Friday, July 23, 2010

Dr. Teitelbaum for Psychology Today

 
We have a medical system that still has some "Flat Earth" advocates ― those who are trying to make believe CFS and fibromyalgia are not real illnesses. As has occurred in the past with many illnesses that afflict women more than men, and where a diagnostic lab test did not exist early in its exploration, some physicians tried to make believe the patient was simply crazy. This happened with multiple sclerosis (called by some "hysterical paralysis"), rheumatoid arthritis and more recently lupus. Now it is CFS and fibromyalgia patients' turn to suffer.

The source of the problem can even be seen in the medical term "hysteria," which is derived from the word "hystero," meaning uterus. If you are a woman, and the doctor doesn't know what's wrong with you, you're crazy.

I would note that although I have found the individual researchers at the NIH and CDC to be good and well-meaning individuals, the cultures in both seem to discourage research that suggests CFS/FMS are anything but psychological illnesses.

The "absence of evidence" for XMRV in some studies does not mean "evidence of absence." It simply means most labs do not know how to properly test for the virus.

 

 

Thursday, July 22, 2010

It's a Party, and You're Invited!

WPI sent out an email re: the grand opening of the Center for Molecular Medicine, in which the WPI is housed.

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

Join us for the grand opening of the Center for Molecular Medicine

Discover the future of health

The University of Nevada, Reno, the University of Nevada School of
Medicine, and the Whittemore Peterson Institute for Neuro-Immune
Disease invite you to the grand opening of the Center for Molecular
Medicine

Saturday, August 21, 2010
10:00 a.m. to 12:00 p.m.
Center for Molecular Medicine
University of Nevada, Reno
Reno, Nevada

Map & Directions
http://www.wpinstitute.org/CMM_Map.pdf

Discover this one-of-a-kind facility and take a glimpse of the future of health

For more information about the Center for Molecular Medicine please
visit medicine.nevada.edu/cmm or wpinstitute.org

No RSVP is required
 
 

The Owl Droppings Cure

Available on MESHARE, at:
http://groups.google.co.uk/group/meshare/web/oth-owl-droppings-cure

Why owl droppings cure CFS
 

For many years I have believed that just about any suggested 'treatment' for CFS might be shown to be 'effective', however crackpot.  There are a several reasons why this might be so, including:



Depression.

There are probably people diagnosed with CFS who are depressed.  It may be primary or a secondary problem resulting from CFS.  Depression can be a debilitating and distressing illness.  If depression is helped to any significant degree by whatever means the therapy could be 'proved' an effective treatment for CFS.



Psychological/psychosomatic.

Despite my impression that the Wessely School exaggerate the relevance of their theories; I do think it likely that their ideas apply to some people who have are given a diagnosis of CFS.  So there might be some who are somatizing, phobic, neurotic, etc.  It might also be that sensitization can develop in some people with CFS, so as with depression, these phenomena could occur as secondary effects resulting from prolonged pain, illness and neurological disease.  Any intervention that helps to lessen the impact of these phenomena might be 'proved' to be effective in a proportion of subjects.



Compassion effect.

Many ill and disabled people are vulnerable.  Their very survival may depend upon the direct or indirect support of others.  This support has its basis in compassion - "pity that inclines one to help".  Intolerance, impatience and prejudice are commonly encountered by the disabled and this certainly happens with CFS.  Therefore it would not be surprising if some people with CFS were grateful simply for getting positive attention that acknowledges their suffering.  Such gratitude could have an influence on how treatment effects are reported.  It might be felt as ungrateful and maybe even dangerous for a client to report failure or negative effects of a therapy.  Equally, they might exaggerate any benefits they felt out of gratitude.  This might go so far as to make 'treatments' appear effective.



"Stay with me" effect.

This is so common in movies and dramas that it only needs explaining briefly.  The bullet riddled victim is leaking fatally but the hero/ine says, "stay with me"; because we all know that by sheer willpower anyone can compensate for a quart of lost blood and ruptured organs.  Death is optional.  Therapists who exploit this idea that willpower can overcome death and disease leave their clients little choice: either improve (or say that you have) or be a weak-willed failure.



Self-serving bias effect.

