Wednesday, 29 December 2010

No simple answers for autism or any condition with mental symptoms that shift over time?

I have observed that there are many families where different members have diagnoses varying from bi-polar disorder to chronic fatigue syndrome, or from Aspergers to rheumatoid arthritis, and that these change between the family generations. Also many of those given one diagnosis also have another (or even two or three) diagnoses - known as comorbidities.

I have seen a few instances of the medical profession beginning to admit that their diagnoses don't always fit neatly and therefore are not always helpful ways of ensuring the patient gets the most effective treatment. But today's opinion piece in Scientific American on the Diagnostic and Statistical Manual (DSM) of Mental Disorders by Steven E. Hyman, a top neurobiologist and international advisor on mental health conditions, absolutely lays bare the contradictions revealed by the advances of molecular scientific research.

"What the DSM treats as discrete disorders, categorically separate from health and from each other, are not, in fact, discrete.... I would hypothesize that what is shared within disorder families, such as the autism spectrum or the obsessive-compulsive disorder spectrum, are abnormalities in neural circuits that underlie different aspects of brain function, from cognition to emotion to behavioral control, and that these circuit abnormalities do not respect the narrow symptoms checklists."

HOORAH! The beginnings of recognition of complexity in genetic effects and the stupidity of simplistic medical naming. Roll on the medical paradigm shift!

Friday, 5 November 2010

Our fossilized beauty

The recent unearthing of my childhood fossils and stones collection has resonated with my belief in the gradual structuring and reinvention of our human body over time.

I do not believe that we consist only of our isolated selves, our personal lifelong genes. We are not self-contained, pure and untainted within our skins; and current developments in microbiology and genetics give me encouragement in believing this.

What if each of us, when we were tapped with a little fossil hammer, broke open to reveal complex beauty? The beauty created by additional beings within us that have gifted their pattern to our make-up.

Maybe we have many quiet contributors within us that will not be revealed for a very long time, despite how clever we think we are in scientific terms. Until the relevant patch of earth cracks and crumbles, the true face of the stone will not be exposed to examination and awe.

What I am suggesting is that we are the sum of many people - past and present - and also many other things, so that our physiology and health may get a little improved, or a little worsened over a period of our lives; or maybe both of these possible actions, in one lifelong balancing act.

The possibility that some creature could slip a few genes in to another unrelated creature simply by living with them was once thought to be extremely rare. Recent studies on intracellular bacteria and their hosts seriously question this view

When I look at the magnificent tracery of ancient fossils within my stone collection I'm excited about what we can learn in the near future about the greater complexity of our human body - if we are prepared to think inside and outside ourselves.

Tuesday, 19 October 2010

Back from the dead!



All Hallow's Eve approaches and many friends are telling me that they are feeling like death warmed up.
It is normal to be worn down by fatigue and and moan that this is a horrible time of year. We wish all these stomach bugs and infections on our chests would go away...and quickly.
I am also “full of cold”, falling in to a deep exhausted sleep for hours at a time, and struggling to write through an aching body and head which has continued for a week. But I am excited and happy about this.

Why??? Why would I be so perverse?
To shorten a difficult explanation: because it is a sign that my body is alive and kicking!

You see, I have now been through years of these phases of increased immune response with aching bones, upset stomach, mucus-production, sinusitis and headaches. I made them happen by embarking on a radical and tough immune-stimulating drug protocol called the Marshall Protocol. This is the opposite of many mainstream immune-suppressing medical treatments for chronic pain and autoimmune conditions.

The result after 17 months has been a huge reduction in my chronic pain, diagnosed as fibromyalgia, and the recovery of my ability to maintain a stable body temperature (At times in the past three to five years the number of clothing layers I needed was ridiculous and any exposure of my skin to cooler air led to uncontrollable shivering and blueish nails).

I am now able to think about working again because the cognitive dysfunction I experienced for a few years seems to be lifting gradually like a curtain.
I fully expect to face more ups and downs during my recovery, but now I sense that my body can basically cope with what is thrown at it.

In the last month or two I was feeling quite good, sailing along, no longer struggling to walk more than short distances, and able to use my muscles more often without post-exertion pain.
I consulted my two doctors and we agreed that I would make a certain medical adjustment which they predicted would cause my immune response to increase again. This is sometimes called a Herxheimer reaction. We all felt that I was ready for this next step change.

Hence I am now sneezing, coughing, aching and trying to clear my poor sinuses.....and I am rejoicing as I take the next steps in my recovery! I haven't “caught a bug” - my body is responding exactly as planned, to control the chronic infections already at home inside my body.

I want to write a whole series of blog posts about natural immune responses of different types (subject to my own daily symptoms!). If you don't think I am explaining in a lot more depth what I believe is happening in the body, contact me and tell me!

Good health everyone!

Friday, 1 October 2010

Naming names



What's in a name? Well, if someone called you by the wrong name you wouldn't hesitate to correct them.
And humans do so love the naming of things. Whole books are written about those individuals who have come up with naming systems for different scientific areas such as Carolus Linnaeus for botany. 


Much effort is spent these days in testing and identifying the name of the bacteria that may have caused an infection. Once the doctor knows what it is then s/he feels able to prescribe the correct antibiotic. Or that's the theory.


But a new paper has shown how difficult it can be to put a name on something as shape-shifting as microbes. 
The genes from one microbe may be quite useful to another nearby microbe - especially if they convey antibiotic resistance - so they parcel it out in a generous way apparently. This is called horizontal gene transfer.


In Nature News magazine this week they reported on the important discovery of the mechanism by which microbes do this, and also revealed how amazingly quick it can happen. Overnight 47 per cent of marine bacteria had taken the genetic make-up of an introduced modified microbe in to their own genetic make-up. Now that makes naming microbes a bit tricky.


Evolutionary biologist Jeffrey Townsend at Yale University in New Haven, Connecticut, told the magazine: "In order to understand antibiotic resistance, pathogenicity, or the beneficial things that bacteria do for us, we need to understand how they evolve through horizontal gene transfer — knowing about this process can help us live in a world full of microbes."


And most of us want to carry on living in this microbe-crammed world, don't we? I think we need to pay less attention to naming things, and start applying our knowledge to understanding important processes in and around us.

Tuesday, 28 September 2010

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.

Monday, 9 August 2010

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.

Friday, 16 July 2010

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.)

Wednesday, 7 July 2010

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.