posted
Hi everyone, Please help us break the silence in our national press and TV on Christine Jennings, the British woman on hunger strike over Lyme.
Although the local press and BBC in Leicestershire have picked up Mrs Jennings' story, the national media here will not cover it, despite barrages of phone calls and faxes from activists.
Below is a list of emails for the main national papers here. Please contact them urgently to raise Mrs. Jennings' case. Here are some points you may want to mention:
Leicestershire woman Christine Jennings has been fighting for ten years for treatment for Lyme disease but has been refused.
Mrs Jennings is now wheelchair bound and going blind.
Mrs Jennings is on hunger strike because despite that fact that experienced Lyme-literate doctors from ILADS believe she has Lyme, the UK Department of Health has refused to accept it because they follow unproven theories and scientifically flawed policies laid down by the American Steere camp and its supporters in the EUCALB in Europe.
The US congress instructed the CDC, in 2001, to correct the misuse of its surveillance criteria, which state that positive blood tests are necessary to count a case as Lyme. These criteria are not intended to be used by doctors for diagnosis; they are surveillance criteria, as the CDC themselves quietly admit on their website. However, the CDC has not heeded congress, and has not informed our government that it must stop misusing their criteria, which are destroying the lives of people all over the UK (and the world!).
Mrs Jennings was threatened with removal of her 13 year old child by local social services after she announced her hunger strike, even though she has three grown-up children, and her 22 year old daughter is at home full-time. (Fortunately this threat has receded following the intervention of her local councillor David Thorpe.)
Mrs Jennings was threatened with forcible incarceration in a psychiatric hospital because of her protest. The mental health charity MIND advised that this was illegal and the threat has since been dropped.
Lyme bacteria have been found in ticks from all over the country here, and of all different types. 98% of bird ticks in a study done by Hubbard, Baker and Cann in 1998, were found to contain Bb sensu lato.
Lyme is not a notifiable disease in UK, except in Scotland. However even in Scotland many GPs are unaware of this. Very few British doctors are aware of Lyme.
Nearly all UK Lyme blood testing is done by just one lab based in Southampton. Two years ago, following concerns raised by Dr Ted McNeil, it was announced that an internal review would be conducted into the operation of the lab, as so many people who test negative there later discover they are positive in labs elsewhere. Despite repeated requests for the results of the "internal review", we are still waiting...
The director of the UK's Lyme lab, Dr O'Connell, is trumpeted as the country's expert, and advises all doctors that Lyme is extremely rare here, and that it is impossible to have chronic Lyme if you are seronegative. For recognition of chronic neuroborreliosis she insists positive blood and CSF results are required.
In November, Wendy Fox, a 37 year old woman who is paralyzed and critically ill because the health service, following Steere camp theories such as Klempner's, judged that she needed no further treatment for her advanced Lyme, organised a protest at the house of Tony Blair. She has now, finally, been offered her treatment, but there may be tens of thousands still languishing under misdiagnoses of ME/CFS, multiple sclerosis, motor neurone disease/ALS, etc.
posted
We need a couple of people like that in our country.Thousands of children and adults suffering in this country and we dont do much.I dont get it but thats the way I see it.Two hundred thousand get it every year,thousands misdiagnosed and mistreated and it seems like we just take it,dont get it.Wheres the unity and outrage and the protest.Ive been saying this since I became sick and I just dont understand.ANGRY.
Posts: 308 | From new bedford,Ma. | Registered: Dec 2004
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Just a suggestion for you. There is a website which is currently running some info on Lyme Disease. I would love to see a letter from you explaining what you are doing over there! Who knows? It may generate some press for you? Go to: www.redflagsweekly.com
Check out Letters....you can respond there! Also, scroll down to Health where you will find "More on Lyme"
I'll be looking for your letter!!!
nan
Posts: 2135 | From Tick Country | Registered: Oct 2000
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posted
Hi. I have been informed that Mrs Jennings has now ended her hunger strike as the Government has now promised she may be seen at the particular hospital she chose.
It remains to be seen if she will indeed get any treatment, as the problem in the UK is not so much the fault of this or that hospital, but more serious - the Dept of Health long ago adopted Steere camp nonsense as its official policy, and appointed Steere camp puppet Dr Susan O'Connell as chief Lyme spin doc. Any health professional in this country who wishes to know more about Lyme is automatically referred to her for advice.
Now you know how they come up with a figure of 300 Lyme cases per year.
Thanks for your suggestion, Nan. I'm not a member of this site,so can't post, but I had a look at the RedFlagsWeekly piece talked about on another thread of Lymenet today, which contains links to the CDC and Allen Steere (as well as to our side). It does seem that a letter is needed. If anyone is a member and can post, I'm happy to provide them with facts and figures to forward regarding the Steere camp corruption.
I'll happily forward Tincup's suggestion about designer toilet bowls, with the photos of the Steere camp individually engraved on the inside of each bowl, too!
Lisa
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quote:Originally posted by nan: Lisa,
Just a suggestion for you. There is a website which is currently running some info on Lyme Disease. I would love to see a letter from you explaining what you are doing over there! Who knows? It may generate some press for you? Go to: www.redflagsweekly.com
Check out Letters....you can respond there! Also, scroll down to Health where you will find "More on Lyme"
posted
I am now reliably informed that the hospital has cancelled Mrs Jennings' appointment as the doctor in question says he feels he does not have the appropriate expertise.
