Monday, 25 August 2008-
Comments made in the letter page of the Belfast Telegraph re article below
http://www.belfasttelegraph.co.uk/opinion/letters/specialist-help-for-me-sufferers-is-lacking-13948642.html
We write referring to the Belfast Telegraph article (August 12) on a mother coping with her 15- year-old son David, who suffers from ME.
As this article highlighted only one family's experiences and views, we thought we would like to make you aware of our experience which differs considerably from the one in your article.
We are parents of a teenage daughter who has severe ME. Five years ago as we struggled to find a diagnosis, we watched our formerly active child become bed-bound, unable to hold a conversation and suffer from extreme light and sound sensitivity.
Like the mother in your article, we also despaired over the total lack of specialist services for ME sufferers in Northern Ireland.
However, our experience of support with the illness has been different to that expressed in your article. In contrast, never once has psychiatric help been suggested to us, which confirmed our opinion that ME is not ‘all in the mind’.
In the early days of the illness we searched long and hard for advice and help. As a result, we have been provided with some level of support for which we are very grateful. We have had domiciliary visits and telephone conversations from a local consultant, offering effective medication and advice about ‘pacing’ and general support.
Over the years, visits and practical support have been provided by an occupational therapist and a physiotherapist, both of whom have succeeded in understanding our daughter's illness and have therefore offered only appropriate advice. In addition we have had good support from our local ME Association here in Belfast.
But like the family in your article, we agree that specialist services for ME sufferers here in Northern Ireland are sadly lacking and this needs to be urgently and properly addressed.
But also we would want to commend those professionals who have offered excellent help and advice in our situation.
PAUL AND JANET McCANN
Belfast
Thursday, 28 August 2008
Tuesday, 12 August 2008
Gráinne McCarry : ‘ME has stolen my son’s life, but there’s no help’
The article below appeared in today's Belfast Telegraph
http://www.belfasttelegraph.co.uk/opinion/grinne-mccarry--lsquome-has-stolen-my-sonrsquos-life-but-therersquos-no-helprsquo-13936656.html?startindex=-1
ME sufferer David Christie (15) has to spend 19 hours a day in bed. His mum, Antoinette, talks to Gráinne McCarry
As a young boy, David was involved in everything. He was a scout and he loved trampolining and horse riding. He would have played any sport and he was an Irish national champion in ju-jitzu in 2002. He was no different from any other wee boy. He was always outdoors and he never gave me any trouble. He got involved in everything that was going. He was such a thoughtful child — a wee gentleman.
His sickness began when he developed a rash in February 2003 at the age of 10. The dermatologist at the Royal Children’s Hospital in Belfast had never seen it before. He took photographs and a biopsy and diagnosed David with the skin condition pleva, which is caused by a viral infection. He was given cream for it and still attends the dermatologist to this day about it.
The following year, David began St Mary’s Grammar School. He was so alive and full of energy and he used to walk six miles every day to school and back. Then, all of a sudden he started to lose his energy and we had to give him a lift to the school gate because he wasn’t fit to walk it.
When his condition deteriorated, he didn’t have the energy to walk from the gates up the steep hill into school. We got a special pass from the principal to drive to the school gates. Then, it got to the stage where he couldn’t manage school at all.
After six and a half months of his first year there we had to take him out of school. He wasn’t fit to attend.
He was complaining of chest pains, nausea, fatigue and a general feeling of unwellness. For a long time, we didn’t know what was wrong with him. He was diagnosed with ME (Myalgic Encephalomyelitis) in October 2005.
ME is a multi-symptomatic, organic disease which affects each sufferer differently. David’s symptoms include hallucinations, disturbed sleep, memory loss, aches and pains, concentration difficulties, mouth ulcers, sore throats and balance and co-ordination difficulties.
I was working as a fitness instructor at the time, taking classes in different leisure centres around the city, but I had to give it up to take care of David. I take a couple of classes every week now, but I feel guilty leaving the house.
His schoolfriends have all moved on. I doubt if any of them would recognise David if they saw him today.
He has long curly hair to his shoulder because he hasn’t been able to get it cut. He just looks ill ... he doesn’t look like himself. The ‘David’ everyone else remembers was a swarthy, good-looking wee boy. Now, he can’t even manage to wash his hands and face by himself.
He was given anti-depressants when he was 14 and he just lies in bed 19 hours a day. It wouldn’t be fair to take a photograph of him as he is now. He’s lost touch with everyone. He’s growing up in his bed and has no contact with anyone outside of the house ... just me, his daddy, Paul, and his two brothers, Paul junior and Conor.
Even to get him to his medical appointments is a struggle. People don’t understand the effort behind it all. The consultant doesn’t see what we have to do to get David to the hospital. For a lunchtime appointment, I have to start waking him at 9.30am in order to get him washed and dressed on time. His muscles have deteriorated so much that if he could make it down the stairs that would be an extremely good day for him. He only ever goes outside when he has a hospital appointment.
Another ME sufferer explained the disease to me as living in a semi-coma. When David is awake I tell him things and the next time he wakes up he can’t remember them. He couldn’t believe it when I told him that his big brother Paul was 21. He just kept repeating “21”. He was so shocked.
