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!
Tuesday, May 19, 2009
Saturday, May 02, 2009
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
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
Wednesday, April 15, 2009
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.
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.
Friday, March 20, 2009
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'.
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'.
Sunday, March 15, 2009
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.
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.
Tuesday, March 10, 2009
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!)
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!)
Friday, February 20, 2009
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.
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.
Thursday, February 05, 2009
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.
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.
Wednesday, January 28, 2009
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!
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!
Sunday, January 25, 2009
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.
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.
Saturday, January 10, 2009
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.
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.
Tuesday, January 06, 2009
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.
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.
Monday, December 29, 2008
M.E./CFS
Previous readers of this blog may have been wondering what’s happened – why haven’t I written anything for so long? It’s not that I’ve stopped writing. In the past few months I’ve filled several notebooks of longhand, and many pages of laptop files; but it’s all been more personal than I’ve wanted to share on a public blog.
I left DR Congo in early February knowing that I needed a break from the work I’d been doing, and a good rest. I decided to use the opportunity to fulfil my dream of returning to Europe and revisiting places that I’d lived in or visited thirty years earlier. I had several wonderful months completing much of what I intended – with one major exception. I had intended to relax, improve my health, and generally de-stress and eventually get back into a frame of mind where I could either return to work overseas or find some other type of employment that I’d enjoy. While travelling I gradually found myself becoming more tired, more worn out, and feeling less well than ever before. Arriving in Malta in late August I let go of all my sightseeing goals and simply rested. This didn’t seem to help either. I began keeping a written record of how tired I was, how I was feeling in general, and other symptoms. After a couple of weeks I knew there was a problem. I began seeing medical specialists and by the second specialist I had a diagnosis: myalgic encephalomyelitis (ME), aka chronic fatigue syndrome (CFS), or post-viral fatigue syndrome, or chronic fatigue and immune dysfunction syndrome (CFIDS).
Just the fact that there are so many different names for this illness tells you there’s a problem. Indeed, the medical community still has no firm evidence for the cause of the problem nor the exact nature of the illness. There is, as yet, no cure. There are a range of symptoms and there’s a wide range of the degree to which people are ill: some people (a very few) are actually able to hold down full time jobs; at the other end of the spectrum some are so incapacitated as to be permanently bed-ridden. The illness is recognised by the WHO and is listed under “other disorders of the nervous system” G93.3 as “benign myalgic encephalomyelitis”.
In my case although I‘m unable to function in the type of demanding role that I held in the past, fortunately I can take care of myself and carry out basic daily tasks such as shopping, cooking, cleaning, and so on. I can read uncomplicated material without difficulty, although technical, dense information becomes much more stressful and quickly incomprehensible. I can write for a couple of hours a day, but after that brain fatigue sets in, concentration goes, and I have to rest. I’ve had to give up long walks, and I need to think carefully before using up too much energy on a single task. Going to a large crowded supermarket with muzak is extremely draining and on the whole I limit that to once a fortnight. I mostly buy my fruit and vegetables from small local vendors.
The two most significant features of ME/CFS are muscle-related problems (extreme muscle fatigue and pain, general lack of energy) and brain fatigue/malfunction. Although low energy levels are frustrating and tiresome, it is the brain-related problems that make it impossible for me to return to the type of work that I’ve done in the past. Memory and concentration are affected; any type of mental exertion – especially when it involves other people, such as in meetings, team discussions, teaching, etc. – quickly results in ‘brain fog’. This is a dense cloud or fuzziness like having a brain full of cotton wool (often turning to dizziness) that seems to envelop the brain making it really difficult or impossible to think things through, see matters clearly, or make decisions, and can even result in slurred speech. Before my diagnosis I signed up to take a teacher training course, thinking that I might return to teaching. The classes were just four mornings a week, but left me exhausted, dizzy and feeling generally unwell. I would come home each afternoon and fall onto the bed, often unable to prepare even a simple lunch.
Now I’m learning to pace myself, rationing my activities, and learning when to tell myself that it’s time to go home and not do ‘just one more thing’. ME/CFS is counter-intuitive. Many of us believe that we have to soldier on through an illness and we’ll gradually get better. Most of us have also been fed endless articles by the media telling us how important exercise is for our health. Before my diagnosis I struggled on, walking as much as I could every day, believing that, whatever might be wrong, the exercise was doing me good. Specialists now know that too much exercise can cause a deterioration in the condition of those with ME/CFS. Every day is an internal battle between wanting to get things done, wanting to get out and be active, telling myself I need to get on with it, and trying to listen to what my body is telling me about how much rest I need.
And now I do need to rest!