By the time someone has paid hundreds of pounds for the latest 'lighten-up programming' or whatever, told their friends and family they are going to try it and dared to dream about a healthy future; they have a lot invested in the therapy succeeding.  That 'lot' includes their ego - if it doesn't work they might look a bit of a twit.  Perhaps they could blame the therapist if it doesn't work (if none of the above phenomena prevent this).  Except of course, where therapists pre-empt blame by making it clear that any failure of the therapy is entirely the client's fault for not doing it properly.  In which case all that's left is to change one's name and move to a different town.



It works! effect.

It's got to actually work for somebody, surely?  Whatever the heck it is.





The owl droppings cure:
WyseOwl Biotherapies
BioImmune Natural-Balance Compound

AMAZING HEALING COMPOUND DISCOVERED IN OWLS



Owls are mythical creatures renowned for their wisdom and healing powers.  The Aztecs and Ancient Egyptians worshipped them, believing them to be guides that escort the spirits of fallen warriors to Valhalla.



In 1763 Charles Darwin published The Origin of Species and started evolution.  Later scientists discovered computers and made technological progress.  More recently, the majestic owl is once again the focus of scientific study.  As WyseOwl Biotherapies' Chief Science Officer and noble prize* winner, Professor Chickpea explains:



"Owls excrete large conglomerations of animal bones, teeth, claws and other non-digestibles. This improbable feat is made possible by a special gland in the owl's bottom which releases complex chemical compounds.  Science has shown that these chemical compounds relax muscles, veins and tissues, stimulate a healing response to rapidly repair any damage that occurs and an immune response to prevent infection.  The compound not only contains a powerful painkiller that saves the owl discomfort, but also a dopamine stimulating chemical that actually makes the owl feel good about doing a number '2'.  If this were not fantastic enough, the compound also cleans the owl's bottom and leaves it smelling fresh and fragrant.



"WyseOwl Biotherapies mix this compound with wax and cotton to make therapeutic earplugs, a chemical process permits the compound to pass through the ear into tissues close to the brain.  While you sleep, your body undergoes extreme relaxation, your immune system and healing processes are stimulated and you wake-up feeling and smelling GREAT!"

Special introductory offer only £500 for a one week supply.
Caution - side-effects may include hooting, mouse-craving, perching and poverty.



(* Red Lion darts champion 88/9)

Final Thoughts
·        Testimonials are no substitute for research data.

·        Unless 'Case studies' result from properly conducted research, they are potentially even less reliable than testimonials when financial and other vested interests are considered.

·        A scientific-sounding theory is no substitute for a scientifically established fact.

·        If advertisements describe your illness accurately, it just means they read-up on the internet.  It does not mean they understand or can cure your illness.

·        Just because it is expensive does not mean it is any good.

·        ANYTHING might produce a 'treatment effect' when applied to CFS, especially if loose diagnostic criteria such as the Oxford Criteria are used.

·        All research into treatments for CFS should measure outcome using objective measures.



Peter Kemp

July 2010
 

Monday, July 19, 2010

Prescription: fail -- Step Therapy for Pain

 

But to Loretta Jones, "fail first" is too extreme. "I was one of the people who had to go through step therapy. I have fibromyalgia, and going through step therapy with the pain was excruciating," Jones explained. "Doctors are required to do no harm. That's part of the Hippocratic oath. Part of 'Do no harm' is not to have a patient suffering."


Dr. Byron Hyde to Visit Australia in September

During September 2010 Dr Byron Hyde will be visiting Australia to make
presentations to patients, health professionals and the community on ME/CFS.



Australian Capital Territory: 1st week in September
(http://www.mecfscanberra.org.au)

New South Wales: 7th & 8th September (http://www.me-cfs.org.au)

Western Australia: 9th - 12th September (http://www.mecfswa.org.au)

Tasmania: 15th & 16th September (http://www.mecfs-vic.org.au)

Victoria: 17th & 18th September (http://www.mecfs-vic.org.au)



Times and venues will be posted as soon as they are confirmed. Please
contact the ME/CFS organisation in your Australian state or territory for
updates and more information.



Dr Hyde is an ME/CFS specialist who has been consulting with Canadian
patients for over 25 years. He has been instrumental in understanding the
distinct difference between ME and CFS, and has authored and co-authored
several articles and books on the subject.






Jen Blyth
Administration Officer
ME/CFS Australia (Victoria)
Ph: (03) 9791 3100
Fax: (03) 9793 1866
Email: jen@mecfs-vic.org.au
Web: http://www.mecfs-vic.org.au
 


PANDORA wins $20,000 Grant

Hopefully, this causes people at Chase to look into what PANDORA does and to learn about NEIDs.
 
