Cold Toes on chronic illness

Pretty simple, huh?

2011-05-19T17:17:00.001+01:00

http://tinyurl.com/6a2baeh

The Telegraph today may be showing pretty pictures of bacteria but they display OLD-STYLE microbiology when we know at a molecular level now that these matters are far more complex than pinpointing the great big "bruisers" of microbes like E coli and helicobacter pylori.

This study "provokes reexamination of the traditional view of killing strategies against bacteria" and contains some far more challenging actual shots of bacteria. And this paper points out the seriousness of microbiologists ignoring the need to research cell-wall-deficient bacteria.

The ridiculousness of showing the public computerised pictures of the fearsome "bogeyman" pathogens that can be easily named is particularly evidenced by recent papers on nanobacteria and others that have long shown a link between these incredibly tiny microbes and calcifying human conditions, like artery or kidney disease.

All this research (which does not receive media coverage) indicates it is this increased depth of knowledge we need to seek if we are ever going to get to grips with chronic illness.

Gotta add weight

2011-05-02T21:13:00.001+01:00

New research adds weight to the theory that the body absolutely needs to push fat in to cells. Those patients who had liposuction in one place found that the fat reappeared somewhere else in the body.

This makes sense to me, if you consider that a body which does not have a perfectly balanced metabolism of its various proteins, chemicals and hormones will produce an excess of some. Fat cells are a good place to put the extra.

If the body didn't then it could go downhill very quickly. I have also read that if fat cells become bloated and then a sudden event causes some to burst, releasing the toxins within, this precipitates an acute medical emergency.

I am seriously in favour of shoving the horrible current public attitude that "obese people" (however others want to categorise them, usually by appearance!) are to blame for their own poor health.

While everyone has to be sensible about limiting our modern tendency towards processed foods, it is now becoming increasingly clear that there is something wrong within the body that produces obesity. It is not just our genes or our diet.

And if you are wondering why, after liposuction, the fat doesn't go back to the same place but to some other fat cells elsewhere, one expert in the New York Times piece had this suggestion: "Maybe liposuction violently destroys the fishnet structure under the skin where fat cells live." Wrecking your body further does not seem to be a sensible answer to obesity.

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

2010-12-29T00:39:00.001Z

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!

Our fossilized beauty

2010-11-05T16:51:00.002Z

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.

Back from the dead!

2010-10-19T11:41:00.001+01:00

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!

Naming names

2010-10-01T20:30:00.002+01:00

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.

Working in harmony

2010-09-28T09:31:00.000+01:00

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

2010-08-09T11:22:00.001+01:00

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

2010-07-16T20:56:00.002+01:00

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?

2010-07-07T12:49:00.004+01:00

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

2010-05-26T12:58:00.000+01:00

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

2010-05-12T17:36:00.001+01:00

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?

2010-03-10T21:16:00.007Z

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?

2010-03-09T12:17:00.005Z

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

2010-01-27T17:36:00.005Z

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

2010-01-20T13:20:00.002Z

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!

2010-01-19T11:14:00.010Z

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!

2010-01-16T21:31:00.003Z

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?!

2009-11-24T15:59:00.009Z

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?

2009-11-12T15:09:00.006Z

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.

Long time, no blog posts

2009-11-12T15:08:00.001Z

Sorry that I have been quiet lately but I have not been feeling well enough to write or research.

Pain and one tiny unscientific conclusion

2009-09-08T15:13:00.004+01:00

I just had to respond to Lynne McTaggart's What Doctors Don't Tell you blog on pain: this was the comment I posted.

Was very interested to read this timely posting on an important issue for patients as I agreed with 95 per cent of all you said.....until you made the comment about vitamin D. It is a very fashionable conclusion. But who benefits if everyone (apparently) needs to supplement their vit D intake? The health supplement producers, and particularly a large lobby of vit D producers, that's who.

If vitamins are defined as chemical substances that the body cannot produce itself but which must be ingested for correct functioning of the body, then why is vitamin D produced by the body (in several complex forms) through the action of light on skin and eyes? Maybe because it is not a vitamin and needs detailed investigation?

