Countrygirl
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I want to share with you the dire circumstances of one of the ME/MCS sufferers in the UK. She has given her permission for me to share her situation on the forum and to reveal her identity.
Gillian has recently celebrated the fifteenth year of living in a tumbledown, mould-ridden, wet and often freezing subsiding shack, which is situated in the middle of an organic field in Somerset. Gillian is no willing drop out from society, but a highly intelligent and qualified biochemist, who was a world leader in her field....................until she developed ME.
Gillian became ill following exposure to toxic substances that she could not avoid because of her job. Like many of us she then developed M.E. and Multiple Chemical Sensitivity. She became the worst case in Europe and just the tiniest exposure to any synthetic chemical is a life-threatening experience. Fifteen years ago, Noel Edmonds rescued her from her previous site and dropped her by helicopter to the organic field where she has now lived with no mains electricity, water or gas ever since. She and her few supporters campaigned for many years for the provision of a chemically free 'safe house' , and, as a consequence, she is clearly regarded as a nuisance by the local authority who probably fear that she could set an expensive precedent. The campaign is long since over and there is no hope now that she will achieve her dream of being able to live in a house where she can continue to work as a biochemist and use her wealth of knowledge to help others with ME and MCS.
Despite the severity of her illness, no NHS doctor visits her and she is denied all appropriate medical care. She has no GP and no one from any of the organisations will get involved. She has been vilified by the Somerset County Council, who refuse to accept the medical reports written about her by doctors who have some understanding of her illness. A professor of medical science came from the north of England to see her and he has tried to intervene on her behalf, but the Council refuse to listen to him or to any of the other doctors who have an interest in the condition. She is one of the best researched cases in Europe and has a wealth of medical documentation proving the severity of her condition. At one time, the cost of her treatment of IV drips that enabled her to lead a limited life was ring fenced, but that promise has long since been broken by the health authorities.
Gillian has large weeping sores that have no dressing. Quite recently, a nurse from a local practice visited her unofficially. She was shocked by Gillian's state and said the least she could do was to go to the surgery, collect some dressings that Gillian has found she can use without severe reactions, and return to dress her large open sores. A little later Gillian had a phone call from the nurse to say that she was terribly ashamed to say it, but the doctors forbade her to return as Gillian is somehow blacklisted. It seems not to matter that such an attitude is completely against the law. Gillian is treated as a 'non-person' because she has ME/MCS. Quite simply, one can only conclude from their lack of care that they are waiting for her to die and they are making her continued existence impossible.
In the summer of 2009, the Council informed Gillian that they were going to bulldoze her shack down. They offered her a smelly old caravan in the middle of nowhere as alternative accommodation. It was full of plastic fumes to which Gillian reacts badly and a doctor informed them that it was totally unsuitable. The Council ignored the doctor's letter.
On the day of the eviction, a few others who have ME went to Gillian's shack and stood guard. Some bully boys turned up and probably weren't overly daunted by a small group of ailing ME patients. They were rather more intimidated to suddenly find the lens of a Westcountry TV camera shoved in their ear, as they were planning to tackle Gillian. Someone in our little group had tipped them off. They withdrew, but are planning to return in a few weeks time.
I have been informed that they are planning to apply for a court order to drag this very sick woman out by force and dump her on the verge as they say they have fulfilled their obligation to her by offering the totally unsuitable smelly old caravan. I believe the order has been granted. The date is set for May.
I have just spoken to Gillian. She is freezing cold, with a frost bitten toe, which she believes to be verging on gangrene. She has no electricity or any form of heating. She has always relied on some specially manufactured candles for warmth. She would warm up stones on the candles and then cuddle them for heat and also cook on them. Now she has no money left for candles and is freezing.
At the time of writing, the hut is full of water because trenches outside the hut have collapsed. There is 4 inches of water throughout the shack and has been for weeks. Her clothes are wet, cold and filthy. She has no means of washing them. Her elderly mother always did this for her, but now she is in her 80s and can't help her any more. Her make-shift bath is full of sewerage, as the toilet, such as it is, won't function properly and just overflows into the bath.
Gillian says she hasn't eaten since last year, but has lived on cocoa powder and vitamin tablets. She is in severe, chronic pain, has little sight, rotten teeth and has run out of her oxygen supplies, which the NHS won't replace. When she has tried to get help, she is told by the authorities that the only doctor whose report they will consider will be that of a psychiatrist, who does not accept ME or MCS. Of course, they are probably hoping, it seems, to section her. However, moving her, Gillian believes, would result in her death. The professor of medical biochemistry has put in writing that the Somerset authorities are about to become guilty of corporate manslaughter. This doesn't worry them it seems.
