The unbearable present

Last night I enjoyed being with about thirty five others in an evening of contemplation and meditation.
Many people present had never tried this approach to life - which is quite counter-cultural for Britain - and some helpful suggestions were offered for people who want to start.
One point made was that we have to try it for just a few minutes to begin with - we may very quickly struggle with things like pins-and-needles distracting us, or our mind being bombarded with thoughts, or we may simply be unable to sit still like that without feeling emotionally or physically uncomfortable with the situation.

The advice was to practice (in a way we individually find suitable) and persist, slowly increasing the amount of time we stay in contemplation.
We were advised to surrender to the difficult things that arise and then let them float past, allowing ourselves to be who we have been created to be, not who our hyperactive minds often tell us we must be.

Surrendering to the present moment, and persisting in spite of the surrounding thoughts and circumstances are two important principles to consider when you have a chronic illness. This is something I have learned spiritually and physically over the last few years.

We all have certain levels of long term pain that we feel we can (or can't) deal with - our memories of pain from the past can be one factor in how we respond. And sometimes it is the associated mental or emotional pain involved in living with chronic conditions that can be the hardest.
I have found that accepting the present moment, through meditation, can help me more than if I mentally fight back or try to cover over the physical pain (don't get me wrong; I do need some painkillers!).
Unfortunately in Europe and America we often have a very modern Westernised Christian approach to pain as soon as it appears - O God, please take it away! While there will always need to be some medications for serious pain, our heart's desire seems to be to rid ourselves of all painful aspects of life.

Well - in the famous opening words of M. Scott Peck's book The Road Less Travelled: "Life is difficult". Surrendering to that fact is hard, especially when the pain is really bad. But surrendering is necessary. It may make it a tiny bit easier if we believe we are surrendering to a loving creator (but not always. The individual will is strong!).

Whether we are dealing with a sudden overwhelming cough or itch in the middle of meditating, or with severe pain levels in a bad flare up of our condition, persistence is also necessary. We have to choose to continue.

My experience is that things can become totally unbearable, worsening to a point we feel we simply cannot live with. But when that moment has passed, without intervening, then a time follows fairly soon afterwards. Our spirit breathes a sigh of relief. We are still alive. We have passed through it. And if we have persisted once, then we realise the gracious possibility that we could do so again.

These are only a few words on a tough issue - I don't believe that dealing with pain involves some trite thoughts popularised as "mind over matter". On the contrary, this is just the "tip of the iceberg" of our being - our whole bodies, mental, emotional, spiritual, and physical, in all their wonderfully complex physiological detail.

Coalition thinking

Wow, what a week it's been for the English! Our first exciting experience of creating a real political coalition.
For it to continue, and work effectively, I believe we will have to change ourthinking. Maybe in the same way that microbiology experts have had to change their thinking recently about the human body and why it gets ill.
For so long we have talked of a sealed and protected physical body that has to wage war against any pathogens that threaten to infect us from the outside.
At the same time people have started to understand now that there are a lot of friendly bacteria on the inside (mainly because of that advert for a certain mini-drink).

So here we have a model depicting two tribes of bacteria, which suits our traditional way of thinking:there are these friendly, helpful bacteria that understand the needs of the human body; and there are those BAD bacteria (boo!) that we must never allow to have control over our body.
Suddenly we have a new third set of bacteria being mentioned and people are starting to say "D'you know, I never realised that they could look like that, or how they work exactly?" A bit like Nick Clegg.

Some microbiologists have named these bacteria existing inside our bodies pathobionts - a combination of pathogen and symbiont. A symbiont is a helpful organism which works in perfect synergy with its host.
Other experts are describing the human body now as a "superorganism" and conclude that the newly discovered microbes provide "metabolic functions far beyond the scope of our own physiological capabilities".
So how can we be sure if these pathobionts are going to work well together for our good, or if they might harm us instead?

We simply can't be sure.
That's right, we just have to try to get along with them.
We have to provide the right structure to work together in our body (a healthy immune system, well exercised muscles).
We have to limit the jobs that they do in our body to the ones we want them quietly to get on with (by not overfeeding them with any processed foods).
And we have to promise that we won't suddenly attack their tribal group (antibiotics are a dangerous weapon).

We are going to have to learn to live and work together with our pathobionts, otherwise we will see an even greater increase in chronic illness than we have already.
If you think my analogy is a bit far fetched then have a look at this scientific article (which focuses particularly on fungal infections like candida). University of North Carolina microbiologist William E. Goldman says that the infections are "not very good at causing disease in normal hosts with normal immune systems".
"But a growing population of people have not-so normal immune systems. Fungal infections are so deadly in part because most patients who become seriously ill are already weakened by AIDS, cancer, transplants or medications that handicap the body’s ability to mount a strong defense.
"More and more of these patients have taken high doses of anti biotics to prevent other infections, fundamentally changing the body’s ecology and allowing unnatural fungal growths to take over. More patients are also undergoing medical procedures that breach normal immune barriers with catheters and other devices."
He mentions catheters because we all have three parts to our immune system: the largest organ in our body, our skin; then our innate immune system which provides 24/7 security guards; and our adaptive system which attacks when danger is identified.
In these interesting times please give the microbial coalition a chance - a strong and stable agreement is the best option for your body's long term health.

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!