BRAVO!!!!
 
P.A.N.D.O.R.A.- Patient Alliance for Neuroendocrineimmune Disorders
Organization for Research & Advocacy, Inc - Wins a $20K Grant on
Chase Community Giving


Coral Gables, FL, July 17, 2010 --(PR.com)-- P.A.N.D.O.R.A is pleased
to announce that it has been officially notified by the sponsors of
Chase Community Giving as one of the winners of a $20,000 grant award
on their 2010 charity giveaway. P.A.N.D.O.R.A. ranked number 162, on
the top 200 charities in the entire country competing for the top
200. At the end of the contest, P.A.N.D.O.R.A. had 1,571 votes.

Stephen Silverman, the President of P.A.N.D.O.R.A. stated: "We are
grateful to all who voted for P.A.N.D.O.R.A. Your vote means a lot to
me and to my wife, Marly who suffers with Chronic Fatigue
Syndrome-ME, and Fibromyalgia. Our family knows first hand the
devastating effects of these seriously disabling & debilitating
chronic illnesses."

The contest was held on Facebook and its users voted for thousands of
charities since the contest started in June 15, 2010. "Being placed
on the top 200 small charities by grassroots voting is an
overwhelming endorsement of the unique concept which underlies
P.A.N.D.O.R.A.'s mission: the umbrella of NeuroEndocrineImmune
Disorders (NEIDs), which has a commonality of pathophysiology and
symptomology resulting in substandard personal, and family quality of
life for individuals afflicted with NEIDs," stated Dr. Kenneth
Friedman, Vice-President of P.A.N.D.O.R.A.'s executive board and a
member of the executive board of the IACFS-ME Association.

P.A.N.D.O.R.A. is gratified by the support it has received from the
Neuroendocrineimmune Community expressed as votes in the 2010 Chase
Community Giving Program," added Sandi Lanford, President and Founder
of the Lanford Foundation, Lifelyme, Inc.

Marly Silverman, the founder of P.A.N.D.O.R.A. shared that "Although
our community is composed mostly of disabled individuals whose
illnesses are difficult to diagnose and difficult to treat, and who
often feel unfairly disenfranchised from most of American life; these
individuals were able to vote in sufficient numbers to place
P.A.N.D.O.R.A. in the winning rankings."

The contest application supporting Chase Community Giving engaged
2,619,718 users on Facebook. Veny Musum, the Chairman of the
NeuroEndocrineImmune (NEI) Center™ Project and a member of
P.A.N.D.O.R.A.'s board stated that "The interaction of our members
with our team on Chase Community Giving on Facebook, on Tweeter and
on LinkedIn, as well as on Aboutme-cfs.org, created for the first
time a viable tangible awareness through social media tools, of the
plight of individuals with NEIDs."

"The commonality found on neuroendocrineimmune disorders means that
advances made in the understanding or treatment of one of these
illnesses will increase our understanding and/or treatment options
for the other related illnesses," shared Lesley Fein, MD, a leading
respected treating NEIDs physician, and member of the
P.A.N.D.O.R.A.'s NEI Center™ Team.

Neuroendocrineimmune Disorders Demographics and Prevalence
It is estimated that there are in the U.S. 20 million individuals
suffering from disabling, painful and highly difficult to treat
chronic illnesses such as chronic fatigue syndrome, myalgic
encephalomyelitis, fibromyalgia, Lyme disease, multiple chemical
sensitivity, environmental and Gulf War Illnesses. These illnesses in
general affect more women than men. But they also affect children and
the elderly. It crosses the barriers of gender, social status and
ethnic backgrounds. In the U.S. these chronic illnesses significantly
contribute to 75% of all health care costs in the U.S. The CDC has
stated that in the case of CFS-ME, the annual economic impact in the
U.S. economy amounts to $9 billion dollars (CDC).

P.A.N.D.O.R.A. stands behind its meaningful slogan "One Voice, One
Community, One Cause™, expressing the hope of individuals with
different illnesses and from different socioeconomic backgrounds.
P.A.N.D.O.R.A. is propelled forward by this expression of grassroots
support. It will direct the grant winnings to its daily operational
expenses as well as towards the establishment of the first ever
NeuroEndocrineImmune (NEI) Center (www.neicenter.com) and its
comprehensive programs for the complete care of individuals afflicted
by Neuroendocrineimmune Disorders.

