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21.11.09

What's in our food packaging?




By NICHOLAS D. KRISTOF
Published: November 7, 2009
New York Times

Your body is probably home to a chemical called bisphenol A, or BPA. It’s a synthetic estrogen that United States factories now use in everything from plastics to epoxies — to the tune of six pounds per American per year. That’s a lot of estrogen. More than 92 percent of Americans have BPA in their urine, and scientists have linked it — though not conclusively — to everything from breast cancer to obesity, from attention deficit disorder to genital abnormalities in boys and girls alike.

Now it turns out it’s in our food.

Consumer Reports magazine tested an array of brand-name canned foods for a report in its December issue and found BPA in almost all of them. The magazine says that relatively high levels turned up, for example, in Progresso vegetable soup, Campbell’s condensed chicken noodle soup, and Del Monte Blue Lake cut green beans.


The magazine also says it found BPA in the canned liquid version of Similac Advance infant formula (but not in the powdered version) and in canned Nestlé Juicy Juice (but not in the juice boxes). The BPA in the food probably came from an interior coating used in many cans.

Should we be alarmed?

The chemical industry doesn’t think so. Steven Hentges of the American Chemistry Council dismissed the testing, noting that Americans absorb quantities of BPA at levels that government regulators have found to be safe. Mr. Hentges also pointed to a new study indicating that BPA exposure did not cause abnormalities in the reproductive health of rats.

But more than 200 other studies have shown links between low doses of BPA and adverse health effects, according to the Breast Cancer Fund, which is trying to ban the chemical from food and beverage containers.

“The vast majority of independent scientists — those not working for industry — are concerned about early-life low-dose exposures to BPA,” said Janet Gray, a Vassar College professor who is science adviser to the Breast Cancer Fund.

Published journal articles have found that BPA given to pregnant rats or mice can cause malformed genitals in their offspring, as well as reduced sperm count among males. For example, a European journal found that male mice exposed to BPA were less likely to make females pregnant, and the Journal of Occupational Health found that male rats administered BPA had less sperm production and lower testicular weight.

This year, the journal Environmental Health Perspectives found that pregnant mice exposed to BPA had babies with abnormalities in the cervix, uterus and vagina. Reproductive Toxicology found that even low-level exposure to BPA led to the mouse equivalent of early puberty for females. And an array of animal studies link prenatal BPA exposure to breast cancer and prostate cancer.

While most of the studies are on animals, the Journal of the American Medical Association reported last year that humans with higher levels of BPA in their blood have “an increased prevalence of cardiovascular disease, diabetes and liver-enzyme abnormalities.” Another published study found that women with higher levels of BPA in their blood had more miscarriages.

Scholars have noted some increasing reports of boys born with malformed genitals, girls who begin puberty at age 6 or 8 or even earlier, breast cancer in women and men alike, and declining sperm counts among men. The Endocrine Society, an association of endocrinologists, warned this year that these kinds of abnormalities may be a consequence of the rise of endocrine-disrupting chemicals, and it specifically called on regulators to re-evaluate BPA.

Last year, Canada became the first country to conclude that BPA can be hazardous to humans, and Massachusetts issued a public health advisory in August warning against any exposure to BPA by pregnant or breast-feeding women or by children under the age of 2.

The Food and Drug Administration, which in the past has relied largely on industry studies — and has generally been asleep at the wheel — is studying the issue again. Bills are also pending in Congress to ban BPA from food and beverage containers.

“When you have 92 percent of the American population exposed to a chemical, this is not one where you want to be wrong,” said Dr. Ted Schettler of the Science and Environmental Health Network. “Are we going to quibble over individual rodent studies, or are we going to act?”

While the evidence isn’t conclusive, it justifies precautions. In my family, we’re cutting down on the use of those plastic containers that contain BPA to store or microwave food, and I’m drinking water out of a metal bottle now. In my reporting around the world, I’ve come to terms with the threats from warlords, bandits and tarantulas. But endocrine disrupting chemicals — they give me the willies.



18.11.09

Should we take the H1N1 Vaccine?



An outbreak of swine flu occurred in Mexico this spring that eventually affected 4,910 Mexican citizens and resulted in 85 deaths. By the time it spread to the United States, the virus caused only mild cases of flu-like illness.


Thanks to air travel and the failure of public health officials to control travel from Mexico, the virus spread worldwide. Despite predictions of massive numbers of deaths and the arrival of doomsday, the virus has remained a relatively mild disease, something we know happens each year with flu epidemics.