Previous readers of this blog may have been wondering what’s happened – why haven’t I written anything for so long? It’s not that I’ve stopped writing. In the past few months I’ve filled several notebooks of longhand, and many pages of laptop files; but it’s all been more personal than I’ve wanted to share on a public blog.
I left DR Congo in early February knowing that I needed a break from the work I’d been doing, and a good rest. I decided to use the opportunity to fulfil my dream of returning to Europe and revisiting places that I’d lived in or visited thirty years earlier. I had several wonderful months completing much of what I intended – with one major exception. I had intended to relax, improve my health, and generally de-stress and eventually get back into a frame of mind where I could either return to work overseas or find some other type of employment that I’d enjoy. While travelling I gradually found myself becoming more tired, more worn out, and feeling less well than ever before. Arriving in Malta in late August I let go of all my sightseeing goals and simply rested. This didn’t seem to help either. I began keeping a written record of how tired I was, how I was feeling in general, and other symptoms. After a couple of weeks I knew there was a problem. I began seeing medical specialists and by the second specialist I had a diagnosis: myalgic encephalomyelitis (ME), aka chronic fatigue syndrome (CFS), or post-viral fatigue syndrome, or chronic fatigue and immune dysfunction syndrome (CFIDS).
Just the fact that there are so many different names for this illness tells you there’s a problem. Indeed, the medical community still has no firm evidence for the cause of the problem nor the exact nature of the illness. There is, as yet, no cure. There are a range of symptoms and there’s a wide range of the degree to which people are ill: some people (a very few) are actually able to hold down full time jobs; at the other end of the spectrum some are so incapacitated as to be permanently bed-ridden. The illness is recognised by the WHO and is listed under “other disorders of the nervous system” G93.3 as “benign myalgic encephalomyelitis”.
In my case although I‘m unable to function in the type of demanding role that I held in the past, fortunately I can take care of myself and carry out basic daily tasks such as shopping, cooking, cleaning, and so on. I can read uncomplicated material without difficulty, although technical, dense information becomes much more stressful and quickly incomprehensible. I can write for a couple of hours a day, but after that brain fatigue sets in, concentration goes, and I have to rest. I’ve had to give up long walks, and I need to think carefully before using up too much energy on a single task. Going to a large crowded supermarket with muzak is extremely draining and on the whole I limit that to once a fortnight. I mostly buy my fruit and vegetables from small local vendors.
The two most significant features of ME/CFS are muscle-related problems (extreme muscle fatigue and pain, general lack of energy) and brain fatigue/malfunction. Although low energy levels are frustrating and tiresome, it is the brain-related problems that make it impossible for me to return to the type of work that I’ve done in the past. Memory and concentration are affected; any type of mental exertion – especially when it involves other people, such as in meetings, team discussions, teaching, etc. – quickly results in ‘brain fog’. This is a dense cloud or fuzziness like having a brain full of cotton wool (often turning to dizziness) that seems to envelop the brain making it really difficult or impossible to think things through, see matters clearly, or make decisions, and can even result in slurred speech. Before my diagnosis I signed up to take a teacher training course, thinking that I might return to teaching. The classes were just four mornings a week, but left me exhausted, dizzy and feeling generally unwell. I would come home each afternoon and fall onto the bed, often unable to prepare even a simple lunch.
Now I’m learning to pace myself, rationing my activities, and learning when to tell myself that it’s time to go home and not do ‘just one more thing’. ME/CFS is counter-intuitive. Many of us believe that we have to soldier on through an illness and we’ll gradually get better. Most of us have also been fed endless articles by the media telling us how important exercise is for our health. Before my diagnosis I struggled on, walking as much as I could every day, believing that, whatever might be wrong, the exercise was doing me good. Specialists now know that too much exercise can cause a deterioration in the condition of those with ME/CFS. Every day is an internal battle between wanting to get things done, wanting to get out and be active, telling myself I need to get on with it, and trying to listen to what my body is telling me about how much rest I need.
And now I do need to rest!
