoms' and reassurance-
  seeking behaviours, and are to be dealt with using
  re-focusing and distraction techniques.

  It is when a therapy such as CBT begins to interfere
  with the natural warning systems, of which both pain
  and fatigue are a part, that the increased risks arise.

  In particular, musculo-skeletal pain and fatigue have
  essential function in modulating activity when the
  body is in a state of disease as in ME/CFS.

  NICE, however, recommends over-riding this
  essential safety-net, thus the risk of serious harm is
  increased in this situation of simultaneous activity
  and symptoms denial. This will become a more
  serious risk in patients with more severe ME/CFS.

  The Guideline does not indicate how the clinician can
  tell whether patients' beliefs concerning their
  symptoms are aberrant and/or when the symptoms
  accurately point to the underlying state of the
  disease process"

  (Dr Bruce Carruthers, Consultant Physician,
  Vancouver, Canada, 29th August 2008)

  *) "There have been only five trials of CBT with a
  validity score greater than 10, one of which was
  negative for the intervention; and only three RCTs of
  GET with a validity score greater than 10.

  The total number of available trials is small; patient
  numbers are relatively low; no trial contains a
  'control' intervention adequate to determine specific
  efficacy, and their results are relatively modest.

  In addition, some of the studies (particularly those
  on GET) have used the Oxford criteria for diagnosis,
  a rubric which allows selection of patients with
  chronic fatigue states and which do not necessarily
  exclude certain psychiatric disorders, raising the
  question of the applicability of the results of these
  studies to the many patients with specific biomedical
  symptoms and signs consistent with myalgic
  encephalomyelitis.

  Again, the heterogeneity of the trials, the potential
  effect of publication or funding bias for which there is
  some evidence, and professional doubts about the
  evidence base for some behavioural therapies
  themselves give grounds for caution as regards the
  usefulness of (CBT/GET).

  A commentary in the BMJ (Bolsover 2002) is
  particularly relevant: 'Until the limitations of the
  evidence base for CBT are recognised, there is a risk
  that psychological treatments in the NHS will be
  guided by research that is not relevant to actual
  clinical practice and is less robust than is claimed'.

  Indeed, a large body of both professional and lay
  opinion considers that these essentially adjunctive
  techniques have little more to offer than good
  medical care alone"

  (Dr Neil Abbot, Director of Operations, ME Research
  UK; Hon Research Fellow, Department of Medicine,
  University of Dundee, 29th August 2008)

  *) "The overall flavour of the Guideline is to lump
  together all patients with 'medically unexplained
  fatigue', from relatively mild to profoundly disabling
  illness and to treat all patients with a standard
  approach of gradual reconditioning and cognitive
  behavioural modification.

  By lumping such a heterogeneous mix of
  patients.patients with CFS or ME are left with very
  limited options, and little hope.

  In addition, this document proscribes immunological
  and other biologic testing on patients with (ME)CFS
  in the UK, despite the evidence in the world's
  medical literature that such testing produces most of
  the biomedical evidence of serious pathology in
  these patients.

  Equally unfortunate is the GDG's recommendation for
  behavioural modification as the single management
  approach for all 'medically unexplained fatigue'.

  This month we participated in the International
  Conference on Fatigue Science in Okinawa, Japan.
  Dr Peter White of the UK presented his work using
  behavioural modification and graded exercise.

  He reported a recovery rate of about 25%, a figure
  much higher than seen in US studies in (ME)CFS and,
  even if possible, simply not hopeful enough to the
  75% who fail to recover"

  (Professors Nancy Klimas and Mary Ann Fletcher
,
  University of Miami; 13th September 2008)

  *) Attached as an appendix to the Statement of
  Professors Klimas and Fletcher was a separate
  Summary of Current State of Understanding of
  (ME)CFS), from which the following quotations are
  taken:

  "Many of the symptoms of (ME)CFS are inflammatory
  in nature. There is a considerable literature
  describing immune activation in (ME)CFS. Overall the
  evidence has led workers in the field to appreciate
  that immunologic abnormalities are a characteristic
  of at least a subset of (ME)CFS and that the
  pathogenesis is likely to include an immunologic
  component.

  Fulcher and White (2000) suggest a role for
  deconditioning in the development of autonomic
  dysfunction and overall level of disability in (ME)CFS
  patients.