Gillian is desperate. She cannot face going through another winter in freezing wet conditions and with no sign of help. She can no longer make any outgoing phone calls (her only modern day necessity) because she has no money to pay for them.
I arranged to have Gillians blood flown out to the US for testing for XMRV in the hope that a positive result might help her cease to be a non-person in the UK medical wilderness. Bearing in mind, however, that Professor Wessely stated in the e-BMJ that even if the patient is positive for the retrovirus , We will not treat them, I guess it is a vain hope.
Her situation is so severe though that she feels that she cannot continue to live until the result is ready and is planning to take her life soon. She has asked me to make her result known should she be positive. Gillian also wants you on the forum to know her story.
Gillian is incredibly knowledgeable about the biochemistry of our illness, and I think she would be a valuable asset to the WPI. Sadly, though, I think her living conditions are so dire that I don't see how at the age of 56 and being so severely ill that she can continue to exist in such appalling conditions.
I feel at a loss know to help her further. She needs a team of helpers to keep her alive and to make her life bearable, otherwise I don't think she will be with us much longer. Her death would be a terrible loss to the ME world as she has invaluable knowledge about our illness and is herself she best researched case in Europe.
The situation is about to take a turn for the worst as the council are planning to re-tarmac the tiny road that skirts the field close to Gillians hut. They are well aware of the serious and potentially fatal consequences this will have on her. Given all the circumstances, it is hard not to conclude that they may feel that the potential outcome might suit their purposes and solve the problem for them.
Over the last few months of the severe winter, a few UK ME patients have been sending her water, hot packs and other essential items through the post to keep her alive, but this is not sustainable in the long term.
If Somerset Council do not change their plans and Gillian loses her life as a consequence of their actions, as they have been informed by the professor, they will be responsible of corporate manslaughter. They need to know that the global patient community is watching. At least now they will no longer be able to bury her while the world..including her community looks the other way.
Gillian desperately needs advocates and money to keep her alive.
Will the indifference of the UK to this devastating illness claim yet one more life?
Will anyone care?
If anyone would like to know about Gillian McCarthy, you will find a lot of information about her on the Internet.
She is medical advisor to ChemicalFree.
Countrygirl
Gillian has recently celebrated the fifteenth year of living in a tumbledown, mould-ridden, wet and often freezing subsiding shack, which is situated in the middle of an organic field in Somerset. Gillian is no willing drop out from society, but a highly intelligent and qualified biochemist, who was a world leader in her field....................until she developed ME.
Gillian became ill following exposure to toxic substances that she could not avoid because of her job. Like many of us she then developed M.E. and Multiple Chemical Sensitivity. She became the worst case in Europe and just the tiniest exposure to any synthetic chemical is a life-threatening experience. Fifteen years ago, Noel Edmonds rescued her from her previous site and dropped her by helicopter to the organic field where she has now lived with no mains electricity, water or gas ever since. She and her few supporters campaigned for many years for the provision of a chemically free 'safe house' , and, as a consequence, she is clearly regarded as a nuisance by the local authority who probably fear that she could set an expensive precedent. The campaign is long since over and there is no hope now that she will achieve her dream of being able to live in a house where she can continue to work as a biochemist and use her wealth of knowledge to help others with ME and MCS.
Despite the severity of her illness, no NHS doctor visits her and she is denied all appropriate medical care. She has no GP and no one from any of the organisations will get involved. She has been vilified by the Somerset County Council, who refuse to accept the medical reports written about her by doctors who have some understanding of her illness. A professor of medical science came from the north of England to see her and he has tried to intervene on her behalf, but the Council refuse to listen to him or to any of the other doctors who have an interest in the condition. She is one of the best researched cases in Europe and has a wealth of medical documentation proving the severity of her condition. At one time, the cost of her treatment of IV drips that enabled her to lead a limited life was ring fenced, but that promise has long since been broken by the health authorities.
Gillian has large weeping sores that have no dressing. Quite recently, a nurse from a local practice visited her unofficially. She was shocked by Gillian's state and said the least she could do was to go to the surgery, collect some dressings that Gillian has found she can use without severe reactions, and return to dress her large open sores. A little later Gillian had a phone call from the nurse to say that she was terribly ashamed to say it, but the doctors forbade her to return as Gillian is somehow blacklisted. It seems not to matter that such an attitude is completely against the law. Gillian is treated as a 'non-person' because she has ME/MCS. Quite simply, one can only conclude from their lack of care that they are waiting for her to die and they are making her continued existence impossible.
