Thursday, October 15, 2009

XMRV & ME/CFS: GP in Australia compares news with the discovery of Hepatitis B virus

According to the below copied blog post by ME/CFS sufferer Rachel in Australia, a treatment that exists for retrovirus XMRV has been proved already, all they need to do is to find out if the medicine works for ME/CFS. Excerpt:
 XMRV virus is in 67 % of ME/CFS sufferers and only 3.7% in healthy people. (Further research at Whittemore Peterson Institute showed the figure is actually 95%. I’m assuming that they looked at antibody that shows evidence of infection in the past.) Unlike HPV, it hardly found in healthy people. He compared the news with the discovery of Hepatitis B virus. 
Naturally, I'd be interested in reading what Dr Crippen at NHS Blog has to say on this.   From Blue Coffee Mug blog [13 October 2009 - XMRV & ME/CFS]] by Rachel M:
The news about cancer causing retrovirus called XMRV and the discovery of its association with ME/CFS are hitting the internet like Tsunami.
I was sceptical. The news was only two days young, and I didn’t know how to take it. However, Dr TL was very excited. He believed it was the first break through in ME/CFS history. I heard about viruses and bacterial discoveries with ME/CFS before… They seemed remarkable findings, but medical community didn’t really showed their interests in them.
He explained this virus is in 67 % of ME/CFS sufferers and only 3.7% in healthy people. (Further research at Whittemore Peterson Institute showed the figure is actually 95%. I’m assuming that they looked at antibody that shows evidence of infection in the past.) Unlike HPV, it hardly found in healthy people. He compared the news with the discovery of Hepatitis B virus. He believes researchers will compete against each other to publish their papers before others. According to him, the finding is the kind that excites researchers and accelerates the production of ME/CFS treatment.
It was strange to see non ME/CFS sufferer got so excited about the news. At the same time, it was really heart warming to witness. I’m sure he was surprised to see I was not so excited.
He mentioned that there would be treatment trial soon, so we have to make sure that I get in the trial. He asked if I read newspapers as that’s where they advertise for research participants. I only read online newspapers as paper copy is too expensive for me. But I assured him that I will know when they are looking for trial participants. I will get newsletters/updates from ME/CFS groups and people will blog about it. Organisation would also contact online ME/CFS support groups to recruit the trial candidates. He realised how I’m depending on internet for these information. His mind was much advanced than I was and it was all excitements and hope… My mind was still manifested with stubborn scepticism and just cannot get to where he is.
He was thinking about organising transportation for me to participate. He said they might send the kit by mail. I raised the concern that they must check me up to see if I fit in their criteria. He believes I will be accepted to the trial as I’m one of debilitating cases, and researchers want to prove they cure people with severe ME/CFS. The trial would be done through Princess Alexandra (PA) Hospital, if they do it in Qld. That’s another scepticism because general attitude of Qld Health about ME/CFS is that it doesn’t exist. If it’s done through PA, he will organise ambulance transport for me. If the trial would be done in Sydney…, he hesitated a little and said he cannot drive me there. Ambulance would not take me to Sydney.
At the back of my mind, I was remembering an article saying the medicine to treat the XMRV virus could be very toxic for us. This article was using HIV and its treatment as an example.
He explained that there are different types of viruses. That’s where I get confused. HIV and XMRV are different. Accordingly medications to treat the condition are different. HIV treatment was really dangerous when it first came out, but they are much safer now. And HIV sufferers are now having normal life. “Having normal life” was fascinating to hear, indeed.
He also explained that the medicine that would treat XMRV is already here and its safety has been proved already. All they need to do is to find out if the medicine works for ME/CFS. His explanation made sense.
He is looking at the trial as an opportunity for me to have free treatment before everyone else. At the moment, the medicine is too expensive for me to try. It is silly not to take the opportunity.
I sensed he was frustrated by my negativity. I explained I was not being negative but I’m aware of reality. He said I don’t know the reality of the medication yet. I had to agree with that one. Probably, worrying about toxicity of treatment might sound like a cancer patient refusing chemotherapy.
He then said that I could be an accountant for UNESCO. He said it for my hope and as a compliment. My scepticism was stubborn. I was mumbling how it is impossible for me to be responsible and reliable… For a moment, I forgot he was talking about when I get better.
Then, he enthusiastically told me that he has a faith in me. His whole body was facing at me. He said it again that he has a faith in me. There was dark cloud in my mind and I still didn’t know what to think.
During the talk, we mentioned about secondary conditions with ME/CFS, such as depression. Muscle waste is also secondary condition, therefore it is important for me to keep up with exercises. Although I’m in debilitating condition, I’m not too bad as I can still live independently. Some people are so bad that they need carers. I’m grateful that I can be independent and have my pride and peace. While he was explaining, he became a little hesitant. He may have realised that I don’t have quality in my life… I don’t socialise and I cannot go out as I wish. I get things done between lots of rest, so I don’t have much time left for fun… I’m still grateful that I don’t have to live in nursing home.
I realised I was scared. I didn’t know exactly why and what. One thing I knew was that I was scared of getting disappointed again. He said he wouldn’t mention about XMRV any more, then. He said again that he was excited. It was not my intention to spoil his excitement. It was really nice to see a doctor who got so excited about the ME/CFS news.
I need a bit more time to absorb and digest what this news means to me. Since a medical practitioner is very excited about it, this must be a really good news for me…
As he said, doctors now have to accept that ME/CFS is not imagination, but it is real.
- - -

