Danish / Dansk  French / Française  German / Deutsch  Italian / Italiana   Dutch / Nederlands  Spain / Espagñol   Swedish / Svensk

 
The Whittemore Peterson Institute is conducting a new research project involving XMRV and bloodtransfusions
XMRV Research
Written by the Whittemore Peterson Institute   
Sunday, 28 February 2010 13:54
Whittemore Peterson Institute 

The Whittemore Peterson Institute (WPI) is collecting names and contact information for the transfusion study. Individuals should send an email to This e-mail address is being protected from spambots. You need JavaScript enabled to view it  stating that you became ill after a blood transfusion in the last 7 years.

Provide your name and contact information if you want to participate in their transfusion study. A patient representative will contact you by email with further instructions.

You might be asked to fill out the Patient Volunteer Form, it now features a language drop down box where you can select your language. It's not perfect, but it will help.

We are not sure if international applications for the Bloodtransfusion Research Project are accepted, but please do try and provide Diagnose Support with feedback. Emails to the Whittemore Peterson Institute should be written in English. Please contact us if you need help with language issues.

Spain / Espagñol
 
 
Dutch media also "in the wrong lane"
User Rating: / 3
PoorBest 
Advocacy & Awareness - International Advocacy
Written by Diagnose Support   
Friday, 26 February 2010 15:28

All over The Netherlands - The research published in BMJ today has also been addressed in the press after Prof. Jos van der Meer released a press statement regarding the research.

We urge all our members, readers and Facebook friends to read the translation of the Dutch press items and post a comment on the site where it is published. Only two press sites allow you to comment, all the other ones do not. A few after registration. Feel free to post in the English language. Most Dutch people can read the basics, newspaper editors are fluent in English (or they should be).

 

Fatigue Syndrome: Not a virus after all
 
NIJMEGEN – Chronic Fatigue Syndrome (CFS) is not caused by a virus. Virologist Frank van Kuppeveld and internist Jos van der Meer have not found the so-called XMRV virus in the blood of 32 tested patients.

The Dutch scientists hereby refute the American research published in October 2009 in the famous scientific magazine Science. In this research a connection was published between this virus and Chronic Fatigue Syndrome. The research from Nijmegen is published on the site of the British Medical Journal today.

Jos van der Meer of the UMC st. Radboud in Nijmegen decided to repeat the Science-research because he doubted the value (or validity) of the study. "Of course it is very difficult for people with Chronic Fatigue Syndrome that we again established that there is no virus involved. I would have liked to give them more certainty about the cause of CFS."

How it can be that the Americans did find the virus and the Nijmegen team did not is not clear. Van Kuppenveld recons  the samples used by the Americans were taken from a special group of patients and are not representative of the majority of CFS patients.

Please visit the articles and post a comment: http://www.gelderlander.nl/voorpagina/nijmegen/6308004/Vermoeidheidssyndroom-toch-geen-virus.ece
http://gezondheid.blog.nl/actualiteiten/2010/02/27/chronische-vermoeidheid-niet-veroorzaakt-door-virus#comment-21501


Or write the UMC st.Radboud directly:
http://www.umcn.nl/OverUMCstRadboud/NieuwsEnMedia/Pages/Pers.aspx
This e-mail address is being protected from spambots. You need JavaScript enabled to view it
This e-mail address is being protected from spambots. You need JavaScript enabled to view it
This e-mail address is being protected from spambots. You need JavaScript enabled to view it

Please send the email to ALL of the addresses.

 
NL - De Nederlandse Pers zit ook in de ‘verkeerde baan’
User Rating: / 2
PoorBest 
Nederlands / Dutch
Written by Diagnose Support   
Friday, 26 February 2010 15:15

Voor onze Nederlands- en Vlaamstalige lezers - een antwoord op de berichten die vandaag in de pers verschenen. Het persbericht wat Professor Jos van der Meer (UMC St. Radboud Nijmegen) naar het ANP heeft gestuurd is een lachertje.

 

Het onderzoek werd net als de twee Engelse en het Duitse onderzoek uitgevoerd met summiere technieken (alleen PCR) en is geenszins aan te merken als een ‘replicatie studie’. Het originele onderzoek nam jaren in beslag en keek naar ca. honderd bloedmonsters van ME/CVS patiënten welke werden vergeleken met ongeveer  tweehonderd gezonde mensen. Zelfs in het bloed van 4% van de gezonde mensen werd XMRV aangetroffen. Er werden 4 afzonderlijke technieken gebruikt om het virus aan te tonen

 

De statement van Van der Meer dat hij het Science onderzoek “over heeft gedaan” is derhalve op te vatten als grootspraak.

