Wednesday, 23 June 2010


There will be many patients suffering with ME/CFS celebrating today after the release of information confirming FDA and NIH have confirmed the findings of the Lombardi group.

Already some patients with Lyme Disease are finding they also have XMRV so it will not just be the ME/CFS patients but also Lyme Disease patients following these developments with great interest.

So many of my symptoms of Arthritis, muscle weakness, swallowing difficulties and Peripheral Neuropathies are found amongst patients with Lyme disease but also with ME/CFS diagnosis. I was diagnosed with Fibromyalgia, ME/CFS, Arthritis, Muscle weakness, Musculo skeletal disease, Polymyalgia Rheumatica as my symptoms deteriorated over several years, until finally quite by chance my symptoms improved on a chance course of antibiotics and led my GP to suspect Lyme Disease. I was lucky and have regained my health after many months of antibiotics, others are not so lucky as myself.

'We ( FDA& NIH )have independently confirmed the Lombardi group findings'

Dr. Alter's presentation at the 2010 IPFA/PEI workshop "Surveillance and screening of Blood Borne Pathogens" (A PDF of his presentation):

Page 10 of 30 pasted below

Comments on the Agent Du Jour -XMRV

•The data in the Lombardi, et al Science manuscript are
extremely strong and likely true, despite the controversy.
Not only have they detected gag and envelope XMRV
sequences, but they have infected prostate cell lines and
recovered gamma retrovirus particles and have transmitted
XMRV to rhesus macaques by the IV route and demonstrated
•Although blood transmission to humans has not been
proved, it is probable
•The association with CFS is very strong, but causality not
•XMRV and related MLVs are in the donor supply with an early
prevalence estimate of 3%‐7%.
•We (FDA & NIH) have independently confirmed the Lombardi
group findings

The above was discussed on Osler's web by Hilary Johnson details found here

and the original press release here

Original Press Release from the Netherlands: FDA and NIH confirm 'XMRV findings'

Gendringen, NL (MMD Newswire) June 22, 2010 -- The FDA and the NIH have independently confirmed the XMRV findings as published in Science, October last. This confirmation was issued by Dr. Harvey Alter of the NIH during a closed workshop on blood transfusion held on May 26-27 in Zagreb. Two journalists from the Dutch magazine for health professionals, ORTHO, who have been working on XMRV stories for several months, were able to obtain a copy of the Alter lecture.
In the October 8, 2009 issue of Science Express, the Lombardi-Mikovits group at the Whittemore Peterson Institute (WPI), the Cleveland Clinic and the National Cancer Institute (NCI) reported that 67% of 101 chronic fatigue syndrome (CFS) patients tested positive for infection with xenotropic murine retrovirus (XMRV). Only 3.7% of 218 healthy subjects tested were positive for this gammaretrovirus. Since that time, a number of research groups have proved unable to independently confirm these findings.
On Friday last, the AABB released an Association Bulletin recommending that its member blood collectors actively discourage potential donors who have been diagnosed with CFS from donating blood or blood components. This interim measure was proposed by the AABB Interorganizational Task Force on XMRV. This Task Force includes representatives from several government agencies, including the Center for Disease Control and Prevention (CDC), the Food and Drug Administration (FDA) and the National Institutes of Health (NIH).
The fact that the measure was introduced suggests the presence of information not yet published. The ORTHO journalists were able to obtain a pdf document of the lecture given by Harvey Alter at the IPFA/PEI 17th Workshop on 'Surveillance and screening of Blood Borne Pathogens' in Zagreb. The International Plasma Fractionation Association (IPFA) represents the not-for-profit organizations around the world involved in plasma fractionation. The IPFA is based in Amsterdam, the Netherlands.
The highly-experienced Dr. Harvey Alter is Clinical Studies Chief at the Infectious Diseases and Immunogenetics Section of the Department of Transfusion Medicine at the NIH Clinical Center in Bethesda. "The data in the Lombardi, et al Science manuscript are extremely strong and likely true, despite the controversy", was one comment on the XMRV findings reported by Alter in Zagreb. "Although blood transmission to humans has not been proved, it is probable. The association with CFS is very strong, but causality not proved. XMRV and related MLVs are in the donor supply with an early prevalence estimate of 3%‐7%. We (FDA & NIH) have independently confirmed the Lombardi group findings."
ORTHO contacted Dr. Harvey Alter today for a reaction. He did not want to comment, but confirmed that a paper is soon to be published.ORTHO is a Dutch magazine for health professionals focusing on nutrition and dietary supplements. ORTHO has been publishing reports on CFS since 1988. Editor-in-chief: Gert E. Schuitemaker (PhD). Tel: + 31 (0) 315 695211 / + 49 (0) 170 808 9484. E-mail:


  1. I'm really excited by this news, too. My fingers are crossed! Can't wait to see the actual study.

  2. Laurel Thank you for your comment as you are someone that has had both a Lyme Disease diagnosis and XMRV I am sure you like me and many others follow the developments in both these illnesses.

    How lucky we are to have so many pioneering doctors in both these fields pushing the envelope when mainstream medicine has it's head well and truely in the sand.

    I believe we are at the tipping point in both ME/CFS and also Lyme Disease. At the very least there is no putting Jack back in the Box now.

  3. XMRV was found to be a lab contaminant read Hilary Joghnson's article