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CFSAC 2010 video's May 10th are now being uploaded
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Sunday, 09 May 2010 12:11

CFSAC meeting day 1 - Oct.28, 2009  CFSAC 2009 day 1       CFSAC meeting day 2 - Oct.29, 2009  CFSAC 2009 day 2       CFSAC - May 10, 2010  CFSAC 2010 May 10


In a joined effort of members of The Barborka Family,  CFSKnowledgeCenter, CFSUntied, Diagnose Support Teejkay and P.A.N.D.O.R.A., Inc., 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 and 2 are now uploaded. Video's of May 10th 2010 ar now being uploaded. Please click the image to view.


 
Nieuwe trend: geen bloeddonatie na ME/CVS
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Nederlands / Dutch
Written by Ortho   
Thursday, 22 April 2010 15:40
Persbericht

Nieuwe trend: geen bloeddonatie na ME/CVS

Gendringen – 22 april 2010. Steeds meer landen sluiten mensen die ME/CVS hebben gehad uit van bloeddonatie. Aanleiding is het retrovirus XMRV, dat is gevonden bij deze patiëntengroep. Eerder deze maand werd bekend dat in
Canada ex-patiënten geen bloed meer mogen doneren. Persbureau NZPA meldde gisteren dat Nieuw-Zeeland dit voorbeeld gaat volgen. Ook Australië overweegt herziening van haar richtlijnen voor bloeddonatie.

Nederland heeft nog geen extra maatregelen genomen na de Science- publicatie van oktober 2009. Daarin werd voor het eerst melding gemaakt van XMRV bij ME/CVS. ‘Op dit moment is er onvoldoende wetenschappelijke basis om het beleid te veranderen’, zei een woordvoerder van Stichting Sanquin Bloedvoorziening hierover in Ortho. De medische vragenlijst, waarin ME/CVS niet wordt genoemd als uitsluitingsgrond voor donatie, is evenmin aangepast.

Tegelijk wijst de woordvoerder erop dat potentiële donoren altijd eerst een gesprek voeren met een arts. ‘Die nformeert naar de gezondheid. En mensen die ziek zijn, kunnen geen bloed geven.’

Dat Amerikaanse onderzoekers het retrovirus XMRV hebben gevonden in het bloed van Nederlandse ME/CVS-patiënten, heeft niets veranderd aan de opstelling van Sanquin. Zo meldde De Gelderlander afgelopen dinsdag. Onderzoekers van het UMC St. Radboud verzwegen deze Amerikaanse bevindingen in een wetenschappelijke publicatie, zoals Ortho vorige week onthulde. In dezelfde bloedmonsters hadden de Nijmeegse onderzoekers geen spoor aangetroffen van XMRV.

Patiënten, professionals en de media kunnen vanaf vandaag het laatste nieuws over ME/CVS, XMRV (en bloedtransfusie) volgen op www.voedingenpsyche.nl. Dit is de website van het Congres Voeding & Psyche, dat dit jaar volledig in het teken zal staan van ME/CVS.

________________________________________

Ortho – Orthomoleculair Magazine – www.ortho.nl/orthomoleculair-magazine.
Tweemaandelijks wetenschappelijk magazine over voeding & supplementen.
Hoofdredactie: dr. Gert E. Schuitemaker; 0315-695211; wlmailhtml:{712D3ABE-2964-412A-BD54-C37764EBEE88}mid:/00000110/!x-usc:mailto: This e-mail address is being protected from spambots. You need JavaScript enabled to view it .

 
NL - Uitstekend beschreven artikel over XMRV door Ortho
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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
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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...
 
SE - Pernilla Zethraeus om sin svåra sjukdom
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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...
 
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
 
THE PREVALENCE OF XMRV IN HEALTHY BLOOD DONORS IN JAPAN
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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
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    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
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    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



     

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