  On the other hand, Friedberg et al (2000) suggest
  the long duration (ME)CFS subjects are more likely to
  have symptoms suggestive of chronic immune
  activation and inflammation.

  We are currently working with investigators at the
  Centres for Disease Control and the University of
  Alberta looking at the mediators of relapse after
  exercise challenge using gene expression studies,
  neuroendocrine, immune and autonomic measures"

  *) "My main concern about the NICE document is
  that what must be great uncertainty in both costs
  and particularly in quality of life difference is not
  allowed for"

  (Martin Bland, Professor of Health Statistics,
  University of York, 17th September 2008)

  *) "The guideline is dominated by positive and
  largely uncritical recommendations for CBT and GET.
  However, the guideline plays down the fact that
  patient experience has consistently reported that
  significant numbers of people with ME/CFS find these
  approaches to be either unhelpful or, in the case of
  GET, makes their condition worse
.

  Some of the hospital-based services are not being
  physician-led but 'therapist-led'. In some cases
  people are now being given little more than a
  'therapist-led' management assessment followed by
  an offer of CBT and/or GET.

  I received some very unhappy patient feedback on
  this type of service on Saturday 11th October (2008)
  in Colchester, Essex, where great dissatisfaction was
  expressed by many members of the audience who
  attended the ME Association's 'Question Time'
  meeting"

  (Dr Charles Shepherd, Medical Adviser, ME
  Association, 24th October 2008)

  *) "I am a consultant immunopathologist and before
  retirement worked at St James' University Hospital,
  Leeds. A key area of my professional interest was
  and remains myalgic encephalomyelitis and I have
  carried out research into the disorder.

  For a number of years I ran clinics specifically for
  patients with ME. In my opinion NICE guidelines
  overemphasise the usefulness of CBT and GET to the
  detriment of patients.

  I have no hesitation in stating that in my opinion,
  the situation for ME/CFS patients is worse, not
  better, since the publication of the NICE Guideline"

  (Dr Layinka Swinburne, Leeds, 22nd October 2008)

  *) "As my clinical freedoms were progressively
  eroded, it meant that I was becoming ineffective and
  indeed possibly dangerous as a practitioner.

  All that patients could be offered was CBT coupled
  with GET, which I consider not to be appropriate for
  many of my patients and in the case of GET
  potentially damaging for some"

  (Dr Sarah Myhill, General Practitioner specialising in
  ME/CFS, Powys; Secretary of the British Society for
  Ecological Medicine, 10th November 2008).

  Seemingly untroubled by actual evidence, the Wessely School's
  control over the lives of ME/CFS patients and their families
  continues unabated and all attempts to bring these legitimate
  concerns to the attention of Ministers of State have been
  ignored.

* * *
I have found the same thing in my Disability case -- the judge does not even mention anything that says I'm truly ill and cannot work.  Even his own experts are not mentioned in the decision when they don't say what he wants to hear.
 
I have a positive C-Reactive Protein test, "off the charts" high, showing some sort of infection/inflammation, which is never mentioned, because he doesn't want to see evidence that there's something physically wrong, as opposed to his theory that I just need a little counseling and a good anti-depressant.





Research Report

  Prefaced with Notes by ME agenda:

  The Chief Executive of the MRC, Sir Lezek Borysiewicz, is to step down in 2010.

  Source: ME Association News Page

  http://www.meassociation.org.uk/index.php?option=com_content&view=article&id=1088%3Amedical-research-council-to-step-down-in-2010&Itemid=219

  Dr Tim Harrison PhD, DSc, FRCPath. is a Trustee of the CFS Research Foundation.

  Professor Stephen T. Holgate FMedSci, MRC Clinical Professor of Immunopharmacology, University of Southampton is a member of the CFS Research Foundation's Research Committee.

  Professor Holgate chairs the MRC's "CFS/ME Expert Panel".

  Dr Jonathon Kerr is a member of the CFS Research Foundation's Research Committee.

  Dr Kerr is a member of the MRC's "CFS/ME Expert Panel".

