My Recovery from ME/CFS/CFIDS and FMS and Complementary and Alternative Medicine (CAM)

Sophie Meredith


I haven't written for some years here. I do look back frequently and the cellular memories are strong. I remember the sensation of dragging a body around and perching an upright head full of protest when neither felt like my own. I remember the loss of identity and the panic that accompanies it.

And now here I am, with a 9 month old baby and well.  He was 10Ib 3 at birth and it was a 26 hour hike up the proverbial mountain of motherhood with no intervention and I am STILL well; well and supremely grateful for my recovery which came after 5 years.

Now, I am ready to just begin to look back on those painful but illuminating times. I attribute my own recovery largely to the love and support of close family, friends and especially my partner, Alison, who as well as providing a loving and nurturing space for recovery, supported me in, amongst many things, exploring Complementary and Alternative Medicines (CAM). There were also a few key medical professionals whose acknowledgement was a cornerstone and starting point for recovery. I hope that more GPs especially, can come to realise this as a crucial and useful part of their role, even when they don't have the answers. I have particularly to thank General Physician, Dr Oldmeadow who in lieu of all the answers, was able to offer not only the crucial acknowledgment to my partner and I of the veracity of my symptoms, but also suggestions for many alternative therapies that I might try.

As for what treatments finally worked and what helped manage symptoms, the list is long. Ayurvedic medicine, colonic irrigation, liver cleanse dieting, yoga therapy, visualistation and meditation, pranayama, raw juices, exercise physiology and graded  exercise, Sukyo Mahikari, fasting, supplements, naturopathy, CBT, counselling, cupping, kinesiology, osteopathy and massage all featured in my explorations with varying degrees of success. What is clear is that some or all of these things combined, eventually helped to get me where I am today. I also refused any drugs to alleviate the symptoms. My rationale is that this immune disorder is connected with toxins, and more chemicals were likely to further clog an overloaded system. I hope more research can be done into CAM and its benefits for people with illnesses such as ME/CFS where conventional medicine does not currently have answers. There is no shame in not having the answers and much sense in exploring what might.

6 months after I gave birth, I was dressed in a Triathlon suit at the starting line breast-feeding my baby and while others were impressed, few would have suspected the satisfaction I felt. Only those suffering with the illness or close to someone who is/has could really have appreciated what it might feel like to make such a recovery from ME/CFS and FMS. Thank you Alison, my darling wife, and to every person working in the health field who is keeping an open mind to the possibilities of Complementary and Alternative Medicine. I finished that race and am poised to help others do the same.

To see details of some of my aids to recovery view my 2009 post 'How I have been getting better with CFIDS' Sophie Meredith

A disinterested medical profession?

By Louise Wallace

ONLY a handful of doctors have signed up for free national seminars on chronic fatigue syndrome, prompting patient advocates to call for a change of attitude among health professionals toward the illness.

ME/CFS Australia invited Dr Byron Hyde, founder of Canada’s Nightingale Research Foundation for myalgic encephalomyelitis and CFS, to speak to health professionals around Australia this month on the latest research and treatment options.

The organisation expected an overwhelming response to the visit by Dr Hyde, who has more than 26 years’ experience treating the conditions and is the author of several reviews and two books on CFS.

However, despite efforts to promote the event to hundreds of general practices and medical students, ME/CFS Australia said the response rates were “disappointing” so far.

ME/CFS Australia CEO Penny Abrahams said the poor turnout across the country suggested doctors were not taking CFS seriously and did not see it as a “real illness”. As Australian Doctor went to press, a total of 22 doctors had expressed interest in Dr Hyde’s final presentations in Perth and Melbourne.

Blake Graham, president of the ME/CFS Society of WA, said the “pitiful” response indicated a lack of interest from health practitioners. It was also likely doctors opted not to attend because they underestimated the impact of CFS or felt they were unable to treat the condition, he added.

“A change of attitude is needed so practitioners can expand their knowledge and level of care,” he said.

Finding and eradicating the worm..

Impurities of Intelligence

Yoga teaches us to cure what need not be endured and endure what cannot be cured

By B.K.S. Iyengar from Light on Life

The whole educative thrust of yoga is to make things go right in our lives. But we all know that an apple that appears perfect on the outside can have been eaten away by an invisible worm on the inside.



Yoga is not about appearances. It is about finding and eradicating the worm, so that the whole apple, from skin inward, can be perfect and a healthy one. That is why yoga, and indeed all spiritual philosophies, seems to harp on the negative -- grasping desires, weaknesses, faults, and imbalances. They are trying to catch the worm before it devours and corrupts the whole apple from inside. This is not a struggle between good and evil. It is natural for worms to eat apples.



