Your medical details: accurate? too public?

Have you had a letter from the NHS about Summary Care Records?
I've just received one and, because of my chronic condition and past care, I have been having a serious think about the pros and cons of an electronic patient record that can be shared with all medical professionals.
I was wondering whether to take some of my GP's time to discuss it with them, but I wasn't in any hurry because I understood it could take until the end of the year to happen.
But unfortunately now there is a big bust-up between the British Medical Association and the NHS body called Connecting for Health because the latter is rushing the new records because of the election, according to the GPs' magazine Pulse.
My letter and the website link don't mention any deadline for opting out of the scheme (as you can choose to do, if you want) and the posted information is very upbeat about the development of the computerised records and the security of it once it is kept online.
But Pulse quotes a letter from the BMA to the health minister that warns of the new-style computerised records "being created without even implied or presumed patient consent" and says that GP practices are going to swamped by patients who have been rushed on to system and will suddenly need their latest prescription details added on at their next appointment.
I can see certain benefits to all medical professionals having access to my drug record and allergy information, but it seems that the NHS is taking the decision about whether or not I want this out of my hands very quickly indeed.
If you are uncertain about this, go to the website immediately and download a form to withhold your clinical data from the Summary Care Records: it seems this is the only way to stop this happening without your presumed consent. You can easily consent later, but your file is virtually impossible to delete once it is there.

Does your brain feel ill?

When we have been ill for a little while it is natural to feel "down", isn't it?
A bout of sickness, flu, or a bad flare-up of our chronic symptoms will often lead to feelings of lethargy and depression and we usually find our fellow humans' response to this is: "That's not surprising after being unable to do things normally - I would get depressed about it too!"
But this is a strange Western rationalisation of the brain as separate from the body. Obviously the brain is actually connected to the body, and the brain tissue can become ill as well.
New research has shown clearly that our brains actually respond to infection in the body to make us FEEL ill; it is not just a psychological after-effect of a physical event - the brain makes this happen.

Now some clear research studies have shown the process involved. The innate (initial defensive) immune system produces proteins called cytokines whenever they encounter a bacterial challenge.
This then signals to the brain, then the entire balance of "mini" hormones and different chemicals in the endocrine system undergoes a change. These signals run through the neurotransmitters and alter our mood and behaviour.
There is already enough evidence to show that the root of depression is in something called the subgenual cingulate of the brain.
When researchers watched the subgenual cingulate with an MRI scanner they found that patients who had mild inflammation from a typhoid injection showed activity here. And those who had the largest inflammatory cytokine response had the greatest problems with their mood and a slowing down of their normal responses.

Dr Neil Harrison of Sussex University told the World Service's Healthcheck programme that many different illnesses with a bacterial element and immune response cause this real physical action in the brain:"Cytokines can cross the blood brain barrier but can also bind to nerve endings and be signalled in the brain."

One thing he didn't touch on was why the body might want the brain to make it feel so bad. If your body feels confused, withdraws from social situations, suffers depression and slows right down, according to this research, that's because it is busy mounting an immune response to infection.
So, may I suggest, it might at times be healthy (for all concerned) to stay at home in bed and avoid others, instead of taking some tablets and making a psychological effort to get back in to the swing of things.

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.

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!

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?

Ch-ch-ch-changes!

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 week...watch this space!

Why am I so tired?!

Everyone's saying it at the moment. Everyone's feeling it. Why?
Hibernation is often the next word out of our mouths – we so envy the squirrels and badgers as they curl up in the warm, and we moan at our bosses for not letting us stay under the duvet each morning.
As autumn and winter set in we seem to be torn over which is the more natural response. Shall we give in to our body's desire for more rest? Or seek more of the natural substances which we believe are good for us (sunshine, vitamin pills, fresh fruit and vegetables) so our bodies can keep active as we aim for a healthy life?
A big factor at this time of year is the number of apparent viruses and infections. We refer to these as bugs 'going round' and comment that we have 'caught' something.
We say we can't 'shake off this chest infection', or we have 'passed our cough on' to another member of the family.
There is no doubt that microbes are very efficient at getting from one human host to another through coughing, sneezing or hands. Yet microbiologists are now beginning to understand that bacteria and viruses can sometimes hang around in all sorts of places in our body without the immune system showing signs of responding at all.
Admittedly a few factors in infectious transmission involve the weather – low temperatures and a low total moisture content of the air create ideal conditions for flu viruses to attach themselves to the mucus-producing surfaces of the body (often the nasal passages).

