Sunday, November 8, 2009

XMRV Research - A Landmark for ME

Some years ago those suffering from diabetes and Multiple Sclerosis (MS) were denigrated and trivialised by the same type of establishment corruption which has been directed toward ME sufferers. Both diabetes and MS were illnesses which were regarded as psychiatric until insulin and MRI were discovered. The ability of an MRI scan to show the pathology of MS destroyed the psychiatrists who wished to portray that illness as "women's hysteria".

The discovery by the Whittemore-Peterson, the National Cancer Institute and the Cleveland Clinic researchers of xenotropic murine leukemia virus-related virus (XMRV) in ME patients may well be the equivalent defining moment for ME.

As our letter to the CMO in 2006 stated - "although there is much to learn about the details of these illnesses our present understanding and treatments have emerged from careful research studies that have exposed the inadequacies of the psychiatric models".

The WPI has tested more samples since submitting the first paper and our EMEA colleagues report of the interest around Europe in studying this. One Swedish clinical virologist has described this research as important as the discovery of HIV and already there are plans for studying this in Swedish ME patients.

The news of the XMRV research is really encouraging in bringing ME into the main stream media coverage and getting new researchers interested in the field, and wanting to reproduce the results. This is exactly what ME needs - to be perceived and treated as a mainstream organic illness needing funding to provide correct treatments.

Although the discovery is quite serious, as it is a retrovirus and therefore has its own consequences, we feel it is better in the long term for patients to know what is wrong with them rather than continually being left in limbo due to ignorance and outdated information.

Researchers will now have to study the XMRV virus, how it behaves etc. and it is necessary for governments and healthcare organisations to treat ME with the urgency it requires. We now have another biomarker which, of course, needs to be verified by other researchers first before we can be absolutely certain of its importance. There are bound to be people in support groups who have different reasons for their illness and we need biomarkers to make sure a diagnosis given is a correct one.

The WPI website states:

"We have detected the retroviral infection XMRV is greater than 95% of the more than 200 ME/CFS, Fibromylagia, Atypical MS patients tested. The current working hypothesis is that XMRV infection of B, T, NK and other cells of the innate immune response causes the chronic inflammation and immune deficiency resulting in an inability to mount an effective immune response to opportunistic infections."

Interestingly, in a discussion after this year’s IiME Pre-Conference Dinner presentation by Hillary Johnson, Professor Harald Nyland mentioned how some diseases need two viruses for a disease to develop. He also mentioned Burkitt’s lymphoma as an example where the presence of two viruses, EBV and malaria is needed.

The elapsed time taken by Science magazine in publishing the research findings may be seen as proof of the excellence of the work being performed by the team of researchers at the WPI, the NCI and the Cleveland Clinic.

There have been comments about Lombardi et al. not giving demographic details of the patients and controls used in the recently published XMRV study. Scientific journals have all their own rules governing the format in which they want research articles written. This XMRV study has been written according to the rules given by the Science magazine and all other interested researchers can request more detailed information on methodology etc. if they wish.

For Science to publish an article on ME is a landmark itself and has a huge positive effect on all biomedical ME research. Having the National Cancer Institute and the Cleveland Clinic working with the WPI and publishing these results, in a journal of the calibre of Science, is as good as it gets. This work should open up more funding opportunities for other existing biomedical ME researchers.

If the WPI and subsequent research does not conclusively prove that XMRV is the cause of ME it will at least have interested more researchers to participate in biomedical research in this area. And will have broken the mould.

We should all take this opportunity to make a real push for funding for more biomedical studies based on homogenous well defined patient groups. IiME will continue to campaign for biomedical research, and apply for grants for biomedical research, in the sure knowledge that good science eventually will win through.

Our view on the XMRV research is echoed by the words of Professor Martin Pall, a speaker at our 2007 conference -

"There have been comments in the media to the effect that this finally shows that CFS/ME is physiological, not psychological. This is true, but this should have been obviously true anyway, at least six or seven years ago. Nevertheless the media coverage of CFS/ME obtained by Mikovits and her colleagues must be viewed as a true gift to those interested in extending public knowledge of this disease."

The discovery of XMRV in ME patients has changed the ME/CFS landscape for good.

We have more detail on the XMRV research - click here .

Our statement on the research was published here .


Anonymous said...

Will the charity Action for ME (whose only members in law are the executive, everyone else is merely a subscriber to their magazine)now stop funding only psychological research into ME that uses the discredited Oxford criteria to select patients?

The PACE trial (part funded by AfME) - why it is one of the worst scandals in medical history:

Anonymous said...

Are you really, really tired? It's not all in your head. . .
Often dismissed as hypochondriacs, ME sufferers have been vindicated by science, says Susan Daly

..."Basically what the uncovering of this new virus has done is to further demand a proper diagnostic approach," says Declan Carroll.

The best way forward for ME sufferers here -- at least to diagnose them -- is for doctors to apply Canadian guidelines which set out a number of fixed criteria for diagnosing the illness.

"What happens fairly regularly," says Declan Carroll, "is doctors are busy, they can't see anything untoward in regular blood tests, and they pass the patient onto a consultant that deals with the prevalent symptom, say a person with muscle pain gets sent to a rheumatologist.

"Otherwise they take the view: you have muscle pain, you're tired all the time, it may be burnout, stress, so go exercise and I'll give you an antidepressant. And that is not really satisfactory."


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