Worldwide, there have only been 311 deaths out of 70,893 cases of swine flu. In the United States, 27,717 cases have resulted in 127 deaths. Every death is a tragedy, but such a low death rate should not be the basis of a draconian government policy.

12.11.09

Cold weather is to me what an oven must be to a paddle pop...


I tend to prefer to emphasise the things that help, but after a pretty rough day, perhaps it’s as well to share things that make CFS worse:

The Weather

Tropical Cairns is as wet today as the coast that cuddles it. I put on two pairs of trousers, a woollen jumper and a cardigan. This isn’t new. I used to wear a lamb’s wool jumper and jeans at the hottest part of the year in Cambodia. Cold weather is to me what an oven must be to a paddle pop. My circulation is poor. My limbs go numb very easily and fibromyalgia becomes worse. Poor blood circulation is a common CFS / ME Symptom

Toxic People

I have always been the kind of person that Mum and Dad would say, takes 'waifs and strays' under my wing. It has taken a lot of emotional energy. I remember my friend Eddie telling me that when he was training to be a life-saver, the first thing he was taught was how to fight off drowning people as they instinctively grab you around your neck. He could only be effective at a distance and when his physical well-being was under his control. It struck me at the time that could be a useful analogy in life. I try to avoid gloomy, mean or drunk people these days or people who drain me. I have so much less energy, I don’t want to exert it willy-nilly now, do I? When I notice I am draining myself with unproductive thoughts or behaviour, I try to bat those thoughts away or address the behaviour.

Cigarettes and Alcohol

Alcohol, fatty foods, caffeine and cigarettes wreak havoc in my body. I used to happily drink a good deal on a celebratory night as any friend will testify. A few months ago, my sister Lucy had cause for celebration, and, wanting to perform for her in a sense I suppose, I thought I’d have just a baby attempt at what average society deems normal behaviour. I slowly drank one and a half pints of cider, a small glass of wine and three cigarettes. Before that evening, I had had the best few days of health I had experienced in a long time but that weekend I completely crashed. I have been more careful since then and I have never had a cigarette again.

Too much exercise

When I went through one of my fanatical periods of exercise (apparently a sign of a predisposition for the CFS/ ME condition), and was training to do my first Triathlon, my sister Chloe used to beg me with tears in her eyes, to stop training. I thought she was over-protective and nagging at the time. I now get it that I always pushed too hard and that is one of the lessons CFS is here to teach me. Exercise is still a controversy amongst the CFS community with research suggesting that after exercise, brain circulation can get worse, unlike what happens with healthy people.

Post-exertional malaise or the customary severe rise in symptoms known as a ‘crash’ after exercise is a trademark of CFIDS/ CFS / ME. No exercise at all can lead to deconditioning which has severe consequences of its own. The biggest problem I have in walking the very slender path between too little and too much exercise, is that at the time I get into auto-push pilot and think maybe I will be okay. I have been trying to keep up in proper yoga classes again (I did a full month course with CFS before which led to an almighty crash) and it is only 48 hours later I really suffer. I have done that twice already this trip (suffered crashes as a consequence of so much exercise) but luckily, I haven’t been down for more than a full day on each occasion.

Travel

For Al and I, travelling together has proved to be the greatest of challenges! I don’t use the word ‘great’ as I would like to mean it. The movement, the changing, the noise, the planning, the DETAILS, the Departures, the arrivals, the meetings, the expectations, the travel books... the shirking of responsibility on my part as it all becomes way too much, and the ensuing pressure on Al and marital relations..

In May, Al and I had the fabulous idea of travelling from Rome to Cinque Terre to Pisa, to London, Stratford Upon Avon to Paignton back to Stratford, then London again, then La Rochelle to Saintes (here we rested and breathed with my parents for two weeks...thank God for this saving piece of planning) to Bordeaux to London, to Rome (stayed at a convent, that part was good for our cheeky souls!) to Venice to Rome a-bloody-gain to Bangkok to Phnom Penh to Yangon  to Moulemein to Phnom Penh to Bangkok to MELBOURNE AT LAST.

We tried to combine work and pleasure. It was great to see my family, but I barely got to see anyone and spent only twenty minutes with my best mate after a series of cancellations due to crashes along the way...It took me more than a month after coming home to be able to go to the work place even for a few hours a week. I was very ill and irritable. I have been up and down since then, but it feels like always a little bit more ‘up’.