From BBC News, Friday, 9 October 2009 10:11 UK:
ME virus discovery raises hopes
US scientists say they have made a potential breakthrough in understanding what causes the condition known as chronic fatigue syndrome (CFS) or ME.

Their research in the journal, Science, suggests that a single retrovirus known as XMRV does play a role in ME.

They found the virus in 67% of ME patients compared to under 4% of the general population.

But experts cautioned that the study did not conclusively prove a link between XMRV and ME.

ME is a debilitating condition that affects an estimated 17 million people worldwide.

The discovery raises hopes of new treatments for the condition.

Retroviruses are known to cause neurological symptoms, cancer and immunological deficiencies.

Contributing factor

The Whittemore Peterson Institute in Nevada, said they had extracted the DNA from XMRV in the blood of 68 out of 101 patients with the condition.

Cell culture experiments revealed that the patient-derived XRMV was infectious.

The researchers said these findings raise the possibility that XMRV may be a contributing factor to ME.

XMRV is also known to have a role in some prostate cancers.

Dr Judy Mikovits, who led the study, said: "It's a blood borne pathogen that we contract through body fluids and blood transmission.

"The symptoms of ME - chronic fatigue, immune deficiencies, chronic infections - are what we see with retroviruses.

"This discovery could be a major step in the discovery of vital treatment options for millions of patients."

Tony Britton, of the ME Association said: "This is fascinating work - but it doesn't conclusively prove a link between the XMRV virus and chronic fatigue syndrome or ME.

"Many people with ME/CFS say their illness started after a viral infection, and a number of enteroviruses and herpes viruses have also been implicated in the past.

"ME/CFS is an immensely complex illness, with many possible causes and there are up to 240,000 sufferers in the UK desperate to get better."

Invest in ME are enormously encouraged by the current research which shows a potential new cause for this devastating neurological illness. More importantly it promises a diagnostic test is within reach.

A spokesman for Invest in ME said: "This is a huge step achieved in such a short time and will bring hope to all people with ME and their families.

"We now call on the UK government, the Chief Medical Officer and the Medical Research Council to support our view that only a research strategy based on adequately funded and coordinated biomedical research into ME will succeed in creating treatments and eventually a cure for this devastating neurological illness. "

Dr Richard Grunewald, a consultant neurologist at the Sheffield Teaching Hospitals NHS Foundation Trust who is also on the panel that gives advice to NICE on CFS, said he had reservations about the research.

He said: "The idea that all CFS can be caused by a single virus doesn't sound plausible to most people who work in the field.
"A lot of the symptoms of CFS are not those of a viral infection."

Sir Peter Spencer, chief executive of Action for ME, said: "It is still early days so we are trying not to get too excited but this news is bound to raise high hopes among a large patient group that has been ignored for far too long.
Myalgic encephalomyelitis
24 Oct 08 | Health

Causes chronic fatigue and muscle pain
Impairs immune system
Does not improve with sleep
More women than men suffer from it
Condition controversial in 1980's when some medical authorities doubted whether it was a genuine physical illness



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