1. Alan Marcy on August 24, 2010 10:30 AM writes...

I have CFS, been in bed for thirteen years. It sucks. No one knows much more than that, yet. Some may not want to know. The rest want to, but don't, yet.

Clarity is relative. So is disease. I can imagine a world where I am the healthiest man alive. But, I cannot imagine this disease is good. Just another bug in the system. There are others. I am not special, just sick.

2. ART on August 24, 2010 1:23 PM writes...

It's several retroviruses, all gammerretroviruses.

3. Someone with Asperger´s & CFS/ME on August 24, 2010 4:30 PM writes...

First Positive Replication of the October 8, 2009 Science Paper,

published online

on August 23, 2010

in

The Proceedings of the National Academy of Sciences of the United States of America,

usually referred to as

PNAS,

the official journal of the United States National Academy of Sciences,

with researchers from

the National Institutes of Health (NIH),

the Food and Drug Administration (FDA)

and

Harvard Medical School (HMS),

directly and/or indirectly,

implicitly and/or explicitly,

confirming that

chronic fatigue syndrome /myalgic encephalomyelitis (CFS/ME)

is associated with

a retrovirus class,

a category known as

MLV-related viruses,

or

MuLV-related viruses,

henceforth also known as :

Human Gamma Retroviruses that include XMRV and other human MLV-related viruses.

4. Kathryn Stephens on August 24, 2010 4:48 PM writes...

It may not be decided, but thank all the angels in the Universe that have died from this disease, that (finally!) real research is now being done.

Maybe it's the 7% of the general population that may be infected that (finally, again!) got the real attention; not the suffering patients, who have been belittled, dismissed as psycho, maltreated, mistreated, and denied their civil right to appropriate testing and treatment.

Public: Be Aware! Beware...

5. Someone with Asperger´s & CFS/ME on August 24, 2010 5:03 PM writes...

GOOGLE TRANSLATION - ARTICLE

New virus found in patients with chronic fatigue syndrome

Researchers at the Free University of Brussels (VUB) and the Belgian biotech company Red Laboratories have succeeded in distinguishing a new retrovirus in patients with chronic fatigue syndrome (CFS/ME patients). Thus they confirm recent U.S. findings on this issue.

All Europe

U.S. researchers at the University of Nevada in October 2009 found that the majority of CFS/ME patients are carriers of a new retrovirus XMRV. These findings have also been confirmed by the Harvard Medical School and the National Institutes of Health (NIH). New to the study led by Professor De Meirleir VUB is that the virus was found in CFS/ME patients from across Europe. Moreover, the immunological signature, a kind of footprint in the immune system, similar to that of symptomatic HIV patients.

Therapies

"It seems that for the roughly 17 million CFS/ME patients world-wide end to a long ordeal surrounding the recognition of their illness. The development of targeted therapies is already underway, both in Belgium and abroad" says De Meirleir. (Belga / ep)

6. Someone with Asperger´s & CFS/ME on August 25, 2010 4:38 AM writes...

Possible Future CFS/ME Name Change : GRD — gamma retroviral disease ?

Dr. Kenny De Meirleir, MD, PhD, CFS/ME Researcher and Professor at the Brussels Free University (VUB), seems to be favouring such a name change for Chronic Fatigue Syndrome, a.k.a. Myalgic Encephalomyelitis.

Kenny De Meirleir and his team also seem to have been very busy lately doing CFS/ME research in the whole of Europe, and they are understood to have been testing blood samples from CFS/ME patients from all across Europe. He and his team have been quoted in at least three different Belgian newspapers and/or magazines as being able to confirm the findings published in the PNAS paper on Monday August 23, 2010. His own findings will be made official at the 1st International Workshop on XMRV, a workshop to be held on September 7-8, 2010 at the National Institutes of Health (NIH) in Bethesda, Maryland, USA.

7. Someone with Asperger´s & CFS/ME on August 25, 2010 4:40 AM writes...

Possible Future CFS/ME Name Change : GRD — gamma retroviral disease ?

8. Someone with Asperger´s & CFS/ME on August 25, 2010 6:49 AM writes...

===========================================

NIH/FDA/HMS Study Confirms:

HGR, including XMRV, Tied to CFS/ME

===========================================

NIH/FDA/HMS Study Confirms:

Human Gamma Retroviruses (HGR),

including XMRV,

Tied to Chronic Fatigue Syndrome,

a.k.a.

Myalgic Encephalomyelitis,

or

CFS/ME,

henceforth possibly a.k.a.

