ME -Why XMRV-research is importent for us all

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European Society for ME (ESME):

Why XMRV-research

is importent for us all

" Excerpts from ESME's openings speech

at the Oslo XMRV-seminar, (28/11/10)

where Dr. Judy Mikovits (WPI) and Dr.

Mette sgaard (Lillestrom Helseklinikk,

Center for Treatment of Chronic Diseases)

gave the latest updates in research.

During the last 2 decades, nothing had really

happened in the field of ME/CFS. There was not much

serious research, no real search for cures, and the

disease received no credibility whatsoever despite

the immense suffering of patients and skyrocketing

prevalence numbers. The future for ME/CFS patients

looked bleak….

And then came October 2009 with the publication

of the Science paper where Dr. Judy Mikovits and

colleagues showed a correlation between a recently

discovered retrovirus, XMRV, and ME/CFS.

This study was a collaboration of 3 major American

institutions: the National Cancer Institute, the

Cleveland Clinic, and the Whittemore

Institute.

This was the first time that major institutions had

collaborated on ME/CFS research.

This research was confirmed in August 2010

when another important study was published in

the Proceedings of the National Academy of

Sciences, PNAS.

This study was done by the highly-respected Dr.

Harvey Alter and colleagues from the National

Institutes of Health in the US.

Since October 2009, the retroviral story has

become a big international issue and a matter of

great discussion in the scientific community.

Conflicting results and conflicts of interest have

emerged and several negative studies have been the

subject of great controversy.

The current XMRV-story is very similar to the early

days of HIV/AIDS-research – a disease which also

involves a retrovirus.

After the discovery of HIV, there were many

conflicting results and the field was messed up by

bad science, politics and conflicts of interest.

Many top scientists involved in HIV-research are

clear regarding the new XMRV-story:

" We have to make sure the HIV-story is not

repeated. "

That is why it is so important that the ME/CFS field

has top-notch research that cannot be disputed.

Until now, some of ME/CFS research has not been

done in a reliable systematic way so the results have

been inconsistent.

The XMRV-story has shown us that in order for

ME/CFS to be taken seriously, every step in the

process needs to be reliable and professional – from

the way the patient group is defined, to how

samples are gathered and processed, to the way

they are transported and tested.

It is also very important that scientists and

specialists work with top-quality, certified labs.

Only when all of these things are in place will the

results be accepted by respected scientific journals

and the disbelievers will be shut down.

The research from Drs. Alter, Mikovits and

colleagues is so important because they

did all of these things right and they set

the standard for quality research in the

ME/CFS field.

Since the Science and PNAS publication

we have for the first time:

* Serious research by dedicated top-level

scientists. As Louis Pasteur said back in the 19th

century: " In the fields of observation, chance

favors only the prepared mind. "

* Scientists and experts willing to collaborate

internationally and share information.

The recent breakthroughs in Alzheimer's disease

show how collaborative efforts and sharing

information can make the difference in

researching complicated diseases.

The Alzheimer's researchers put their scientific

egos and personal agendas aside and shared

information.

The result is biomarkers for Alzheimer's and over 100

drugs being tested for treatment. This can happen in

ME/CFS research too.

* Scientists and experts from outside the

ME/CFS field who are bringing fresh ideas to the

research.

In the past decades, researchers avoided ME/CFS as

it was thought to be career-damaging, but the

interest of new researchers shows that there is a

change in the way ME/CFS is viewed.

* The attention of governments, blood banks,

medical organizations and multinational

organizations like the WHO, CDC, NIH and FDA.

* Extensive international media attention

focused on ME/CFS research

* Strong evidence that ME/CFS is not a

psychosomatic disorder.

It is clear that Drs Alter, Mikovits and

colleagues gave the patients and the field

new HOPE!

So why do we need further research? Isn't it

obvious that the retrovirus is important in ME/CFS?

Can't we just jump from these few positive studies

and focus all our energy and money on treatment?

Unfortunately that's not how it works. In the

meetings ESME has had with government officials,

people in the medical community, the scientific world

and with drug company representatives, it is very

clear to us that they will only invest money and

change policy if more solid research studies are

done.

But once the correlation between XMRV and ME/CFS

is undoubtedly proven, then they will, without doubt,

get involved. Because then it will be 100% clear that

this is an important health issue which can no longer

be ignored.

In summary, it is important to support

research in your country because solid

research:

· Will convince your government to invest money in

research and to change policy about testing and

treatment. These are often very expensive and as a

result too many patients are excluded

· Will help ME/CFS gain credibility in the medical

environment and help get more doctors and

specialists into the field.

· Will encourage pharmaceutical companies to

sponsor much-needed clinical trials for drugs.

Clinical trials are important in order to get a clear

picture of exactly which testing/treatment works and

which does not.

· Will help ME/CFS gain credibility in the

international scientific community and attract more

top scientists and reliable labs.

Remember, it is only when we have really good

scientific papers printed in the top scientific journals,

that the credibility of ME/CFS will continue to grow.

And only then will our politicians, doctors and

pharmaceutical companies get involved.

So in the meantime, what can the patient

community do for ME/CFS research?

They can help by volunteering time, by helping to

find sponsors and by donating money to support

serious top-notch research. And every donation

helps.

Barack Obama, the first black president of the US,

received a lot of his campaign money from small

donations made on the internet.

He used these small donations to change American

politics and we can use this same tactic to change

ME/CFS politics – by supporting serious research.

Most of the scientists that ESME has spoken with are

really focused on helping the patients and not on

their egos, so every Euro donated to research will

help all of you.

ESME - the European Society for ME – offers

prominent scientists in the field a professional

framework to enhance scientific research.

At this moment ESME is discretely working on a few

international collaborative research projects with

some of the world's leading experts.

We are also organizing a few discrete round table

meetings where these top minds – including

European and American specialists – can brainstorm.

The focus of these projects is prevalence, causes,

missing links and treatment.