Patience, patience!

Chronic fatigue sufferers have had their hopes raised and then dashed again within just a few months - if you believe the headlines.
The trumpeted news last autumn was that a link had been found to a new retrovirus by a US charitable institute devoted to research for the benefit of Chronic Fatigue Syndrome (CFS) patients.
This retrovirus XMRV was first discovered in prostate cancer patients, then the Whittemore Peterson Institute found it in CFS patients and published the research in Science magazine on October 23.
Within one month of this research a UK research team carried out what they claim is a copy of the tests and then broadcast the absence of the retrovirus in CFS patients 'at least in the UK' on a pay-to-publish research website.
Their replicated tests didn't find a lower incidence of XMRV, which might have led to this link to CFS being carefully questioned as the primary cause: no, the team dramatically failed to find XMRV at all.
Chronic fatigue sufferers the world over had already been asking their doctors about XMRV; unsurprisingly, as there is currently no established medical cause or cure for the condition.
On the day the UK study was published on January 6 The Independent newspaper (UK) helpfully informed everyone: "Scientists' claim to have found the cause of ME is 'premature': British researchers say US team should have waited for more evidence of viral link before publishing findings."

Claims and counterclaims have been thrown across the Atlantic from research department to research department. A lot of the vitriol has been poured out by bitter CFS patients who feel abused and ignored. That's because one of the co-authors of the UK research is Simon Wessely - renowned (or infamous?) for prescribing and promoting cognitive behavioural therapy (CBT) as the only treatment for physiological symptoms of CFS.
The fact that this is the only official NHS treatment is undoubtedly an indictment of the British medical approach to difficult-to-diagnose conditions, but then again no one in the world has yet definitively provided a primary cause of CFS and presented sufficient research data to back it up yet.
Is the XMRV link strong enough? Do the US research findings and the first tests developed for the retrovirus necessarily prove that we have found a cause?
The UK research simply produced a negative result - should we conclude any positive possibilities from this? Many patients (and some top microbiologists) are critical of the UK's available laboratory facilities, so should we see this as a flaw in the research?
Or, as angry CFS patients previously pushed in to psychiatric treatment are loudly protesting, is this more about a UK medical establishment fighting back against wide publicity for a condition they would rather sweep under the carpet.
Even the experienced virologist Suzanne Vernon, who worked at the US Centers for Disease Control and Prevention before joining CFIDS Association of America, said: "It could well be true that XMRV is not present in the UK...but it is also possible that the technique used in the (UK research) was suboptimal due to the different methods employed."
I have to say I am puzzled by the UK team's desperate rush to start their own research project, which was still interviewing for an additional virologist on November 23 and submitted its results for publication on December 1. But at the same time I feel the Whittemore Peterson Institute has also rushed ahead - they have already licensed the first XMRV test.

This retroviral development may turn out to be a crucial piece of the bigger jigsaw puzzle that is autoimmune disease, but only one piece.
So little is known at the moment about the human innate immune function. Researchers and doctors are stabbing in the dark, usually directed by one vested interest or another, whether that be pharmaceutical profits or the feelings of bitter, desperate CFS patients.
For such a little-understood and yet widespread problem as chronic fatigue (which is a feature too of conditions like rheumatoid arthritis and fibromyalgia)there needs to be more thorough and properly funded research, with co-operation across medical specialisms and across different countries.
And not just research in to this or that bacterial or viral factor, but also of how effective our modern bodies are at defending against them. Why does our health keep getting knocked down so easily?

