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?

Newsflash

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.

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.

Brain-eating side effect noticed late

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?

Arthritis and gum disease?

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!