Tuesday, December 23, 2008
Couch Surfing at Christmas
The Malta Couch Surfing group held a Christmas party last night that was a great success. Matthew, a local CS member, hosted the event in his atmospheric old "house of character" - as such traditional village houses are now called here - located down a narrow twisty lane and only reachable on foot. Everyone brought something to eat and/or drink, and visiting couch surfers from Ireland, Finland, Italy, the US, Russia, Sweden, France, and maybe some other places, came along too. When I left soon after midnight the party was still going strong! If you're not a couch surfer yet you can join the fun at: www.couchsurfing.com
The Malta Couch Surfing group held a Christmas party last night that was a great success. Matthew, a local CS member, hosted the event in his atmospheric old "house of character" - as such traditional village houses are now called here - located down a narrow twisty lane and only reachable on foot. Everyone brought something to eat and/or drink, and visiting couch surfers from Ireland, Finland, Italy, the US, Russia, Sweden, France, and maybe some other places, came along too. When I left soon after midnight the party was still going strong! If you're not a couch surfer yet you can join the fun at: www.couchsurfing.com
Wednesday, November 05, 2008
Wednesday, September 10, 2008
Africans in Malta
Malta is still hot and humid! While northern Europe slides into Autumn, down here the sun shines brightly for almost 12 hours a day. Far too hot for me to think about work - such as sorting out photos or sightseeing - so I just go down to the Tigne Beach Club to catch a bit of breeze and take a dip in the Med to cool off.
With a population of around 400,000 and total area of approx. 316 sq km, I believe Malta is the smallest country in the European Union, and not well placed to deal with the influx of refugees from Africa who are now arriving by the boat load. The EU is doing nothing to help. Malta is already one of the most densely populated countries on earth, and large numbers of Maltese themselves emigrate to look for work and opportunities elsewhere (Edward de Bono is one of the more famous Maltese expatriates).
Most of the refugees are placed in one of two camps in the interior of the island, a closed camp which they cannot leave, and an open camp where people are free to come and go. A few, after being held for 18 months, are given ID cards and allowed to look for work on the island. There isn't much. One such is a young man from Abidjan in the Ivory Coast, Mamadou. Tall and good looking, speaking fluent French and learning English quickly, he tidies away deck chairs and sweeps up at the club. He looks sad, worried that by the end of October there'll be no more work for him. A few of his friends, he tells me, have gone to mainland Europe with young women who arranged the necessary papers for them. He'd like to do the same...but patrons at the beach club are mostly local Maltese, not foreigners, so his chances of meeting someone this year look slim.
Malta is still hot and humid! While northern Europe slides into Autumn, down here the sun shines brightly for almost 12 hours a day. Far too hot for me to think about work - such as sorting out photos or sightseeing - so I just go down to the Tigne Beach Club to catch a bit of breeze and take a dip in the Med to cool off.
With a population of around 400,000 and total area of approx. 316 sq km, I believe Malta is the smallest country in the European Union, and not well placed to deal with the influx of refugees from Africa who are now arriving by the boat load. The EU is doing nothing to help. Malta is already one of the most densely populated countries on earth, and large numbers of Maltese themselves emigrate to look for work and opportunities elsewhere (Edward de Bono is one of the more famous Maltese expatriates).
Most of the refugees are placed in one of two camps in the interior of the island, a closed camp which they cannot leave, and an open camp where people are free to come and go. A few, after being held for 18 months, are given ID cards and allowed to look for work on the island. There isn't much. One such is a young man from Abidjan in the Ivory Coast, Mamadou. Tall and good looking, speaking fluent French and learning English quickly, he tidies away deck chairs and sweeps up at the club. He looks sad, worried that by the end of October there'll be no more work for him. A few of his friends, he tells me, have gone to mainland Europe with young women who arranged the necessary papers for them. He'd like to do the same...but patrons at the beach club are mostly local Maltese, not foreigners, so his chances of meeting someone this year look slim.
Thursday, August 28, 2008
Tuesday, July 22, 2008
Goodbye England, Hello Europe!
So much for thinking I’d get the rest of my Crete, Paris and Chartres photos posted before I set off again! The past few weeks in England have been full of activities: seeing old friends, visiting art galleries, getting some minor laptop problems sorted with the help of an excellent young Polish computer whiz at the Apple Store on Regent Street (a temple devoted to all things Apple!), visits to Norwich and a return to Yorkshire.
However good it is to be among familiar surroundings in North Yorkshire, the weather is a strong reminder of why I could never again live up here. It is cold and wet, damp and chilly, grey and dark even in July! Of course the days when the sun does shine and the rich green of all the tall trees and fields glows, and garden flowers are all lit up, and the countryside is full of sheep, cows, bunnies, pheasants, deer and foxes, on these days it is perfectly English and very beautiful.
In the morning I’ll be flying to Prague and after a few days in the city I’ll head to the south of the country – new territory for me – to visit an old Czech friend whom I know from my Cornell days. Then it’s on to Graz and Klagenfurt in Austria, and from there I’ll head north again into Germany and go to Weimar, traveling via Munich. Anyone who has studied Goethe and Schiller will understand why I’m heading to Weimar, which in the old days was closed off to us behind the Iron Curtain, but can now easily be visited.