Life is passing him by and it breaks my heart to see him like this. He should be at school studying and hanging out with his friends. He’ll never get those years back. His time as a teenager is a very important part of his formative years.
Life is continuing on when he is asleep. A few weeks ago he asked me when Mother’s Day was. When I told him it was over, he was so annoyed. I can’t even say he lives his life because he doesn’t live. He exists. It’s a living death.
His diet’s very poor, he’s underweight. He’s growing into a young man in bed. We didn’t know much about the illness until David was diagnosed with it. I’d heard of it, but I didn’t realise how severe it was.
Terms like ‘yuppy flu’ and ‘the sleepy sickness’ are an insult to ME sufferers. ME has been a recognised illness by theWorld Health Organisation since 1969 and by the Royal Society of Medicine since 1978.
There’s absolutely no help for David here. ME sufferers here are offered a psychiatrist in Northern Ireland. David does not need a psychiatrist. He needs someone to help him get better.
There are two types of therapy available here — Cognitive Behaviour Therapy (CBT) and Graded Exercise Therapy (GET).
The first tries to get the patient to change their attitude towards their illness. David doesn’t have an attitude towards his illness. He doesn’t have the energy to have an attitude.
The other option, GET, is too dangerous for David as his muscles are extremely weak.
What is being offered in Northern Ireland is psychiatric care. ME is not a psychiatric illness. There is a significant amount of research out there proving that ME exists. Recently, Dr Derek Enlander, an Ulster-born doctor who practices in New York, came over to see a small number of ME sufferers in Belfast at a private clinic on the Antrim Road.
From David’s medical notes, he was able to tell me that my son tested positive for the Cosackie B virus which is a variant of ME when he was 18 months old. He took sick with a virus then and it must have been in his system since.
Dr Enlander said that David’s immune system was dysfunctional. He was given tablets and medicine containing vitamin and minerals, and a weekly injection. This is not a cure, but if it works it could boost his immune system by 65%. It costs me £240 every month to pay for this and I can’t afford it.
David got his heart tracked by a scanning machine and it showed that his heartbeat was irregular, also.
I’m more angry now than I’ve ever been. To think that this medicine I’ve received from Dr Enlander has been out there all this time. We just didn’t know about it. It angered me that David’s been left to deteriorate this far.
If we’d known about this sooner, David could have been relieved of some of his suffering.
It’s a national scandal that ME sufferers can only get this type of treatment if they are prepared to pay for it. David has been neglected for far too long. He has been left to waste away in his bed. It’s so desperately inhumane.”
http://www.belfasttelegraph.co.uk/opinion/grinne-mccarry--lsquome-has-stolen-my-sonrsquos-life-but-therersquos-no-helprsquo-13936656.html?startindex=-1
ME sufferer David Christie (15) has to spend 19 hours a day in bed. His mum, Antoinette, talks to Gráinne McCarry
As a young boy, David was involved in everything. He was a scout and he loved trampolining and horse riding. He would have played any sport and he was an Irish national champion in ju-jitzu in 2002. He was no different from any other wee boy. He was always outdoors and he never gave me any trouble. He got involved in everything that was going. He was such a thoughtful child — a wee gentleman.
His sickness began when he developed a rash in February 2003 at the age of 10. The dermatologist at the Royal Children’s Hospital in Belfast had never seen it before. He took photographs and a biopsy and diagnosed David with the skin condition pleva, which is caused by a viral infection. He was given cream for it and still attends the dermatologist to this day about it.
The following year, David began St Mary’s Grammar School. He was so alive and full of energy and he used to walk six miles every day to school and back. Then, all of a sudden he started to lose his energy and we had to give him a lift to the school gate because he wasn’t fit to walk it.
When his condition deteriorated, he didn’t have the energy to walk from the gates up the steep hill into school. We got a special pass from the principal to drive to the school gates. Then, it got to the stage where he couldn’t manage school at all.
After six and a half months of his first year there we had to take him out of school. He wasn’t fit to attend.
He was complaining of chest pains, nausea, fatigue and a general feeling of unwellness. For a long time, we didn’t know what was wrong with him. He was diagnosed with ME (Myalgic Encephalomyelitis) in October 2005.
ME is a multi-symptomatic, organic disease which affects each sufferer differently. David’s symptoms include hallucinations, disturbed sleep, memory loss, aches and pains, concentration difficulties, mouth ulcers, sore throats and balance and co-ordination difficulties.
I was working as a fitness instructor at the time, taking classes in different leisure centres around the city, but I had to give it up to take care of David. I take a couple of classes every week now, but I feel guilty leaving the house.
His schoolfriends have all moved on. I doubt if any of them would recognise David if they saw him today.
He has long curly hair to his shoulder because he hasn’t been able to get it cut. He just looks ill ... he doesn’t look like himself. The ‘David’ everyone else remembers was a swarthy, good-looking wee boy. Now, he can’t even manage to wash his hands and face by himself.
He was given anti-depressants when he was 14 and he just lies in bed 19 hours a day. It wouldn’t be fair to take a photograph of him as he is now. He’s lost touch with everyone. He’s growing up in his bed and has no contact with anyone outside of the house ... just me, his daddy, Paul, and his two brothers, Paul junior and Conor.