Many research studies recently have concluded there is a link (or correlation) between low levels of 25-hydroxyvitamin D (the most commonly and simply measured form of vit D) and pain/underlying disease. But note the word 'correlation'. The cause meanwhile could be one of at least two options: pain/underlying disease causes low levels of vit D; or low levels of vit D cause pain/disease. Too often it is claimed that a proven correlation has the latter cause. I am not just unconvinced but find this repeated mistaken conclusion totally unscientific.

Also, how come this study below (and others) showed that people with long-term avoidance of light still maintain normal vit D levels in their bodies?

http://www.ncbi.nlm.nih.gov/pubmed/9418761

Dig deeper

2009-08-25T21:14:00.004+01:00

Pandemic flu may have fallen off the news agenda but over the summer more scientific evidence has been gathering of how our underlying health could be a crucial factor in its severity.
Most people know about MRSA - and some avoid hospital out of fear they may get it there - but few people are aware of community associated MRSA.
CA-MRSA infections are known to be circulating among healthy members of the community and yet they have never been tested for in the UK population. The USA has undertaken studies and found that one in every 100 people carries CA-MRSA.
The SA in the abbreviation is Staphylococus aureus, a rather nasty family of microbes.
When the lungs of the young victims of the 1918 Spanish flu were studied, they were found to have been destroyed by a pneumonia which killed them within 72 hours. The weight of evidence since then has led infectious disease specialists to conclude that the extra factor in these swift deaths was Staph aureus.
One study by epidemiologists Noymer and Garenne of US 1918 flu deaths postulated that the Staph infection could have taken hold in the chest because apparently healthy people had undiagnosed tuberculosis, which makes little 'pockets' in the lungs.
Now two brand new studies by virologists - in Rotterdam, and Atlanta, Georgia - have found out exactly how different the pandemic H1N1 virus is from seasonal influenza virus - it particularly attacks the lungs.
Seasonal flu virus bound to the cells in the nose but they observed that pandemic H1N1 binds much deeper, in the trachea, bronchi and bronchioles of the lungs.
The US team also found the virus bound to cells in the intestine, explaining the nausea and vomiting associated with swine flu.
New Scientist magazine reported on this discovery: 'Individuals differ in the way they react to viruses. A virus that binds deep in the lungs can trigger potentially fatal pneumonia if the person infected mounts a strong inflammation in response to it.'
So where does that leave people with an autoimmune disease, like sarcoidosis or rheumatoid arthritis, where the immune system is apparently overreacting? Or people who always have sudden and severe reactions in the chest or gut whenever they take antibiotics?
These unknowns are part of the 'evolving threat' from community infections, and the NHS is ill-prepared for it, according to an expert.
Professor Richard James, director of the Centre for Healthcare Associated Infections at the University of Nottingham, said last month: 'It took the UK over 10 years to start to get to grips with the problems of hospital MRSA infections and we are still fighting this war. We are not yet ready to fight the next one against CA-MRSA infections.'
He complains that the NHS is: not testing for this known community health risk factor; has not got enough intensive care beds to cope with even a low number of cases of swift-acting pneumonia in swine flu patients; and has failed to invest in laboratories and advanced diagnostic testing.
He is trying to raise £1.4m in charitable donations to fund new research in to infections because of the lack of public funding.
Meanwhile 37,000 people have died in the last ten years from MRSA or another serious infection C.diff. That's twice as many deaths as those from road traffic accidents - and the extra treatment costs incurred by these infections in the NHS is £1 billion each and every year.
Infectious disease specialists have been asking for UK investment in advanced laboratory testing for a long time now.
Emeritus Professor at the University of Aberdeen, Hugh Pennington warned in a Radio 4 investigation last year that the current system of two main laboratories for the whole country, with results delivered at a snail's pace, was inadequate. The national Health Protection Agency lacks enough resources to track infections.
He told File on Four: "The scandal here is that we know what to do, the technology's there to spot these things as they are appearing and we know how to react to them. It would be quite wrong if we allow these things to develop and of course history tells us that if we do neglect these bugs, we neglect them at our peril."
Can someone in charge of NHS resources please wake up and smell the coffee?

Herpes - not so simple(x)?