Frowning and concentrating at a laptop for more than 30 minutes.

Ah, I always forget this until it is too late! Now, even, I haven’t had a rest since starting this article and if I don’t in a moment, a screaming headache and pain in my nose and left eye begins and my brain gets extremely foggy. I get irritable and unable to work out what I am reading or writing. I need to check I am breathing properly, not frowning and looking away from my station constantly. When my muscles strain, my pupils remain enlarged even when light is pouring in which causes a lot of pain. I promise myself online now that I will have a quick rest in ten minutes..

Stress

This is just the worst. It takes up SO much energy. If I worry or have an emotionally-charged argument, my throat immediately begins to swell my head goes fuzzy. With poor cognitive powers, I become defensive or protective like a wounded animal. As I am sure my Mum would be happy to point out, the description of a wounded animal has probably always held some truth; just another thing the CFS is here to teach I suppose. (See How I have Been Getting Better with CFIDS to see some ways I reduce stress)

Loneliness and isolation


Before going to the Doctors (with encouragement from Al) with my jumbled heap of wacky symptoms that led to a diagnosis, I was very alone with this. I had been to so many hospitals and Drs in Thailand and Cambodia when I lived in Cambodia. I had so many different illnesses that had no apparent connection. I had convinced myself that I had a brain tumour as I could often no longer remember the simplest things or put sentences together the way I wanted to. I clearly remember standing in the supermarket and beginning to cry as I stared at an aluminium tin in my hand with no idea what I was holding it for, or which market I was in, or why.  I could no longer listen to my friend’s voice messages as I would lose the thread and have to start again. I would forget what friends had told me and I became embarrassed to hang out with them as I could no longer keep up with them in conversation. This was the loneliest I have ever felt. I was away from home, so it was hard for anyone to judge the change in me.

This is why Doctors NEED to understand this illness to a better degree. The second Doctor I saw - an old fellow in a lop-sided bowtie - claimed that CFS wasn’t actually the name of an illness, just a name given out by Doctors when they couldn’t find out what was wrong with you. Just because you don’t fully understand something, doesn’t mean you need to deny and ignore all evidence for its existence now does it? I am amazed at the ignorance of the profession at times. On the other hand, I can see how Doctors are so pressured for time, they cannot read up on all new findings. When reading out my symptoms that I had carefully compiled in a list, he asked me to hurry up, we only had a few minutes... If I hadn’t already had a diagnosis from a more helpful young Doctor (Anna Paslow) then I don’t know where I would be today. Apart from helping me connect with my friends and family again, this is why this blog is so important to me. We need to create awareness and get funding for research.

Ah, there are plenty of other things but this is what I can think of for now. I am so lucky to have great professional help now in a superb Psychologist (Mary Spina) a Doctor and a Physician who have shown great respect and care and to have Al to cuddle up to every night even when my head is a messy, fuzzy ball. I can’t wait to be back in Melbourne with her.

8.11.09

How I have been getting better with CFIDS


I am typing from a functional university style-dorm in the tropical city of Cairns. Much has changed since my first entry. Here are a few things I have done to manage ME/ CFS / CFIDS that have, collectively, contributed to a pronounced improvement in health

Seeing a specialist CFS physician

I went to see Prof Michael Oldmeadow. If anyone with CFS /CFIDS / ME lives in the Melbourne area I would recommend you visit this rare, attentive and brilliant Doctor. He spent two hours with me on my first visit. He then insisted that my partner should come with me for my next visit which he squeezed into an evening slot the week after. When you have been suffering with something you just didn’t understand for two years, being squeezed into the usual seven minute slot, really doesn’t clear much up. Being referred to this highly practical and knowledgeable Doctor (who does bulkbill) was an unexpected victory.

Graded exercise

One of the myths Dr Oldmeadow cleared up for me was that exercise is bad for the health of a CFS sufferer. It is true, it knackers you out and you risk being down for a while afterwards but, he pointed out, our bodies are made to exercise and our immune systems suffer without it, as well as our moods etc. I had been staying away from my beloved exercise, thinking I was helping myself get better. He carefully explained how gradual this exercise had to be though, no matter how much you think you can do. I have been careful to heed his warning and have been doing a simple 20 minute easy-going gym session 3/4 times a week. My moods certainly began to improve as I exercised more. He recommends you do something like this at least every other day to really see the benefits. When I have done too much, I soon know about it.