  Dr Paul Kellam BSc PhD, Department of Infection, University College London is also a member of the CFS Research Foundation's Research Committee and one of the project supervisors for the UCL PhD Project: Project title:

  A role for XMRV in human disease http://www.findaphd.com/search/showproject.asp?projectid=18971 Division of Infection & Immunity, University College London: Project Supervisors: Prof G Towers; Dr P Kellam

  -----------------------------

  http://www.cfsrf.com/index.html

  CFSRF Newsletter

  CFS/ME - XMRV Is there a connection?

  It is likely that you will have heard or read about the interesting work being carried out by Dr Judy Mikovits and her team at the Whitmore Peterson Institute in Reno, Nevada to see if the retrovirus XMRV (exenotrophic murine leukaemia virus-related virus) might be associated with CFS/ME.

  This research has been given tremendous coverage by the media throughout the world and while anyone suffering from CFS/ME must feel a degree of excitement we must caution restraint. A good deal more work needs to be done before too many claims can be made as to the relevance of this virus in CFS/ME.

  Recently the retrovirus XMRV was found in the tumour tissue of a subset of prostate cancer patients. Both XMRV positive cancer and CFS/ME have been linked to alterations in a certain antiviral enzyme. The team in Nevada decided to carry out a study to see if this retrovirus might be associated with CFS/ME.

  When the team analysed blood taken from 101 CFS/ME patients 68 ) 67%) tested positive to XMRV genes compared with only 8 (3.7%) out of 218 healthy controls. They stated that their results are consistent with the hypothesis that CFS/ME patients mount a specific immune response to XMRV. The have discovered a highly significant association between XMRV and CFS/ME.

  The research associating XMRV with CFS/ME leaves many questions to be answered. First, it will be necessary for the study to be repeated. Over the years there have been claims for other retroviruses in other illnesses which have come to nought so it is essential that this research is found to have been concluded correctly and for the conclusions reached to be confirmed in independent studies around the world.

  We have to ask the question is XMRV a cause or factor in the pathogenesis of CFS/ME oe a passenger virus in the immunosupporessed CFS patient population.

  Several other viruses have been linked to CFS/ME, for instance the Epstein Barr virus, enteroviruses or herpes viruses, so we must ask what is their relationship to XMRV and the presence or absence off theses viruses.

  Another question must be to ask if the virus XMRV causes CFS/ME or is it just more common in people with the illness.

  In the USA the National Institutes of Health (NIH) have taken this research very seriously. They have called meetings of different departments to discuss the implications of these findings, and they and various groups throughout the world are currently setting out to determine whether this association can be confined for CFS/ME patients in Europe and other countries. They have also made a grant of $2 million to take the research further.

  Dr Jonathan Kerr and Dr Judy Mikovits have been awarded $2 million from the NIH to study the disease mechanisms in CFS/ME. $1 million has been awarded to the research team in Nevada, the other $1 million has bee awarded to Dr Jonathan Kerr at St George's University of London, the scientist well known to all the supporters of the CFS Research Foundation who carried out the research which discovered 88 genes which were abnormal in CFS/ME patients but remained normal in healthy people.

  Dr Kerr will study CFS/ME patients to identify important genes which are turned on and off, proteins in the immune system (cytokines) and mutations in the DNA. Some of these American patients have developed Mantle Cell Lymphoma (MCL) after many years of having CFS/ME; these patients will also be included.

  The CFS Research Foundation tackles some of the questions.

  In spite of the large grant which Dr Jonathon Kerr has received from the NIH the Research Committee has decided that it is imperative that we know if UK and USA patients are infected with XMRV. So the Foundation is to fund a study to establish whether there is a relationship between XMRV and CFS/ME by testing samples from the UK and the USA. Dr Jonathan Kerr and Dr Kate Bishop, who is working at the national Institute for Medical Research in London, are planning to examine patients with CFS/ME and match comparison groups, They will test for the virus itself as well as for the immune responses to this virus. It is of course, vitally important to confirm or refute the finding recently published in the USA.

  The Gene Work Continues

  While this work is causing such excitement the work of gene expression continues. Of the 88 genes which are abnormal in the CFS/ME group but normal in the control group, Dr Kerr found that these genes could be divided into 7 subtypes. What was so interesting was that theses subtypes were associated with distinct differences in their clinical patterns and severity. Each of these subtypes had a different list of genes which were abnormal.