 

Daarnaast betrof het onderzoek bloed van slechts 32 patiënten. Dat het bloed van 1991 was, doet op zich niet ter zake, ook de ontdekkers van het virus hebben “oud bloed” dat was ingevroren getest en vonden daar wel XMRV. Echter, in 1991 werden patiënten geselecteerd op basis van zelf ingevulde formulieren. Wie zegt dat er bij dit onderzoek gekeken is of deze mensen nog steeds ziek zijn? Of dat de geselecteerde patiënten de biomedische afwijkingen op Neurologisch, Immunologisch of Endocrinologisch vlak hebben die o zo kenmerkend voor ME/CVS zijn?

 

Het antwoord van het Whittemore Peterson Institute op deze studie is hetzelfde als het bericht wat zij hebben doen uitgaan kort na het verschijnen van de tweede Engelse studie: klik op "Lees volledig artikel" zie onderste gedeelte.  

 

Het vervelende van het persbericht van vandaag is dat wederom ME/CVS alleen door Jos van der Meer wordt besproken in de pers. Het is eigenlijk onbegrijpelijk dat geen enkel Nederlands pers bureau het initiatief neemt om zelf eens alle feiten op een rij te zetten en de patiënten èn het publiek op correcte wijze te informeren. Zij zitten werkelijk in de verkeerde baan ! Misschien zelfs wel letterlijk.

 

Het is inmiddels meer dan duidelijk dat er biologische factoren een rol spelen bij de ziekte en dat patiënten die met reguliere medicatie worden behandeld vaak verbeteren. Veel patiënten nemen anti virale middelen c.q. antibiotica om recidiverende infecties in toom te houden, of krijgen pijn medicatie of iets om te helpen slapen. Uit een onderzoek in 2006 in Nederland is gebleken dat 50% van de deelnemende patiënten zich beter voelde na een periode Zithromax te gebruiken, dus helemaal vreemd zou het ook hier niet moeten zijn.

 

Als voorbeeld van de schade: 50% van ca. 30.000 ME/CVS patiënten wordt deze behandelmethode nu onthouden. Stel dat 50% van deze 50% zich zo goed zou voelen dat ze weer aan het werk konden en dat 25% voor zichzelf zouden gaan werken en nog eens 25% part time aan de slag zouden gaan…. Dat scheelt dan 15.000 maal het uitbetalen van gemiddeld € 15.000 aan arbeidsongeschiktheidsuitkeringen = € 225.000.000,- per jaar aan overheidsbesparingen. Of zou het niet zo’n vaart lopen met deze cijfers omdat het voor ME/CVS patiënten zo verschrikkelijk zwaar is om een uitkering toegewezen te krijgen dat velen het erbij laten zitten? Hoe dan ook, er is altijd nog de misgelopen extra inkomstenbelasting voor de overheid omdat mensen die verbeteren met een behandeling weer een inkomen hebben…. Is er nu iemand wakker misschien?

 

Kortom, het is tijd de psychologische aanpak van ME/CVS definitief naar de prullenbak te verwijzen. Het wordt tijd dat Nederland mee gaat doen aan het internationale onderzoeksprogramma en met mensen die weten waar ze het over hebben samen te strijden om tot oplossingen te komen.

  

Een goede samenvatting van de wetenschappelijke onderzoeken in het Nederlands

Website van het Whittemore Peterson Institute

Lees volledig artikel
 
NL - Uitstekend beschreven artikel over XMRV door Ortho
User Rating: / 6
PoorBest 
Nederlands / Dutch
Written by Ortho Institute, Gendringen   
Thursday, 18 February 2010 16:18
ortho 



Ortho, een fabrikant van voedingssupplementen in Nederland, heeft zich toegelegd op het schrijven van een uitgebreid artkel omtrent de ontwikkelingen rondom XMRV. Het stelt ook het gebrek van aandacht voor de zaak van de Nederlandse Media aan de kaak.

Er wordt ook aandacht besteed aan de veiligheid van de nationale bloedvoorraad bij de bloedbanken. Verder zijn bekende wetenschappers geciteerd en heeft de auteur een prima job gedaan om een duidelijk en begrijpelijk verhaal op papier te zetten, wat heel hard nodig was voor Nederlands en Vlaamse patienten.

