The name for the illness Myalgic Encephalomyelitis (ME) was coined by Melvin Ramsay way back in 1956 following his observation at the Royal Free Hospital epidemics department in London between 1955 and 1957.
The statistics with regards to ME/CFS are still hazy, as no reliable epidemiological studies have been done. In the UK, the official department of health estimates patients with ME to be around 0.02 to 0.04 per cent of the population, which is about 120,000 to 240,000 of the population. In the US, it's reckoned that there about a million sufferers. An epidemiological study led by Derek Pheby,at the University of East Anglia, and sponsored by the Big Lottery is due to report its findings next year.
A current chief medical officer, Prof. Sir Liam Donaldson commissioned a working group on ME. It took three years and in 2002 Prof. Donaldson concluded that ME "is a real illness for real people... left in the wilderness too long".
ME is a neurological disease and the term means Myalgic (muscle pain), Encephalo (related to the brain), Myelitis (inflammation of the spinal cord). Byron Hyde wrote that one of the reasons why physicians were sure they were dealing with an inflammatory illness in the brain when they first encountered it, was that patients in both endemic and epidemic conditions were having this curious diffuse brain injury.
Eighty per cent of those who suffer from the condition do not get better and according to US statistics provided by the Centres for Disease Control only four per cent of patients had full remission. The quality of life is particularly and uniquely disrupted and all patients incur some kind of loss such as loss of jobs, relationships, financial security, future plans, daily routines, hobbies, stamina and naturalness. Activity is reduced to basic survival needs for some and researchers have discovered that the extent of loss suffered by the patients was devastating, both in number and intensity.
What seems to be evident in triggering ME/CFS is a disruption in ion channels in the cell membranes, which can procure a logical basis to the fluctuating symptoms. When the sodium channels are blocked, sodium enters into neural tissues and muscles, followed by water, which causes the neural tissues to swell. Both electron microscopy and laser scanning microscopy have observed this occurrence.
Around 25 per cent of those who are severely affected are house-bound and this includes those who are bedridden, paralysed, can't speak and have to be tube-fed and given 24-hour care.
ME is not synonymous with being tired all the time and "fatigue" is not a defining symptom, not even necessarily a symptom that characterises this complex affliction. If a person is constantly fatigued or tired this should not be taken that he or she is suffering from ME. Fatigue or feeling tired all the time is nowhere close to the specific type of "paralytic weakness" or "muscle fatigue" which are characteristic of ME and which affect every cell and organ in the body, including the brain and the heart.
ME is not just a symptom but an illness recognised by the World Health Organisation since 1969 as a distinct neurological disorder. More than 64 diverse symptoms have been automatically documented in ME, several of which pertain only to this illness. The variability of symptoms varies from day to day and hour to hour.
Chloe's* ME is moderate to severe and quite severe sometimes. She tends to have more bad days and lesser good days. Sometimes there are no good days for months.
"When I am at my worst I cannot get out of bed due to massive exhaustion, very heavy legs and body and pain. Glands swell up and cause discomfort. My breathing suffers even to talk and I get panic attacks and chest pains. Sometimes I get low-grade fever or temperatures below normal. I feel very cold in summer.
"At times I experience pain all over my body and stomach discomfort that keeps me awake all night. Nightmares and disturbed sleep adds to the vicious circle because since I don't sleep well, I get up more exhausted and ME symptoms get worse. I have to keep an eye mask because the little light that comes in from the closed blinds gives me migraine and hurts my eyes. Even traffic noise outside hurts and makes me very irritable.
"The glare of television and computer screens can be too strong and painful. Reading a book is quite exhausting so the frustration is immense.
"Stomach indigestion after eating even very little makes me wish I could stay without food. Constipation often follows and adds to the general discomfort.
"Besides the physical exhaustion and overall pain, two of the worst symptoms that bother me most are disturbed vision caused by weak eye muscles which cannot be corrected by glasses. This causes an inability to focus as well as blurriness and dizziness.
"The other more disabling symptom is cognitive dysfunction and impaired memory. When I am having a bad day my brain fog and mental exhaustion are so severe that I won't be able to make sense of a simple sentence. I won't be able to connect the meaning of the first part of the sentence to the last part. It feels as if someone is talking to me in a language I never learnt. I feel really confused and dumb!
