Working in harmony

I have so missed singing in a choir! I finally got to a community choir rehearsal this week and loved it, despite my tiredness afterwards.
Voices training up and down the scales with fun exercises, learning new musical parts and words, having a laugh with friends and people I hadn't met before.
It involved a lot of concentration for me but, oh, when our choir leader's hand counted us in and our voices wove together - the beauty of that connected sound thrilled me.


So much in our society today separates.
And there is a lot in scientific practice that separates everyone out to their specialisms. Often the system, or social norms, keep us firmly apart from others with a scientific perspective that comes from a slightly different discipline.
But I have found that some barriers have been brought down gradually over the last few years, for those who seek out connections. 


Now hear some encouraging words for patients from distinguished professor emeritus of microbiology and immunology, University of Michegan Medical School Fred Neidhardt:"Not uncommonly, investigations of infectious disease proceeded largely in medical school departments of internal medicine or pediatrics, while explorations of the intricacies of microbial growth processes were pursued at the same schools in basic science microbiology departments. 
"That situation has been changing in the past couple of decades, and finally the frontiers of bacterial physiology and of virulence (molecular pathogenesis) have virtually fused."


In a post-antibiotic age where microbes are the focus of close attention in acute and chronic medical processes, that is a good thing to know - the scientists, whose combined knowledge may understand the problem better together, are now talking to each other!
Prof Neidhardt says the science has undergone a "seachange" because their differently wise voices are now "intertwined".


To all of my friends and acquaintances with more know-how than I: please, share the knowledge you have across professional boundaries, listen to people you haven't listened to before, join your wisdom to others' wisdom. The rising chorus will produce something connected and more wonderful that will benefit us all.

Sunlight

Just back from a holiday with a bit too much sun.
I wasn't sunbathing at all I can assure you - I try to cover my skin and wear medically effective sunglasses to block all types of lightwaves. The glasses are to protect my extremely light sensitive eyes, which produce one of the seven forms of vitamin D in the body resulting in big swings in my condition.

As I am generally physically better after more than a year on my personalised drug treatment (hooray!), I was trying to be more active and sociable with my family on holiday. Unfortunately the kickback from the excess of sun has knocked me for six. Back to trying to have a normal life while keeping myself away from too much UV light (which also includes some fluorescent lights).

Has anyone else noticed an increase in pains or depression or other physical changes about one or two days after getting an excess of sunshine - maybe by the sea with the extra reflections from the water? Sometimes the sunlight and changeable weather at the turn of the seasons have a similar effect.

P-p-p-Peston

I think I knew I wasn't cut out for broadcast journalism when I stuttered my way through an interview with Sir Michael Parkinson in his backwater days when he had a talk radio show in London.

When I say stuttered, I mean that I paused and muttered "umm" a lot. Afterwards I didn't feel like I had presented a very good image of a professional female journalist, though I was only a cub reporter at the time.

Now that I have experienced some significant - though intermittent - cognitive dysfunction as part of my illness it has led me to reflect more on the speed at which other people's brains individually assess and respond to conversations and situations.

I was listening tonight to the BBC's business editor Robert Peston on the Radio 4 PM programme. Now he is highly regarded as a journalist and has a lot of intelligent insight.

But I was thinking - if he was a woman journalist and he spoke as he did tonight, I believe he would be assumed to be a stuttering incompetent and simply not up to the job.

I have no idea if Robert Peston simply has an idiosyncratic speaking style or genuinely has the same problem as I have; the need to stop for a second, consider what the person has just asked me, recall the information in my brain, then arrange my words in the most helpfully communicated order.

Unfortunately the interview doesn't appear to be on the BBC website for you to listen again, but in this case Peston was not only slow and erratic in his speaking (something he does already get criticised for); he seemed to be thrown by Eddie Mair's initial comments, emitted a strangulated pause and was unable to construct a reply that made sense.
It sounded like he might have been fine if he had simply been able to launch in to the material he had prepared for the interview. But he was interrupted in his thought pattern and had to respond as quickly as he could, which appeared to be incredibly slowly.
But nobody would dare question his intelligence.

Unfortunately women (often professional women) are significantly more likely than men to get a chronic illness, and many include the rarely recorded symptom of cognitive dysfunction. If it is recorded by doctors then it often gets put down as part of anxiety or depression, or simply the catch-all thing that "sometimes happens after you've had children".
But let's face it, we all have unique brains with our own patterns of thinking and recalling information. The speed of recall will also vary, and this should have no bearing on our ability to learn, understand and use information in our work. Yet we sadly do judge people by how they can respond, particularly we females who stumble over our facts, or admit we can't remember the name of something (tut, tut).

I am so glad that I was never tempted to take the radio or TV career path.
I much prefer the written word because I can take... my... time over it.
(And to be fair to Robert Peston, he writes an excellent blog.)

Are humans bigger mice without tails?

I have been sighing a lot over my laptop lately as a plethora of research these days claims that scientists could soon protect the whole of human kind from this disease or that disease.....on the basis of experimentation on mice.
One example is this reported in ScienceDaily which states: "The immune system of mice is very similar to that of humans".


I'm sorry but I cannot accept this bland statement. So often when I check the research papers, the researchers refer to the adaptive immune system (the one that recognises particular pathogens and then attacks) as if this is the only one there is.


In addition to the skin, the other layer of protection for the body is the innate immune system. This offers a constant and universal defence against dangers presented by microbes in the body. It is permanently on stand-by and can react to anything within seconds, sending a change along hundreds of response pathways.


The innate system consists of a variety of relatively little-researched receptors embedded in to the cells of our body. Some of these are called Toll-like receptors (TLR).


It is now known that humans - but not mice - have TLR10, plus mice have the additional TLRs 11, 12 & 13. Also the working of TLR8 is different in humans, compared with mice. 
I wish scientists would stop publishing papers that raise false hopes when clearly there is a big difference between the two mammals.


We may need increased research on fruit flies, not mammals, in my opinion. Yes! According to NASA scientists "Genetically speaking, people and fruit flies are surprisingly alike. About 61% of known human disease genes have a recognizable match in the genetic code of fruit flies, and 50% of fly protein sequences have mammalian analogues."
And they seem perfect for researching the little-known innate immunity pathways since fruit flies have no adaptive immune system.
Knowing these facts, I wonder if I could evolve a tail in the time that current pharmaceutical-based research can come up with human disease cures based on mouse models. Sorry to sound pessimistic, but I wish research money was directed in to more helpful avenues.

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.