By Alice Neville
Kiwi researchers have welcomed a scientific breakthrough that could hold the key to a debilitating condition affecting 20,000 New Zealanders.
A retrovirus discovered by US experts may reveal the cause of myalgic encephalopathy (ME), also known as chronic fatigue syndrome.
And Auckland GP Dr Ros Vallings will be among the first to learn how the findings can help the estimated 17 million sufferers around the world, thanks to the Cathay Pacific/Herald on Sunday High Flyers Awards. The Associated New Zealand Myalgic Encephalopathy Society will use its travel award to send Vallings to a high-powered conference in London next May.
The fifth annual ME/chronic fatigue syndrome conference will focus on the discovery of the XMRV retrovirus in blood samples from ME patients - and possible cures.
Vallings, acknowledged as Australia's leading ME expert and an adviser to the society, said the findings were wonderful news. But she warned they had to be replicated by other independent laboratories to validate them.
She expects to be in a position to bring back the latest knowledge to help Kiwi sufferers. A retrovirus contains DNA that is incorporated into the host cell's DNA strand and replicated, meaning it stays with the sufferer for life.
The Aids virus is a retrovirus, as are some cancer-causing viruses.
That such a serious problem could be the cause of ME may seem an odd thing for sufferers to celebrate, but it means a real understanding of the disease is finally in sight.
When Vallings began working with ME sufferers more than 30 years ago, there was little understanding of the condition.
"Until the last five years or so, people have been sceptical because there is no definite cause and no definite tests,"she said.
"A lot of sufferers look well, so had been mislabelled as having psychiatric conditions, and the term fatigue is very vague."
Attitudes to ME in New Zealand are more advanced than in other countries such as America, where sufferers struggle to have their condition accepted as a legitimate illness, she says.
"We're quite lucky because we're a small country and it's easier to educate the powers-that-be and doctors."
But there is still a "hidden amount of scepticism" here: "Schoolteachers and employers can still be quite difficult because they don't ... More on nzherald.co.nz
5 comments:
& the dark side fight back:
http://ukpmc.ac.uk/articlerender.cgi?tool=pubmed&pubmedid=19818158
"Thus, it may be that the divide between fatigue secondary to diagnosed medical problems and CFS may be need to be made more permeable, with some relaxing of the exclusion criteria in diagnostic guidelines for CFS. This may allow a greater use of evidence-based treatments developed for treating CFS amongst those with an apparent medical or psychiatric cause of their fatigue."
"There are numerous examples of studies demonstrating that the fatigue associated with clear 'physical' illnesses is more closely associated with behavioural and psychological factors than with the severity of the underlying illness. . For example, fatigue in HIV-infected patients is more strongly associated with psychological factors than with measures of HIV disease progression or the use of highly active antiretroviral drugs [29]. There is also evidence that behaviourally focused interventions are some of the most effective ways of reducing fatigue, even when there is a clear underlying cause, such as rheumatoid arthritis, multiple sclerosis or cancer"
...cont
..."The UK-based National Institute of Health and Clinical Excellence guidelines on the diagnosis and management of CFS recommend a slightly more conservative approach, with a more extensive list of blood and urine investigations suggested . Such lists of physical investigations should not detract from the need to consider psychological causes of fatigue. Depression is very common amongst those with fatigue [4,15], with recent studies using the British birth cohorts showing over 70% of adults reporting CFS have evidence of psychiatric disorder prior to their fatigue symptoms beginning ."
he and his colleagues really have muddied the waters by deliberately confusing depression with CFS.
...cont
Jill Cooper West Midlands Group Consortium read out a further statement to do with issues about patient representation, transparency, and the education and training program of the Co-ordinating Clinical and Research Network and Collaborative (CCRNC). She said that WMMEG had received a copy of the CCRNC Constitution from Dr. Esther Crawley. The document excludes anyone who does not support the NICE Guidelines. This practice is at variance with the Health Department's position on patient representation which is to 'provide a free exchange of ideas, questions, comments or criticisms... '
Dr. Shepherd confirmed that charities who do not support the NICE guidelines are excluded from the CCRNC.