2009-08-16T19:37:00.013+01:00

Reading the latest Private Eye magazine column by M.D. (the comedian doctor Phil Hammond) on herpes simplex outbreaks has provoked bemusement.
I think M.D., despite his new role as patron of the Herpes Viruses Association, may have shown a disservice to the many people with cold sores or genital blisters as he wittered on about how, back in the olden days, people would panic unnecessarily about the herpes family of viruses being linked to a sexually transmitted disease.
He declaimed those who made a stigma out of the virus: 'Herpes does far more psychological damage than physical.' Then, continuing on his juicy theme, he helpfully put down transmission and cause of facial cold sores to...oral sex.
So much for trying to get rid of the stigma!
The HVA website is clear that, while all mucous membranes are particularly vulnerable, the virus can be passed through any skin to skin contact with friction, including via the hands. White lesions on the hands, caused by herpes simplex, are called whitlows.
Amid normal day-to-day conversation I have encountered no one of my generation or younger embarrassed to talk of obvious cold sores on their faces or of the known cause - herpes.
M.D.'s cheerful obsession with sexual transmission of herpes seems to say more about the stage of life reached by his (male) generation.
M.D. concludes of genital sores: 'They're only cold sores and they go away without treatment.' Really?
Other physicians in the US and elsewhere accept that a notable proportion of people continue to have chronic outbreaks of herpes simplex. A common suggestion is that it results from underlying suppression of the immune system.
Information on the HVA website tells us that 'three quarters of people with herpes simplex are unaware of it' and that the virus can cause - or the diagnosis be confused with - thrush, repeated cystitis-like symptoms, skin lesions on the buttocks, piles, lower back pain, nerve pain, flu symptoms and more.
Research worldwide has found herpes simplex (plus other viruses and bacterial infections) in patients with fibromyalgia and chronic fatigue.There are also several studies that have found herpes simplex surrounding plaques in the brains of Alzheimer's patients; findings which require further investigation.
Anyone with unexplained nerve pain at the neck, or persistent muscle pains might like to know these facts. Not that I am putting such conditions down to herpes - I don't give simplistic answers like M.D.
At the HVA's AGM the genitourinary specialist Dr George Kinghorn explained that the relationship between Type 1 (symptoms from the neck up) and Type 2 (from the waist down) of the virus is much less clear cut than previously thought. And he notes that symptoms and severity 'will also depend on a variety of individual susceptibility factors, our genetic make-up certainly has an effect'.
Inherited genetic factors could be one area of further study. So too could the genetic damage caused to human cells by forms of persistent bacteria like streptococcus and E.coli, which molecular scientists are now revealing to be much cleverer at changing their surrounding human environment than we first believed.
Investigation is needed in to what, I think, is a complex rather than a simplex subject.

Newsflash

2009-08-05T19:50:00.006+01:00

Sadness today when I received the US Food and Drug Administration's new warning about TNF blockers, which are prescribed for a variety of autoimmune disorders including rheumatoid arthritis.
Eleven children died of cancer, they announced, and 37 more got either lymphomas or other malignant conditions after they received tumour necrosis factor blockers, which alter the immune system.
Almost nine out of ten of those children affected were also taking another immunosupressive drug like methotrexate.
Two more separate FDA studies show today that 26 people died of leukaemia after taking the drugs, and 69 people receiving them for autoimmune or rheumatic illness suddenly developed serious psoriasis. Twelve of these were hospitalised and most recovered after TNF blockers were stopped.
Physicians are being warned in future to discuss with the patient's family the possibility of getting leukaemia alongside the need for treatment of the original autoimmune condition.
I find these drugs' 'side effects' shocking. What could possibly be the link between altering a sick person's immune system and subsequently getting either cancer or an apparently unrelated condition?
My sincerest condolences go to those families whose dreams for their children have been shattered.

