A terrific internet-savvy friend has found my links and I'll get them up again soon. I've been busy with visiting Couch Surfers and I'll write about that just as soon as I get a photo from them! In the meantime, I thought I'd post this quote from Dr Nancy Klimas, in the US, just for those who may still think ME isn't a big deal (though I'm sure all my friends are convinced by now!):

“My HIV patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my CFS patients, on the other hand, are terribly ill and unable to work or participate in the care of their families.

I split my clinical time between the two illnesses, and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have HIV. But CFS, which impacts a million people in the United States alone, has had a small fraction of the research dollars directed towards it.”

Click here for the link to the entire article in the NY Times.

I was on the phone for almost an hour, gazing out the window the while, watching nothing more than a couple of ships. Turned to go make my breakfast, and, a mere 15 minutes later as I'm setting the plate on the table by the window, look up in shock to see this enormous rig passing by. It is far larger when seen from my window than how it appears in the photo (I went up to snap these shots from the roof).

And just in case you're wondering - I know it looks lovely and sunny, but the temperature today is 15C/59F, and indoors without heating it feels quite chilly!

I generally need to rest - i.e. listen to a meditation CD or sleep - for at least an hour, often two, in the early afternoon in order to be able to function for the rest of the day. Today I persuaded myself that the rest wouldn't be necessary, and instead I'd do some work re-arranging my blog. Well, my tired brain has just managed to delete all my links - a collection that has been added to over the past five years. It's gone - just like that! I'll be sure to take my nap tomorrow.

Sold my first calendar! I'm thrilled!

The New World of Self-Publishing

There’s been a quiet revolution out there in the world of publishing. I remember attending a one-day seminar a little over ten years ago explaining all the ins and outs of finding an agent and getting published. “Never,” the presenter told us, “never use a vanity publishing house”. It would cost money, a great deal of money in fact, and we were wasting our time. Our work would not be taken seriously and would not be marketed.

Take a giant leap forward to the internet age and now anyone can publish their own work practically free of charge on the internet, all thanks to Lulu.com. Lulu is now an established and recognized way to publish. Books originally published on Lulu can, if successful enough, get picked up by the major publishing houses and republished. With Lulu you, the author, do all the work: design your own layout and cover and do your own marketing. It costs nothing – although Lulu does provide publishing “packs” for a fee that will guide you through the process and ensure a more professional looking end product. How is this possible?

Potential buyers of your product are guided to your product page at Lulu.com and when a product is ordered a copy is then printed and shipped to the purchaser; i.e. print on demand. On individual copies the author makes almost nothing. If, however, an author is confident of large sales and has a marketing outlet (a book shop or stationers, for example), the author can order large quantities at a reduced price and sell them him or herself, thus making a little more money in the process.



Personally I think it’s brilliant. We are freed from the tyranny of publishers and no longer need to even consider forking out vast sums of money to those rather shady vanity publishers. One good friend of mine has published his memoirs of working in the Sudan – “Even the Dead are Coming”, which you can find here:
http://www.lulu.com/product/paperback/even-the-dead-are-coming/5302779





I’ve had a shot at making some of my favorite photographs into calendars for 2010. I love my cats and have been taking dozens of photographs of them ever since they moved in with me. The best dozen are to be found on this cat calendar:
http://www.lulu.com/content/lulustudio-calendar/nickys-cat-calendar/7589282



I also put together a selection of my favorite photographs from Africa (many difficult choices with this!), and the calendar includes pictures from Rwanda, DR Congo, Kenya, and Senegal. You can find the calendar here:
http://www.lulu.com/product/calendar/nickys-africa-calendar---us-edition/6108265


All the photos can be previewed before you purchase. Both calendars have US holidays. If you would like one with UK holidays please let me know and I’ll put it together. Much to my annoyance an Australian version is not an option. Sorry!

The View From Where I Sit

We're having one of those days I love here - a balmy 19C (66F), sunny, and only the lightest of breezes. So I dug out my camera and snapped a few shots to show you what I'm looking at as I gaze out the window.

To my right the view is partially blocked by an apartment building, but partially hidden from view beyond it today is what looks like a fishing vessel that has been sitting there for several days now. The ships come and go. I enjoy all the traffic, from the tiniest one-person one-sail boat, to the ginormous cruise ships and container ships. The cruise ships are more frequent in summer and look like white apartment blocks floating past on their way to or from the Valletta Grand Harbour without stopping. Other working ships of all sizes frequently make anchor here, waiting for a storm to clear, waiting for a berth in the container port? I'm never sure.



Today is a public holiday here, so there are some sail boats out on the water, and early this morning before I was up I heard the sound of a small motor boat headed somewhere - Gozo? On sunny weekends in the summer and early autumn the blue water is full of white sails and luxury white motor launches.


This is the street in front of my flat. To the left, a couple of miles further down, is the original resort area of St Paul's Bay. It has been overtaken in popularity by the area of Bugibba/Qawra where I now live. Opposite my flat there's a semi-abandoned house (you can see the peeling yellow paint). This happens a great deal here. Many people own two properties, one inland, one by the sea. As they get older the sea-side property is used less often and gradually not at all. Then someone dies, inheritance battles ensue, and in the meantime properties quickly decay. Saddest is seeing old street front buildings lining the popular urban bays such as Gzira, Sliema, St Julians where the peeling paint, rotting window frames, and weed-sprouting walls of abandoned buildings lend a seedy air to otherwise prosperous resorts. In the meantime over 50,000 unsold newly built units in bleak modern blocks of flats sit empty.


This photo was taken with the zoom, so what you see here I'm not able to see with my own eyes. What you see in the mid-foreground is St Paul's Island, with a statue of St Paul, where the disciple Paul landed, shipwrecked, while being taken to Rome. Thanks to him Malta became an early outpost of Christianity and today there are (apparently) more churches than days of the year for a population of less than half a million people.

In the distance what you're looking at is the island of Gozo (known to Maltese as Ghawdex (aow-desh), and the enormous (and hazy in this photo) church to the right is the rotunda of the parish church of St John the Baptist in the village of Xewkija. The dome is higher than St Paul's Cathedral in London and the nave can seat 4000 people (around three times the village's population).

Back to the foreground and you may have noticed the odd-looking items in the water. These are fish farming ponds, full of tuna being fattened up for eventual sale in Japan. Raw tuna is very popular for sashimi in Japan (and Hawaii!) at this time of year.