Even to get him to his medical appointments is a struggle. People don’t understand the effort behind it all. The consultant doesn’t see what we have to do to get David to the hospital. For a lunchtime appointment, I have to start waking him at 9.30am in order to get him washed and dressed on time. His muscles have deteriorated so much that if he could make it down the stairs that would be an extremely good day for him. He only ever goes outside when he has a hospital appointment.
Another ME sufferer explained the disease to me as living in a semi-coma. When David is awake I tell him things and the next time he wakes up he can’t remember them. He couldn’t believe it when I told him that his big brother Paul was 21. He just kept repeating “21”. He was so shocked.
Life is passing him by and it breaks my heart to see him like this. He should be at school studying and hanging out with his friends. He’ll never get those years back. His time as a teenager is a very important part of his formative years.
Life is continuing on when he is asleep. A few weeks ago he asked me when Mother’s Day was. When I told him it was over, he was so annoyed. I can’t even say he lives his life because he doesn’t live. He exists. It’s a living death.
His diet’s very poor, he’s underweight. He’s growing into a young man in bed. We didn’t know much about the illness until David was diagnosed with it. I’d heard of it, but I didn’t realise how severe it was.
Terms like ‘yuppy flu’ and ‘the sleepy sickness’ are an insult to ME sufferers. ME has been a recognised illness by theWorld Health Organisation since 1969 and by the Royal Society of Medicine since 1978.
There’s absolutely no help for David here. ME sufferers here are offered a psychiatrist in Northern Ireland. David does not need a psychiatrist. He needs someone to help him get better.
There are two types of therapy available here — Cognitive Behaviour Therapy (CBT) and Graded Exercise Therapy (GET).
The first tries to get the patient to change their attitude towards their illness. David doesn’t have an attitude towards his illness. He doesn’t have the energy to have an attitude.
The other option, GET, is too dangerous for David as his muscles are extremely weak.
What is being offered in Northern Ireland is psychiatric care. ME is not a psychiatric illness. There is a significant amount of research out there proving that ME exists. Recently, Dr Derek Enlander, an Ulster-born doctor who practices in New York, came over to see a small number of ME sufferers in Belfast at a private clinic on the Antrim Road.
From David’s medical notes, he was able to tell me that my son tested positive for the Cosackie B virus which is a variant of ME when he was 18 months old. He took sick with a virus then and it must have been in his system since.
Dr Enlander said that David’s immune system was dysfunctional. He was given tablets and medicine containing vitamin and minerals, and a weekly injection. This is not a cure, but if it works it could boost his immune system by 65%. It costs me £240 every month to pay for this and I can’t afford it.
David got his heart tracked by a scanning machine and it showed that his heartbeat was irregular, also.
I’m more angry now than I’ve ever been. To think that this medicine I’ve received from Dr Enlander has been out there all this time. We just didn’t know about it. It angered me that David’s been left to deteriorate this far.
If we’d known about this sooner, David could have been relieved of some of his suffering.
It’s a national scandal that ME sufferers can only get this type of treatment if they are prepared to pay for it. David has been neglected for far too long. He has been left to waste away in his bed. It’s so desperately inhumane.”
Tuesday, 5 August 2008
Could ME be caused by parasites in the brain?
May be reposted:
Could ME be caused by parasites in the brain?
Anyone with ME knows that our muscles, brains and nerves are under
attack. Logically, there must be something that has either damaged
our brains, and the nerves that leave the brain and spine to control
our muscles, or there is something that is still continually
attacking our whole nervous system.
What sort of thing, apart from trauma to the brain through accidents
etc, can do this? Most doctors end up by saying we must have had a
virus, after they've ruled out things like diabetes, thyroid disease
and blood disorders such as anaemia.
They will of course have checked that we don't have one of the nasty
viruses, or at least one would hope so, and as long as we don't have
something as contagious as AIDS (which is a public health risk) and
we are not dangerously ill or dieing, then we are left to recover as
best we can.
Anti-viral drugs are very expensive but some such as Acyclovir are
used to treat certain Herpes virus infections. Even without anti-
viral drugs, many viral infections usually diminish with time, so the
normal medical treatment would be to order rest and recuperation, and
perhaps to take well-proven supplements to strengthen our immune
systems.
But how many of us are aware that there are bacterial and parasitic
infections that can cause the very same symptoms as ME? The bacteria
and parasites can cross into the brain and cause anything from
fatigue to schizophrenia, or from movement disorders to outright
psychoses.
Hundreds of millions of people in the world are infected by the
malarial parasite, which is carried by mosquitoes, and which causes
great fatigue and death. There is a chance of catching malaria in the
UK but the symptoms would not normally be confused with the ones seen
in ME. There could be a problem though that strong healthy people in
Britain have parasites like malaria and are not showing full-blown
symptoms.
In the warmer regions of the world, over 250 million people are
affected by such diseases as onchocerciasis (river blindness) and
trypanosomiasis (sleeping sickness, and the similar variation, Chagas
Disease). In temperate zones like ours, there is an infection called
Lyme disease, spread by the bites of ticks and possibly by mosquitoes
and flies, which is now believed to have infected over 20 million
Americans and hundreds of thousands of Europeans.