There are virtually no doctors in the UK with the appropriate expertise thanks to the Steere camp's stranglehold over our health policy. Those few LLMDs who exist here are forced to operate outside of the National Health Service (and therefore outside of the reach of most people, who cannot oafford private medical care), and are persecuted, as they are in the US and other places.
Lisa
quote:Originally posted by Lymerayja: Hi. I have been informed that Mrs Jennings has now ended her hunger strike as the Government has now promised she may be seen at the particular hospital she chose.
It remains to be seen if she will indeed get any treatment, as the problem in the UK is not so much the fault of this or that hospital, but more serious - the Dept of Health long ago adopted Steere camp nonsense as its official policy, and appointed Steere camp puppet Dr Susan O'Connell as chief Lyme spin doc. Any health professional in this country who wishes to know more about Lyme is automatically referred to her for advice.
quote:Originally posted by Lymerayja: I'll happily forward Tincup's suggestion about designer toilet bowls, with the photos of the Steere camp individually engraved on the inside of each bowl, too!
posted
I am sorry to hear of this woman's struggles. What does it take to read a little on lyme and provide treatment. I was given abx last year and treated myself, my doc was not interested in helping me figure things out.
I belieive this is a cop out on the side of the hospital to not treat. They treat all kinds of things they don't know much about, like new diseases, like Sars, and West nile virus. They look in a book and see what has been done before.
Hope someone steps up to the plate and helps her soon.
<� � � � � � � � � � � BY DAVID OWEN � � � � � � 10:30 - 26 February 2005 � A mother who was 12 days into a hunger strike over a row with health bosses has ended her protest.
� � � � � � Christine Jennings, 43, who took the action after she claimed doctors refused to recognise that she has Lyme disease has now been given an appointment with a specialist.
� � � � � � The news brings to an end a dramatic protest by the mother of four whose health was worsening by the day because her protest meant she could no longer take the medication.
� � � � � � She began the hunger strike because she claims doctors would not recognise her illness, which she says was caused by a tick bite in Bradgate park 10 years ago.
� � � � � � The problem has left her blind, needing a wheelchair and reliant on daily steroids and strong painkillers.
� � � � � � Supported by her eldest daughter Rebecca, Miss Jennings refused to give up her hunger strike until she had proof of an appointment with an eye-specialist at the James Cooke University Hospital, in Middlesbrough.
� � � � � � Her battle was won yesterday morning when a letter arrived at her home in Strathmore Road, Hinckley, telling her she will see the consultant on Thursday.
� � � � � � Since her story was publicised by the Leicester Mercury last week, she has been inundated with messages of support from around the world.
� � � � � � An American doctor specialising in Lyme disease has now volunteered to liaise with the James Cooke Hospital over her diagnosis and treatment. A European specialist has also offered to give her a second opinion.
� � � � � � Rebecca, who will drive her mother to Cleveland for the appointment, said: "My mum had some soup and a custard slice at lunchtime which she said has never tasted better."
� � � � � � Recovering at home, an emotional Christine said: "After 12 days without food it did taste quite good.
� � � � � � "I am happy but worried at the same time.
� � � � � � "I don't want it to be just another referral. I just hope I have the right tests so they can finally treat my condition.
� � � � � � "With the response we have received, more people are now aware of the disease. I just hope its not another dead-end.
� � � � � � "I wouldn't recommend the action I've taken to anybody, but I want people to know it is how desperate I felt. I am blind and immobile and it was the only thing I could do to get people to listen. I've just been messed around so much.
� � � � � � She said: "I would like to thank everybody who helped and supported me, especially all those people who share my condition." >>
cootiegirl
Frequent Contributor (1K+ posts)
Member # 3216
posted
There are physicians that will sponsor a child from another country to come to the US for a complex surgery or treatment. Do any of you think there might be a lyme doc here in the US that might treat this woman for free? There are airlines that provide free transportation. Some organization might be able to provide lodging...
It would certainly provide her the help that she needs and also embarrass the UK docs by having someone leaving the country for treatment. It might be worth looking into...... cootiegirl
Posts: 1728 | From New York State | Registered: Oct 2002
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
Perhaps this woman's doctors could contact the Columbia University Medical Center, in New York City.
dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
The problem (one of) with the NHS as a system, is that it is effectively a closed system.
They do not, as a general rule, accept diagnoses made outside their own system (by a doctor that is not a part of the NHS), and they do not accept treatment protocols that are not official NHS treatment guidelines (for ANY disease). So, with LD this is a biggie. I have argued with my GP over this on several occasions, questioning how he or the NHS as a whole will evolve if they don't let in outside diagnosis/treatment suggestions, etc.
There are exceptions in that some NHS GPs will accept an outside diagnosis, however, their hands are then "tied" because they cannot prescribe, for instasnce Dr B's protocol, because it is not under NHS guidelines. So, not too different in a way from US docs who may WANT to help but fear helping as they may lose their jobs as a result.
They cannot prescribe because the NHS as I understsand does monthly audits of what each GP prescribes and why. That is partly, I guess, because the NHS is funding the prescriptions (subsidizing), as no matter what prescription you get on the NHS it is around �6.50......Alas, NOT if you have Lyme Disease and want effective treatment - you're on your own then!
DLL
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
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