That's my view today. I hope the weather stays good for the visitors I'm expecting!

Christmas Gift Challenge

Are you looking for Christmas gifts for people in your life who already have everything they need? A really great idea that has been catching on more and more in recent years is to give a gift that gives twice or even several times!

Giving a gift through one of the programs that provides a goat or a cow or school fees or even the gift of sight can change the life of a young person in more ways than one. How does it work? You go to the web site of the charity you would like to support; choose the gift; your relative or friend will receive a card with a message from you with details of the gift; a child who really needs help will receive the gift.

These days it can be difficult to decide which organizations to support, and which ones are reliable. I've put together a list, with links, to ten organizations which I either have direct experience of, or I know enough about them to feel confident in recommending them based on over ten years experience working in international development.

I've published this list with additional information over on HubPages as that way I hope it will get more exposure. I hope you'll take a minute to 'migrate' over to:

http://hubpages.com/hub/Top-10-Christmas-Gifts-that-Give-Twice

Have fun shopping!

ME Blogs

Blogging is a great outlet for people with ME, giving those with a gift for writing the chance to express their feelings and explain the illness to friends. Younger people make up most of the bloggers and there are a small number that I follow regularly. Whenever I'm feeling low, frustrated and resentful about having this illness I do my best to feel grateful that I have it now, at over 50, and am much better situated to cope with it. I feel tremendous sympathy for young people with ME. This is a particularly devastating illness for the young - and children as young as 3 have been known to get it.

One of the blogs I follow is called "Dashed Hopes and Measured Steps" written by a young man living in California. I'm quoting from him now, because I found a recent post of his particularly moving and also informative. His blog address is here:
http://pathogensoup.blogspot.com/

This is what he writes:

Every lesson I've ever learned from this illness has boiled down to what it means to be human, but I've always looked at this illness as part of the journey to who I want to be. I want to be successful and I'm starting to realize I may never be able to accept my place in society as it stands now. In fact, every year gets harder to accept, because I lack the ability to be fully in the present. I need to tell myself several times an hour to stop juxtaposing the past with present because they become more heartbreakingly unfamiliar with each other every year.
...........

Our illness is so debilitating yet there's no single way of describing it to entrench the severity within anyone's mind. My own mother had no idea how debilitating this was until last year, when she traveled with me to Germany and saw how I limited my walking to 20 minutes a day. If I don't sleep 9 hours, I feel like death tomorrow. If the room I sleep in isn't virtually mold and chemical free, I can't sleep. If I feel abnormally great today, I guarantee I will feel equally sick tomorrow--in math, we called this "inversely proportionate." If you Rufie me and stuff a pastry down my throat, I feel like death. If you don't let me sit down after 10 minutes, my heart feels like it's trying to stab itself. Any stressful situation send my sympathetic nervous system into overdrive and takes hours to calm back down. Are these actual symptoms of this disease not bad enough on their own? Why the duplicitous outward appearance of health to cause suspicion and misunderstanding from others that care about us?

Hey Big Guy, what were you smoking when you drew up our illness? "Say Angels, wouldn't it be a great social experiment to compare the psychological damage from, say, HIV and cancer to that of feeling just as ill but having no one understand WTF they're talking about?" "By Jeezes, yes it would!!"

Going Commercial

Today, 3 December, is the International Day of Persons with Disabilities (designated by the UN). In the past, on rare occasions when I tried to imagine what it would be like to be disabled, I would imagine myself in a wheelchair or maybe blind, and wondering how I would cope. I wondered if I would be brave and work hard to overcome all obstacles like some amazing disabled athletes or scholars manage to do. What I never - ever - imagined was invisible disability; the type of disability that others cannot see and thus leads them to think that maybe you're 'putting it on' without stopping to consider what you might lose - rather than gain - by such an action. I have lost my job, my income, my social life, my freedom of movement, the ability to enjoy a long walk, and even the ability to enjoy a chat with friends. I have been refused insurance payments that were rightfully mine; where I live now I am not eligible for welfare payments of any kind, and the cost of living is so high where I might be given welfare that moving would be pointless. I am struggling to find a way to make a living with the one or two hours a day when my brain might be said to function. Hence my decision to give in and have advertising on my blog. I don't expect more than a few pennies a week - but it's a start. I don't like some of the advertising, but I'm not sure how much choice I have over that. I apologize in advance to anyone who is offended by any of the adverts.

Health

I have a couple of friends out there who are having some serious health problems right now and my thoughts are going out to them. Our health- mental and physical health - is the most important asset we have. Without good health our lives become far more limited and difficult. So to everyone reading this I'd just like to say: make good health your priority in life. With good mental health we can better love our families; with good physical health we can do a better job at whatever it is we are here for. Take your life one day, one hour, one minute at a time. Value every moment and make the best of it that you can. Whatever you have is enough, at this moment you need nothing more.

Moving

I'm in the process of moving to a new flat. The work of moving is being spread out over a week so that I have plenty of time to rest and recover in the afternoons, following mornings moving possessions, getting them sorted and put away, and the old flat cleaned. Three more days to go. Unfortunately, even with my precautions, I'm still getting stressed. I lie down in the afternoon but don't fall asleep - or if I do, just for a few minutes and then I'm awake again - and when I get up again I feel just as dizzy, tense and anxious as before. The water delivery guys found the new flat without difficulty. The internet company is another matter. Even though I filled out the correct forms a couple of weeks ago to transfer my connection to the new flat, it still hasn't happened. I've called the Go office twice, talked to four different people, and still can't find anyone who seems to know what's going on - or rather, not going on, with my connection. At the moment I'm still connected at the old flat, but it's looking increasingly obvious that I'll be without a connection once I finally move in tomorrow. Grrr! I shall ask them for a rebate on my bill. Wish I could ask for compensation for all the stress they are causing me.

Taking a Battering

The winds have been howling all night, palm trees are thrashing and threatening to take off, and my cat Fynn is frustrated because he can't go out - he hates the wind even more than I do. When he gets really desperate to be in the garden he crouches low, ears back, and dashes from the door to the outside stairs. But at the moment we have gale force 8 winds (approx. 35 knots/40 mph) battering and shaking the windows and that's too much for him. Too much for me, too!