Cancer and bacteria

2009-08-03T16:57:00.006+01:00

Have you noticed recently how there is increasing talk of vaccines against cancer?
As lay people, this might seem rather confusing. We know that the medical establishment have urged us for a long time to have all our immunisations for infectious diseases.
We are also made aware that cancer organisations have worked for decades, putting millions of pounds in to cancer research which is increasingly complex and often focused on inherited genetic causes.
Cancer Research UK makes its opinion crystal clear on its website: 'Cancer is not in any sense an infectious disease.'
So how come the major research breakthroughs (setting to one side more effective drugs to slow down, but not cure, cancers) have been in cancers like cervical or liver cancer, where the cause is shown to be a specific virus.
Cancer Research UK, while relaying some helpful virus-specific advice on its website, still plays this down incredibly by saying: 'Cancer...represents a very rare accident of long-term infection with such a virus.'
But now lets hear from Paul Ewald, evolutionary biologist and the first recipient of the George R. Burch Fellowship in Theoretic Medicine and Affiliated Sciences:'Back in 1975, mainstream medicine agreed that about 0.1% of human cancer cases were caused by pathogens. When it came to the rest of cases, their view was that they were probably caused by a combination of inherited predispositions and mutagens.
'Then in 1985, the percentage of cancer cases they tied to pathogens was 3%, and they continued to make the same argument about the remaining cases. In 1995 the percent of pathogen-induced cancer cases was accepted to be around 10%.
'Now, we’re at 20%. Still, mainstream medicine contends that the other 80% of cases do not have an infectious cause, but the question is – do you believe them anymore?'
Another very recent and conclusive addition to this crowd of infectious connections to cancer came in a study published in May by the Institute of Genetics and Molecular Medicine at the University of Edinburgh (Attaching and Effacing Escherichia Coli downregulate DNA Mismatch Repair Protein In Vitro and are associated with colorectal adenocarcinomas in humans: Oliver D.K. Maddocks et al).
In a brilliant paper, worthy of a Crystal Mark from the Plain English Campaign, it persuasively 'demonstrates for the first time' the link between cancer of the colon and bacteria able to attach themselves firmly to cells inside the colon. Up to 100 were found hiding in a single cell.
Not only that, but the research scientists also say their study has uncovered the mechanism the bacteria uses to shut off the colon cells' ability to protect themselves against dangerous genetic mutation. This may be how the bacteria possibly causes colon cancer, but proof will only come from further study.
Interestingly, they note a 'striking similarity' with the bacteria helicobacter pylori, which also interferes with the mechanisms of gastric cells and causes stomach cancer. For a long time H.pylori as the known cause of stomach ulcers was ignored by the medical establishment too, while doctors still hector patients about helping themselves by avoiding stress (for pity's sake!).
With more and more research like University of Edinburgh's study coming to light - but repeatedly ignored by frontline medical staff - how long do we have to wait in pain and ill health before our doctors take a closer look at the infections we have each collected in our bodies? Until it's too late?

Life too complicated?