About P.A.N.D.O.R.A., Inc- Patient Alliance For Neuroendocrineimmune
Disorders Organization for Research and Advocacy, Inc.
Based in Coral Gables, Florida, P.A.N.D.O.R.A. was founded on July 1,
2002 by Marly C. Silverman, a Chronic Fatigue Syndrome-ME and
Fibromyalgia patient. Its mission is to raise awareness of the plight
of persons with chronic fatigue syndrome-myalgic encephalomyelitis,
multiple chemical sensitivities, environmental illnesses, and chronic
Lyme disease advocating for quality of life issues. P.A.N.D.O.R.A. is
Built on Hope – Strong on Advocacy – Finding a Cure through Research.
For more information, visit www.pandoranet.info - Find us on Facebook
at http://www.facebook.com/PANDORAORG - Follow us on Tweeter at
http://twitter.com/pandoranet

###

Contact Information
P.A.N.D.O.R.A.- Patient Alliance for Neuroendocrineimmune Disorders
Org. for Research & Advocacy,Inc
Marly Silverman
954-629-0976
msilverman@pandoranet.info
www.pandoranet.info

CFS on German TV

CFS on German TV
Thanks to nockel@arcor.de
 
 
(I've only translated excerpts due to time constraints.  Original German text follows in its entirety for those who are interested.)
 
A Look Back: CFS, The Stolen Life
 
Tired Man:
Everyone knows fatigue.  And most relieve it with less work and more sleep.  With CFS, it's not about exhaustion or even tiredness, as every healthy person knows it.  CFS is also not burnout or a psychiatric illness.  CFS is more a feeling of sickness similar to patients with flu or cancer patients during their treatment. 
 
What is CFS?
CFS stands for Chronic Fatigue Syndrome.  It began as a mysterious epidemic of 250 residents of Lake Tahoe in the mid-80s.  It's been documented for over 25 years.  In England, it's called ME, Myalgic Encephalomyelitis, denoting the involvement of nerves and muscles.
 
"To speak of CFS as chronic tiredness is like calling Alzheimers difficulty in concentrating."
"This disease has as much to do with fatigue as an atom bomb with a matchstick.  It's an absurd description."
"CFS may not be fatal but it ends many lives"
"ME/CFS is like a life sentence and your body is the prison."
 
CFS sometimes begins slowly, but often very suddenly, like a virus infection.  Therefore some CFS researchers and doctors believe it's a virus or infectious event.  What is certain is that the immune system, hormones, nervous system, and energy in the individual body cells are disturbed.
 
"It is like my life was stolen."
 
Roland de la Rosee took sick in 2004 in his workplace, along with 30 of his colleagues.  None of the doctors he consulted were familiar with this illness.

Munich immunologist Dr. Wilfried Bieger explains:
CFS is primarily a physical illness, not psychological. ... The first thing is that the doctor must take the patient's complaints seriously.
American Dr. Nancy Klimas, one of the leading CFS researchers, opined last September in the New York Times that if she had to choose between HIV and CFS, she would rather have HIV.  Her HIV patients are, thanks to brilliant research and medicine, mostly happy and healthy, the CFSers are seriously ill. 
 
Is there a cure?  What can be done for CFS?
 
To date, there is no single therapy for CFS.    On a regular basis there appear in the media recommendations that it can be cured by discipline, exercise and healthy eating alone.
 
Dr. Wilfried Bieger:
With certainty it is difficult, some cases may be incurable ...
 
On 23 October 2009 researchers in the US published the discovery that shook the science world: a retrovirus, XMRV, was found in the blood of patients with CFS. ...  If the new retrovirus is the ultimate cause of CFS, the researchers don't yet know.
 
The one thing that is certain is that when finally the cause of CFS is found, the path will be clear to better diagnosis and medication.
 
Dr. Bieger:
My personal impression is XMRV exists.  It would be, at the very least, a huge diagnostic step forward if I had this diagnostic criteria for CFS patients.  What role the virus plays in the clinic and in the treatment is still open.
 
What is XMRV?
XMRV (xenotropic murine leukemia virus-related virus) belongs to the so-called retroviruses and was first in 2006 identified in the tumors of men with prostate cancer.  It's related to mouse-leukemia viruses, which cause a wide spectrum of cancerous, immunological and neurological conditions in mice.
 
Among other things, healing plants from Africa and Asia are being tested.
 