"A Case of Chronic Denial"

An excellent and interesting article about 'chronic fatigue syndrome' and the failure of the Center for Disease Control (CDC) to take it seriously by Hillary Johnson in the New York Times a couple of days ago. Now that we know almost for certain that this serious illness is contagious the shortcomings of the CDC become even more apparent. Someone should pay for this!

http://www.nytimes.com/2009/10/21/opinion/21johnson.html?_r=1&ref=opinion

Old Friends (and new ways of connecting)

I enjoyed a special treat this afternoon: 90 minutes chatting with two old friends via Skype. The three of us met as green graduate students at Cornell University around this time of year in 1983. Wow - that was twenty six years ago! Hard to imagine. That was the first year I used a computer; at that time we were required to write all our course papers on the mainframe terminals available in computer labs around campus. I'm sure we never imagined that one day we'd be talking to each other across continents via laptops. For most of the intervening years we've been separated by thousands of miles, only meeting up occasionally. Today Sue and Jacki were together in Boston and took advantage of that rare event to talk to me. I love the way that Skype allows us all to chat together at the same time. Hope we'll get together in person one day!

Breaking News!

This is an exciting day for people with ME. It looks like the folks at Whittemore Peterson Institute (see link at right) have come up with the goods. They've found a clear link to a retrovirus, and it looks like a blood test is on the way.

More details can be found here:

http://www.wpinstitute.org/xmrv/docs/wpi_pressrel_100809.pdf

and

http://www.cancer.gov/newscenter/pressreleases/CFSxmrv

Addicted to Reading

One reason for not writing more blog posts is that I get caught up in reading other people's blogs, or Face Book posts, or the news, or whatever else is in front of me. "I'll just read this" is what I'm thinking, and before I know it a few more hours have slid by. I'm the sort of person who'll sit and read the back of the cornflakes packet rather than eat without reading.

This week I began an on-line writing course based in NYC. This will now force me to write every week, although I know I'm going to spend hours reading the other participants' work too. Our first chat session was Monday evening NY time - which was 2 am Malta time. I managed to get myself up, but then my cats woke up too. Fynn was convinced that if I was up then it must be morning and therefore I should let him out. He proceeded to yowl and push pens and papers off the desk, so I ended up playing with him while trying to participate in the chat (which, fortunately, was written). Actually I'd imagined that 'chat session' meant we'd all be talking to each other and there'd be a row of video faces on my screen... but it seems technology hasn't quite come that far. Given the cat problems, not to mention problems arising from getting up at 2 am, I think I'll skive future chat sessions. After all, I can still read them later.

Orthostatic Intolerance

After a few good rain storms we're having perfect weather right now - if I could freeze Malta's climate at any one point in the year, this would be it. Today we have blue skies, a few puffy white clouds drifting here and there, 25 C, around 70% humidity (lower would be ok too), and a light east northeast breeze. I'm enjoying the weather from my patio and the couch, but frustrated because I had really hoped that with the cooling weather I'd be able to get out more. As it is, on-going dizziness has kept me tethered. I may have worked out the problem: orthostatic intolerance (OI) is a chronic state for many people with ME. OI is a condition in itself (there's a reasonable discussion of it on Wikipedia), but it's just one more of many symptoms experienced by MEites. One solution to chronic OI is to drink a very large amount of water, more than two liters per day. Now, I'm only 5'2", and I find it quite challenging to drink that much water - not to mention the hassle of keeping track, and all the bathroom breaks, and the vast amount of toilet paper used up in the process! Oh, and the cost of water - here in Malta tap water is undrinkable, and I buy mine in 19L bottles which are delivered, collected, and reused. Nevertheless, now that I'm aware of the problem I'm chugging the stuff down just as fast as I can, and hoping I'll be back on my feet and out taking afternoon walks again soon.

What's for Dinner?

When you spend as much time as I do taking power naps on the sofa, there's not much time left over for less exciting activities such as cooking and doing the dishes. When my blood pressure is having a good day and I can keep myself vertical for at least an hour at a time, then I cook a big pot of something satisfying, with plenty of protein and a garden full of fresh vegetables that take half an hour to chop up. This will last for a couple of days. But there are in-between days when the pot is empty, and having a snooze is a more attractive proposition than doing either the washing up or cooking. Unfortunately my appetite hasn't noticed that I'm expending less energy and still makes urgent demands on my attention.

At around 1 pm today I wandered into the kitchen and realized that the pile of dirty cookware and utensils left me few options for lunch. I resorted to my emergency tuna fish salad: quickly washing my one good chopping knife and retrieving the only clean board left out of three, I chopped up half a small red onion, a couple of tomatoes, and a third of a yellow pepper. On top of these I emptied a small tin of tuna fish in olive oil, a generous sprinkling of pumpkin seeds and sesame seeds, and then a spoonful or so of capers. When I remember I add some nori flakes - but I forgot those today. Lunch ready in about ten minutes.

Do you have any quick and healthy meals to share? Healthy for me means no bread, no fruit mixed with vegetables, no preservatives.

Now, what's for dinner?!

Picking up... cooling down.

After my 'crash' two weeks ago I'm gradually picking up again - I won't say "returning to normal", as there is no "normal" for me any longer. At least I'm not spending all day on the sofa (just a couple of hours), and I've been able to go out for a walk along the sea-front again.

Evening walk along the Qawra sea-front.

This morning I was browsing the "Life as we know it" blog and found this link to an "open letter to those without invisible disability or chronic illness" which I think is worth sharing: http://notdoneliving.net/openletter/id

Tourists are still here in abundance, enjoying breakfasts in the open and lining up for the buses; the locals are still parading on the sea-front on cool Sunday evenings - I know, because I can see them from the roof of my flat. But we've had a few short rain storms, the wind is up, and temperatures are dropping rapidly. I call it the start of the rainy season; 'autumn' or 'fall' doesn't quite fit here, as there are no leaves turning yellow, and this is the season when farmers begin putting compost on the fields in preparation for planting.

Another Qawra sunset photo!

Transitions

I passed a neighbour yesterday, an old woman with white hair, wearing a loose shift covered in flowers, starting to bend over and shuffle. “It was cooler today” she remarked. If it was, I hadn’t noticed. I’m still changing my shirts three times a day, and you probably don’t want to hear about the various skin problems I’m experiencing thanks to all this heat and humidity. But there are other signs of summer coming to an end: other neighbours packing shopping bags with bits and pieces of their belongings, stuffing them into cars for the short but traffic-clogged drive back up the hill to their winter homes in Mosta or Birkirkara or Balzan. The group of young people in the next-door flat, acrobatic performers from Bulgaria and the USA working here for the season have left. They’ve been a lively and friendly presence during the summer. I went out to my local mini-supermarket at 6 in the evening – unthinkable due to the hot sun just a week ago. I feel like I have evenings back again, though just for a short time, before they disappear into the night of winter.