Onchocerciasis is caused by a tiny roundworm, called a nematode,
while a protozoan (a single-celled organism like an amoeba) causes
trypanosomiasis. Lyme disease is due to a bacterium, a very unusual
bacterium related to the one that causes Weil's disease and the one
that causes Syphilis
Onchocerciasis rarely leads to blindness, so the name river blindness
is a bit misleading. Usually, the victims suffer fatigue, malaise,
backache, headache and many other symptoms that ruin their lives long
before they go blind.
Trypanosomiasis is more deadly but tends to occur in sporadic
epidemics. Lyme disease, however, causes symptoms and even genetic
markers for disease that are identical to those seen in ME. The UK
government, when pressed, admitted recently that Lyme disease could
cause ME.
But why worry about these things then, unless we travel a great deal
to tropical or equatorial areas? Or frequently get bitten by ticks?
And why worry even then, when we have such state of the art medicine
in the UK, which would soon detect any parasitic infection and
rapidly treat it?
Unfortunately, it's becoming obvious that the UK has been hopeless at
identifying people with these diseases. There is documented evidence
from a clever and dedicated researcher, that onchocerciasis has been
repeatedly missed as the cause of fatiguing illness, especially in
armed forces veterans. My own research over the last 4 years has led
me to discover that tick-borne infections have been ignored and under-
diagnosed in Britain. This is despite evidence from the World Health
Organisation that Lyme disease was already widespread and endemic in
Britain in 1989.
The latest medical knowledge, from several medical sources, is that
ticks are carrying the Lyme bacterium, protozoan infections, semi-
virus like organisms called Rickettsias, and also, perhaps worst of
all, they are capable of transmitting nematode worms. They are not
exactly like the nematodes seen in onchocerciasis, but are equally
dangerous.
Some people believe that a worm infection could be preventing many
people from getting better even though they have received
antibiotics. Specific drugs have to be used to get rid of nematode
worms. In Egypt from 2002 onwards, the whole population was given
Ivermectin and other drugs over a 4-year period, because nematode
infections are so widespread there.
I have personally spoken to 5 Lyme patients who have had samples of
their blood taken so that it could be viewed under the microscope.
They have actual photos, taken down the microscope, of these strange
worms swimming in their blood. The worms are believed to block our
lymph vessels and perhaps the small blood vessels. They probably hide
from our immune systems in the lungs and intestine.
Some people with ME who have had successful therapy with herbs,
especially Chinese herbs, may have unknowingly been killing nematode
worms. Ancient peoples knew they were vulnerable to parasites, but it
is something we seem to have forgotten about in the modern age.
There are many others with Lyme disease who have written on the
Internet that they have begun to take anti-worming medicine such as
Ivermectin. It is still early days yet, as to whether people will be
able to be cured; the treatment has to be taken repeatedly over a
long time..
For the last 3 years, questions have been asked in parliament about
the numbers of undiagnosed cases of Lyme disease and tick-borne
diseases in general - (reply: "not known or even looked for") and the
adequacy of the diagnostic tests - (reply: "tests are completely top
notch and rarely miss a case, but we are trying to find better
ones"). Everyone wonders how the Health Ministry can say one minute
that the tests are fine, then the next minute that they are working
really hard to develop better ones.
The government are either completely ignorant about the situation, or
have decided for some reason that they don't think there is really a
problem.
No one really knows how many people with ME could have parasitic
infections. Hardly anyone will have been tested for them, and even
the tests for the borrelia infection of Lyme disease are said to miss
at least 50% of cases. It might not just be tick bites that carry
these diseases because the Lyme bacterium has been found in many of
the biting insects and flies. There is even evidence that the disease
can be passed from mother to child, or through intimate contact.
Everyone has parasites in their bodies; some of them are "friendly
bacteria" and most of them, even tiny nematode worms, are harmless
because our immune systems can usually keep them at a low level. We
pick things up from the soil, our pets, even from dust particles in
the air.
A friend who lived in South Africa told me that every 6 months, she
and her family, as well as the pets, would all be given worming
tablets. It was regarded as a normal sensible thing to do. In the
UK, there are over-the-counter drugs such as Pripsen, which we can
take to get rid of tapeworms or threadworms. But the nematode type of
worm, the microfilaria which we can't see without a microscope, will
not be cured by the Pripsen type of medicine, especially if the
infection has been in our bodies for more than a few months.
It's a good idea though, to perhaps think of worming ourselves on a
regular basis, because it could at least slow down any nematodes.
Perhaps we all need to go to the vets!
Could ME be caused by parasites in the brain?
Anyone with ME knows that our muscles, brains and nerves are under
attack. Logically, there must be something that has either damaged
our brains, and the nerves that leave the brain and spine to control
our muscles, or there is something that is still continually
attacking our whole nervous system.
What sort of thing, apart from trauma to the brain through accidents
etc, can do this? Most doctors end up by saying we must have had a
virus, after they've ruled out things like diabetes, thyroid disease
and blood disorders such as anaemia.
They will of course have checked that we don't have one of the nasty
viruses, or at least one would hope so, and as long as we don't have
something as contagious as AIDS (which is a public health risk) and
we are not dangerously ill or dieing, then we are left to recover as
best we can.