Lady Mar and Jill Cooper disagree over CCRNC.
Ciaran Farrell said there is a great deal of concern about the NICE guidelines and that it was unfair and unreasonable to exclude people from the CCRNC.
Colin Barton objects to criticism of clinics saying many are being treated at them.
Annette Barclay and Jill Cooper disagree with him.
3.10 pm - Meeting Ends.
Disclaimer: the above is based on my and others' scribbled notes; cannot guarantee 100% accuracy.
Paul Davis www.rime.me.uk
Permission to Repost
Campaigning for Research into ME (RiME)
Summary of APPG Meeting 21/10/09
1.31 pm Meeting starts. Dr. Des Turner MP Chair says that the APPG will have to be reformed after the General Election in 2010. A legacy paper is being prepared - comments on the second draft of the paper must be sent to the Secretariat by November 20.
Dr. Turner says the date of next APPG meeting will be December 2nd. On the agenda will be the services inquiry report with the possible attendance of a Health Minister. He says that only AfME and the MEA will see the draft report.
Paul Davis RiME says that RiME has received over 50 copies of evidence submitted to Inquiry. Having read the large majority, with the exception of one, they are all negative. ME patients say the basis on which they were set up - CMO Report is bogus and they don't want them. Period. Matters of structure, finance, post-code lottery are irrelevant.
Christine Harrison BRAME said she wanted to inject a note of optimism - I didn't catch what she said after that
Ciaran Farrell: re. consultation on Inquiry Report: the report needs to be circulated ahead of time so there can be a proper, informed discussion at next meeting.
Paul Davis said re. Oral Presentations that the Chair had allowed matters outside the Terms of Reference to be discussed.
Dr. Turner said something about being flexible.
Paul Davis specifically mentioned the Lightning Process: Did the Chair not only allow someone to talk about it but comment positively on it himself? To our knowledge LP isn't being practiced in any of the clinics set up following the CMO Report.
Ciaran Farrell supported Paul Davis on the matter of LP and asked Dr. Turner if he is prepared to make a statement about how and why he was being flexible. Dr. Turner declined to do so.
Dr. Turner said we need to look at all treatments.
Michelle Goldberg ME patient talked about various forms of abuse; "Institutional domestic violence".
Janice Kent Remember talked about misdiagnosis and says that other illnesses are treated better.
Dr. Shepherd MEA bemoaned lack of medical help and expertise.
Dr. Turner mentions XMRV Virus and ongoing research in America.
Paul Davis thanked the Chair for mentioning XMRV but pointed out that the Government still isn't funding any biomedical research.
Colin Barton Sussex Group said that some research might be carried out at Barts.
Annette Barclay raised concerns and said who would want Barts doing such research? Several put their hands up in support of Annette.
2.09pm - Yvette Cooper Secretary of State for DWP enters, accompanied by Dr. James Bolton, Deputy Chief Medical Adviser to DWP.
Ms Cooper talked about her own experience, saying she had been ill with ME for two years and off work for a year. She outlined the changes to the care, welfare and benefits system - especially the introduction of Employment and Support Allowance to replace Incapacity Benefit and the role of Work Capability Assessment in deciding eligibility for ESA. She said she understood concerns re. the fluctuating nature of ME and the need for a flexible approach re. return to work. She believed the ESA and WCA took those issues into account. She said that DLA for people of working age was not under review.
Dr. Turner raised the issue of problems with tribunals. Examples of unsatisfatory procedures were mentioned by several attendees. Ms Cooper said tribunals were classed as 'independent' and their administration came under the Ministry of Justice.
Dr. Shepherd asked Dr. Bolton if he would meet with ME charity representatives to discuss concerns in more detail. He said yes. Shepherd says in his notes that this will be followed up via Forward-ME.
The 4th comment here should follow the first.
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