  In a further study Dr Kerr tackled a problem which always causes great concern to CFS/ME sufferers and their families and friends. For years there has been dissension among doctors and scientists as to whether CFS/ME patients were suffering from endogenous depression. Many sufferers felt that this was holding up scientific research. Dr Kerr tested the genes of people with endogenous depression and compared them with the genes of 29 healthy blood donors. Gene levels in the endogenous depressed patients were similar to those in normal controls, but, importantly they are different from the CFS/ME patients.

  Dr Kerr and his team are currently extending the previous findings by including a larger number of well-defined patients. These investigations are being conducted on a blinded basis in order to ensure that there has not been any potential bias on the technical aspects of the study. The samples have recently been collected by Dr Tim Harrison, a Reader in Molecular Virology at University College London Medical School, who visited St George's Hospital to prepare the blinding. The samples were placed in tubes, each one coded, and then frozen. Dr Harrison will keep the code, and no one else will know it until the time set for unblinding.

  You will see that this team will have made sure that their findings are accurate. This contrasts with some previous attempts carried out by other groups on a purely empirical treatment methods that have no firm scientific basis. The research being conducted at the present time by Dr Kerr and his team may well result in not only a reliable diagnostic test but also the initial steps for appropriate therapy based on firm scientific data.

  The Future

  The outlook for CFS/ME research has never been brighter. Increasingly, doctors and scientists are believing that this is an organic disease which need organic research. The paper from Nevada suggesting that the retrovirus XMRV might be associated with CFS/ME has caused great interest and scientists throughout the world have been attempting to repeat this study. Whether or not it is confirmed we already know that virus infection is important in CFS/ME.

  We have some encouraging news from the Medical Research Council (MRC). For years people with CFS/ME, their relations, friends and some research scientists have been frustrated by the MRC's concentration on psychiatrists when conducting research into this illness. This has now changed. The Chief Executive of the MRC, Sir Lezek Borysiewicz is anxious that CFS/ME research should go ahead in a wide field. This must be the best possible news.

  The Foundation is seeking new studies of a high standard. We shall have to re-double our efforts to produce these studies and we hope we can receive some part funding from the MRC. We see the possibility of our research expanding and producing even more radical results as it has in the past. The speed at which we can go forward is up to all of us. We can now look to the future with even greater hope.

  Anne Faulkner, Honorary Director



Two reports on Dr. Bell's Lecture

http://www.thedailynewsonline.com/articles/2009/12/12/news/6255826.txt

Discovery sheds light
on a medical mystery

By Paul Mrozek
pmrozek@batavianews.com

Saturday, December 12, 2009

(RELATED STORY: Pediatrician lauds 'extraordinary'
study - ~jvr: See below)

Twenty-five years ago, more than 200 people in rural
Western New York came down with a mysterious
ailment with symptoms such as achy joints, muscle
weakness, digestive upset, insomnia, clouded
thinking and exhaustion.

The practice of Dr. David S. Bell of Lyndonville was
inundated with patients who were all ill in the same
way.

"Just a lot of my patients came in with mono that
didn't get better," he said.

At the time medical professionals didn't know what
the disease was.

Cities throughout the country were also hit hard. One
of illness' nicknames was "yuppie flu," because many
of its victims throughout the country were upscale
urban types.

It was also called "The Disease of a Thousand
Names," because its symptoms were similar to
others such as rheumatoid arthritis, multiple
sclerosis and mononucleosis.

In 1988 the federal Centers for Disease
Control named it Chronic Fatigue Syndrome.

Clusters

In the mid 1980s there were two rural areas in the
United States that had large numbers of CFS cases.
One was in the Orleans County community of
Lyndonville; the other Incline Village, Nevada, near
Reno and close to the California state line.

The geographic scope, of what came to be known by
researchers who have studied what came to be called
the Lyndonville Outbreak, was roughly all of Orleans
County, west to Niagara and Erie counties, south to
Batavia and east into Monroe County.

Bell was trained as a pediatrician and general
practitioner. His career path changed with the
outbreak because dozens of his young patients were
afflicted with the same ailment.

He's published several books on CFS.

"I've become a researcher," he said this week.

Bell, 65, is semi-retired and is not accepting new
patients. His medical office is in Oak Orchard
Community Health Center in Lyndonville.