Anti-viral drugs are very expensive but some such as Acyclovir are
used to treat certain Herpes virus infections. Even without anti-
viral drugs, many viral infections usually diminish with time, so the
normal medical treatment would be to order rest and recuperation, and
perhaps to take well-proven supplements to strengthen our immune
systems.
But how many of us are aware that there are bacterial and parasitic
infections that can cause the very same symptoms as ME? The bacteria
and parasites can cross into the brain and cause anything from
fatigue to schizophrenia, or from movement disorders to outright
psychoses.
Hundreds of millions of people in the world are infected by the
malarial parasite, which is carried by mosquitoes, and which causes
great fatigue and death. There is a chance of catching malaria in the
UK but the symptoms would not normally be confused with the ones seen
in ME. There could be a problem though that strong healthy people in
Britain have parasites like malaria and are not showing full-blown
symptoms.
In the warmer regions of the world, over 250 million people are
affected by such diseases as onchocerciasis (river blindness) and
trypanosomiasis (sleeping sickness, and the similar variation, Chagas
Disease). In temperate zones like ours, there is an infection called
Lyme disease, spread by the bites of ticks and possibly by mosquitoes
and flies, which is now believed to have infected over 20 million
Americans and hundreds of thousands of Europeans.
Onchocerciasis is caused by a tiny roundworm, called a nematode,
while a protozoan (a single-celled organism like an amoeba) causes
trypanosomiasis. Lyme disease is due to a bacterium, a very unusual
bacterium related to the one that causes Weil's disease and the one
that causes Syphilis
Onchocerciasis rarely leads to blindness, so the name river blindness
is a bit misleading. Usually, the victims suffer fatigue, malaise,
backache, headache and many other symptoms that ruin their lives long
before they go blind.
Trypanosomiasis is more deadly but tends to occur in sporadic
epidemics. Lyme disease, however, causes symptoms and even genetic
markers for disease that are identical to those seen in ME. The UK
government, when pressed, admitted recently that Lyme disease could
cause ME.
But why worry about these things then, unless we travel a great deal
to tropical or equatorial areas? Or frequently get bitten by ticks?
And why worry even then, when we have such state of the art medicine
in the UK, which would soon detect any parasitic infection and
rapidly treat it?
Unfortunately, it's becoming obvious that the UK has been hopeless at
identifying people with these diseases. There is documented evidence
from a clever and dedicated researcher, that onchocerciasis has been
repeatedly missed as the cause of fatiguing illness, especially in
armed forces veterans. My own research over the last 4 years has led
me to discover that tick-borne infections have been ignored and under-
diagnosed in Britain. This is despite evidence from the World Health
Organisation that Lyme disease was already widespread and endemic in
Britain in 1989.
The latest medical knowledge, from several medical sources, is that
ticks are carrying the Lyme bacterium, protozoan infections, semi-
virus like organisms called Rickettsias, and also, perhaps worst of
all, they are capable of transmitting nematode worms. They are not
exactly like the nematodes seen in onchocerciasis, but are equally
dangerous.
Some people believe that a worm infection could be preventing many
people from getting better even though they have received
antibiotics. Specific drugs have to be used to get rid of nematode
worms. In Egypt from 2002 onwards, the whole population was given
Ivermectin and other drugs over a 4-year period, because nematode
infections are so widespread there.
I have personally spoken to 5 Lyme patients who have had samples of
their blood taken so that it could be viewed under the microscope.
They have actual photos, taken down the microscope, of these strange
worms swimming in their blood. The worms are believed to block our
lymph vessels and perhaps the small blood vessels. They probably hide
from our immune systems in the lungs and intestine.
Some people with ME who have had successful therapy with herbs,
especially Chinese herbs, may have unknowingly been killing nematode
worms. Ancient peoples knew they were vulnerable to parasites, but it
is something we seem to have forgotten about in the modern age.
There are many others with Lyme disease who have written on the
Internet that they have begun to take anti-worming medicine such as
Ivermectin. It is still early days yet, as to whether people will be
able to be cured; the treatment has to be taken repeatedly over a
long time..
For the last 3 years, questions have been asked in parliament about
the numbers of undiagnosed cases of Lyme disease and tick-borne
diseases in general - (reply: "not known or even looked for") and the
adequacy of the diagnostic tests - (reply: "tests are completely top
notch and rarely miss a case, but we are trying to find better
ones"). Everyone wonders how the Health Ministry can say one minute
that the tests are fine, then the next minute that they are working
really hard to develop better ones.
The government are either completely ignorant about the situation, or
have decided for some reason that they don't think there is really a
problem.
No one really knows how many people with ME could have parasitic
infections. Hardly anyone will have been tested for them, and even
the tests for the borrelia infection of Lyme disease are said to miss
at least 50% of cases. It might not just be tick bites that carry
these diseases because the Lyme bacterium has been found in many of
the biting insects and flies. There is even evidence that the disease
can be passed from mother to child, or through intimate contact.
Everyone has parasites in their bodies; some of them are "friendly
bacteria" and most of them, even tiny nematode worms, are harmless
because our immune systems can usually keep them at a low level. We
pick things up from the soil, our pets, even from dust particles in
the air.