2009-08-01T09:41:00.005+01:00

I always appreciate the news according to The World Tonight, especially on Robin Lustig's watch. It is vital that we take in a broad sweep of the issues which are important to our everyday lives.
And I think The World Tonight is often the best at this - by miles, in comparison with other BBC news output for the UK. Lustig has recently posted on his blog his theories about why the current swine flu is a 'flu scare'. Of course, most of his concerns about scaring people lie with how it is presented by health experts and the media.
But he makes this point: 'We live in a complex, confusing, technologically-challenging world.... We lie awake at night and worry: do I know enough, understand enough, to make the right decisions for myself and my family?...But the answers are usually as confused as the questions.'
Lustig may have noted that people are generally less willing these days to accept what they are told by officialdom, but something is else is also going on.
Because the modern world - particularly medical science - has advanced to such a detailed state, we as humans have an overwhelming urge for someone to tell us 'it's OK - we know what's happening'. And we invariably turn to an expert in the particular area of concern, whether it be a cancer doctor or an infectious disease specialist, for that essential reassurance.
So what would be the result if a virology expert turned round and admitted about the current H1N1 flu strain:'Actually this is so globally complex and new that we don't have any idea how this will develop or how to effectively protect ourselves.'
Panic!!
And, though we do have a few pointers for how the pandemic may move and change, it seems true to say the experts have little idea where this may all be heading, or why it is happening now.
But it is 'only flu' as Lustig and others protest. 'Just wash your hands!'
Again that heartcry for simplicity and reassurance erupts.
The official advice that people with 'underlying health conditions' need to be careful about coming in to contact with the virus is a simplistic message masking a whole new world of unknown factors.
Evidence is emerging from international biomedical expertise of even greater complexities in our bodies than we have ever imagined, involving a community of many more genomes than our human genome!
The Human Microbiome Project states that 'within the body of a healthy adult, microbial cells are estimated to outnumber human cells by a factor of ten to one. These communities, however, remain largely unstudied, leaving almost entirely unknown their influence upon human development, physiology, immunity, and nutrition' (my emphasis).
Please - take a deep breath and don't panic.
Yes, we still have some way to go to understanding what it is happening at a bacterial and virological level.
But, if we as patients - as well as that lumbering medical establishment, so slow to adjust - take a step back from the detail of our bodies then we may start to observe a few patterns in the complex mesh of human metabolic processes.
Too often we rush to doctors who prescribe the necessary treatment for the current complaint - stop that pain, cut that part of the body out, try this prophylactic treatment.
But how come several different symptoms, noted in different parts of the body by different specialists,are happening in the same body?
Should I be considered so dilettanteish for mentioning that, for example: an infected wound requiring amputation is attached to a diabetic body with increasing vision defects; or gastroenteritis suddenly occurs in a person with a heart condition given antibiotics for pneumonia; or a teenager with early onset arthritis in their joints also suffers with chronic fatigue and acne?
Surely if we push and pull our bodies around in a blinkered manner, as specialist doctors tend to, the microbial communities within will break out in to a fist fight too - and may enlist some viral thugs to join forces.

Brain-eating side effect noticed late

2009-07-27T19:57:00.000+01:00

Extreme rationalists in medical science often lambast “quacks” for “preying” on those suffering from chronic incurable illness by offering untested alternative treatments. According to them we should listen to the “professionals” and use only approved drugs, otherwise we are asking for trouble and probably putting money in the pockets of pseudo-doctors.
Meanwhile UK medical professionals have been loudly criticising the body in charge of NHS drug approval, NICE, for only allowing a drug called rituximab to be given to rheumatoid arthritis (RA) patients as a last resort once joint damage has already occurred.
Following a favourable clinical trial, the hope-inducing headline on the BBC website was “Drug slows early stage arthritis”, and the chief executive of the National Rheumatoid Arthritis Society moaned that doctors were 'not allowed to use this (drug)...when patients would benefit the most'.
But in May this year there was another, less appealing, headline about rituximab on a press release direct from US medical experts:”Popular cancer drug linked to often fatal 'brain eating' virus”.
The viral brain infection known as PML is fast moving as it destroys the tissues, causes forgetfulness and moodswings before killing the person after just two months.
The discovery that at least 57 patients taking rituximab had conclusively died of PML in a decade was unearthed by an important international collaboration of physicians called RADAR which spots any possible dangers caused by drugs after they are licensed.
And this discovery is not a one-off scare. Rituximab is a relatively new type of drug called a monoclonal antibody which acts on the body's immune processes. So far two other monoclonal antibodies have also been taken off the US shelves for their association with the brain eating virus.
Rituximab is mostly used as a cancer drug for lymphoma patients but is also licensed in the US for RA. It is also used 'off label' by doctors for lupus, multiple sclerosis and auto-immune anaemia.
It is in these patients that the danger has become clearer since, in cancer patients, loss of brain function and death within months may not seem unexpected.
But now there are three known deaths of RA and lupus patients on rituximab who had suddenly developed depression or dementia symptoms caused by the virus eating away the brain.
Dr Bennett of RADAR comments that “it was especially unusual for patients with autoimmune anaemia-like illnesses who have not received a large number of other drugs”.
I feel extremely glad that an organisation like RADAR exists. Following RADAR's urgent investigations Dr Bennett found that physicians had been reluctant to report cases of the virus in patients taking rituximab because the forms for reporting adverse drug events involve “a lot of work”. So the cases had gone unnoticed for over a decade.
So why is the National Rheumatoid Arthritis Society pushing this drug towards people who are suffering from milder forms of RA, which is not fatal like cancer? As Dr Bennett says:”People have been lulled in to a false sense of security that this drug is harmless and that it only does good things. No drug is perfect.”
Could it be that doctors (reassured by official stamps of approval) have prescribed drugs that may accelerate fatal illness, rather than restore life? Surely not?