"On days when ME is not so bad I am happier and more hopeful as I don't need to stay in bed and on the sofa all day. I can write a couple of e-mails without having to pay for the effort later or do some cooking and light housework.
"Sometimes I can walk for 15 minutes non-stop on my own and feel fine. I can invite my sister home for a couple of hours. The light hurts me less but I still have to wear sunglasses when out and keep the blind slightly open. Also, I can sleep better and have less nightmares. I can resist the noise better and have a discussion without losing track of what is being said. Once in a while I can go out for a meal with my husband."
Chloe had to stop driving two years ago. After she had a car accident, she realised that when she was looking for cars on one side of the road, by the time she would have turned her head to check for cars on the other side, she would have already forgotten what was on the first side.
Like Chloe, people with ME are easily "overloaded" by sensory stimuli as they are surrounded by too much information, emotional stress and physical effort. They find it extremely difficult to block out background noise to listen to conversations even at a party. This "overload" phenomenon may lead to a "crash" where the person becomes immobilised by physical and mental fatigue. The cognitive symptoms become worse as the person becomes more fatigued.
"I am more house-bound than not and most of the time hammered to the bed or sofa. I spend most of my time alone because people drain me and then I 'crash'. Even talking on the phone exhausts me.
"The loneliness is unbearable at times and therefore depression ensues. Sometimes I force myself to get out of the house even when I'm feeling ill. Then I have to pay the consequences. The light, the noise, the people, the commotion outside is too much stimulus for the brain and I collapse with exhaustion.
"I have lost many friends, many opportunities and even my job. Sometimes you just feel worthless, useless and a burden to everyone else. Sometimes you wish you were never born.
"I have been seeing a homeotherapist for a year or so now and sometimes certain remedies can help alleviate symptoms for a period of time. At present, I am not so down and I'm hopeful that the remedy will keep on making me better even though there is no cure yet!
Mark* is British but he moved to Malta as one of the factors he was suffering from was Seasonal Affective Disorder (SAD). He has been living with ME for about 10 years now but it took some years before he was actually diagnosed with it.
He describes this period of his life as being "very frustrating" as he kept going back to hospital to find out what was actually wrong but they had no information on what the problem was. In winter of 1999/2000 it got to the point where he was having to sleep between 16 and 20 hours a day, and had no energy at all when he was awake.
"A typical day when my symptoms are bad leaves me trapped in the house, barely able to get out of bed. Even concentrating on watching TV or reading a book is very difficult. When my condition is very bad the symptoms I experience not only include fatigue and 'brain fog' but also nausea and physical exhaustion.
"I also have a form of multiple food intolerance, which can be treated by desensitisation therapy.
"My condition has been alternating between good and bad periods over the past several years. But even when I'm 'good' my energy is still far below that of an average person. Most of the time I've been able to work but at the cost of being unable to do anything else.
I would usually collapse into bed as soon as I get home, sleep for a couple of hours, watch TV and then go back to bed. At weekends I would rarely go out as I'd need to rest in order to get through the next working week.
"The greatest difficulty I faced was with unsympathetic managers where I worked. This increased the amount of stress I had which worsened my condition. I have worked with others who were far more understanding and gave me more flexibility especially in coming in late as I tend to be at my worst in the morning."
Despite her ill-health and confined to bed every now and then due to ME, Rebecca Sultana is one of the most vocal when it comes to creating awareness on this condition, as well as being the one to set up the support group for ME which even has its own website: www.mesufferersmalta.org.
"The members in our support group suffer from various degrees of ME and not all sufferers have similar or all the symptoms. I happen to be one of those mostly affected."
John Greensmith, a 54-year-old research psychologist, has been unable to work or have a normal social life since he was diagnosed with ME 20 years ago.
He now runs ME Free For All. org (www.mefreeforall.org) , a single meeting place for people with ME, their carers, doctors and researchers, from all over the world, to gather in order to exchange information and mutual support.
"Around Christmas time of 1987, like many others, I had some flu-like symptoms. I tried to soldier on but wasn't getting better, so I went to see the doctor. I was diagnosed with acute viral pneumonia. A week later, my GP said that my lungs were better and that any other ill feeling was just post-viral debility, which might hang around for a few weeks.