Meditation

In March, just before being diagnosed, I had the best health spurt that I had had in over two years. I had been on a ten day Goenka Vipassana course in Healesville. These meditation retreats are available free all over the world. You do not look at anyone else, talk to anyone, or read or write anything for ten days. You would think your head would be filled with buried pains and thoughts. I didn't find this, however. It taught me how most of our chatter is detrimental to our health and it was almost like time was suspended – the world had gone on and I hadn’t been worrying on it’s behalf. Learning this technique has helped me ever since and I am much more centred when I sit down to meditate. I aim to do it three times a week for just 20 minutes at a time. When I used to set myself a target of an hour a day, I just stopped bothering at all.

Online CFS course

I joined an online CFIDS and Fibromyalgia self-help course that you just pay for the cost of your books for (you can apply for a scholarship to cover the extra $20 or $30 – which means writing a few paragraphs about your illness.) The course was very simple – you only had to write a few sentences and you shared your experiences with many others in the same position as you. I would recommend this course to anyone as a way of getting in touch with a world-wide CFS community. They helped me learn to set small targets for myself and to not feel guilty for my reduced output levels.

Pranayama

Breathing exercises, learnt as part of a yoga practice, make a huge difference, especially when I am anxious. In my experience, stress is the most effective catalyst for more extreme CFIDS / CFS / ME symptoms and pranayama can calm you down, and your muscles in a matter of seconds.

Working in a gentle and flexible working environment

I have taken on a part-time job at a charity call centre which has got me mixing with people and talking a lot. I get a buzz from being amongst other people and speaking to all kinds of generous people across Australia. As I do other work in my own time, it is very helpful that I can choose my hours week by week and I can change my shifts at the last minute when I am unwell. I have also learned to work differently. I used to be very animated and fun on the phones. I now have to be a lot more level but consistent. I am surprised to discover I can get the same results overall as before I used to be up and down with great days and bored/lazy days. Now I tend to be much more consistent.

Reading things to help me get organised

My computer today let me know that the C-Drive was full and asked me if I wanted to clean out unnecessary files and programmes. It is a good analogy for CFS. When your equipment works okay overall, you don’t check to see what things are taking up your space and energy. When you jam up and can no longer operate as you should, then you need to look into how to clear out the clutter. From this point of view, I have learned what a hopeful story this condition actually is for me. Here are two books that – once American cheesiness is nudged to the side – are very useful as tools for getting more organised and centred: The Seven Habits of Highly Effective People and How To Get Things Done. Both of these might be slow reads but it's making a big difference.

Good Nutrition

This always amazes me how crucial it is to my well-being. Just a glass of alcohol, a coffee or a chocolate bar can bring the system down. Conversely, a few days eating the super foods such as broccoli, sweet potato, pumpkin seeds, berries and spinach and my health levels climb and climb. I have experimented a lot with different foods and simply sticking as much as possible to the rich antioxidant ‘superfoods’, avoiding meat and drinking lots of water and avoiding fatty things or stimulants makes the world of difference. I also make sure I get as much iron and B12 in my diet as possible as CFS has made me anaemic. I also now try to go organic as a build up of chemicals seems to be a problem for CFS sufferers.

Supplements

Organic Spirulina for iron, memory and immune system, vitamin C for the immune System, Milk Thistle for Liver support, Cod liver oil for Omegas and immune support and Ginko Biloba for circulation, therefore memory and concentration. These are all purportedly particularly good for someone with CFS. I certainly have noticed the difference that the Milk Thistle has made. I am not sure about the others, but they may well have contributed to my overall health improvements though they do recommend you try to eat the food stuffs over the supplements.

Quality time with friends and family

As I get more organised, I purposely try to put time aside for family and friends. Since my first blog, I have got back in touch with many friends over the internet and have been able to meet up with friends who are now understanding of an unpredictable situation. There was a period when I blocked out most of my friends as I felt I didn’t have the energy, and was probably a little bit ashamed of how I was. Life has improved no end with the support of my friends.