GRD,

or

Gamma Retroviral Disease

9. Someone with Asperger´s & CFS/ME on August 25, 2010 8:27 AM writes...

ALTERNATIVELY, THE FOLLOWING IS ALSO POSSIBLE !

As there will be more than just one retrovirus, and as there will be more than just one disease !

=================================================
Singular
=================================================

HGRV -> Human GammaRetroVirus
HGRD -> Human GammaRetroviral Disease

=================================================

=================================================
Plural
=================================================

HGRVs -> Human GammaRetroViruses
HGRDs -> Human GammaRetroviral Diseases

=================================================

10. Someone with Asperger´s & CFS/ME on August 25, 2010 9:34 AM writes...

[1] HGRVs AS THE STILL-THEORETICAL CAUSE

HGRVs -> Human GammaRetroViruses :

XMRV is not the one and only example of an HGRV

[2] HGRDs AS THE STILL-THEORETICAL CONSEQUENCE

HGRDs -> Human GammaRetroviral Diseases :

CFS/ME is not the one and only example of an HGRD

Here below you can find at least 9 other examples of possible HGRDs next to CFS/ME :

- Chronic Fatigue Syndrome / Myalgic Encephalomyelitis (CFS/ME) (almost 90% may be XMRV-positive)

- Gulf War Syndrome (GWS), Gulf War Illness (GWI)

- Lyme Disease

- Multiple Chemical Sensitivity (MCS)

- Fibromyalgia, Fibro (FM/FMS) (60% may be XMRV-positive)

- Autism Spectrum Disorders (including Asperger Syndrome) (40% may be XMRV-positive)

- Attention-Deficit/Hyperactivity Disorder (ADHD/ADD)

- prostate cancer (up to 25% may be XMRV-positive)

- cancer

- AIDS (When will the first positive study come in showing that an important number of AIDS patients are not only HIV-positive, but also XMRV-positive ?)

11. oerganix on August 25, 2010 11:35 AM writes...

That some real research be done into the viral cause(s) is all patients and those who love them have ever wanted. We have known for nearly 30 years that the cause was probably a virus or viruses...over a thousand research papers pointed in that direction.

But apparently it took the threat of prostate cancer and contamination of the blood supply to get FDA/NIH interested. As anyone with knowledge of the political history of CDC knows, they have been trying to disappear this illness since they declared it "hysteria" back in 1984 despite the brain scans that showed punctate lesions. After the Congressional hearing in the 90's that put an end to CDCs diversion of CFS research money to what they called "more important diseases, like measles", they switched to "researching" psychiatric causes, although CFS research is under Infectious and Zoonotic Diseases. Why does a virologist do psychiatric studies and deny funding for further studies of the biomedical cause(s) of this illness?

Patients and those who care about them are just overjoyed that at long last real research into this disease is actually being done without the hidden agenda of trying to prove it to be "all in their heads".

If you look at illustration A in the Commentary, you will see that those writers consider XMRV to be one of several MLVs AND Dr Alter was careful to say more than once that his work supports the WPIs findings of XMRV in association with CFS. That's the take away message, whether you like it or not. Of course, we always knew more research would be needed. We've been saying that for decades, while CDC has been saying "Move along folds, nothing to see here" whenever research has shown a viral association with CFS. We can only hope that this malpractice is at an end.

12. Someone with Asperger´s & CFS/ME on August 25, 2010 1:58 PM writes...

CFS/ME Name-Change Proposal
CFS/ME Name-Change Proposal
CFS/ME Name-Change Proposal

HGME
HGME
HGME

Human Gammaretroviral Myalgic Encephalomyelitis
Human Gammaretroviral Myalgic Encephalomyelitis
Human Gammaretroviral Myalgic Encephalomyelitis

If you would like a name change for CFS/ME, then I would like to propose the new name HGME (Human Gammaretroviral Myalgic Encephalomyelitis). We just drop CFS, and we keep ME, and we only add Human Gammaretroviral to it). I think this is the only possible decent solution that we've got. And the sound of it is not too bad either, I would think.

13. Kathleen weber on August 26, 2010 10:59 AM writes...

A 1930's LA Doctor [Dr. Joseph Griggs] flew North to autopsy his wife. He found bacteria that matched her dental bacteria in her brain and also Toxi-plasmosis.

It took a while for genetisists to give up on Mendel's Paradigm we learned in school. It isn't relevant to the complexity of modern life with its huge number of toxins, household and industrial chemicals, Dioxin and other powerful mutagens. Screwed up Mitochondria. What we most need is to be gentle and compassionate, to avoid medical cruelty and insults. To enjoy the moments, even if few, of comedy, and Pandora's beauty and hope.