A friend who lived in South Africa told me that every 6 months, she
and her family, as well as the pets, would all be given worming
tablets. It was regarded as a normal sensible thing to do. In the
UK, there are over-the-counter drugs such as Pripsen, which we can
take to get rid of tapeworms or threadworms. But the nematode type of
worm, the microfilaria which we can't see without a microscope, will
not be cured by the Pripsen type of medicine, especially if the
infection has been in our bodies for more than a few months.
It's a good idea though, to perhaps think of worming ourselves on a
regular basis, because it could at least slow down any nematodes.
Perhaps we all need to go to the vets!
Friday, 25 July 2008
MEA letter to Rt Hon James Purnell
MAY BE REPOSTED
MEA letter to Rt Hon James Purnell, Secretary of State for Work and Pensions, available at:
http://www.meassoci ation.org. uk/content/ view/611/ 70
ENDS
MEA letter to Rt Hon James Purnell, Secretary of State for Work and Pensions, available at:
http://www.meassoci ation.org. uk/content/ view/611/ 70
ENDS
Thursday, 24 July 2008
EXTREMELY URGENT – Re Prof Basant Puri Study – PERMISSION TO
> EXTREMELY URGENT – Re Prof Basant Puri Study – PERMISSION TO
REPOST.
>
> Calling all physically fit carers, friends and relatives of ME
> patients. Your help is very urgently needed and may be of great
> assistance to the UK ME community.
>
> Professor Basant Puri urgently needs 10 PHYSICALLY FIT individuals
> between the ages of 18 to 55 to contact him concerning
participation
> in his current ME/CFS biomedical brain studies on ME/CFS patients.
> These individuals will act as healthy `control-subjects' in his
study
> and must not have ME/CFS or have had any major illness. They will
> attend Hammersmith Hospital on ONE of two dates in London (Sunday
3
> August OR Sunday 10 August 2008) for MRI brain-imaging, cognitive
> function tests and an EEG. Candidates must not have any metal
> implants in their body in order to go through the MRI scanner:
most
> dental work is safe in this respect but needs to be mentioned to
> Professor Puri to be verified. Participants who have worked with
> grinding metals/sparks must also mention this. There is also space
> for one more properly diagnosed ME patient to participate in the
> study on one of these dates.
>
> Participants will need to fund their own travel costs but there is
> ample parking available in the Hammersmith Hospital car park.
Please
> do NOT contact me about this matter but please do contact
Professor
> Puri direct as soon as you can for full details if you can
> help/participate. His email address is:
>
> basant.puri@ ...
>
> It is very important for the ME community that this work is
completed
> as soon as possible and that these study slots are filled. PLEASE
> HELP. Treat yourself to an interesting trip to London in aid of a
> good cause!
>
> Many thanks indeed.
>
> Kev Short.
> Anglia ME Action.
>
> PERMISSION TO REPOST.
REPOST.
>
> Calling all physically fit carers, friends and relatives of ME
> patients. Your help is very urgently needed and may be of great
> assistance to the UK ME community.
>
> Professor Basant Puri urgently needs 10 PHYSICALLY FIT individuals
> between the ages of 18 to 55 to contact him concerning
participation
> in his current ME/CFS biomedical brain studies on ME/CFS patients.
> These individuals will act as healthy `control-subjects' in his
study
> and must not have ME/CFS or have had any major illness. They will
> attend Hammersmith Hospital on ONE of two dates in London (Sunday
3
> August OR Sunday 10 August 2008) for MRI brain-imaging, cognitive
> function tests and an EEG. Candidates must not have any metal
> implants in their body in order to go through the MRI scanner:
most
> dental work is safe in this respect but needs to be mentioned to
> Professor Puri to be verified. Participants who have worked with
> grinding metals/sparks must also mention this. There is also space
> for one more properly diagnosed ME patient to participate in the
> study on one of these dates.
>
> Participants will need to fund their own travel costs but there is
> ample parking available in the Hammersmith Hospital car park.
Please
> do NOT contact me about this matter but please do contact
Professor
> Puri direct as soon as you can for full details if you can
> help/participate. His email address is:
>
> basant.puri@ ...
>
> It is very important for the ME community that this work is
completed
> as soon as possible and that these study slots are filled. PLEASE
> HELP. Treat yourself to an interesting trip to London in aid of a
> good cause!
>
> Many thanks indeed.
>
> Kev Short.
> Anglia ME Action.
>
> PERMISSION TO REPOST.
Wednesday, 16 July 2008
Website for patients to rate GPs and hospital consultants
Website for patients to rate GPs and hospital consultants
A website launching today, iwantgreatcare.org, will let patients rate and review every medic who has treated them
http://www.iwantgreatcare.org/
A website launching today, iwantgreatcare.org, will let patients rate and review every medic who has treated them
http://www.iwantgreatcare.org/
Letter #4 in reply to "You ain't crazy. It might be Chronic Fatigue Syndrome
Letter #4 in reply to "You ain't crazy. It might be Chronic Fatigue Syndrome" in Frost Illustrated, Fort Wayne, Indiana, USA, 8 July 2008
I'm reposting Mary Schweitzer's letter here, as the link is a bit
confusing~~Liz
Thank you for taking the disease so misnamed, "Chronic Fatigue
Syndrome," more seriously than the media normally does. I have been
fighting this illness for two decades, however, and, regrettably, at
this stage of the game everything is NOT going to be all right for
those who have it.