Colonic Irrigation

In all honesty, I don’t know exactly what difference my three colonic sessions have made. It is hard to know which changes have contributed to what. Regardless, I loved getting this done. It feels like you are cleansing out from the darkest pits – which you are. It feels good to flush out pysically as well as mentally. For Melburnians, I would recommend the plush facilities at Aqua Health on Chapel Street

Yoga

I have built up to yoga on this list, not down, as I consider it an absolute saviour for me over the last two and a bit years. When I was at my lowest ebb and in a pool of confusion, low self-esteem and depression, yoga pulled me up and out. Check out the Yoga Journal for a good article on how it has improved people’s lives with CFS / CFIDS/ ME. I hear time and time again of the benefits, of course for all people but, particulary for those with CFS who struggle with some exercise. It is the holistic yoga practice that includes a philosophy, a way of being, the asanas (postures), pranayama (beathing) and meditation that I think really makes a difference. I would look for a really experienced teacher. For me, that is what has drawn me back to Cairns, to help Nicky Knoff with some yoga publications and to get some tutoring from an exceptional and wise yoga master. Nicky and her wonderful teaching partner, James Bryan, have offered real kindness, and encouragement. Putting yourself in good soil wherever the opportunity arises, seems to be a very good thing.

There are many other personal things that are helping me get better and manage this thing, not least hynotherapy, Cognitive Behavioual Therapy and getting quality time with my ever supportive partner, Al. More on those things later....

20.10.09

CFS /CFIDS/ ME link to XMRV - Retrovirus Similar to HIV, HTLV and Leukaemia Viruses


OVERTAKING CHRONIC FATIGUE: An electron micrograph 
shows the XMRV retrovrius in the blood of a patient with chronic fatigue syndrome.
WHITTENMORE PETERSON INSTITUTE.


From the website of M.E. Research UK, October 2009:

XMRV and ME/CFS — A stunning find

The discovery of a potential retroviral link to ME/CFS, which is estimated to affect some 17 million people worldwide, has certainly caught the world’s attention — no bad thing for an under-researched and often-overlooked illness! The scientific report, entitled “Detection of infectious retrovirus, XMRV, in the blood cells of CFS patients”, appeared online in Science, one of the most prestigious scientific journals in the world, on 8th October 2009 and described the findings of a consortium of researchers from the Whittemore Peterson Institute (WPI, located at the University of Nevada, Reno), the National Cancer Institute (part of the National Institutes of Health) and the Cleveland Clinic, Ohio.
ME Research UK welcomes good-quality outline applications from Research Units anywhere in the world for funding to replicate and/or extend the work on the possible links between XMRV and ME/CFS. Applications will be processed rapidly, and the peer-review process expedited, for such applications.

The findings

The headline finding of the research paper was that DNA from a human gammaretrovirus, xenotropic murine leukemia virus-related virus (XMRV), could be detected in the peripheral blood mononuclear cells of 68 out of 101 ME/CFS patients (67%) compared with only 8 out of 218 healthy controls (3.7%). The extent of this difference in proportions is unusual, as it is the norm for scientific researchers to find relatively small yet significant differences between patients and closely matched control groups; in the modern world, novel associations of such magnitude are rarely found between long-standing chronic illnesses and infectious agents. In addition to the headline finding, the researchers determined that XMRV proteins were being expressed in blood cells from ME/CFS patients at very high levels compared with controls, and through cell culture experiments they showed that patient-derived XMRV was infectious and transmissible. So, as well as being the first to show infection with this novel virus in ME/CFSpatients, the researchers appear to have been the first to be able to isolate XMRV particles from the blood, and to show direct transmission of this virus between blood cells — dramatic observations indeed.
What has caught the attention of the scientific world is that these observations seem to fit neatly, at least at a first glance, with what is already known about ME/CFS as a chronic illness. For example, viruses related to XMRV have been reported to be involved in damage to blood vessels and nerves, and natural killer cells (historically low in ME/CFS) are said to be susceptible to infection by XMRV. Also, the fact that retroviruses like XMRV are known to be able to activate some other (latent) viruses might explain why ME/CFS has been associated with a range of different viral triggers, such as herpesviruses like Epstein-Barr, over the years. Again, as Dr Judy Mikovits and colleagues point out in their paper, some of the most commonly reported features of ME/CFS include neurological symptoms and immune dysfunction with inflammatory cytokine and chemokine upregulation, and some of these observations could be accounted for by infectious XMRV in lymphocytes. The fact that such pieces seem to fit so well together is suggestive only at this stage, however, and a virologist at Tufts University was surely wise to say in New Scientist that while it’s not impossible that infection with this agent might cause a disease with neurological and immunological consequences, we don’t know for sure as yet.

