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!

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!

Patience, patience!

Chronic fatigue sufferers have had their hopes raised and then dashed again within just a few months - if you believe the headlines.
The trumpeted news last autumn was that a link had been found to a new retrovirus by a US charitable institute devoted to research for the benefit of Chronic Fatigue Syndrome (CFS) patients.
This retrovirus XMRV was first discovered in prostate cancer patients, then the Whittemore Peterson Institute found it in CFS patients and published the research in Science magazine on October 23.
Within one month of this research a UK research team carried out what they claim is a copy of the tests and then broadcast the absence of the retrovirus in CFS patients 'at least in the UK' on a pay-to-publish research website.
Their replicated tests didn't find a lower incidence of XMRV, which might have led to this link to CFS being carefully questioned as the primary cause: no, the team dramatically failed to find XMRV at all.
Chronic fatigue sufferers the world over had already been asking their doctors about XMRV; unsurprisingly, as there is currently no established medical cause or cure for the condition.
On the day the UK study was published on January 6 The Independent newspaper (UK) helpfully informed everyone: "Scientists' claim to have found the cause of ME is 'premature': British researchers say US team should have waited for more evidence of viral link before publishing findings."

Claims and counterclaims have been thrown across the Atlantic from research department to research department. A lot of the vitriol has been poured out by bitter CFS patients who feel abused and ignored. That's because one of the co-authors of the UK research is Simon Wessely - renowned (or infamous?) for prescribing and promoting cognitive behavioural therapy (CBT) as the only treatment for physiological symptoms of CFS.
The fact that this is the only official NHS treatment is undoubtedly an indictment of the British medical approach to difficult-to-diagnose conditions, but then again no one in the world has yet definitively provided a primary cause of CFS and presented sufficient research data to back it up yet.
Is the XMRV link strong enough? Do the US research findings and the first tests developed for the retrovirus necessarily prove that we have found a cause?
The UK research simply produced a negative result - should we conclude any positive possibilities from this? Many patients (and some top microbiologists) are critical of the UK's available laboratory facilities, so should we see this as a flaw in the research?
Or, as angry CFS patients previously pushed in to psychiatric treatment are loudly protesting, is this more about a UK medical establishment fighting back against wide publicity for a condition they would rather sweep under the carpet.
Even the experienced virologist Suzanne Vernon, who worked at the US Centers for Disease Control and Prevention before joining CFIDS Association of America, said: "It could well be true that XMRV is not present in the UK...but it is also possible that the technique used in the (UK research) was suboptimal due to the different methods employed."
I have to say I am puzzled by the UK team's desperate rush to start their own research project, which was still interviewing for an additional virologist on November 23 and submitted its results for publication on December 1. But at the same time I feel the Whittemore Peterson Institute has also rushed ahead - they have already licensed the first XMRV test.

This retroviral development may turn out to be a crucial piece of the bigger jigsaw puzzle that is autoimmune disease, but only one piece.
So little is known at the moment about the human innate immune function. Researchers and doctors are stabbing in the dark, usually directed by one vested interest or another, whether that be pharmaceutical profits or the feelings of bitter, desperate CFS patients.
For such a little-understood and yet widespread problem as chronic fatigue (which is a feature too of conditions like rheumatoid arthritis and fibromyalgia)there needs to be more thorough and properly funded research, with co-operation across medical specialisms and across different countries.
And not just research in to this or that bacterial or viral factor, but also of how effective our modern bodies are at defending against them. Why does our health keep getting knocked down so easily?

Herpes - not so simple(x)?

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.

Life too complicated?

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.