Relapses are made of this…

Anyone with ME knows that relapses are a fact of life. I should have seen it coming, the gradual increase of fuzziness in my head a warning sign, but optimism always wins and two weeks of feeling better (if not exactly ‘normal’) had led me astray.

Yesterday began almost as usual, except for feeling tired as I unzipped the mosquito net. The dizziness began unperceived, until at a certain moment I felt as if I’d tried walking around wearing a pair of half-inch thick glasses belonging to a myopic friend. From there I began to wonder if I’d been practicing my whirling dervish act for too long, and after a short phone call at around 10 am I had to give in and lie down.

I call these “lost days” – the days when I remain horizontal the whole day. If I’m lucky I can read a little. Mostly I sleep until the feeling of two bottles of wine too many along with a blow to the back of the head with a blunt instrument has begun to wear off, leaving me with a simple headache and low-grade fever.

Ice Cream Heaven

I must admit to a passion for very good ice cream. When I was young my mother made ice cream at home using tins of sweetened condensed milk that I eagerly dipped a teaspoon into when I could get away with it. She had no special machine, but after an hour or so in the freezer, the tray would be brought out again, the icy mixture beaten in the Kenwood mixer, and then placed back into the freezer. The soft-serve ice cream in a cone with the “99 flake” from the summer ice cream van was a novelty, but the taste didn’t compare to my mother’s.

In the US my favourite ice cream is Ben & Jerry’s with wonderful wacky flavours such as “Chunky Monkey”, “Cherry Garcia”, and “New York Super Fudge Chunk”. Hilo Homemade in Hawaii was another favourite with flavours adapted to local taste: ginger and green tea among them! Here in Malta there’s clearly Italian influence at work; although the supermarkets are full of commercial brands of ice cream, locally made ice cream can also be found in the holiday resort areas. Here where I live – which could be either Qawra, Bugibba, or St Paul’s Bay depending on your interpretation of local maps – a narrow side street hides the best ice cream parlour I’ve found: “sotto Zero”, a gelateria making their own artisan gelato fresh daily on the premises, in full view of happy customers.

Sotto Zero is about twenty minutes’ walk from my flat, going at a slow pace. I can only get there when my energy levels are up and I’m feeling better than usual. One evening, a couple of weeks ago, I set out and had to give up half way there – my legs just wouldn’t carry me, and, disappointed, I had to admit that forging ahead was not in my best interest. The evenings I do make it, and can enjoy the delicious hazelnut and chocolate “Baci” gelato, I enjoy a double treat: the ice cream, and the pleasure of knowing I was well enough to make it there.


Hmmm, not sure about the blue smurf, but their vanilla is made with eggs and real vanilla bean - delicious!

Where in the World?

If you could choose to live anywhere in the world, where would you like to be? Why do you live where you are now? Is this where you were born and grew up, where your parents, grandparents, cousins, aunts and uncles live? Or have you been transplanted here in the search for work, for security, for a better life?

But if you could choose, and had the freedom to move, what would the criteria be? A good job, never mind the environment? Or clean air, quiet country lanes, a mountain view? Maybe the excitement of city life with theatre, concerts and shopping close by?

My own itchy feet are beginning to tingle again. The flat I'm renting is in the process of being sold and I'll have to move out around six months from now. I thought I'd just look for another flat close to this one - until I saw a notice of planning permission sought for the building next door. Construction in Malta is no joke, and is impossible to avoid. It's noisy - really, really noisy - thanks to the machines used to cut limestone blocks and tiles; it's dirty for the same reasons, the thick grey dust coats my windowsills even now; and it's slow and never stops - even in this recession. Ernle Bradford, writing about the Knights of St John in 1972, noted "Malta is in fact a giant stone-quarry... and from neolithic times onwards it seems as if this mass of easily-quarryable stone has induced a paroxysm of building in the island's inhabitants." (The Shield and the Sword: Ernle Bradford, p.204)

If you have the perfect place in mind: peaceful (in all senses of the word), with green trees, a blue ocean, glorious mountains, and - of course - affordable accommodation, let me know where it is!


Sun setting behind Gozo, viewed from Qawra, Malta - not as peaceful as it looks.

Where were you on the 31st July 1966?

I'm not a football fan, but the sense of excitement watching the World Cup final between England and Germany, which went into overtime, on that sunny summer Saturday afternoon has never left me. I was at the house of a school friend in the leafy green sleepy town of Harrogate, back in the days when I could take off for the afternoon on my bike, no questions asked.

The years and other World Cups slipped by without my noticing. It was only in 2002 that I became aware of the international soccer tournament again, this time because I was watching in the compound of UNTAET - the UN mission to East Timor. There were supporters for every team in the audience around the TV screens, always someone ready to cheer on their countrymen. I managed to repeat that experience while working in DR Congo in 2006, surrounded by MONUC peacekeepers.

In 2010 the World Cup will be held in South Africa. Hundreds of thousands of South African children will be watching the matches at the stadiums and at home on television. That thrill and exhilaration will be something to remember for the rest of their lives.

****************************************************

Football for Peace: teenage girls and boys from different villages get ready to play in South Kivu, DR Congo, 22nd September, 2007. Most children in African countries play in their bare feet using a football made from plastic bags tied up with bits of string.


The girls' team with their coaches.



The boys' team is ready to play.



Only one of these girls is wearing football boots.



Opposing girls' teams line up: note the state of the pitch!

Buses take energy

About once every four to six weeks I feel like I've saved up enough energy to undertake an activity more demanding than my usual routine. This always, without fail, ends in another crash - but I go anyway. Yesterday I took the bus into Sliema, a 25-minute bus ride from here. There is actually a printed schedule for this service, posted up at the bus stop. I arrived ten minutes early, because you never know your luck. The bus came ten minutes late. I sat next to my neighbour, an American who lives in Paris and is working here for the summer at the Mediterraneo Marine Park which the bus passes on the coast road towards Sliema. He and two other park employees rang the bell for their stop. The driver, ignoring the bell, rattled past and only slowed down several hundred yards later. The three young people were not amused, but didn't waste their time complaining.