The total number of people inside the roughly
rectangular area of Western New York diagnosed
with CFS over a three-year period beginning around
1985 was 206, among them 61 children whom Bell
tried to treat.

The disease puzzled the medical establishment.
There was no identifiable cause of CFS or clue as to
how it was transmitted.

The way doctors determined if someone had the
disease was through a clinical exam, confirmation of
symptoms that wouldn't clear up and ruling out other
illnesses, Bell said.

There were no effective treatments. The severity of
the cases varied from mild, in which a could still lead
a productive life but tired easily, to severe, which
meant patients could not function and were
classified as fully disabled.

Some people got better. Others got worse.

In some cases doctors, to avoid fights with the
Social Security Administration over a patient's
disability status, diagnosed people as suffering from
other better known diseases such as atypical
multiple sclerosis or fibromyalgia, Bell said.

The tiredness linked to CFS is caused by a reduction
of blood flow to the brain. That decrease in
circulation occurs when someone with CFS is either
sitting or standing and can only be relieved by lying
down, Bell said.

The doctor said the blood flow in people with severe
cases of CFS can be as low as people with terminal
heart disease.

There's been very little research done on CFS.
Because no one knows the cause of it, it's difficult to
attract grant funds to study the disease and without
money the scientists weren't interested, Bell said.

Breakthrough?

For CFS victims with the most serious symptoms, the
past 21/2 decades provided little hope for either
effective treatment of the disease or any medical
research that could point toward a cause or a cure.

That poor outlook changed two months ago.
Science, a highly regarded medical journal,
published an article in its Oct. 8, 2009, edition,
in which a team of researchers concluded that
CFS was caused by a little-known, rarely-
studied and difficult-to-detect virus.

The Xenotropic Murine Retro Virus (XMRV) is in the
same family of viruses such as HIV and is one of
only four known retroviruses.

"The implications are that this is very, very
important," Bell said.

The research, if it can be replicated through other
studies, points toward a "magic bullet" to find
treatments for and a cause and cure of CFS, Bell
said.

That's one of the main reasons Bell is trying to find
all 61 of his former patients.

"We're going to track down as many as we can," he
said.

Bell runs the Lyndonville Research Group, a loosely
knit volunteer organization that offers support and
information for people with CFS. He also publishes
Lyndonville News, a newsletter about the disease.

On Dec. 6 Bell conducted a CFS workshop at the
Batavia Holiday Inn. The purpose of the seminar was
to update CFS sufferers and their families about the
potential impact of the recently published findings.

More than 100 people from Western New York and
Ontario, Canada attended the forum. There was a
buzz among those in attendance about the Oct. 8
Science article.

"I just think it's very exciting. I can't even wrap my
brain around it," said Cheryl Gates, 49, of Batavia,
who is a former patient of Bell's.

"Any improvement, I'll take. It's huge," Gates said.

Gates, the daughter of former city manager Ira
Gates, has suffered with CFS since 1986. She hasn't
driven a car in 23 years and is disabled.

"I'm pretty much homebound," she said.

If Gates exerts herself physically her symptoms
worsen. There is very little quality of life.

"You miss all the milestones, career and family,"
Gates said.

Gates became ill when she lived and worked in San
Francisco. Her symptoms worsened the following year
and she returned to home to Batavia.

On the day she flew in from the Bay Area, Gates saw
a newspaper article on Dr. Bell and the Lyndonville
Outbreak. She called Bell's office and immediately
became one of his patients.

Ward Karn of Fremont, in the Bay Area of California,
also attended Bell's Dec. 6 lecture. Karn, 60, a
native of Indian Falls, has been ill with CFS since
1986-87.

"A 20-year nightmare," he said.

Hamburg resident and Bell patient Lori Lawhead said
she's had CFS for seven years.

Lawhead said the disease has cost her her job. Her
fiance has left her and she is about to lose her
house.

"It's a horrible illness. I know that firsthand," she
said.

Dr. John Whiteman, an orthodontist from Niagara
Falls, attended Bell's workshop to get first-hand
information for his daughter, Kimberly Ricardi, who
has CFS. Ricardi, 37, became ill with mono while
attending Penn State, but the symptoms never
dissipated.

Bell later diagnosed her with CFS. Ricardi is married
and has a child but tires very easily.