The background

The scientific journey towards this discovery is an extremely interesting one, and includes several strands: prostate cancer, the RNAse L immune pathway, the discovery of the novel virus XMRV, and ME/CFSXMRV is a human retrovirus similar to HIV, HTLV-1 and a group of endogenous murine leukaemia viruses found in the genomes of wild mice (see  the informative presentation on retroviruses by Dr Jones of SAIC-Frederick/NCI-Frederick), and was first identified only in 2006 by Prof. Robert H. Silverman of the Cleveland Clinic, a co-author on the 2009 ME/CFS study. Prof. Silverman initially showed the presence of XMRV in prostate cancer tissue samples (PLoS Pathog, 2006), and subsequent work has confirmed XMRV protein expression in 23% of 334 prostate cancer biopsies (Proc Natl Acad Sci USA, 2009). Importantly, the men with prostate cancer initially studied by Prof. Silverman all had a specific genetic defect in their antiviral defences, the RNase L antiviral pathway which Prof. Silverman had been studying for 30 years, a lifetime’s work of scientific progression described in his fascinating essay, “Journey through the 2-5A/RNase L System.
RNase L is the terminal enzyme in the 2,5A synthetase/RNase L antiviral pathway, and plays an essential role in the elimination of viral mRNAs. The enzyme has been the focus of research interest in ME/CFS patients for nearly 20 years, and deregulation of this pathway in subsets of ME/CFS patients has been reported extensively in the scientific literature (reviewed by Nijs and Fremont, 2008). In ME/CFS, a wide spectrum of “cleavage” of RNase L can be observed (a phenomenon also seen in multiple sclerosis patients), and such altered RNase L activity profoundly affects cellular physiology, including apoptosis. Overall, an upregulated RNase L pathway in ME/CFS is consistent with an activated immune state and a role for persistent viral infection in the pathogenesis of the disorder — and it is because of these and other findings that many researchers have come to view ME/CFS as primarily a disorder of the innate immune system (see Klimas and Kineru, 2008). It was thanks to the insight of Dr Judy Mikovits and her team at WPI that the potential connection between RNase L dysfunction inXMRV-infected prostrate cancer and in ME/CFS was recognised, and an exploration undertaken to test for the presence of the virus in the banked blood samples in the WPI tissue repository, the largest ME/CFS sample repository in the world.

What we don’t know

A plethora of unanswered questions arise from this discovery. Chief among these concerns cause and effect: the researchers’ work has shown a suggestive, significant association between the presence of XMRV and a diagnosis of ME/CFS, but this is far from proof that the virus has a direct or even indirect role in the development or maintenance of the illness. This and other points have been well-put in a fine “perspective” in Science by National Academy of Sciences member and expert retrovirologist, Prof. John Coffin, and colleague Jonathan Stoye, who say, “There is still much that we do not understand. Whether the virus plays a causative role in either chronic fatigue syndrome or prostate cancer is unknown.” They go on to point out thatXMRV infection might be higher, by co-incidence, in the same locations as clusters of patients; that patients with ME/CFS or prostate cancer might be more readily infected due to immune activation; that XMRV might prefer to proliferate in cells that are dividing rapidly, and that the presence of these cells in these illnesses might simply make it easier to detect infection; and that the mechanism of viral transmission remains unknown, as does the prevalence or distribution XMRV in human or animal populations. In the aftermath of all initial scientific reports of a potentially major find, the unknown wildly exceeds the known — an exciting place for ME/CFS research to find itself.

The next steps

The researchers say that since publication they have continued to refine their test for XMRV, finding that 95% of 330 ME/CFS samples have tested positive for XMRV antibodies in the plasma (showing that these patients have at least been in contact with the virus at some time). They plan to continue their in-depth studies of XMRV to clarify its effects on the human immune system, and are clinically validating a blood test for the detection of XMRV in ME/CFS and other human diseases. And they will shortly begin the work of determining if any currently approved drugs, such as AZT, might be useful for suppressing XMRV. If these efforts are successful, human clinical trials to determine the most effective patient treatments in a clinical setting would surely be close behind.
At the same time, other independent laboratories across the world will be attempting to replicate the findings in their own local populations of ME/CFS patients. Since the WPI researchers used samples selected from several regions in the US where “outbreaks of CFS” had been documented (using patients diagnosed on CDC-1994 and 2003 Canadian Clinical criteria ), blood samples from patients in other countries (possibly diagnosed with less stringent criteria) might throw up very different results. Furthermore, it will be particularly important for independent laboratories to conduct double-blind studies to search for XMRV in ME/CFS patients and healthy matched controls, to strengthen the evidence base as a whole.