From Weimar I’ll go to Berlin for a couple of weeks. I was last there in the mid-70’s, so I’m curious to see all the changes and to get a better look at the eastern side of the city. I did visit before – a complicated and anxiety-inducing process of passing through checkpoints and changing required amounts of money with little to spend it on. After Berlin there will be a few brief days in Belgium seeing friends, then a few brief days back in Notting Hill to sort out my gear before packing it up and flying south to Malta for the month of September.
I’ve decided not to carry my laptop with me for the European mainland part of this trip, which means no new photos for some time. Yes, I’m way, way behind with posting photos – but I always was! In fact, I’ve got a huge stack of photos from Rwanda and Congo that I always think about posting if I ever get the chance….
So much for thinking I’d get the rest of my Crete, Paris and Chartres photos posted before I set off again! The past few weeks in England have been full of activities: seeing old friends, visiting art galleries, getting some minor laptop problems sorted with the help of an excellent young Polish computer whiz at the Apple Store on Regent Street (a temple devoted to all things Apple!), visits to Norwich and a return to Yorkshire.
However good it is to be among familiar surroundings in North Yorkshire, the weather is a strong reminder of why I could never again live up here. It is cold and wet, damp and chilly, grey and dark even in July! Of course the days when the sun does shine and the rich green of all the tall trees and fields glows, and garden flowers are all lit up, and the countryside is full of sheep, cows, bunnies, pheasants, deer and foxes, on these days it is perfectly English and very beautiful.
In the morning I’ll be flying to Prague and after a few days in the city I’ll head to the south of the country – new territory for me – to visit an old Czech friend whom I know from my Cornell days. Then it’s on to Graz and Klagenfurt in Austria, and from there I’ll head north again into Germany and go to Weimar, traveling via Munich. Anyone who has studied Goethe and Schiller will understand why I’m heading to Weimar, which in the old days was closed off to us behind the Iron Curtain, but can now easily be visited.
From Weimar I’ll go to Berlin for a couple of weeks. I was last there in the mid-70’s, so I’m curious to see all the changes and to get a better look at the eastern side of the city. I did visit before – a complicated and anxiety-inducing process of passing through checkpoints and changing required amounts of money with little to spend it on. After Berlin there will be a few brief days in Belgium seeing friends, then a few brief days back in Notting Hill to sort out my gear before packing it up and flying south to Malta for the month of September.
I’ve decided not to carry my laptop with me for the European mainland part of this trip, which means no new photos for some time. Yes, I’m way, way behind with posting photos – but I always was! In fact, I’ve got a huge stack of photos from Rwanda and Congo that I always think about posting if I ever get the chance….
Saturday, July 05, 2008
Crete
20 May - 12 June, 2008
I'm slightly reluctant to write about how delightful Crete is, for fear of encouraging yet more tourists. Fortunately this blog doesn't have such a large readership that I need to worry too much, and I suspect that most readers are people whom I'd be happy to share this wonderful island with. Bear in my that my photos do not even begin to show the wonders of Crete: the bluest sea, the clearest air, the divine scent of wild thyme on the hillsides, the majestic mountains... I'll divide my photos into three sections - favourite pics from Crete; Knossos (yes, it's Crete, but deserves a section of its own!); and Santorini. The photos below are the Crete pics. I did not take my camera on the Samaria Gorge hike to save on weight, but I doubt that my photographs could do it justice, in any case! And sorry - I have not arranged these photos in any particular order!
I love the way that almost everyone on Crete makes such an effort to decorate the outside of their houses with flowers.
This is a view of the village of Sellia, as seen from the village of Myrthios, on the south west coast, directly south of Rethymno, and just up the hill from Plakias, where I was staying.
Rethymno, on the north coast, has a Venetian "fortezza" and old harbour. This photo is taken from the new harbour showing the "white mountains" in the distance. The mountains are often covered with snow in the winter.
A wonderful display of potted plants from someone who clearly misses having a garden!
This is a small olive tree - the island is covered in olive trees with their distinctive grey-green leaves, and naturally olives and olive oil form a significant part of the local diet.
My Norwegian friend Astrid came to visit me in Crete! We had a great couple of days together catching up. She used to work in Bukavu, and is now in Goma (DR Congo) after an 8 month break.
Village street in Myrthios, south coast of Crete.
I guess you can tell that I like flowers!
Here are the White Mountains again in the distance. Hidden in the mountains is the amazing Samaria Gorge - the longest gorge in Europe (18km), and one of the most beautiful days I've ever spent. It is difficult to imagine, seeing the mountains from the "outside", just how beautiful the gorge is; one surprising feature are all the pine trees that grow there, but which you don't see on the mountains. Crete used to have ample tree cover, but the Venetians cut down all the trees to build their ships - history buffs might be interested in "Empires of the Sea - the Final Battle for the Mediterranean, 1521 - 1580" by Roger Crowley.