There's a shimmer of hope.  Maybe in a few years, the unfortunate name CFS will be history!  "My experience is unfortunately not representative for this illness" Roland de la Rosee knows and therefore fights for more awareness for the sickest patients.
 
Authors: Barbara Sabel and Bernd Thomas
 
 
ORIGINAL GERMAN TEXT
CFS im Fernsehen
Gesendet von: "nockel64" nockel@arcor.de nockel64
Datum: Die 15, Juni 2010 2:35
 
 
Rückschau: Chronisches Erschöpfungssyndrom
Das gestohlene Leben
     
Sendeanstalt und Sendedatum: BR, Sonntag, 13. Juni 2010
 
Erschöpfter Mann (Bild: colourbox.com) Bildunterschrift: ]
Erschöpfung kennt jeder. Und viele reagieren darauf: weniger arbeiten und mehr schlafen. Beim Chronischen Fatigue Syndrom geht es aber nicht um eine Erschöpfung oder gar Müdigkeit, wie sie jeder Gesunde kennt. CFS ist auch kein "Burnout" oder eine psychische Erkrankung. Das Chronische Fatigue Syndrom bewirkt vielmehr ein überwältigendes Krankheitsgefühl, ähnlich dem, über das Patienten mit schwerer Grippe und Krebspatienten während der Behandlung berichten. Manche Patienten sind sogar Pflegefälle, unfähig, selbstständig zu essen oder sich zu duschen. Andere verlieren "nur" ihr normales Leben, sie schaffen nur noch 50 Prozent ihrer vorherigen Leistung oder weniger. Bei allen verändert sich das Leben aber radikal.
Was ist CFS?
 
CFS steht für Chronic Fatigue Syndrome, chronisches Müdigkeits- oder Erschöpfungssyndrom. Der Begriff CFS wurde von einer Gesundheitsbehörde der USA eingeführt, um das mysteriöse Leiden zu bezeichnen, an dem über 250 Einwohner am Lake Tahoe in Nevada Mitte der 80-er Jahre erkrankten. In den USA wird die Erkrankung auch CFIDS - Chronic Fatigue and Immune Disfunction Syndrome genannt. Dokumentiert ist CFS seit mehr als 25 Jahren. In England sagt man ME, Myalgic Encephalomyelitis, was die Beteiligung des Nervensystems und der Muskeln betont.
Statements Betroffener
 
Schlafstörungen (Bild: colourbox.com) Bildunterschrift: ]- "Bei CFS von chronischer Müdigkeit zu sprechen, heißt, Alzheimer als Konzentrationsschwierigkeit zu bezeichnen."
- "Diese Erkrankung hat mit Fatigue so viel zu tun wie eine Atombombe mit einem Streichholz. Es ist eine völlig absurde Beschreibung."
- "CFS ist vielleicht nicht tödlich, aber es beendet viele Leben!"
- "ME/CFS ist wie lebenslängliche Einzelhaft, und der eigene Körper ist die Gefängnismauer."
 
CFS beginnt manchmal schleichend, oft aber plötzlich, wie ein Virusinfekt. Daher gehen einige CFS-Forscher und Ärzte davon aus, dass ein Virus oder ein infektiöses Geschehen die Krankheit auslöst. Sicher ist, dass das Immunsystem selbst betroffen ist. Nach einiger Zeit sind auch das Hormon- und Nervensystem und die Energiegewinnung innerhalb der einzelnen Körperzellen gestört. Einige der häufigsten Symptome sind Schwellungen der Lymphknoten, Kopfschmerzen, Muskel- und Gelenkschmerzen, Übelkeit, Herzprobleme, andauernde Erschöpfung, Schlafstörungen, Konzentrations- und Gedächtnisschwächen. ÄRTZE sprechen dann von CFS, wenn andere Krankheiten mit ähnlichen Symptomen ausgeschlossen wurden, die Krankheit mehr als sechs Monate andauert und die Erschöpfung durch Schlaf nicht gebessert werden kann.
"Es ist, als wäre mir mein Leben gestohlen worden"
 
Roland de la Rosée erkrankte 2004 an seinem Arbeitsplatz an ME/CFS, zusammen mit 30 seiner Kollegen. Er fühlte sich vollkommen zerschlagen und kraftlos. Keiner der von ihm befragten ÄRTZE kannte die mysteriöse Erkrankung. Nach mehr als einem halben Jahr schaffte er es immer noch kaum, aufzustehen und seinen Alltag zu bewältigen.
 