"She knows how to manage. She has to lay down in
the middle of the day," Whiteman said.

Whiteman said he thought Bell's presentation was
"tremendous" for both lay people and medical
professionals.

Whiteman said individuals who have CFS are often
stigmatized by people who think they are a "bunch of
sissies," who just lack motivation or discipline to live
a normal life.

Two sisters with CFS from Ontario, Canada, traveled
to Batavia for Bell's seminar.

Rachelle McCoy, 49, of Cornwall, has been ill for four
or five years. Carole Anne Fischer, 54, has been sick
for 21/2 years.

Both were originally misdiagnosed.

"We had exactly the same symptoms," Fischer said.

Both women subscribe to the Lyndonville Newsletter
and are unable to work. They said they are anxious
for follow-up research to be done on XMRV.

"I guess we'll wait six months," McCoy said.

Bell conducted follow-up studies of his original
patients 13 years after the Lyndonville Outbreak.
He's been in contact with about 40 of them and has
not been able to find the other 20.

Any of Bell's former patients with whom has not
been able to contact and who want to participate in
the follow-up should call (585) 765-2099.

wpinstitute.org

davidsbell.com

``````````````

http://bit.ly/4KofDR

The Daily News
online

Pediatrician lauds
'extraordinary' study

By Paul Mrozek
pmrozek@batavianews.com

Saturday, December 12, 2009

(RELATED STORY: Discovery sheds light on a
medical mystery - ~jvr: See above)

The scientists who conducted ground-breaking
Chronic Fatigue Syndrome research were from the
Whittemore Peterson Institute in Reno, Nev., in
collaboration with teams from the Cleveland Clinic
and the National Cancer Institute. Whittemore
Peterson is a non-profit organization formed
specifically for research of diseases such as CFS and
other neurological immune illnesses such as
Fibromyalgia.

Results of the Whittemore Peterson studies were
published in the Oct. 8, 2009, issue of the medical
journal Science. The researchers concluded that a
relatively unknown retrovirus, XMRV, causes CFS.

Of the 101 CFS patients in the Whittemore test
group, XMRV was detected in 68 of them, or 67
percent.

In addition to the 68 CFS patients who had XMRV,
three other types of tests showed evidence of XMRV
in another 31 people in the clinical group.

In total, 99 our of 101 people had either XMRV or
showed evidence of the virus.

"This is an extraordinary number. The implications
are extraordinary," said Dr. David S. Bell of
Lyndonville.

Bell, a semi-retired pediatrician, began studying CFS
25 years ago, after 61 of his patients became ill with
similar symptoms.

In a healthy control group tested as part of the
Whittemore Peterson study, only eight out of 218
people from throughout the United States, or 3.7
percent, showed the presence or evidence of XMRV.

Bell said the Oct. 8 article in Science was
accompanied by a commentary from virologist Dr.
John M. Coffin of Tufts University. Coffin has studied
viruses for more than 40 years and is known as "The
Father of Retroviruses."

Coffin wrote, "As a first paper, this is as good as it
gets, but it's only a first paper."

Coffin was referring to follow-up studies that will
have to be done, to either confirm and disprove the
findings in the Oct. 8 article.

Bell said he anticipates another half-dozen research
papers on XMRV to be published in the next six to
seven months.

"This is the way science works. It will get sorted out
sooner or later.

"My personal bias is that this (Oct. 8) paper is so
good, they would not make the simple mistakes,"
Bell said.

If, as Bell anticipates, the follow-up studies confirm
the original results, researchers will not have to start
at square one to determine treatment. Twenty-five
years of clinical trials on AIDS drugs should pave the
way for treatment of XMRV, he said.

AIDS is caused by HIV, which is another retrovirus.

There are pharmaceuticals on the market that can kill
XMRV in a test tube but there are no conclusive
studies done to determine their efficacy on humans,
Bell said.

Bell said if clinical trials are conducted on drugs to
treat CFS, it won't happen in Lyndonville. It will have
to take place at a medical research facility that
would have the staff and resources to perform the
studies, he said.

Bell said he'd like to see, at minimum, a satellite
research clinic established in Western New York so
local CFS patients could participate in the research.
He suggested that CFS patients and their families
contacted their Congressional delegation to lobby for
research to be done in the region.

© 2009 Batavia Newspapers Corp.