A view of the south coast, near Frangokastello.
I liked the way that the shape of this village conformed to the niche in the hillsides - near Frangokastello.
The village of Sellia
Taken near Preveli Monastery - I couldn't make out the purpose of the wall!
Another view of Rethymno.
The Rethymno Fortezza.
Preveli Monastery
View of Plakias taken from Myrthios. Back in the 70's there were only 10 houses in Plakias; now there are hotels and a large development of holiday homes is beginning construction. It's still delightful - but for how much longer? Fortunately the two-hour drive from the airport puts off plenty of people.
The Panorama Restaurant in Myrthios - it has truly panoramic views over Plakias. And yes, there are rather a lot of cars on the road - this is a popular place with tourists!
Views (above and below) of a lovely old bridge not far from Preveli.
Along the road between Sellia and Myrthios.
Frangokastello on the south coast. It's old. Don't know how old - can't remember all these details!
20 May - 12 June, 2008
I'm slightly reluctant to write about how delightful Crete is, for fear of encouraging yet more tourists. Fortunately this blog doesn't have such a large readership that I need to worry too much, and I suspect that most readers are people whom I'd be happy to share this wonderful island with. Bear in my that my photos do not even begin to show the wonders of Crete: the bluest sea, the clearest air, the divine scent of wild thyme on the hillsides, the majestic mountains... I'll divide my photos into three sections - favourite pics from Crete; Knossos (yes, it's Crete, but deserves a section of its own!); and Santorini. The photos below are the Crete pics. I did not take my camera on the Samaria Gorge hike to save on weight, but I doubt that my photographs could do it justice, in any case! And sorry - I have not arranged these photos in any particular order!
I love the way that almost everyone on Crete makes such an effort to decorate the outside of their houses with flowers.
This is a view of the village of Sellia, as seen from the village of Myrthios, on the south west coast, directly south of Rethymno, and just up the hill from Plakias, where I was staying.
Rethymno, on the north coast, has a Venetian "fortezza" and old harbour. This photo is taken from the new harbour showing the "white mountains" in the distance. The mountains are often covered with snow in the winter.
A wonderful display of potted plants from someone who clearly misses having a garden!
This is a small olive tree - the island is covered in olive trees with their distinctive grey-green leaves, and naturally olives and olive oil form a significant part of the local diet.
My Norwegian friend Astrid came to visit me in Crete! We had a great couple of days together catching up. She used to work in Bukavu, and is now in Goma (DR Congo) after an 8 month break.
Village street in Myrthios, south coast of Crete.
I guess you can tell that I like flowers!
Here are the White Mountains again in the distance. Hidden in the mountains is the amazing Samaria Gorge - the longest gorge in Europe (18km), and one of the most beautiful days I've ever spent. It is difficult to imagine, seeing the mountains from the "outside", just how beautiful the gorge is; one surprising feature are all the pine trees that grow there, but which you don't see on the mountains. Crete used to have ample tree cover, but the Venetians cut down all the trees to build their ships - history buffs might be interested in "Empires of the Sea - the Final Battle for the Mediterranean, 1521 - 1580" by Roger Crowley.
A view of the south coast, near Frangokastello.
I liked the way that the shape of this village conformed to the niche in the hillsides - near Frangokastello.
The village of Sellia
Taken near Preveli Monastery - I couldn't make out the purpose of the wall!
Another view of Rethymno.
The Rethymno Fortezza.
Preveli Monastery
View of Plakias taken from Myrthios. Back in the 70's there were only 10 houses in Plakias; now there are hotels and a large development of holiday homes is beginning construction. It's still delightful - but for how much longer? Fortunately the two-hour drive from the airport puts off plenty of people.
The Panorama Restaurant in Myrthios - it has truly panoramic views over Plakias. And yes, there are rather a lot of cars on the road - this is a popular place with tourists!
Views (above and below) of a lovely old bridge not far from Preveli.
Along the road between Sellia and Myrthios.
Frangokastello on the south coast. It's old. Don't know how old - can't remember all these details!
Thursday, July 03, 2008
Paris city hall
I am absolutely thrilled and delighted to tell you that Ingrid Betancourt is finally free! Please see http://news.bbc.co.uk/1/hi/world/americas/7487026.stm for details.
I'm in Norwich, East Anglia for the next couple of days. Delightful town with a cathedral and central market that date back over 1,000 years.
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