Roland de la Rosée:
"Das Ganze verschlimmerte sich stufenweise. Hinzu kamen dann neurologische Ausfallerscheinungen, Taubheitsempfindungen, Wortfindungsstörungen. Sämtliche Symptome waren überschattet von einer bleiernen Schwere und Erschöpfung, wie ich sie bis dahin noch nicht erlebt hatte."
 
Eine andere Patientin ist 34 Jahre alt. Sie will anonym bleiben, denn sie hat Angst vor gut gemeinten Ratschlägen, Vorurteilen und Unverständnis. 15 Ärzte und viele teure Laboruntersuchungen konnten ihr bisher nicht helfen. Seit mehr als zwei Jahre ist sie erkrankt. Ihr bisheriges Leben wurde buchstäblich ausgelöscht. Noch vor kurzem war sie ein sportlicher Mensch. Nach einem erfolgreichen Hochschulstudium hatte sie einen interessanten Beruf gefunden und pflegte einen großen Freundeskreis.
 
Anonyme Patientin:
"Heute kann ich nur noch für kurze Zeit hinausgehen und gerade mal meine Einkäufe erledigen. An manchen Tagen kann ich die Wohnung überhaupt nicht verlassen. Meine Arbeit habe ich verloren, Freunde sind mir nur wenige geblieben. Es ist, als wäre mir mein Leben gestohlen worden."
 
Erst als sie selbst im Netz recherchierte und so zur Immunologischen Abteilung einer Universitätsklinik fand, erhielt sie eine Diagnose: CFS.
Diagnose CFS - eine körperliche Erkrankung
 
Tabletten (Bild: colourbox.com) Bildunterschrift: ]
Der Münchner Immunologe Dr. med. Wilfried Bieger erklärt:
"CFS ist primär eine körperliche Erkrankung, keine psychische, muss aber als Ausschlussdiagnose erfasst werden. Nur durch differenzierte und aufwändige Testverfahren lassen sich Ausfälligkeiten in einzelnen Regelkreisläufen des Körpers nachweisen. Erste Vorraussetzung ist dabei, dass der Arzt die Beschwerden der Patienten ernst nimmt."
 
Roland de la Rosée hat wie die meisten anderen Patienten die Erfahrung gemacht, dass er als psychisch Kranker eingestuft wurde. Sein eigenes Körpergefühl war anders:
 
Roland de la Rosée:
"Ich war mir von Anfang an sicher, dass ich eine körperliche Erkrankung habe. Ich fühlte mich wie vergiftet. Außerdem war ich vorher ein psychisch ausgeglichener Mensch, der ein gutes Leben führte, in dem es keine ernsten Schwierigkeiten gab."
 
Zur Schwere von CFS zitiert er die US-Amerikanerin Dr. Nancy Klimas, eine der führenden CFS-Forscherinnen, die in der New York Times vom September vergangenen Jahres meinte, wenn sie heute zwischen HIV und CFS wählen müßte, hätte sie lieber HIV. Ihre HIV-Patienten seien dank brillianter Forschung und Heilmittel größtenteils gesund und munter, die CFSler hingegen sehr krank.
Gibt es eine Heilung? Was kann man dafür tun?
 
Bis jetzt gibt es keine einheitliche Therapie gegen CFS. Immer wieder erscheinen in unterschiedlichen Medien Meldungen, allein Disziplin, Bewegung und gutes Essen würden ausreichen, um das Leiden CFS loszuwerden.
 
Anonyme Patientin:
"Zu hören, ich solle einfach mehr und regelmäßig Sport treiben, ist furchtbar, denn es geht einfach nicht und ist falsch. Ich finde es eine Zumutung als Patientin, gesagt zu bekommen, ich allein hätte es selbst in der Hand, meinen Zustand zu verändern."
 
Dr. med. Wilfried Bieger:
"Die Heilungsmöglichkeiten bei CFS sind höchst umstritten. Mit Sicherheit ist es schwierig, vielleicht gibt es unheilbare Fälle (...). In jedem Fall tun wir uns schwer, weil wir die Ursachen nicht kennen, wir können nur an einzelnen Symptomschwerpunkten ansetzen und die behandeln. Es gibt Patienten, die auch über längere Zeit die Symptome auf Dauer verloren haben, aber das ist sehr schwer und gelingt nur bei wenigen."
 