I have been in cutting edge studies that show I have an abnormal
immune
defect in the body's biochemical antiviral pathway which makes it
extremely difficult to fend off viruses, and I also have a low
natural
killer cell count. I have chronically recurring Epstein-Barr, and a
vicious virus originally discovered in AIDS patients called HHV-6A
(Human Herpesvirus 6, Variant A), which gave me muscle pain,
encephalitis, and significant CNS disruption - in other words,
Myalgic
Encephalomyelitis, which was what the disease was called in Britain
before the U.S. NIH came up with the name "chronic fatigue syndrome"
(at the time believing it was chronic Epstein-Barr virus). A
scientific committee voted (not unamimously) for the new name, but it
was promoted by the head of infectious diseases at NIH at the time.
HHV-6, Variant B, causes roseola and is very common. It is not
possible
at the moment for commercial laboratories to distinguish between the
variants, so there can be a lot of confusion. However, an active
case
of HHV-6 in an adult usually means they have Variant A.
The disease caused terrible pain in addition to the muscle aches:
migraine-level headaches, and constant severe pain behind my eyes and
in the back of my neck. I had trouble understanding what was said to
me, and trouble saying what I meant - I would often use an entirely
wrong word, such as "map" for "tablecloth". I once poured an entire
cup of coffee into a silverware drawer convinced it was a cup. I had
ataxia, which made it difficult to walk and impossible to perform
normal functions like loading a dishwasher - I would slam one glass
unto another, unable to gauge the distance properly. Eventually I
became too weak to walk even a few feet. I only left the house if
someone in the family took me in a wheelchair, which they had to
push,
and I was mostly bedridden. Years later, when I was much better, I
still scored so low on an oxygen-reuptake treadmill test that I would
be considered permanently disabled on that basis alone.
I benefitted from an experimental drug that was both an antiviral and
an immune modulator, "Ampligen," which is unfortunately still in
Phase
III development. In six months, my biomarkers were gone. I could
read
again, walk again (though slowly), drive a car again. I cannot
explain
the sheer joy of being able to walk on a beach when you thought you
never would again. And I danced at my son's wedding that August.
The cost to my family for that one drug,which required twice weekly
infusions, was $20,000 in cash. I lost the drug in February. The
last
time I had to go off it,I did well for a year, and then relapsed
badly.
I am not looking forward to a repeat of that relapse, and hope that
perhaps a combination of an antiviral such as Valcyte (being used at
Stanford by Robert Montoya) and perhaps IM gamma globulin can help me
stave off a reappearance of HHV-6A and the 37kDa Rnase-L immune
defect.
I am fortunate in having been a college professor, married to a
college
professor, and therefore familiar with the means to find out what
testing, and what experimental drugs, might be available to me. It
took four years from my first collapse in my office before I finally
tested positive for something, however. And I was lucky that
Ampligen
worked for me, and that my family was willing (and able) to sacrifice
so we could pay for it.
Think about what was said in your own article: only 15% (10% by some
studies) of patients have any idea what is wrong with them. The vast
majority of those with a diagnosis are white and upper middle class.
That tells you something about who is not being diagnosd. I live
near
a major east coast city and there is no doctor in driving distance
who
understands my disease. Nobody in public clinics understands it.
I was sicker than most people who have it - I seemed to have a
progressive form, what some British patients call a "twenty-five
percenter" because they believe 25 percent have the disease that
badly. But imagine what my life would have been like without my
family, and without access to medical care. For me, it was not a
matter of finding work difficult - even working a cash register at
McDonald's would have been impossible. I know people with the
disease
who had to live on the streets for a time - I am certain there must
be
more. I used to have blackouts - what happens to a person who has
blackouts but nobody believes there is anything wrong wih them? What
happens to people as sick as I was, without medical care or a family
to
take care of them?
Three years ago, the 23-year-old son of a dear friend died in his
sleep. He had been diagnosed with chronic fatigue syndrome since
puberty. But the autopsy showed that he died of a longstanding viral
infestation - he died of myocarditis. There have been other deaths.
The CDC simply change the diagnosis when one is brought to their
attention.
Ultimately, Chronic Fatigue Syndrome is a misdiagnosis. I have an
abnormal immune system and am beset with disabling viruses, and I
have
the biomarkers to prove it. Other people diagnosed with CFS may have
different medical problems - but they are all serious. In bundling
them all together unto a vague concept of tiredness, the CDC has done
us all a great disservice - and in the process, endangered the health
of the nation. A million people have CFS according to the best
independent study - and many of us were contageous at some point in
the
disease. The name tells you nothing - chronic fatigue on this level
is
also part of congestive heart failure, tuberculosis, hepatitis - most
serious diseases. It did lead me to scientists working on biomarkers
and treatments, but for most of the public the name has prevented
appropriate diagnosis and treatment.
Thank you again for bringing this heartbreaking disease to the
public's
attention.