"Unfortunately there is no standard, universally recognised, test for ME. A diagnosis is made by eliminating other known illnesses usually by a battery of blood tests and sometimes an MRI scan.
"ME remains a controversial illness and some doctors openly declare they do not believe it exists, much to the vexation of sufferers. If the patients have a previously good attendance at work or school and only visit the doctor with real health concerns, it is unlikely that it is malingering or hypochondria."
In 2007, Nice, the National Institute for Health and Clinical Excellence, published its guidelines. It recommend only two management or coping strategies for everyone: one of which, Cognitive Behaviour Therapy (CBT) has been developed for psychiatric illnesses, such as anxiety and depression and which remains unproven after four decades and has no lasting benefit, and the other, the Graded Exercise Treatment (GET), which makes some patients irrevocably worse after it has been given.
Although the Nice guidelines say that the treatment should be jointly planned and agreed between therapist and patient and that the patient may decline to have anything at all or ask it to be stopped if it makes them feel uncomfortable, this does not really happen because of the authority of the therapist, or the displeasure of the GP and thus there is a fear of being removed from the list.
"These 'clinical champions' have managed to bulldoze their way past everyone who could have guided them in a more advantageous direction, and now find themselves unable to provide any enduring evidence that their way is working, let alone assure us that their method is doing no harm to anyone.
"It is incredible that some experimental work still in progress (which is a practice unthinkable and unethical in other areas of medical research such as drugs and vaccines) after it has already been introduced, is in use and recommended by the government's advisers.
"A recent conference held by the Royal Society of Medicine entitled 'Chronic Fatigue Syndrome (not Myalgic Encephalomyelitis, even though its agenda will dramatically affect all those affected by ME worldwide) is evoking too much correspondence. Only a select few were invited to hear those in favour of expanding this unproven and unhelpful way excluding ME suffers, those with an alternate opinion on the matter and the media. No transcripts were made available.
"I urge doctors to aim for an early diagnosis and to support calls for more biomedical research and I hope that political representatives will ensure that the illness is recognised and sufferers have sufficient benefits to live on while they are unable to work."
* Names have been changed to protect identities.
The statistics with regards to ME/CFS are still hazy, as no reliable epidemiological studies have been done. In the UK, the official department of health estimates patients with ME to be around 0.02 to 0.04 per cent of the population, which is about 120,000 to 240,000 of the population. In the US, it's reckoned that there about a million sufferers. An epidemiological study led by Derek Pheby,at the University of East Anglia, and sponsored by the Big Lottery is due to report its findings next year.
A current chief medical officer, Prof. Sir Liam Donaldson commissioned a working group on ME. It took three years and in 2002 Prof. Donaldson concluded that ME "is a real illness for real people... left in the wilderness too long".
ME is a neurological disease and the term means Myalgic (muscle pain), Encephalo (related to the brain), Myelitis (inflammation of the spinal cord). Byron Hyde wrote that one of the reasons why physicians were sure they were dealing with an inflammatory illness in the brain when they first encountered it, was that patients in both endemic and epidemic conditions were having this curious diffuse brain injury.
Eighty per cent of those who suffer from the condition do not get better and according to US statistics provided by the Centres for Disease Control only four per cent of patients had full remission. The quality of life is particularly and uniquely disrupted and all patients incur some kind of loss such as loss of jobs, relationships, financial security, future plans, daily routines, hobbies, stamina and naturalness. Activity is reduced to basic survival needs for some and researchers have discovered that the extent of loss suffered by the patients was devastating, both in number and intensity.
What seems to be evident in triggering ME/CFS is a disruption in ion channels in the cell membranes, which can procure a logical basis to the fluctuating symptoms. When the sodium channels are blocked, sodium enters into neural tissues and muscles, followed by water, which causes the neural tissues to swell. Both electron microscopy and laser scanning microscopy have observed this occurrence.
Around 25 per cent of those who are severely affected are house-bound and this includes those who are bedridden, paralysed, can't speak and have to be tube-fed and given 24-hour care.