In yoga we simply do not want to be the apple that is rotted from inside. So yoga insists on examining, scientifically and without value judgment, what can go wrong, and why, and how to stop it. It is organic farming of the self -- for the Self.

To reach and penetrate as far as the fourth sheath is a considerable achievement, but I would be doing the reader a disservice if I did not point out that considerable achievements also bring in their wake considerable dangers. An obvious one is pride -- not satisfaction in a job well done -- but a sense of superiority and difference, of distinction and eminence.
It is an obsession in our modern society to focus on appearance, presentation, and packaging. We do not ask ourselves, "How am I really?" but "How do I look, how do others see me?" It is not a question of, "What am I saying?" but, "How do I sound?"

There are those, for example, who perform polished, well-presented, highly attractive yogasana. They are pleased with this, and with themselves, and are perhaps financially well rewarded for this outward excellence. When I was young, struggling to earn a living, to raise yoga in public esteem, to exemplify in my visible body the art and aesthetic beauty of yoga, I was always seeking to present asana in the best possible way, symmetrically, precisely, and in stimulating, coherent sequences. I was, when occasion demanded, a performer and an artist. This was my service to the art of yoga. But in my own personal practice I did not have this type of idea. I was concerned only to explore, to learn, to challenge, and to transform inwardly. Above all to penetrate. Yoga is an interior penetration leading to integration of being, senses, breath, mind, intelligence, consciousness, and Self. It is definitely an inward journey, evolution through involution, toward the Soul, which in its turn desires to emerge and embrace you in its glory.

You need a good teacher as guide so you will not hurt your body, overstretch, wrench, or nip the inner fibres, tendons, ligaments, mind, and emotions. This is yoga inadequately or wrongly practiced. I know; I have done it. But when yoga is only outward facing, exhibitative, and self-gratifying, it is not yoga at all. Such an attitude will deface and deform even the character you started out with. In class when pride rises or its complement, insecurity, as you look around at others, recognise it for what it is and send it on its way.

It is certain that there is much pleasure and satisfaction to be gleaned from life. Patanjali said the correct fulfilment of pleasure is an essential component not only of life but of liberation. But Patanjali also warned that wrong interaction with nature (where the afflictions or klesa still rule us) can bring about our confusion and self-destruction. The pursuit of pleasure through appearances, which I connect here to superficiality of intent, is quite simply the wrong way to go about things. To pursue pleasure is to pursue pain in equal measure. When appearance is more important to us than content, we can be sure we have taken the wrong turning.

The achievements of intelligence therefore also have their pitfalls, even more difficult to identify than the lure of the senses. We are only too ready to admit, "Oh, I can never resist chocolate." But how many of us would admit that we would willingly stab any colleague in the back in order to gain a promotion? We shy away from such self-knowledge as we instinctively feel that its ugliness lies closer to the Soul.

Most of us, at least in maturity, with or without yoga, fall into a dutiful routine, a comprehensive conduct of trying to "be good" and fearing the consequences if we are not. This is neither solution nor resolution, but it is a livable cease fire, or decency by dint of moderation. Controlling our desires is a continual pruning process, rather than a Damascene conversion.

When Half is Enough - Amazing Story of an incredible determination..

In life we keep complaining about what is or why we don't have.

Half the time we seem dissatisfied, though full-bodied and free to choose. Fat people say,"I want to be slim." Skinny people say,"I want to be fatter."

Poor people want to be rich and rich are never satisfied with what they have.

 

PENG Shuilin is 78cms high. He was born in Hunan Province , China .
In 1995, in Shenzhen, a freight truck sliced his body in half.
His lower body and legs were beyond repair. Surgeons sewed up his torso.

Peng Shuilin spent nearly two years in hospital in Shenzhen, southern China, undergoing a series of operations to re-route nearly every major organ or system inside his body.
Peng kept exercising his arms, building up strength, washing his face and brushing his teeth.




He survived against all  odds.

Now Peng Shulin has astounded doctors by learning to walk again after a decade. Considering Peng's plight, doctors at the China Rehabilitation Research Centre in Beijing devised an ingenious way to allow him to walk on his own,
creating a sophisticated egg cup-like casing to hold his body, with two bionic legs attached.

It took careful consideration, skilled measurement and technical expertise. Peng has been walking the corridors of Beijing Rehabilitation Centre with the aid of his specially adapted legs and a resized walking frame.

RGO is a reciprocating gait orthosis, attached to a prosthetic socket bucket.
There is a cable attached to both legs so when one goes forward, the other goes backwards.