Mary Schweitzer
I'm reposting Mary Schweitzer's letter here, as the link is a bit
confusing~~Liz
Thank you for taking the disease so misnamed, "Chronic Fatigue
Syndrome," more seriously than the media normally does. I have been
fighting this illness for two decades, however, and, regrettably, at
this stage of the game everything is NOT going to be all right for
those who have it.
I have been in cutting edge studies that show I have an abnormal
immune
defect in the body's biochemical antiviral pathway which makes it
extremely difficult to fend off viruses, and I also have a low
natural
killer cell count. I have chronically recurring Epstein-Barr, and a
vicious virus originally discovered in AIDS patients called HHV-6A
(Human Herpesvirus 6, Variant A), which gave me muscle pain,
encephalitis, and significant CNS disruption - in other words,
Myalgic
Encephalomyelitis, which was what the disease was called in Britain
before the U.S. NIH came up with the name "chronic fatigue syndrome"
(at the time believing it was chronic Epstein-Barr virus). A
scientific committee voted (not unamimously) for the new name, but it
was promoted by the head of infectious diseases at NIH at the time.
HHV-6, Variant B, causes roseola and is very common. It is not
possible
at the moment for commercial laboratories to distinguish between the
variants, so there can be a lot of confusion. However, an active
case
of HHV-6 in an adult usually means they have Variant A.
The disease caused terrible pain in addition to the muscle aches:
migraine-level headaches, and constant severe pain behind my eyes and
in the back of my neck. I had trouble understanding what was said to
me, and trouble saying what I meant - I would often use an entirely
wrong word, such as "map" for "tablecloth". I once poured an entire
cup of coffee into a silverware drawer convinced it was a cup. I had
ataxia, which made it difficult to walk and impossible to perform
normal functions like loading a dishwasher - I would slam one glass
unto another, unable to gauge the distance properly. Eventually I
became too weak to walk even a few feet. I only left the house if
someone in the family took me in a wheelchair, which they had to
push,
and I was mostly bedridden. Years later, when I was much better, I
still scored so low on an oxygen-reuptake treadmill test that I would
be considered permanently disabled on that basis alone.
I benefitted from an experimental drug that was both an antiviral and
an immune modulator, "Ampligen," which is unfortunately still in
Phase
III development. In six months, my biomarkers were gone. I could
read
again, walk again (though slowly), drive a car again. I cannot
explain
the sheer joy of being able to walk on a beach when you thought you
never would again. And I danced at my son's wedding that August.
The cost to my family for that one drug,which required twice weekly
infusions, was $20,000 in cash. I lost the drug in February. The
last
time I had to go off it,I did well for a year, and then relapsed
badly.
I am not looking forward to a repeat of that relapse, and hope that
perhaps a combination of an antiviral such as Valcyte (being used at
Stanford by Robert Montoya) and perhaps IM gamma globulin can help me
stave off a reappearance of HHV-6A and the 37kDa Rnase-L immune
defect.
I am fortunate in having been a college professor, married to a
college
professor, and therefore familiar with the means to find out what
testing, and what experimental drugs, might be available to me. It
took four years from my first collapse in my office before I finally
tested positive for something, however. And I was lucky that
Ampligen
worked for me, and that my family was willing (and able) to sacrifice
so we could pay for it.
Think about what was said in your own article: only 15% (10% by some
studies) of patients have any idea what is wrong with them. The vast
majority of those with a diagnosis are white and upper middle class.
That tells you something about who is not being diagnosd. I live
near
a major east coast city and there is no doctor in driving distance
who
understands my disease. Nobody in public clinics understands it.
I was sicker than most people who have it - I seemed to have a
progressive form, what some British patients call a "twenty-five
percenter" because they believe 25 percent have the disease that
badly. But imagine what my life would have been like without my
family, and without access to medical care. For me, it was not a
matter of finding work difficult - even working a cash register at
McDonald's would have been impossible. I know people with the
disease
who had to live on the streets for a time - I am certain there must
be
more. I used to have blackouts - what happens to a person who has
blackouts but nobody believes there is anything wrong wih them? What
happens to people as sick as I was, without medical care or a family
to
take care of them?
Three years ago, the 23-year-old son of a dear friend died in his
sleep. He had been diagnosed with chronic fatigue syndrome since
puberty. But the autopsy showed that he died of a longstanding viral
infestation - he died of myocarditis. There have been other deaths.
The CDC simply change the diagnosis when one is brought to their
attention.
Ultimately, Chronic Fatigue Syndrome is a misdiagnosis. I have an
abnormal immune system and am beset with disabling viruses, and I
have
the biomarkers to prove it. Other people diagnosed with CFS may have
different medical problems - but they are all serious. In bundling
them all together unto a vague concept of tiredness, the CDC has done
us all a great disservice - and in the process, endangered the health
of the nation. A million people have CFS according to the best
independent study - and many of us were contageous at some point in
the
disease. The name tells you nothing - chronic fatigue on this level
is
also part of congestive heart failure, tuberculosis, hepatitis - most
serious diseases. It did lead me to scientists working on biomarkers
and treatments, but for most of the public the name has prevented
appropriate diagnosis and treatment.
Thank you again for bringing this heartbreaking disease to the
public's
attention.
Mary Schweitzer
Subscribe to:
Posts (Atom)