Roland de la Rosée hatte Glück, er verwendet Nahrungsergänzungsmittel, sorgt für eine optimale Versorgung mit Vitaminen und Mineralien. Zudem nimmt er einen Immunmodulator mit antiviralen Eigenschaften. Er gehört zu den wenigen Patienten, die sich unter der Therapie wieder erholten und er kann heute sogar wieder arbeiten.
Hoffnung durch neue Forschungen
 
Blutuntersuchung (Bild: colourbox.com) Bildunterschrift: ]
Am 23. Oktober 2009 veröffentlichten Forscher in den USA eine Entdeckung, die die Wissenschaftswelt aufrüttelte: ein Retrovirus, XMRV, wurde in Blutzellen von Patienten mit Chronic Fatigue Syndrom gefunden. Noch am selben Tag erschien diese Nachricht in vielen Medien der Welt, auch in Deutschland. Ob der neue Retrovirus die Ursache von CFS ist, wissen die Forscher noch nicht. In der Vergangenheit wurden mehrere Viren "verdächtigt", CFS zu verursachen oder zumindest damit in Verbindung gebracht, darunter auch der Epstein Barr Virus. Sicher ist: Wenn endlich die Ursachen für CFS gefunden werden, wird die Bahn frei für bessere Diagnosen und Heilmittel.
 
Dr. med. Wilfried Bieger:
"Meine persönliche Meinung ist die, XMRV ist existent. Es wäre zumindest ein riesiger diagnostischer Forschritt, wenn ich CFS Patienten anhand eines bei ihnen allein oder sehr häufig vertretenen Kriteriums diagnostizieren könnte. Welche Rolle der Virus, falls er sich bestätigt, in der Klinik spielt und in der Behandlung ist aber noch vollkommen offen."
Was ist XMRV?
 
"XMRV (xenotropic murine leukemia virus-related virus) gehört zu den sogenannten Retroviren und wurde zuerst 2006 in den Tumoren von Männern mit Prostatakrebs identifiziert. Es ist eng verwandt mit Mäuseleukämie-Viren, die ein breites Spektrum von Krebsarten, immunologischen und neurologischen Krankheiten bei Mäusen verursachen."
 
Seitdem läuft die Forschung zu XMRV, CFS und Krebs weltweit auf Hochtouren. Kürzlich testete eine Gruppe der Universität Utah 28 bereits genehmigte Medikamente gegen XMRV in Zellkulturen. Vier davon waren in der Lage, die XMRV-Replikation (Verdopplung) zu stoppen. Andere Studien beschreiben, mit welchen Tricks das neue Retrovirus in die Zellen des Körpers gelangt. Auch außerhalb der XMRV-Forschung passiert gerade viel, neue pflanzliche Heilmittel aus Afrika und Asien etwa werden getestet.
 
Es gibt also Hoffnungsschimmer. Vielleicht ist in einigen Jahren auch der unglückliche Name CFS Geschichte! "Mein Zustand ist leider nicht repräsentativ für diese Erkrankung", weiß Roland de la Rosée und kämpft gerade deshalb dafür, mehr Aufmerksamkeit für die oft verzweifelte Situation der schwer betroffenen Patienten zu schaffen.
 
Autoren: Barbara Sabel und Bernd Thomas
 

Dieser Text informiert über den Fernsehbeitrag vom 13.06.2010. Eventuelle spätere Veränderungen des Sachverhaltes sind nicht berücksichtigt.

Sunday, July 18, 2010

NYT on Delay in publishing XMRV research

On July 14th, writing in the New York Times, David Tuller observed:

http://www.nytimes.com/2010/07/14/health/14fatigue.html

"Researchers at the National Institutes of Health and the Food and Drug Administration, citing a need to re-evaluate their data, have delayed publication of a new study believed to provide evidence of a link between chronic fatigue syndrome and a little-known retrovirus.

"The study, already peer-reviewed, was supposed to appear in the prestigious Proceedings of the National Academy of Sciences…

"Federal officials said publication was delayed because the findings contradicted those of the Centers for Disease Control and Prevention, which conducted its own study on chronic fatigue and the retrovirus, known as XMRV. The C.D.C. study, which found no connection, was initially also held up for reassessment because of the discrepancies, but was eventually published on July 1 in the journal Retrovirology."