Lees het artikel Retrovirus XMRV, de "missing link" bij ME/CVS ?
Bron: www.ortho.nl

 
A stand on geographical differences regarding ME/CFS ànd XMRV – the solution lies within the problem
User Rating: / 2
PoorBest 
Written by Carla   
Tuesday, 16 February 2010 21:59

After the initial publication of the Whittemore Peterson Institute in Science magazine where it was stated that 67% of their ME/CFS samples tested positive for XMRV, a few other studies came out which basically stated that no XMRV was found in Germany and the UK. We have heard however that some of the original samples used by WPI actually came from Europe and that also European ME/CFS researchers have found XMRV in patients here but unfortunately this last part is referring to yet unpublished data. We have also heard from a few patients ourselves who were tested postive. More will undoubtly follow when a WPI validated laboratory is established on this side of the Pond where people can request the test themselves and when more studies in Europe are executed in collaboration with WPI.

 

The significance of finding a cause for ME/CFS, Fibromyalgia and other related disorders is worldly underestimated. The prevalence of ME/CFS is 1% of the population, Fibromyalgia about 1.2%. In short, millions and millions of people world wide are affected. Unfortunately not all those patients are aware that there is current research taking place to identify biomarkers and find an underlying cause. If they were, we would have a world revolution on our hands….

 

Read more...
 
CFSAC 2009 video's Day 1 are uploaded up until Dr. Coffman's presentation
User Rating: / 1
PoorBest 
Sunday, 14 February 2010 12:52

CFSAC meeting day 1 - Oct.29, 2009  CFSAC 2009 day 1       

With a joined effort of members of The Barborka Family,  CFSKnowledgeCenter, CFSUntied, Diagnose Support, P.A.N.D.O.R.A., Inc. and Standup2ME, the reconstruction of the CFSAC video's is in progress. In future, all relevant video's will be uploaded onto several channels in order to prevent the loss of information due to circumstances.

Video's of Day 1 (October 29, 2009) up until dr. John Coffman's presentation are now uploaded. Please click the image to view.

 
SE - Pernilla Zethraeus om sin svåra sjukdom
User Rating: / 2
PoorBest 
Svensk / Swedish
Written by Pernilla Zethraeus, Carl-Gerhard Gottfries - sent in by Helle Rasmussen   
Monday, 08 February 2010 12:18
Carl-Gerhard Gottfries, Gottfries ClinicHelle, dashing reporter from Denmark, also scouts for news from surrounding countries.

This time Helle sent in two video interviews and a chat session with Pernilla Zethreaeus and Professor Carl-Gerhard Gottfries. Please click 'Read more' to see the description in English.

The interviews itself are in Swedish. Please forward this information to anyone you might know in Sweden, Denmark, Finland or Norway as often they understand each others' language.
Read more...
 
UK - The 5th Invest in ME International ME/CFS Conference 2010
On the Agenda
Written by Carla   
Friday, 29 January 2010 17:59
The British ME organisation "Invest in Me" is hosting a conference on May 24th 2010. When it was first announced, it seemed a million years away, but let's face it, time goes quickly. Last week "Invest in ME" announced their speakers list, which is impressive. The organisation celebrates it's first aniversary with this conference, it's the 5th already. This years slogan is "A New Era in ME/CFS Research", which it truely is. The theme is "Education of Health Care Staff in ME/CFS".

It will be a one day conference, the doors will open at 8 am and it will be a long day. There are quiet rooms available for patients who would like to rest and food and beverages will be provided. The website holds all the details.

This conference is available for patients, patient organisations, health care professionals and researchers. Invest in ME also appeals in particular to members of the government, social services, health departments and education to attend and learn about the truth behind ME/CFS. Patients pay the minimum fee of 35 pounds sterling, rates for other attendees are higher.

If you are contemplating to attend the conference, please be aware that you will have to purchase the ticket in advance and that on average, hotels in the UK provide little comfort for a lot of money.  Other than that, the setting is marvellous and if you have the opportunity to go, we would surely recommend it.

  • Please visit the conference pages on the Invest in ME website for more details.


  •  

     
    Chronic fatigue syndrome is associated with metabolic syndrome
    Research
    Written by Maloney EM, Boneva RS, Lin JM, Reeves WC.   
    Monday, 25 January 2010 18:47

    A research project pointing out the association of Chronic Fatigue Syndrome with Metabolic Syndrome has just been published. Although this particular research was conducted including patients chosen based on the Emperic Criteria (Reeves, 2005), there could be a possibility Metabolic Syndrome is a specific illness that would require investigation if your labwork shows the individual markers for this illness. Please consult your health care practitioner for more information.