Research is beginning to show that our immune systems are not always under sudden threat of overwhelming attack when our bodies respond. Our immune systems may instead have 'woken up' to a danger that is already present.
But why might our immune systems go to sleep until then? Surely they are on guard all the time? (See my first blog post for one suggested reason).
A simplified summary of our complex immune response splits it in to two main parts: the innate immune system, which is not yet well understood but involves receptors mounting a standard defence; and the adaptive immune system, where the different types of white blood cells recognise invading pathogens, attack and destroy them.
A healthy immune response in a human body will, once it is fully aware of the danger, rush to remove it. The results of this process can be high temperature, production of mucus, fatigue, inflammation, vomiting, coughing or skin outbreaks – anything to help the body kill off or expel the bacteria.
Does that seem strange to associate these awful symptoms with being 'healthy' internally? Our bodies do so much without us knowing anything about it and scientists are beginning to note that these apparently undesirable symptoms can be helpful, natural responses that keep us healthy.

So, what about times when we only feel tired?
Sleep is an amazingly mysterious thing that is still the focus of much research. But there is already evidence that sufficient sleep contributes to our immunity, and that infection can cause disruption of normal sleep patterns.
Even though nothing else is apparent, I would suggest that tiredness means the body is hard at work doing something that comes naturally. We can't all be subject to close medical scrutiny to find out what is going on inside us at that moment when we collapse on the sofa.

Our first urge when we are fatigued or our bodies seem 'under the weather' is to take away the symptoms and pain. But a lot of commonly used medicines like anti-inflammatories, anti-depressants and prescription steroids actually reduce the functioning of the immune system.
Don't let your immune system go to sleep. Maybe you should give your whole body an early night.
But your boss won't be pleased if you just pull the duvet back over your head each morning.

A bit more meddling, anyone?

Admit to being a navel-gazer. Who hasn't become caught in the obsession these days with yoghurt and little bottles of 'friendly bacteria'? In the first edition of the Times' eureka science magazine I found a great overview of the current known microbiota of the gut.
But having sufficient 'friendly bacteria' is not the sole important factor in gut health. It has been discovered only within the last ten years that our long term health, our weight, even our mental condition, are affected by the range of microbes in our gut.
Unfortunately we have been meddling with the microbiota for 60 years now.
Jeremy Nicholson, Professor of Biological Chemistry at Imperial College London, is quoted in eureka:"Since the Second World War we've been using lots of antibiotics. Well, guess what? They've killed the good bugs as well. A lot of diseases have become more common in the West since the Second World War, such as Type 2 diabetes and obesity. Now that the Far East is westernising, you're seeing the same thing there. You've got more western diets, which can change your bugs, and antibiotic use is going up as well."

Antibiotics, initially penicillin, were originally life-saving medicines that brought injured soldiers back from the frontline field hospitals when they would otherwise have succumbed to infection. Today a short course (or two) has become everyone's drug treatment of choice and health managers are trying to put the brakes on antibiotic use.
But chronic illness had already mushroomed before this consensus for change was realised.
Far from being a decisive weapon against infection, unmonitored antibiotic use can promote the growth of the worst kinds of resistant, spore-carrying bacteria; hence the emergence of the hospital superbug C.diff.

Now some microbiologists are suggesting we should help patients by altering their personal gut bacteria - surely the ultimate in individualised care. Not by using probiotics - they don't seem to work, despite what the ads say - but possibly by tampering with the current balance of gut flora in some way.
Professor Nicholson enthuses: "We may be able to modulate drug metabolism and toxicity. It's interventional personalisation: this is the way you are, this is what you need and we can change you to make it work. Nobody's ever done that before."

Woah!
So let's get this straight.
1) Sixty years of an intervention which has tried to beat bacteria at their own game through overwhelming antibiotic force has led to an unpredicted increase in chronic conditions in the general population.
2)We have just discovered a few more complex facts about the microbiota of the human body.
3) Excited scientists want to rush ahead and intervene by forcing our microbial balance back to roughly where they think it should be.
Has no one learned any lessons from the past? Do we have to recklessly hurtle on? Or shall we pause for a public debate about this?
Hands up all those in favour of more meddling?
Personally, I prefer to be sure my own immune system is working effectively, so it can do the job of fighting infection that it was well designed to do.