There seems little doubt that the new research into XMRV by the NIH/FDA will eventually be published, but the delay in publication raises some serious issues.

That XMRV is itself a serious matter is unquestionable.  Theoretically, XMRV might be a contagious retrovirus that could render infected individuals non-productive and in need of prolonged medical and social care.  If a connection between XMRV and CFS were proven this could indicate that the infection is already established in the population and has been spreading undetected and unchecked for many years.  These possibilities make XMRV a potential major threat.  The threat must be evaluated and the information required for this will come from research.

What one might hope to see now is medical and scientific establishments acting to the highest standards of skill, professionalism and integrity for the protection of public health.

It is not necessarily irresponsible to publish research that contradicts other research when the written results have met the standards required by respected journals.  Researchers can describe and/or discuss contradictory findings.  It is accepted practice for researchers to propose further research based on their data and analysis.  In the case of contradictory XMRV investigations the obvious proposal would be investigations to discover why researchers got different results; so investigations into methods, patient-cohorts etc would be reasonable suggestions that might accompany or follow contradictory reports.

That this has already happened with XMRV should have been an indication to the CDC and NIH/FDA that while differing results might be frustrating and potentially embarrassing; this is an acceptable part of the learning-curve with new developments in science.  Mikovits et al published their findings of XMRV present in patients with CFS.  This was followed by McClure and others not finding XMRV present in their patients with CFS.  The debate and further research arising from these contradictory studies will probably further knowledge about XMRV and scientific methods.

Perhaps there are occasions where publication of contradictory research would not be in the public interest.  Then decisions about the 'greater good' would need to be made; though who should make those decisions remains undefined.  The World Medical Association Declaration of Helsinki, 2008, states:

"8.  Every medical research study involving human subjects must be preceded by careful assessment of predictable risks and burdens to the individuals and communities involved in the research in comparison with foreseeable benefits to them and to other individuals or communities affected by the condition under investigation."

This fundamental ethic applies to much of the current XMRV research in one very simple way.  The predictable risks and burdens are - you find the virus in participants or you don't.  There can be no question of these possible outcomes being overlooked - it's what the research is for.  If the CDC and NIH/FDA were not prepared for the possibility of either finding the virus or not - what on earth were they doing?

The Declaration of Helsinki further states:

"10.  …Authors have a duty to make publicly available the results of their research on human subjects and are accountable for the completeness and accuracy of their reports… Negative and inconclusive as well as positive results should be published or otherwise made publicly available…"

Therefore withholding publication of contradictory findings could be construed as unethical.  I cannot see that publishing the NIH/FDA research once it passed peer review could have been construed as unethical.  If an innocent and understandable mistake had occurred then explanations, retractions, or apologies could follow - this might be embarrassing but not unethical.

The NIH 'Mission' states (http://www.nih.gov/about/mission.htm):

"to exemplify and promote the highest level of scientific integrity, public accountability, and social responsibility in the conduct of science."  And adds that in realizing these goals they will provide leadership, "in directing programs for the collection, dissemination, and exchange of information in medicine and health…"

When such weighty institutions as the CDC, NIH and FDA put their scientists to work on a problem, the public might reasonably hope that answers will be found.  When concrete answers are not found due to limits of knowledge this might be frustrating but is an outcome that scientists and the public can generally accept. What should not happen is behavior that damages public trust in these institutions.  Publishing conflicting results might have prompted some debate - but I don't believe it would have damaged trust.

By withholding publication, albeit temporarily, the NIH/FDA have created an imbalance.  The CDC findings appear more reliable than those of the NIH/FDA.  They got published first, encountered less hold-ups and their data is out there for all to see.  The CDC seem to be more confident of their findings whilst the NIH/FDA appear nervous about their results.  When the NIH/FDA finally publish, their findings might be viewed with more, not less skepticism, because of the delay.  Quite simply, the CDC got there first - and that is often a good place to be.

It is not the difference in the findings of the CDC and NIH/FDA that I find particularly troubling, it is the difference in their response to these results.  Every researcher takes a risk when they publish - the risk that they missed something that could render their findings invalid.  Responsible researchers minimize the risk by being careful in the design and execution of their investigation, they study existing research in the field, invite criticism and submit to ethical, peer and editorial review.  Then they publish with the risks that inevitably remain.  Researchers that don't want to do this should probably consider finding a safer occupation less likely to cause disagreement and embarrassment.

Peter Kemp

July 2010