Dig deeper

Pandemic flu may have fallen off the news agenda but over the summer more scientific evidence has been gathering of how our underlying health could be a crucial factor in its severity.
Most people know about MRSA - and some avoid hospital out of fear they may get it there - but few people are aware of community associated MRSA.
CA-MRSA infections are known to be circulating among healthy members of the community and yet they have never been tested for in the UK population. The USA has undertaken studies and found that one in every 100 people carries CA-MRSA.
The SA in the abbreviation is Staphylococus aureus, a rather nasty family of microbes.
When the lungs of the young victims of the 1918 Spanish flu were studied, they were found to have been destroyed by a pneumonia which killed them within 72 hours. The weight of evidence since then has led infectious disease specialists to conclude that the extra factor in these swift deaths was Staph aureus.
One study by epidemiologists Noymer and Garenne of US 1918 flu deaths postulated that the Staph infection could have taken hold in the chest because apparently healthy people had undiagnosed tuberculosis, which makes little 'pockets' in the lungs.
Now two brand new studies by virologists - in Rotterdam, and Atlanta, Georgia - have found out exactly how different the pandemic H1N1 virus is from seasonal influenza virus - it particularly attacks the lungs.
Seasonal flu virus bound to the cells in the nose but they observed that pandemic H1N1 binds much deeper, in the trachea, bronchi and bronchioles of the lungs.
The US team also found the virus bound to cells in the intestine, explaining the nausea and vomiting associated with swine flu.
New Scientist magazine reported on this discovery: 'Individuals differ in the way they react to viruses. A virus that binds deep in the lungs can trigger potentially fatal pneumonia if the person infected mounts a strong inflammation in response to it.'
So where does that leave people with an autoimmune disease, like sarcoidosis or rheumatoid arthritis, where the immune system is apparently overreacting? Or people who always have sudden and severe reactions in the chest or gut whenever they take antibiotics?
These unknowns are part of the 'evolving threat' from community infections, and the NHS is ill-prepared for it, according to an expert.
Professor Richard James, director of the Centre for Healthcare Associated Infections at the University of Nottingham, said last month: 'It took the UK over 10 years to start to get to grips with the problems of hospital MRSA infections and we are still fighting this war. We are not yet ready to fight the next one against CA-MRSA infections.'
He complains that the NHS is: not testing for this known community health risk factor; has not got enough intensive care beds to cope with even a low number of cases of swift-acting pneumonia in swine flu patients; and has failed to invest in laboratories and advanced diagnostic testing.
He is trying to raise £1.4m in charitable donations to fund new research in to infections because of the lack of public funding.
Meanwhile 37,000 people have died in the last ten years from MRSA or another serious infection C.diff. That's twice as many deaths as those from road traffic accidents - and the extra treatment costs incurred by these infections in the NHS is £1 billion each and every year.
Infectious disease specialists have been asking for UK investment in advanced laboratory testing for a long time now.
Emeritus Professor at the University of Aberdeen, Hugh Pennington warned in a Radio 4 investigation last year that the current system of two main laboratories for the whole country, with results delivered at a snail's pace, was inadequate. The national Health Protection Agency lacks enough resources to track infections.
He told File on Four: "The scandal here is that we know what to do, the technology's there to spot these things as they are appearing and we know how to react to them. It would be quite wrong if we allow these things to develop and of course history tells us that if we do neglect these bugs, we neglect them at our peril."
Can someone in charge of NHS resources please wake up and smell the coffee?

Newsflash

Sadness today when I received the US Food and Drug Administration's new warning about TNF blockers, which are prescribed for a variety of autoimmune disorders including rheumatoid arthritis.
Eleven children died of cancer, they announced, and 37 more got either lymphomas or other malignant conditions after they received tumour necrosis factor blockers, which alter the immune system.
Almost nine out of ten of those children affected were also taking another immunosupressive drug like methotrexate.
Two more separate FDA studies show today that 26 people died of leukaemia after taking the drugs, and 69 people receiving them for autoimmune or rheumatic illness suddenly developed serious psoriasis. Twelve of these were hospitalised and most recovered after TNF blockers were stopped.
Physicians are being warned in future to discuss with the patient's family the possibility of getting leukaemia alongside the need for treatment of the original autoimmune condition.
I find these drugs' 'side effects' shocking. What could possibly be the link between altering a sick person's immune system and subsequently getting either cancer or an apparently unrelated condition?
My sincerest condolences go to those families whose dreams for their children have been shattered.