Which bacteria = which illness?

2009-07-09T13:52:00.000+01:00

In bed in the dark of night but not asleep.

This can be a curse for those with chronic low level illness or constant pain. My personal suggestion to help relieve this is listening to the radio (using an earpiece if you don't sleep alone!)

To my delight when I was tuning in overnight two weeks ago I got to hear the world-renowned geneticist Jane Peterson on the incredible Human Microbiome Project which will investigate the links between bacteria and illness.

The format of the BBC World Service programme The Forum was perfect for the weaving discussion about the trillions of microorganisms that live on or in our bodies.

The project will link microbiologists worldwide as they plan to genetically analyse and name every new microbe they find!

All this is possible because of new techniques for identifying hard-to-detect bacteria such as mycoplasma. Previous in-vitro techniques were far too outdated to detect such intelligent microbes which naturally thrive in-vivo, that is, in a living being.

Intelligent? I hear you scoffing at that description of an organism as small as a fungal spore. Of course, we all believe the tag-line, don't we? - Kills 99% of all known germs! Gotcha microbe!

But the Human Microbiome Project is about identifying bacteria that we have never known! And they are intelligent critters.

One of the points Dr Peterson made was that we have only just begun to understand how bacteria in human hosts live in "microbial communities". Medical science is "a little bit behind" she admitted, in comparison to environmental science which already understands the interconnectiveness of microbes.

For example, donors of swab samples to studies within the project will be given clear instructions on which soap to use on their skin. Absolutely not any of those anti-microbial products! Why? Because some bacteria adore clean skin. And some microbes are more persistent than others. If you kill one species then a stronger one will take their place.

Which makes me wonder...why is it that when I have taken a short course of antibiotics, say for a chest infection, then my digestive tract reacts very badly, or I get other pains?

The NHS - even if it is "a little bit behind" - is surely right to shift towards a policy of specifically targeted antibiotic use. Hopefully we will soon know the reason why in much more detail.

The Human Microbiome Project has just announced $42 million funding for studies in to microbes involved in ulcerative colitis, Crohn's Disease, psoriasis, bacterial vaginosis, obesity, sexually transmitted diseases, esophageal cancer, paediatric irritable bowel syndrome and more. Quite a lot of interesting investigations to be going on with, I think.

Arthritis and gum disease?

2009-06-29T16:07:00.000+01:00

If you went to see your general practitioner and started talking simultaneously about having painful bleeding gums and arthritic knees, what do you think their response would be?
Are they the laid-back type who might ask you about your general health and suggest a multi-vitamin supplement with glucosamine? Or maybe they politely stifle a laugh and try to reassure you that this is a pure coincidence.
If you persisted in telling them you believed the two things were linked - maybe you had some jaw pain with the inflamed gums as the same time as the knee pain - how would they respond? Their body posture might become more defensive and they may lean seriously over the desk in a way which reassures you who the medical expert is.
If they agreed to treat both symptoms, it is likely you would walk out of the consulting room with two separate prescriptions; one for the mouth, the other for the knee pain.
Unfortunately most of our doctors are not scientists. And of course none of them have time to spend examining medical research journals - there are far to many of them. So they won't have read the Journal of Periodontology 2009, Volume 80, No.4.
There is a direct link between treating gum disease and improving Rheumatoid Arthritis, a joint study by periodontology, rheumatology and epidemiology specialists have concluded. They have given clear evidence to back up similar recent studies revealing this possibility.
Surprisingly, arthritis patients who received dental hygiene treatments, such as scale removal, and also advice on maintaining their oral health, subsequently found their arthritic symptoms reduced significantly.
The positive results were the same even between those on standard medical treatment for RA and those receiving the cutting-edge anti-tumor necrosis factor-alpha treatment. Who would have thought going to the hygienist regularly would keep arthritis at bay?
From looking at the abstract of this research it is not clear why such a link might be made. But all those gleaming TV ads for dental products show one thing - there is money to be had for research in to those nasty bacteria which cause dental disease.
Conversely there is not much money around for investigating a bacterial cause for arthritis.
Would a drug company spend money on investigating something with possibly wide-ranging epidemiological causes? I don't think they would rush to innovate and develop new drug patents for what could be a non-specific target market.
This area of research faces 'multiple challenges' according to a study in Current Opinion in Rheumatology (Epidemiologic approaches to infection and immunity: the case of reactive arthritis: Rohekar, Sherry; Pope, Janet). The Canadian researchers were aware of the 'significant evidence that infection and arthritis are linked' and reviewed all the current studies relating to the specific condition Reactive Arthritis (ReA).
Connections to ReA have been established from outbreaks of gastroenteritis and from other, less obvious, bacterial infections. The nastier the infection, the greater the risk of getting ReA apparently.
More careful epidemiological studies are going to be necessary, the researchers concluded, particularly as higher rates of self-reported cases of arthritis have been discovered in the population than first thought.
So, if you have a set of symptoms that seem completely unrelated, push for your doctor to take a holistic view - and book a visit to the hygienist just in case!