The long-term

This is a stunning find — like a comet from a cloudless sky to patients across the world. Yet it is too early to know whether the discovery will change the ME/CFS landscape or not. At worst, the discovery will be just one of a number of false dawns that have arrived over the years — albeit one that has brought, suddenly, the world’s attention to a neglected field largely ignored by mainstream biomedical medicine. In this scenario, XMRV might prove to be simply a passenger virus carried by an immune-depressed ME/CFS patient population, with little or no influence on the illness. At best, however, XMRV might be found to be the casual factor in the development and maintenance of ME/CFS, and a combination of anti-viral drugs will be found to eradicate the viral load from patients. One consequence of this “jackpot” scenario would be a demolition of the existing diagnostic criteria for the “syndrome” CFS (currently a ragbag of common non-specific symptoms, with many causes, shared with other illnesses), as well as the older criteria for myalgic encephalomyelitis. These would be replaced by objective diagnostic criteria based on state-of-the-art methodology — surely a welcome liberation for both CFS and ME patients currently parked in a Diagnostic Terminal. Indeed, the WPI group has already suggested that a new disease entity — X associated neuro-immune disease, or XAND — might arise from the rubble, implying (one assumes) that the one-third of ME/CFS patients found to be “negative” forXMRV in the WPI report would also acquire new, more appropriate diagnoses.
Like Dr Dan Peterson, medical director of the WPI, we are hopeful. As he says, “Patients with ME/CFS (XAND) deal with a myriad of health issues as their quality of life declines. I’m excited about the possibility of providing patients who are positive for XMRV a definitive diagnosis, and hopefully very soon, a range of effective treatment options.

21.9.09

Relationship Headache



From Tumbling Rams SLMeredith

We are two entirely different people to the ones yesterday.The ostensible reason is CFIDS. Perhaps it isn’t that so much as how our roles necessarily change and uncharted limitations are stretched.

After a happy week of feeling above CFIDS – the familiar creeping pains and fogs are crowding the skull like a pouring tap of trampling rams. My strengths simmer beneath and my faults rise to the surface - Irritability leading the pack.   I accept help ungraciously  but hastily change tack as I notice my reflection as a cantankerous old man. I endeavour to communicate. I explain that I feel like I have a tiny person inside screaming and pushing against this coffin of a lumbering body. Al surprises me with her patience and understanding (again) and reminds me that perhaps that body has something to teach me. The body is as much me as my will that bounces around trying to beat against it. I feel better quickly and cease to wriggle from the inside.

Most of us will have to deal with these kinds of frustrations as we get older and we are lucky in a way, to have to start now. Al and I are both building new parts of ourselves. I am not known for accepting help and Al is independent and fast-paced. I am genuinely in awe of how she rises to these challenges though we agree that it makes no difference who is in what seat; we could well be swapping over in the future. We are on a long road but - as commonwealth citizens hanging on for a royal telegram - we have have seventy years to get there...

15.9.09

Feeling Hyper with CFIDS/CFS/ME






I am well – perhaps steering close to hyper - today. I have been a lot better for over a week with only a piece of the weekend finding me feeling particularly ‘CFS-y’. I watch myself now swiftly dissociate from the illness. I am acting exactly as I said in my first entry

My head remains foggy and the muscles are heavier than they used to be, but I feel sharper and excited to engage with people. I am contentedly tapping away at my computer. I have been working today on a work project and went to work at a Charity Call Centre last night to earn some extra cash. I am also making study plans and mapping out a yoga course to teach in the future. I am thinking of all the things I can do with this brain that's polishing off its rust and grime. There is a rising but - as of yet - targetless anger saying ‘which bastard kept me down’? Sigh. It’s a long way to Nirvana.

'CFIDS Sophie' wrote:

"Inevitably, very soon after the outburst, I am forced to remember with a crash just what CFS is and I lie here with the consequences of having been reckless enough to have behaved like…a normal person.: "

Sophie today thinks inevitable is an irresponsible and defeatist word. Will I be proved wrong? The evidence is stacked against me. I suppose this is human nature. We always forget and it helps us get on with the show, but it also reduces our empathy. I am doing a six week online CFIDS course (http://www.cfidsselfhelp.org/online-courses) with some fabulous people but hearing their stories and even reading mine from a few weeks ago, I don’t feel like I understand so well, already.

I can see here, in theory, that I am a clear push-crash cycler. So, this is my new test of pacing myself while I feel well. It is also a test to understand how my body and mind are linked. When my symptoms are much worse, I am forced to remember. When I am able to hush my body because it gets my mind where it wants to go it takes discipline to listen to it and respect it. That discipline is fueled by a conscious effort to understand beyond the narrow periphery of my ego and this blog is already helping out with that.