Two hours on, well into the heat of the day, my shopping done and visits concluded, I headed for the bus stop at the Sliema Ferries, only to see the bus I was hoping to catch pulling away - on time, of course! The next bus was due in twenty minutes. It never showed. The scheduled bus after that finally came along ten minutes late. The driver must have done his training in a dodgem car and I seriously wondered if we'd make it back to Qawra without hitting another vehicle.

My brain was fried for the rest of the day. For hours I gazed stupidly and unproductively at the computer screen instead of taking a proper rest. For dinner I ate half a packet of corn cakes with butter instead of eating a sensible salad. When I went out to drag in my unwilling cat from the garden I almost got into a fight with a neighbour because I had difficulty explaining that I had not done what she thought I had done... and now I'll begin saving up my energy for the next escape from my prison with a view in six weeks' time.


Maltese bus - photo taken by a friend visiting in January.

Cat Companions

My two cats, Fynn and Rushdie, have totally different characters. Fynn, the younger one, is totally a morning kinda guy. Up at the crack of dawn, meowing outside my bedroom door, he can't wait to get out into the garden below and start enjoying the day. Rushdie doesn't do mornings. She ignores Fynn, ignores me. Highly communicative, affectionate and lively later in the day, the early morning finds her still dozy on her favourite armchair.


Early morning yawn from Rushdie.



Fynn chasing the laundry.

Good Companions

Polish Couch Surfer Writes Malta Blog!

My two Polish Couch Surfers moved into their own flat last night. One of them, Peter, is a 21 year-old student of International Relations and has begun writing a blog about his experiences here in Malta. I often find it interesting to read about what other people find quirky and strange in a place that I know well. If you're interested in such musings too, Peter's blog can be found here: http://www.maltasmellsnice.blogspot.com/

I'm impressed by his writing skills in English. I wonder how many British, US or Australian 21 year-olds can write as well in a second language? The general lack of second language skills among young native English speakers is a sad indictment of the arrogance of the English-speaking world.

Hot and Humid

This is the time of year in Malta that reminds me of Timor. I'm pouring sweat just sitting still. Yesterday I was out for my fortnightly trip to the supermarket in Birkirkara (often written B'kara) with my friend Lenore, and we were reassuring each other that the end of summer was in sight, "only four more weeks of this weather", and "the sun's setting earlier these days". Yes, I complained all winter about how cold it was, and now I can't wait for summer to end! But at the moment I'm stuck indoors most days from around 9 am until 7 pm because the sun is simply too strong and too hot for my body to take - even equipped with dark sunglasses, hat and parasol (well, my umbrella). Roll on September!

The Elephant in the Room

I really, really need to get into the habit of writing short blog posts - if not, my blog will simply shrivel up and disappear, just like I'm doing. My challenge is to find a new direction for the blog. When I began it I was working in Rwanda and fully expected to continue living the interesting and challenging life full of great photo opportunities for some time to come. The purpose of the blog was to share some details of that life with family and friends, and to avoid writing those annual e-mail messages to everyone, where I tried to cram everything into one letter. I don't actually (in spite of recent posts) want this to become a blog all about myalgic encephalomyelitis - I'd like to get beyond that, even though it's the elephant in the room of my life.

An Investigation into the Cognitive Deficits Associated with Chronic Fatigue Syndrome

For anyone interested enough to plough through this research report, it goes some way to explaining why I'm unable to work, even though I look ok:

http://www.pubmedcentral.nih.gov/articlerender.fcgi?tool=pubmed&pubmedid=19452031#top

Just Four Quid!

Once in a while someone asks "when are they going to find a cure for ME?!" - well, the cure won't be found without bio-medical research, and the research won't get done without funding. So there's a big campaign going on in the UK right now to raise funds for research. Details about how to make a donation can be found at: http://justfourquid.com/

The idea is that if each person in the UK estimated to have ME (a quarter of a million people) were to give four pounds towards research, then a million pounds would be raised. If you know someone with a UK bank account, or you have friends in the UK who might consider donating four quid towards research, then please send this message on to them, and ask them to keep sending it on to others! All we need is for 250,000 people to give four quid each!

Swine Flu - the Flu Pandemic

Let's get some numbers into perspective. Number of deaths from swine flu to date: 101 (one hundred and one). Number of deaths from road accidents annually in the USA: 50,000 (fifty thousand). Number of people diagnosed with swine flu in the UK at present: 2 (two). Number of people with MS in the UK: 85,000 (eighty-five thousand). Amount of money spent on biomedical research for MS in the UK: a lot, because they seem to keep coming up with more information and potential treatments quite often. Number of people estimated to suffer from ME in the UK: 250,000 (two hundred and fifty thousand) - conservative estimate, 25% of whom are severely affected, i.e. totally bed-bound. Approximate cost to the UK economy of people ill with ME: £3,500,000,000 (3.5 billion pounds, parliamentary data). Amount spent on biomedical research for ME in the UK: £0 (zero). Number of doctors in the UK who know the difference between ME and CFS: 2 (two) - well, that's the impression I get, but I may be exaggerating!

Would someone please tell me what's wrong with this picture?

May is ME Awareness Month! For more information on issues surrounding funding biomedical research into ME please see the Invest in ME website: http://www.investinme.org/index.html

ME: a full-time job!

A couple of friends have asked how I spend my time. The question comes from the viewpoint of professional women in demanding jobs (like I used to have!) who longingly imagine the delights of a month or even a year off work with nothing much to do. And naturally they also imagine that I’m well enough to enjoy not working, because when you’re well, but maybe just a bit tired, it’s awfully hard to imagine not being well.

On my very worst days I’m not actually well enough to do anything at all. I lie on the sofa and sleep, or just doze and watch the clouds scudding past the window. My head is full of cotton wool, I’m dizzy, and barely have enough energy to get an apple or crackers and cheese from the kitchen when I’m hungry. I may get three or four days a month like that. But I’m grateful; people with more severe ME are in constant pain, are often bed-bound, and generally have a greater variety of unpleasant symptoms involving digestive, muscle, joint, and even heart problems.