In the summer of 2009, the Council informed Gillian that they were going to bulldoze her shack down. They offered her a smelly old caravan in the middle of nowhere as alternative accommodation. It was full of plastic fumes to which Gillian reacts badly and a doctor informed them that it was totally unsuitable. The Council ignored the doctor's letter.
On the day of the eviction, a few others who have ME went to Gillian's shack and stood guard. Some bully boys turned up and probably weren't overly daunted by a small group of ailing ME patients. They were rather more intimidated to suddenly find the lens of a Westcountry TV camera shoved in their ear, as they were planning to tackle Gillian. Someone in our little group had tipped them off. They withdrew, but are planning to return in a few weeks time.
I have been informed that they are planning to apply for a court order to drag this very sick woman out by force and dump her on the verge as they say they have fulfilled their obligation to her by offering the totally unsuitable smelly old caravan. I believe the order has been granted. The date is set for May.
I have just spoken to Gillian. She is freezing cold, with a frost bitten toe, which she believes to be verging on gangrene. She has no electricity or any form of heating. She has always relied on some specially manufactured candles for warmth. She would warm up stones on the candles and then cuddle them for heat and also cook on them. Now she has no money left for candles and is freezing.
At the time of writing, the hut is full of water because trenches outside the hut have collapsed. There is 4 inches of water throughout the shack and has been for weeks. Her clothes are wet, cold and filthy. She has no means of washing them. Her elderly mother always did this for her, but now she is in her 80s and can't help her any more. Her make-shift bath is full of sewerage, as the toilet, such as it is, won't function properly and just overflows into the bath.
Gillian says she hasn't eaten since last year, but has lived on cocoa powder and vitamin tablets. She is in severe, chronic pain, has little sight, rotten teeth and has run out of her oxygen supplies, which the NHS won't replace. When she has tried to get help, she is told by the authorities that the only doctor whose report they will consider will be that of a psychiatrist, who does not accept ME or MCS. Of course, they are probably hoping, it seems, to section her. However, moving her, Gillian believes, would result in her death. The professor of medical biochemistry has put in writing that the Somerset authorities are about to become guilty of corporate manslaughter. This doesn't worry them it seems.
Gillian is desperate. She cannot face going through another winter in freezing wet conditions and with no sign of help. She can no longer make any outgoing phone calls (her only modern day necessity) because she has no money to pay for them.
I arranged to have Gillians blood flown out to the US for testing for XMRV in the hope that a positive result might help her cease to be a non-person in the UK medical wilderness. Bearing in mind, however, that Professor Wessely stated in the e-BMJ that even if the patient is positive for the retrovirus , We will not treat them, I guess it is a vain hope.
Her situation is so severe though that she feels that she cannot continue to live until the result is ready and is planning to take her life soon. She has asked me to make her result known should she be positive. Gillian also wants you on the forum to know her story.
Gillian is incredibly knowledgeable about the biochemistry of our illness, and I think she would be a valuable asset to the WPI. Sadly, though, I think her living conditions are so dire that I don't see how at the age of 56 and being so severely ill that she can continue to exist in such appalling conditions.
I feel at a loss know to help her further. She needs a team of helpers to keep her alive and to make her life bearable, otherwise I don't think she will be with us much longer. Her death would be a terrible loss to the ME world as she has invaluable knowledge about our illness and is herself she best researched case in Europe.
The situation is about to take a turn for the worst as the council are planning to re-tarmac the tiny road that skirts the field close to Gillians hut. They are well aware of the serious and potentially fatal consequences this will have on her. Given all the circumstances, it is hard not to conclude that they may feel that the potential outcome might suit their purposes and solve the problem for them.
Over the last few months of the severe winter, a few UK ME patients have been sending her water, hot packs and other essential items through the post to keep her alive, but this is not sustainable in the long term.
If Somerset Council do not change their plans and Gillian loses her life as a consequence of their actions, as they have been informed by the professor, they will be responsible of corporate manslaughter. They need to know that the global patient community is watching. At least now they will no longer be able to bury her while the world..including her community looks the other way.
Gillian desperately needs advocates and money to keep her alive.
Will the indifference of the UK to this devastating illness claim yet one more life?
Will anyone care?
If anyone would like to know about Gillian McCarthy, you will find a lot of information about her on the Internet.
She is medical advisor to ChemicalFree.
Countrygirl
, but it would be a wonderful advert for Dell if they were prepared to donate one to Gillian. It certainly wouldn't do their reputation any harm, given her extreme circumstance,unless they don't want to draw attention to the fact that their machines are capable of being a health hazard to vulnerable people, of course.