A modern parable for the chronically ill

2009-06-12T12:02:00.001+01:00

A security guard is sitting at his desk, a couple of token CCTV screens in front of him. In this very quiet building the security desk is tucked to one side, away from the gaze of people passing by.
Not much happens so it is unsurprising that occasionally the bored security guard puts his feet up and nods off.
On one of these occasions some brazen robbers take advantage of his nap and creep past the desk. They invade the inner office and tie up the staff.
They steal everything they can get their hands on and get access to the valuables in the safe - but the security guard is none the wiser.

Once the robbers have stolen everything and decided to set up their own illegal business there, they are a bit hungry. They call up a pizza firm and a bakery and impersonate the office manager to order some take-aways.
The pizzas and doughnuts arrive, but the security guard doesn't think this is suspicious and lets the delivery men deliver to the inner office.
The robbers are enjoying their new crime base and the free facilities but eventually get fed up with having to fool the security guard outside in the lobby. So they devise a way of sealing up the security guard's mouth.
Once they have attacked him, he is forced to remain at his desk as if he is on guard, but all he can do is shriek and groan through his sealed mouth. Now the security guard is aware of what’s happening but unable to tell anyone.

He is a conscientious guy so he decides to risk contacting the main security centre to call for help. But at the other end of the phone line the operator is alarmed and confused to receive several calls and hear nothing but a terrible moaning sound.
The security centre operators become quite distressed when the muffled screeches are repeated over and over again as the security guard keeps phoning.
Eventually the controller of the security centre takes a decision to stop these calls that are distressing his staff so much. He sends round a telephone engineer to the nearest exchange.

Soon the telephone line to the office security guard has been cut and they are no longer troubled by the awful calls.
They assume that the office staff and valuables are safe but the security centre has in fact let the robbers get away with the crime. The business originally operating from that sleepy office is now totally wiped out.

Have you noticed how modern Western medicine is devoted to describing what your main symptoms are and then prescribing specific medication to reduce or stop each symptom?
But consider the word ‘symptom’. When we experience pain or joint aches or digestive problems, what are these symptoms of?
Our bodies are complex organisms able to send us messages to tell us that something is wrong. If we remove these messages – these symptoms – then we don’t know anything dangerous is happening.
The security guards in our body are called Vitamin D Receptors. These form the major part of the body’s innate immune system. This is different from the adaptive immune system which moves to destroy any bacterial or viral ‘robbers’.
In our nice clean society the Vitamin D Receptors get sleepy because they don’t have much danger to look out for. But there are some very clever bacterial ‘robbers’ out there who know how to get past them.
Around one hundred of them can fit inside one human cell. They also produce a ‘slime’ which eventually can coat the Vitamin D Receptors and stop them communicating.

If your body seems to be sending you alarming and painful messages – symptoms - then it may be better for your long term health to listen to them, rather than cut them off at source with medication.
For that you don’t need a specialist. You need to have a holistic view of how the body works. In the past this may have been an area left to ‘alternative’ medicine but now some scientists are beginning to uncover how the body works as a whole mesh of complex metabolisms.
Why not make some further investigations to help yourself out of chronic illness and back in to health?