On better days I have a goal: to do whatever I can that might help me get well. For the first few hours of the day my brain doesn’t even function well enough to remember my goal, so I just sip my ginger & lemon tea, prepare breakfast, listen to the news, play with the cats, read e-mails and the BBC website, and maybe make one or two phone calls if I’m up for it. Then I’ll take a shower, do a short yoga stretch routine, and my first meditation session of the day. I may wash some laundry and take it up to the roof to dry; or I’ll take a short walk to the local shops for cat-food, eggs, or chocolate. Then it’s time to cook lunch. There’s plenty of advice on what to eat floating around on the internet if you’ve got ME; a healthy diet is important, and that means plenty of fresh, and freshly cooked, vegetables. I’m not known for being a cook, but family members might be surprised at how much cooking I’m doing these days. It’s turned into my new hobby, and I’ve been scouring cookbooks and cookery websites for delicious new healthy recipes, and making up a few of my own along the way.

After lunch is almost always rest time. Rest is extremely important for people with ME – even if one doesn’t feel like resting. It’s far too easy to overdo things and end up suffering a relapse soon after as a result. Many people with ME were busy professionals before they became ill, and resting doesn’t come naturally. There’s always that feeling of “I ought to be doing something”, and that’s how some people remain ill for longer than they might otherwise. The instinct is to “fight” the illness, but ME doesn’t react in the same way as the usual kind of illness and fighting back can make it much worse. So my afternoons are close to sacred rest time; I may sleep, listen to a relaxation tape, or read if I’m feeling well enough.

Late afternoon is when some of my brain fog begins to clear – on a good day! I may go out for a short walk (ten or twenty minutes at most) along the sea front close to my flat. Then I’ll do a longer yoga session and another meditation session, followed by dinner and washing up. Often as not I won’t feel well enough to do the dishes and will leave them for morning. A couple of hours to write some e-mails, check out what my friends are up to on Facebook, look at other blogs, or do yet more research on ME – research that has consumed many, many hours of my life since I was diagnosed last October.

And so to bed – and if I’m really lucky, a full eight hours sleep (actually rare for people with more severe ME). What have I not done? I don’t have a social life. I don’t visit places of interest on this historic island. I don’t sit out in the sun (extremely detrimental to ME). I don’t watch TV and rarely watch a film. I don't clean much. I’ve almost given up listening to the radio (too stressful). I make few phone calls. Sometimes I don’t talk to another person for two or three days in a row. It’s not a holiday – but the goal is to get well.

For anyone who’d like to read a longer version of what life is like with ME, try “The State of Me” by Nasim Marie Jafry, or “Verity Red’s Diary” by Maria Mann. For a journalist’s exposé of the medical research establishment's failure to take the illness seriously, see “Osler’s Web” by Hillary Johnson.

My Brain is Controlled by Aliens

A snippet taken from a report of the IACFS/ME conference in Reno, Day 4, March 15, written by Kim McCleary, President & CEO, The CFIDS Association of America, posted on the Life as we know it blog (http://cfs-facts.blogspot.com/).

"A short but interesting session on the brain and cognitive function followed. A most intriguing study from Harvard showed that rigorously selected CFS patients were clearly distinguishable from depressed and healthy controls using spectral coherence EEG data. Presenter Frank Duffy, MD, concluded, "These data are in accord with much previously reported data indicating that CFS is a condition that causes objective, measurable perturbations in central nervous system function." He suggested that if replicated, these EEG data in combination with other brain imaging techniques might be diagnostic for CFS. A study of adult cognitive performance by Elke Van Hoof of Brussels showed slow processing speed, as has been reported by several other groups, lower performance on tasks which require complex processing, and CFS subjects' need for more time to complete reaction-time related tasks."

This may not mean much to most of you, but for me it is highly meaningful. I know there's something going on with my brain - I am not functioning like I used to, but trying to explain this to others is close to impossible. The nearest I get is to say that my head is full of cotton wool, or I feel like I have a bad hangover - without the benefit of having enjoyed the alcohol - and drinking a good cup of coffee only makes it worse. It would be great to be able to hold up the results of a scan and show that 'here is a normal brain - and here's what's going on in my brain'.

Not so NICE

The message below refers to the recent UK high court judicial review of the National Institute for Clinical Excellence (sic) guidelines on ME. See also: http://www.investinme.org/IIME%20Campaigning-NICE-Whats-Next.htm

Message from Kevin Short

(One of the Claimants who brought the [NICE judicial review] case)

DR RAMSAY WILL HAVE HIS DAY....

From the ashes of a certain legal case I am reminded of the words of the late Dr Melvin Ramsay, that wonderful ME sage and still ever present thorn in the flesh of establishment expediency:

"When, on occasion of a... ITV programme on the subject of Myalgic Encephalomyelitis, an immunologist stated the 'ME and PVFS are regarded as synonymous' I realised my objection to the latter term was fully justified and that it was incumbent on me to show that such a statement is blatantly untrue."[1]

Quite right. ME is NOT a bit of short-term post viral 'fatigue', neither is it a bit of short-term post viral fatigue compounded by depression and misplaced beliefs that one has a multi-system neurological disease - that in turn leads to muscle-deconditioning.

NO; Myalgic Encephalomyelitis IS a multi-system neurological disorder, and rightly recognised as such by the WHO since 1969. It is a serious disease that destroys lives and leads to early death through organ-failure in a significant minority of patients.[2]

All this is NOT mere 'outdated' Ramsay rhetoric, IT IS ESTABLISHED MEDICO SCIENTIFIC FACT.[3]

There are literally thousands of erudite and peer-reviewed biomedical studies which testify to this - and the gathering tide of such evidence swells and grows in number bringing with it the inevitable truth that one day will be undeniable: that ME is NOT the same as 'Chronic Fatigue Syndrome',

ME is NOT the same thing as 'Chronic Fatigue',

ME is NOT the same thing as 'Idiopathic or
Unexplained Fatigue',

NOR is ME the same thing as the latest NICE-sponsored crass abuse of medical taxonomy: "CFS/ME". ME patients should NOT be treated the same as Idiopathic Chronic fatigue patients, and to produce a State Guideline that does so under the misleading label of 'clinical excellence' is a national disgrace. It makes about as much sense as giving the same treatment to dental and brain-tumour patients under the dubious label of 'Chronic Head-Pain Syndrome'.

