Wednesday, 27 January 2010

Time to talk

How much time do you need to talk to your GP in the consulting room about your chronic condition? Ten minutes? Fifteen minutes?
Pulse, a doctor's magazine, has an exclusive today claiming that health managers are planning to cut the length of London GP appointments by one third to cope with increasing pressure on the capital's NHS services.
Official reports outlining health service cuts have been leaked from NHS London and NHS East of England. The latter regional organisation has concluded that A&E services should be cut and so should outpatient appointments following A&E visits. So much for aftercare.
Well, I predict that if you are in London - and probably in every region once they have penny-pinched and pushed more in to GP practices - we are going to have learn to speak 100 words a minute as patients.
What do you think? Can we have a useful conversation about chronic, and often complex, illnesses in such a short appointment time? Or do you think maybe we will have to make more frequent appointments to cover each individual symptom?
Doctors are angry about the cuts and planning to protest next month in London. A commitment to maintaining effective care for patients that I applaud.

Wednesday, 20 January 2010

Understanding antibiotics

I like this long radio interview on community MRSA infections and strengthening the immune system!
The interviewer asks open and honest questions about microbial matters that we normal folk don't understand but need to know. The chemist and microbiologist tell us about: what happens after we take antibiotics (at about 12 mins in); antibiotic resistance (18 mins in); and how the immune system becomes weakened (29 mins in).
They also quote a research study that found that drinking one can of regular cola depresses the immune system by 92 per cent for five hours, due to the processed sugars. And don't try switching to diet cola! The body still recognises the sweeteners in a different way and the immune system is depressed in the long term.
Mmmmm, processed foods! Microbes love 'em!

Tuesday, 19 January 2010

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?

Saturday, 16 January 2010


I've gone for a new look to my blog. Well, New Year, new look! It is traditionally the time for changes. But I still prefer a slightly darker background - that is because of my problems with light sensitivity. Anyone else suffer with that while working on computer or in a room lit with fluorescent lights?
I am hoping to feel well enough to post some new comments on some new research next this space!