  Rock to the side, add a bit of a twist and the leg without the weight on it advances,
while the other one stays still, giving a highly  inefficient way of ambulation.
Oh so satisfying to 'walk' again after ten years with half a body!

The Realities of ME / CFS / CFIDS

Warrior Women

It has been a long while since I wrote here and it will probably take the next few postings to elaborate on that. Part of me has been wanting to hide the fact that I have CFIDS; partly, I have been been so close to the edges of my envelope, that I dropped this by the wayside.

The good news is that this year has been the longest consistent period of better health in nearly 3 years. I have a new part-time job and some of my symptoms have abated dramatically. Extreme dizziness, word jumbling and muscle pains have remained loyal but I still am amazed at my overall improvement, despite bereavement, travel and work this year. I will attribute it in large part to Sarah Cabots 8 week Liver Cleanse plan and a REDUCTION in exercise. More on this soon (I still firmly believe in graded and gentle exercise).

I also recently went to a CFS support group in St Kilda and remembered how important it is to write our blogs in a community with so little recognition. Our voice must be louder. I recently watched a film ' I remember me' that emphasised the statistic that more women are suffering from CFIDS than Breast Cancer, but let's compare the funding...men have a vested interest in protecting our breasts. It also revealed how one research department managed to divert $13 million USD of funding - allocated to CFIDS - to other areas.

Hopefully, interesting debates will ensue from future posts as of course many, many men suffer from whatever this illness is. In my experience however,  there are significantly more women with CFIDS (some statistics say 75%). Why is this? Are more men suffering in silence because of the stigma attached? Does a grumpy man with chronic pains blend in more comfortably and subtly than a woman, especially if he is older? Or are there really just a lot more women with CFIDS?

In the meantime, here is a poem I stumbled across by Maria Jastrzebska for women AND men, battling in bed today:

Lying propped up
on a large cushion
in my woolly pink
dressing gown
is probably not
how you imagined her.

To be honest
I didn't either.
I rather fancied myself
dancing over hilltops
swirling swords in the air
all yells and flying kicks
or even leading
a mass protest rally
at least strutting my stuff
in trendy denim or leather
anything but like this.

Nevertheless
here I am
a warrior woman
in my pink dressing gown
dozing
or staring int space
watching the trees
through my window.
Imperceptibly
at first
ever so slowly
I am fighting back.

With every act of kindness
towards myself
every refusal
to blame
or despise myself
I strike back
against the men
in grey suits
who don't think
I'm cost effective
the ones in white coats
who don't even believe
I exist
all those too busy
or in too much of a hurry
to notice who I am.

From behind
my drooping eyelids
I am watching
with the stillness
of a lizard or snake.

I have learnt
the langour
and stealth
of a tiger
lying in wait
ready to pounce.

So next time
you come across
a woman like me
tired looking
in a pink dressing gown
just because
I'm lying low
don't imagine
I take anything
lying down.
Watch out
I have never been
as slow
or as deadly before.

NEW YEAR STORY - TAKE A STEP UP

One day a farmer's donkey fell into an abandoned well. The animal cried piteously for hours as the farmer tried to figure out what to do. Finally, he decided the animal was old and the well needed to be covered up anyway; so it just wasn't worth it to him to try to retrieve the donkey.

He invited all his neighbours to come over and help him. They each grabbed a shovel and began to shovel dirt into the well. Realising what was happening, the donkey at first cried and wailed horribly. Then, a few shovelfuls later, he quieted down completely.

The farmer peered down into the well, and was astounded by what he saw. With every shovelful of dirt that hit his back, the donkey was doing some thing amazing. He would shake it off and take a step up on the new layer of dirt. As the farmer's neighbours continued to shovel dirt on top of the animal, he would shake it off and take a step up.

Pretty soon, the donkey stepped up over the edge of the well and trotted off, to the shock and astonishment of all the neighbours. Life is going to shovel dirt on you, all kinds of dirt. The trick to getting out of the well is to not let it bury you, but to shake it off and take a step up. Each of our troubles is a stepping stone.

We can get out of the deepest wells just by not stopping, never giving up! Shake it off and take a step up! And finally, the donkey gave the farmer who tried to bury him a good kicking. And what is another moral for this story? - When you try to cover your buttocks, it always comes back and gets you.

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.

Should we take the H1N1 Vaccine?

Dr. Russell Blaylock: Vaccine Maybe More Dangerous Than Flu

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.

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.

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....

XMRV video helps explain the research....

XMRV VIDEO!

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/CFS. XMRV 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.”

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...

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.