Like King Canute and his powerful friends in his court, one day the lie of those who seek to neglect, misrepresent and abuse medical taxonomy and science - including those indulging in political skulduggery with the WHO International Classification of Diseases - will be overwhelmed by the tide. The ever rising tide of biomedical scientific FACT.

They will be shown up for what they are.

Forgive me for borrowing a few words from another British sage. This time from one who was partial to a bit of rhetoric: "...we may have had our Dunkirk, but we will go on fighting and we will win the war."[4]

Kevin Short.
contact@angliameact ion.org.uk

[Permission to repost].

NOTES:

[1] The Clinical Identity of the Myalgic Encephalomyelitis Syndrome; By Dr A Melvin Ramsay MA MD; Leaflet published by the ME Association (UK).

[2] http://www.sophiaandme.org.uk/

[3] See, for example, M.E. (Myalgic Encephalomyelitis) BASIC INFORMATION, at: http://angliameaction.org.uk/docs/ME-basic-information.pdf

(this link may take time to open as it's a large PDF file. Remember to use your browser back button to return here)

[4] The words of Sir Winston Leonard Spencer-Churchill; Prime Minister and First Lord of the Admiralty.

Sound Familiar ?
Greg Crowhurst 8 March 2009
Permission to Repost

Its cause remains unknown. There is no known cure. It develops differently in each person and women are more likely to develop the disease than men.
Diagnosis is dependent upon the elimination of other physical causes.

The only way to be sure a person has the disease is to examine their brain after death.

Patients cannot fully recover from the disease. They can be helped, especially if the disease is discovered early enough.

It is a disease that affects millions around the world and there are huge issues with NICE.

Sound familiar ?

No, it is not ME, it is Alzheimers.

------

It is a chronic disease of the central nervous system. It leaves distinct layers of scar tissue in the brain, yet it is a fairly unknown and complex disease.

There is no known direct cause of the disease.

Diagnosis takes months of testing and the ruling out of other physical causes.
There is no single direct test for this disease.

There is no cure either. Treatment plans are highly individualised for each person.

There is no known way to prevent the onset of the disease.

It affects millions around the world.

Sound familiar? No it is not ME, it is Multiple Sclerosis.

------

In its severe state it is particularly frustrating to care for, partly because it is heterogeneous. The genetic and environmental elements that may cause the disease are still poorly understood.

No it is not ME, it is Asthma.

----

For many years doctors thought that Irritable Bowel Syndrome was a psychiatric rather than a physical disorder. Just as they still do in ME.

As Stephen Ralph asks: how many times have we seen a psychiatrist or a psychiatric study describe "CFS/ME" as a "poorly understood illness?" (2008
http://www.meaction uk.org.uk/ Why_the_CISSD_ Project_MUST_ Fail.html)

Yet ME is only one among countless poorly understood illness in the world.
Here's just a few at random (references available upon request):

Breast Cancer is still poorly understood.

The mechanisms behind the "eczema itch" are complex and still poorly understood.

Endometriosis is still poorly understood and its cause is still unknown.

Obesity's connection to Cardiovascular Disease is complex and still remains poorly understood.

Osteoarthritis is still a poorly understood disease, that has little to with wear and tear. There is still no cure.

Airport malaria is still a poorly understood disease.

Neurocysticercosis : cystic lesions on the brain, is a poorly understood disease.

Why women develop heart disease is still poorly understood. It is still a mystery, for example, why younger woman are still more likely to die from a heart attack than older woman.

Chronic Prostatitis Syndrome is a common, but still poorly understood condition.

Pulmonary-renal syndrome is still a poorly understood clinicopathologic condition .

Severe Acute Respiratory Syndrome (SARS), is still a poorly understood disease, despite being classified by the WHO in 2003 as a global threat to health .

Insomnia is still poorly understood by the medical profession.

Crohn's Disease and Ulcerative Colitis: are still poorly understood.

Calciphylaxis, a complication of end-stage renal disease is still a poorly understood clinical syndrome.

Kawasaki disease, which involves the skin, mouth and lymph nodes is a poorly understood disease, despite being studied since World War II.

What is so tragic is that NONE of the poorly understood diseases listed above cite psychiatric rehabilitation techniques as their first-line treatment interventions, as they do in ME.

People above are suffering, often terribly, but at least they taken relatively seriously; what we have to deal with is off the scale, and all because "in the
1970s certain psychiatrists became involved (with ME,) notably McEvedy and Beard, who in a paper with no scientific merit whatever, dismissed ME as mass hysteria (see: BMJ 1970:1:7-11). "Marshall E, Williams M, Vade Mecum http://www.meaction uk.org.uk/ Vade_MEcum. htm

Will we ever know just how many deaths, how many endless hours of ongoing suffering, how many broken hopes and dreams that has led to?

Me, I'm just screaming.

(Greg Crowhurst is the husband and carer of his wife, Linda Crowhurst, who has severe ME. Thanks for writing this, Greg!)

Ups and Downs of M.E.

On good days I begin to feel like I’ve got this thing beat. “I’m getting better!” “In a few more weeks I’ll be back to normal!” M.E. is famous for it’s fluctuating symptoms that can vary in severity from hour to hour and day to day. I’ll wake up after eight hours unrefreshing sleep feeling groggy, my head full of mud, my legs made of lead and it will take hours for my brain to begin to function. I used to be a morning person – happy to be up by 6 am or even earlier to fit in some journal writing before going to work. Yet now I often have to wait until mid afternoon to feel some energy creeping into my mind and body.

I think the good days are there to encourage us, to keep us going, to give us hope. Not everyone with M.E. gets good days – happily I do. Right now I’m trying to figure out if my recent good days are just part of the usual fluctuating symptoms, or can they be the result of a significant increase in meditation time that I began about ten days ago? Almost every day I’m taking around 45 minutes in the morning and the same again in the late afternoon for meditation practice or relaxation exercises. A quick look at the topics “meditation”, “mindfulness”, and “autogenic training” in Wikipedia brings up the related (clinically researched) health benefits – whether you have M.E. or some other condition.

Going Shopping

If a trip to the supermarket leaves you exhausted, then you've got M.E. If you're looking for a place to sit and rest while you're wandering the aisles, then you've got M.E. If you feel like you're going to faint at any moment while standing in the check-out line, then you've got M.E. If the muzak makes you feel like hammers are raining down on your head, you've got M.E. (or maybe a migraine). If your brain goes fuzzy, your shopping list gets blurry and seems increasingly pointless, then you've got M.E. And after a trip to the supermarket you need to rest for the remainder of the day before unpacking and putting away the groceries, then you've got M.E.