    The conclusion of the study was that "CFS was associated with metabolic syndrome, which further exacerbated fatigue." At best some ME/CFS patients may also suffer from Metabolic Syndrome, an issue that can be addressed and might provide some relief and long term protection.

    Read Abstract
     
    New Zealand - Otago school of medical sciences - Research
    XMRV Research
    Thursday, 21 January 2010 21:35

    Professor_Warren_Tate



    Chronic Fatigue Syndrome research project:

    XMRV as a potential cause of chronic fatigue syndrome - on the indicative research project list for 2010

    Supervisor: Professor Warren Tate

     

    Currently there is no diagnostic test for Chronic Fatigue Syndrome (CFS) although millions world wide are affected with the syndrome. A very recent Science paper (9.10.09) has linked CFS with a rodent retrovirus XMRV (rather like HIV-1) that can as well cause aggressive prostate cancer. About 70% of the affected group had evidence of the virus compared with only 4% of the control population. My lab has done developmental work on a rogue RNAse L cleavage fragment for a biomarker since it is claimed to be specific for CFS and indirectly to deplete affected cells of 50% of their ATP. We would like to examine the virus and its translational mechanisms as a potential drug target and establish the RNAse L fragment as a biomarker.

     
    THE PREVALENCE OF XMRV IN HEALTHY BLOOD DONORS IN JAPAN
    User Rating: / 2
    PoorBest 
    XMRV Research
    Thursday, 31 December 2009 15:20
    A Japanese research, cited in 2 other papers, regarding the transmission of XMRV concluded:

    The results of genomic PCR performing on the PBMCs indicate that XMRV
    is sustained in a few fractions of blood cells and can spread through
    blood even though the virus replication rate appears to be very low.
    Read more...
     
    Why myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) may kill you
    Research
    Wednesday, 30 December 2009 14:35
    Prof. M. Maes 

    Why myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) may kill you:

    Disorders in the inflammatory and oxidative and nitrosative stress (IO&NS) pathways may explain cardiovascular disorders in ME/CFS.

    There is evidence that disorders in inflammatory and oxidative and nitrosative (IO&NS) pathways and a lowered antioxidant status are important pathophysiological mechanisms underpinning myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS). 
     
    Read more...
     
    Please sign the petitions for biomedical research and XMRV testing
    Friday, 11 December 2009 14:55
    Help make a difference, sign the petitions and forward the links (copy paste the list below) to your network.

     

  • Petition for a European recognition of fibromyalgia disease - (international, 33261 signatures so far)


  •  
    Patient Questionnaires
    Thursday, 10 December 2009 19:07

    Please find below a list of patient questionnaires. The information you will provide will be directly send to the research group that is listed in the url and/or the questionnaire. Diagnose Support will not see the information.

    Some questionnaires accept international submissions. We are assuming the information will be distributed amongst scientists globally. Some questionnaires are only used to collect information, others are simultaneously a registration for participation in research programs and/or clinical trials. Please note that filling in the questionnaires does not obligate you to participate should you be selected. At any time you are allowed to withraw without explanation.

      

     
    Dr. Oz 3rd December 2009
    User Rating: / 2
    PoorBest 
    Video Library
    Written by X > Special Thanks to Dr. Donnica Moore & Gina   
    Thursday, 03 December 2009 18:42
    Dr.Oz - Xmrv (nederlandse Ondertiteling) Dr. Oz NL   Dr.Oz - Xmrv (Française) Dr. Oz FR   Dr.Oz - Xmrv (Spanish) Dr. Oz ES   Dr.Oz - Xmrv (English) Dr. Oz Eng.



     
    XMRV Treatment Discussion & Testing Overview
    Saturday, 28 November 2009 13:03

    Soon, if not already, theories as to which treatments against XMRV might be successful will arise. We will try to inform you about which treatments are discussed in the press, expert blogs and research papers. We strongly advice you NOT to proceed to start any treatment before more news regarding the causality/contributing factors is out and/or without consulting a knowledgeable physician.

     

     

     

    DIAGNOSE SUPPORT - A Global Initiative to Advocate for Objective Diagnostics,Biomedical Research and Effective Treatments for patients with Neuro-Immune / Neuro-Endocrine-Immune disorders



    Diagnose Support



     

    Diagnose Support is on Skype, find us through our username: diagnosesupport

    Join our Facebook group Diagnose Support
    Our Dutch Facebook group XMRV 4 België en Nederland

    Check out our TWEETS on Twitter
     
    Send in items to be published on our website and forward volunteers for the video and/or
    translation project via email
    View our video's in the Video Library or on Youtube