I am choosing today to practice a lesson in intervention. I am intervening in a clear cycle and proving inevitability wrong: I am off to meditate the manic away.

28.8.09

Starting to understand CFIDS / ME / CFS


From Weighed Down by Sophie Meredith
She tells me to just get started. I protest that I want to write something interesting and engaging but honestly, when I feel well enough to consider that, I forget what it actually feels like to be down under the grimy covers of ME / CFIDS / CFS. Now, I am peering through one eye, my head is pounding. My throat is tight and lumpy like a clogged sink. My facial muscles want to be touched and soothed. My bones feel like they hurt from the inside-out. My whole body wants to be touched and warmed and soothed. I am tired but hyper and frustrated inside. I cannot sleep and I have an innate sense that it is not fair that I should have to in broad day-light. A vein in my right hand throbs irritatingly as I type. I feel alone. I desperately want someone to understand. I sweat between moments of stillness and rest and those of fighting to appear well and racing to do something, anything, with my day. I feel alone, but at least I am alone. In company, I feel confused, anxious, stupid and slow, unengaging.

We all can forget how ill we felt when we are all at once well again. When I am more able-bodied or able-minded, I forget how it feels to have a real ‘CFS-day’ (as I describe it to my girlfriend, Al). I feel angry, though, that anyone could have taken me too seriously, including myself. I think, ‘I am a brilliant and well person who should be trusted to do things. Give me responsibility! I can do anything the same as you. Give me a drink or a social group, and I will be as fun as I have ever been. Give me a yoga mat and I will show you the fit person that I am.' Inevitably, very soon after the outburst, I am forced to remember with a crash just what CFS is and I lie here with the consequences of having been reckless enough to have behaved like…a normal person.

When something’s bad, we may have a socially understood ‘event’ to remind us. People refer to times like ‘when I was in hospital’ and know that it MUST have been bad. We sometimes consciously leave ourselves a reminder. When Al fell off her bike, we took photos of the imposingly gargantuan bruises and though she may sometimes forget what a pain it was not be able to get around for so long, one glance at the photo, brings it all back.

With ME/CFS, I forget again and again only to remember all over. As with severe food poisoning, you think ‘please don’t let me ever feel like this anymore. Let this be over.’ ‘Normal’ has never been such a tantalising concept. You are apparently calling out to a higher being --whom you are not accustomed to chatting with -- out of sheer desperation. Next day you almost forget all about it.. until the next time.

I feel like this sometimes every other day, or week or morning or afternoon. I do not know how to predict it. I may be chatting away confidently when a thick fog sweeps from my nose up my forehead and into my skull and my left eye feels like it is shrinking. I begin to wonder why you are talking to me, or even, at the worst times, who you are in relation to me. I may become dizzy and want to lie down. I will either become completely vacant, or, if I try to fight it, frowning and irritable. I now know that I crave quiet and clear air, though I did not recognise that before I was diagnosed.

If I do not relieve my symptoms with rest or withdrawal, I deteriorate. I become anxious and irritable. I do not want to be alone, but there is nowhere else quiet enough. .. and yet, I must prove I am okay. I may look okay. What will this person think if I tell them I am tired or have a headache? How lame will that sound? I am not the kind of person who shies away from a chat or a job or a shopping expedition on account of a headache.

My reluctance to calmly and confidently allay these symptoms for fear of what other people might think, is, as far as I can work out at the moment, one of the few things in my control. I can work on this to make my life, and other’s around me, easier. I remind myself that I cannot make people understand but I can do what I need to do for myself and do what I can, to let people know.

I intend for this ME/CFS condition to teach me things for life about how energy is best spent, and what I take for granted. I do not have the energy to stress. It is a luxury I can no longer wish to waste my daily dosage on! That is currently an idea that I have yet to work out fully how to implement. I begin Cognitive Behavioural Therapy on Monday to help me work on managing this. Acceptance is my starting stone.

My conscious challenge in curing self is to work with CFS/ME/CFIDS not against it, and to accept help, not isolate myself. Just as an able-bodied person might remind themselves how lucky they are, I have to remind myself how fortunate I am with a miraculously supportive, proactive and loving girlfriend and a beautiful and kind family who are doing everything they can to understand and to have such persistent and loyal friends, despite my apparent withdrawal.