And if you've got M.E. then you might want to get your hands on: "Recovery from CFS: 50 personal stories" compiled and edited by Alexandra Barton. Some of the contributors were diagnosed with M.E. and some with CFS, so the recovery stories are varied but all are interesting.

Meditation

Breathe deeply, empty your mind, relax. Meditation, or "mindfulness" is credited with stress reduction and improving health and happiness levels. Some ME recovery stories (yes, occasionally people do recover!) include meditation as one of the means to becoming well again.

Jon Kabat-Zinn's 2-CD set, "Mindfulness for Beginners" is the best introduction to meditation I've found. Kabat-Zinn is not to be confused with all the 'new age' gurus out there; he holds a PhD in molecular biology from MIT, and founded the Center for Mindfulness in Medicine, Health Care, and Society at the University of Massachusetts Medical School (wikipedia).

For those who like to meditate to music, my favourites at the moment are: Latif Bolat: Let There be Love; Krishna Das: One Track Heart; and Amar Nath: Rain Melody. Sometimes I listen to Shakti Gawain's Creative Visualization Meditations, but sometimes I find her a bit too much new age fluff for my liking.

What's your favourite music to meditate to? Or maybe you prefer listening to the wind and birds outside the window? Share your thoughts and music using the comment button below!

What is M.E.?

The following definition of ME is taken from: http://www.ahummingbirdsguide.com/testingforme.htm#69971867

Myalgic Encephalomyelitis is a systemic neurological disease initiated by a viral infection which is characterised by (scientifically measurable) damage to the brain stem which results in dysfunctions and damage to almost all vital bodily systems and a loss of normal internal homeostasis. Substantial evidence suggests that M.E. is caused by an enterovirus. The onset of M.E. is always acute and M.E. can be diagnosed within just a few weeks. M.E. is an easily recognisable distinct organic neurological disease which can be verified by objective testing. If all tests are normal, then a diagnosis of M.E. cannot be correct.
M.E. can occur in both epidemic and sporadic forms and can be extremely disabling, or sometimes fatal. M.E. is a chronic/lifelong disease that has existed for centuries. It shares significant similarities with diseases such as MS, Lupus and Polio as well as end-stage AIDS. There are more than 60 different neurological, cognitive, cardiac, metabolic, immunological, and other M.E. symptoms. Fatigue is not a defining nor even essential symptom of M.E. People with M.E. would give anything to instead only be severely ‘fatigued.’ Far fewer than 0.5% of the population has the distinct neurological disease known since 1956 as Myalgic Encephalomyelitis.

For a more detailed definition of ME see: http://www.nightingale.ca/documents/Nightingale_ME_Definition_en.pdf
Links to both websites can be found on the right-hand side of this page.

Obama and the Presidents

I woke at 6:30 am. I didn’t feel at all like getting up – one of those mornings when I just want to stay cozy and drowsy in bed (which almost never happened before ME) – so I played a podcast of The Strand, the BBC World Service arts program. I listened to an interview with Tarell Alvin McCraney, who’s apparently got three of his plays all running on the London stage at the moment (if I heard right); he’s American, he’s black, and he’s gay – and I’m clearly way out of touch with the London theatre scene, because I’d never heard of him. Times have changed; but what I noticed most about the interview was people’s attitude towards him as an American in London – and this is what has really changed – people smile when they ask him if he’s American, and then ask what he thinks about Obama, and he (McCraney) has noticed how happy people in England are about the new US president; they are happy (and they show it!) that Obama won.

How long has it been since the Brits were truly interested in who became president of the US? Clearly I’m not the only one who is thrilled at what we’ve just experienced. And I don’t think it’s only because Obama is African American – it could have been Condoleezza Rice who got elected, and I doubt that people would have been so thrilled; it could have been Colin Powell, or Jesse Jackson, and the reaction would have been far less enthusiastic. There is something special about Obama that is a combination of everything about him, not just one single element, that appeals to many people. As a young boy he lived for a couple of years in Jakarta, and his step-father was nominally Muslim. I know from my own experience (two years in Surabaya, East Java) that living there one becomes accustomed to hearing the call to prayer five times a day, to seeing everyone head for the mosque at 11 am on Friday mornings, and that the rhythm of Islamic life becomes an everyday thing, something positive; one associates it with life, with routine, with normality. So Obama is the first US president who has a personal experience of life in an Islamic country. For him Muslims are not “other”, they are not strangers. And this is what we need now; this is the kind of person we need who can help bridge this gap between the Judeo-Christian and the Muslim world.

On January 7th the former living US presidents all met together for lunch at the White House, a meeting that apparently Obama initiated, and GW generously agreed to host. Bush Sr., Bush Jr., Clinton, and Carter were all there. It is unusual for such an event to occur before a new president takes office. My impression, from the brief media film clip, was of the senior men all handing over the torch to a younger man, and wishing him well; but at the same time, for me, there was a sense of Obama’s seniority – a sense that here is a man who has the combined intelligence of all who have preceded him, with an additional dose of emotional intelligence that is exceptionally (and sadly) rare in senior officials. I’m not saying that Obama won’t make mistakes. How could anyone take on such a job as this and not make mistakes? But I don’t foresee him making any of the terrible gaffes that dogged presidents Carter, Clinton, or (worst of all) GW Bush.

A Rainy Day

Malta doesn't get much rain but at 1:50 am the lightning flashes and rain slashing the windows woke me. This is the greyest, wettest day since I moved down the hill to Qawra by the sea. The cool damp weather encourages me to stay indoors curled up on the sofa in front of the warm gas fire. And this is good. It's all very well being told to "listen to your body" when you've got M.E., but there's the shopping to be done, food to be cooked, dishes washed, e-mails waiting for replies, not to mention the weight of an entire anglophone culture that believes in the Protestant work ethic and the oneupmanship of pushing yourself until you drop. So my thanks to Aylwin for her comment on the need to rest - we cannot be told this too often! Rest is the only actual proven cure for M.E. The medical establishment hasn't come up with anything else - that is for sure. And please, please, don't tell me that noni juice, or gochi juice, or Vitamin X will do the trick. Not unless you've done the clinical trials with control groups on a few hundred people and your results have been published in The Lancet.