ME is not synonymous with being tired all the time and "fatigue" is not a defining symptom, not even necessarily a symptom that characterises this complex affliction. If a person is constantly fatigued or tired this should not be taken that he or she is suffering from ME. Fatigue or feeling tired all the time is nowhere close to the specific type of "paralytic weakness" or "muscle fatigue" which are characteristic of ME and which affect every cell and organ in the body, including the brain and the heart.
ME is not just a symptom but an illness recognised by the World Health Organisation since 1969 as a distinct neurological disorder. More than 64 diverse symptoms have been automatically documented in ME, several of which pertain only to this illness. The variability of symptoms varies from day to day and hour to hour.
Chloe's* ME is moderate to severe and quite severe sometimes. She tends to have more bad days and lesser good days. Sometimes there are no good days for months.
"When I am at my worst I cannot get out of bed due to massive exhaustion, very heavy legs and body and pain. Glands swell up and cause discomfort. My breathing suffers even to talk and I get panic attacks and chest pains. Sometimes I get low-grade fever or temperatures below normal. I feel very cold in summer.
"At times I experience pain all over my body and stomach discomfort that keeps me awake all night. Nightmares and disturbed sleep adds to the vicious circle because since I don't sleep well, I get up more exhausted and ME symptoms get worse. I have to keep an eye mask because the little light that comes in from the closed blinds gives me migraine and hurts my eyes. Even traffic noise outside hurts and makes me very irritable.
"The glare of television and computer screens can be too strong and painful. Reading a book is quite exhausting so the frustration is immense.
"Stomach indigestion after eating even very little makes me wish I could stay without food. Constipation often follows and adds to the general discomfort.
"Besides the physical exhaustion and overall pain, two of the worst symptoms that bother me most are disturbed vision caused by weak eye muscles which cannot be corrected by glasses. This causes an inability to focus as well as blurriness and dizziness.
"The other more disabling symptom is cognitive dysfunction and impaired memory. When I am having a bad day my brain fog and mental exhaustion are so severe that I won't be able to make sense of a simple sentence. I won't be able to connect the meaning of the first part of the sentence to the last part. It feels as if someone is talking to me in a language I never learnt. I feel really confused and dumb!
"On days when ME is not so bad I am happier and more hopeful as I don't need to stay in bed and on the sofa all day. I can write a couple of e-mails without having to pay for the effort later or do some cooking and light housework.
"Sometimes I can walk for 15 minutes non-stop on my own and feel fine. I can invite my sister home for a couple of hours. The light hurts me less but I still have to wear sunglasses when out and keep the blind slightly open. Also, I can sleep better and have less nightmares. I can resist the noise better and have a discussion without losing track of what is being said. Once in a while I can go out for a meal with my husband."
Chloe had to stop driving two years ago. After she had a car accident, she realised that when she was looking for cars on one side of the road, by the time she would have turned her head to check for cars on the other side, she would have already forgotten what was on the first side.
Like Chloe, people with ME are easily "overloaded" by sensory stimuli as they are surrounded by too much information, emotional stress and physical effort. They find it extremely difficult to block out background noise to listen to conversations even at a party. This "overload" phenomenon may lead to a "crash" where the person becomes immobilised by physical and mental fatigue. The cognitive symptoms become worse as the person becomes more fatigued.
"I am more house-bound than not and most of the time hammered to the bed or sofa. I spend most of my time alone because people drain me and then I 'crash'. Even talking on the phone exhausts me.
"The loneliness is unbearable at times and therefore depression ensues. Sometimes I force myself to get out of the house even when I'm feeling ill. Then I have to pay the consequences. The light, the noise, the people, the commotion outside is too much stimulus for the brain and I collapse with exhaustion.
"I have lost many friends, many opportunities and even my job. Sometimes you just feel worthless, useless and a burden to everyone else. Sometimes you wish you were never born.
"I have been seeing a homeotherapist for a year or so now and sometimes certain remedies can help alleviate symptoms for a period of time. At present, I am not so down and I'm hopeful that the remedy will keep on making me better even though there is no cure yet!
Mark* is British but he moved to Malta as one of the factors he was suffering from was Seasonal Affective Disorder (SAD). He has been living with ME for about 10 years now but it took some years before he was actually diagnosed with it.
He describes this period of his life as being "very frustrating" as he kept going back to hospital to find out what was actually wrong but they had no information on what the problem was. In winter of 1999/2000 it got to the point where he was having to sleep between 16 and 20 hours a day, and had no energy at all when he was awake.
"A typical day when my symptoms are bad leaves me trapped in the house, barely able to get out of bed. Even concentrating on watching TV or reading a book is very difficult. When my condition is very bad the symptoms I experience not only include fatigue and 'brain fog' but also nausea and physical exhaustion.
"I also have a form of multiple food intolerance, which can be treated by desensitisation therapy.
"My condition has been alternating between good and bad periods over the past several years. But even when I'm 'good' my energy is still far below that of an average person. Most of the time I've been able to work but at the cost of being unable to do anything else.
I would usually collapse into bed as soon as I get home, sleep for a couple of hours, watch TV and then go back to bed. At weekends I would rarely go out as I'd need to rest in order to get through the next working week.
"The greatest difficulty I faced was with unsympathetic managers where I worked. This increased the amount of stress I had which worsened my condition. I have worked with others who were far more understanding and gave me more flexibility especially in coming in late as I tend to be at my worst in the morning."
Despite her ill-health and confined to bed every now and then due to ME, Rebecca Sultana is one of the most vocal when it comes to creating awareness on this condition, as well as being the one to set up the support group for ME which even has its own website: www.mesufferersmalta.org.
"The members in our support group suffer from various degrees of ME and not all sufferers have similar or all the symptoms. I happen to be one of those mostly affected."
John Greensmith, a 54-year-old research psychologist, has been unable to work or have a normal social life since he was diagnosed with ME 20 years ago.
He now runs ME Free For All. org (www.mefreeforall.org) , a single meeting place for people with ME, their carers, doctors and researchers, from all over the world, to gather in order to exchange information and mutual support.
"Around Christmas time of 1987, like many others, I had some flu-like symptoms. I tried to soldier on but wasn't getting better, so I went to see the doctor. I was diagnosed with acute viral pneumonia. A week later, my GP said that my lungs were better and that any other ill feeling was just post-viral debility, which might hang around for a few weeks.
"Unfortunately there is no standard, universally recognised, test for ME. A diagnosis is made by eliminating other known illnesses usually by a battery of blood tests and sometimes an MRI scan.
"ME remains a controversial illness and some doctors openly declare they do not believe it exists, much to the vexation of sufferers. If the patients have a previously good attendance at work or school and only visit the doctor with real health concerns, it is unlikely that it is malingering or hypochondria."
In 2007, Nice, the National Institute for Health and Clinical Excellence, published its guidelines. It recommend only two management or coping strategies for everyone: one of which, Cognitive Behaviour Therapy (CBT) has been developed for psychiatric illnesses, such as anxiety and depression and which remains unproven after four decades and has no lasting benefit, and the other, the Graded Exercise Treatment (GET), which makes some patients irrevocably worse after it has been given.
Although the Nice guidelines say that the treatment should be jointly planned and agreed between therapist and patient and that the patient may decline to have anything at all or ask it to be stopped if it makes them feel uncomfortable, this does not really happen because of the authority of the therapist, or the displeasure of the GP and thus there is a fear of being removed from the list.
"These 'clinical champions' have managed to bulldoze their way past everyone who could have guided them in a more advantageous direction, and now find themselves unable to provide any enduring evidence that their way is working, let alone assure us that their method is doing no harm to anyone.
"It is incredible that some experimental work still in progress (which is a practice unthinkable and unethical in other areas of medical research such as drugs and vaccines) after it has already been introduced, is in use and recommended by the government's advisers.
"A recent conference held by the Royal Society of Medicine entitled 'Chronic Fatigue Syndrome (not Myalgic Encephalomyelitis, even though its agenda will dramatically affect all those affected by ME worldwide) is evoking too much correspondence. Only a select few were invited to hear those in favour of expanding this unproven and unhelpful way excluding ME suffers, those with an alternate opinion on the matter and the media. No transcripts were made available.
"I urge doctors to aim for an early diagnosis and to support calls for more biomedical research and I hope that political representatives will ensure that the illness is recognised and sufferers have sufficient benefits to live on while they are unable to work."
* Names have been changed to protect identities.