Statement regarding my Detention



Originally published by Elena Cook on 7 July 2006

(Nb- Elena Cook is a pen name. While many in the patients' movement know my real name, I am asking that people do not use it in material circulated about me on the internet as it will only expose my children to further harassment and danger. Thank you.)

I am writing this statement to inform my friends in the international Lyme Disease patients' movement and in the UK-based campaign "Illness Denied" about the events around my recent detention. However, some of what I am about to write has implications far beyond these movements, as it concerns an attack on civil rights in general.

Background to the Events

In January of this year I, together with some colleagues, organised a protest outside a public lecture on Gulf War Syndrome by Professor Simon Wessely. Wessely is notorious in Britain and abroad for his insistence that Gulf War syndrome, ME/chronic fatigue syndrome, and many other illnesses are not real llnesses at all, but simply "illness beliefs". We believe that by ignoring mountains of evidence about the physical causes of these syndromes, he and his colleagues are personally responsible for suffering on a massive scale.

On the day of the protest, and again some weeks later when we set up a campaign called "Illness Denied" (www.illnessdenied.org.uk), I noticed many unusual problems with my land and mobile phones. A Gulf War veteran who has campaigned for many years on GWS told me quite matter-of-factly that "it's probably tapped".

Wessely regularly acts as adviser to the Ministry of Defence, to the American Dept of Defence (DoD), and to NATO on health matters. He is currently head of the King's Centre for Military Health Research at London's King's College Hospital.

Many of my colleagues in the Lyme movement know that I have been researching the conflicts of interest of the "Steere camp"* of Lyme doctors, especially as regards their connections with the US biowarfare establishment, for some time. I have been very open about this work and written about my findings, and those of others, in the public domain (see list of links below). As a result of this work I have become the target of literally thousands of libellous and hate-filled messages placed anonymously on the internet by a tiny handful of individuals associated with the Steere camp.

Incredible as it sounds, some leading Steere camp doctors (for example Dr Edward McSweegan, former Lyme Program Officer at the National Institutes of Health in Maryland, and Dr John Nowakowski of NY Medical College), have a habit of using the internet to distribute libellous messages targetting doctors of the opposing camp or patient activists, as well as giving out dangerous misinformation regarding this disease. Both men have a history of using false names to hide their true identities while placing messages on internet Lyme forums.

In my case there have also been anonymous death threats sent to me both publicly and privately, suggesting that "cars come up on the sidewalk", and similar themes.

Some months after the Wessely demo I was involved in discussions with others in the Lyme movement about the use of darkfield microscopy for rapid detection of the Lyme disease bacteria in a simple blood smear. This technique has been used with apparent success by a number of European doctors, but is vehemently ridiculed by the Steere camp.

The European doctors have recorded seeing the Lyme-causing bacteria through their darkfield microscopes, both in its familiar spiral-shaped form, and also in its cell wall-deficient or "L-forms". The latter are specially resistant against the body's immune system and against antibiotics.

Around this time my friend Mark Stroud, a British Lyme patient and engineer, set up the website http://www.lyme-diagnosis.org.uk/ in which he put detailed instructions for converting an ordinary microscope for optimal darkfield viewing of the bacteria. He believes that anyone with access to a reasonable quality microscope could copy what he has done, without any special technical knowledge. He hoped to encourage doctors to try this technique, as a simple, inexpensive way to increase detection of the borrelia microbes that cause Lyme. Because it is known that Lyme disease is one of the causes of ME ("chronic fatigue syndrome"), and also mimics many other conditions, such as MS, motor neurone disease/ALS etc, Mark believes that this technique could potentially help large numbers of people identify the true cause of their illness and get proper treatment.

Around this time both I and several colleagues began to experience severe problems with our communications. These included problems with land and mobile phones, and computer hacking. I had my firewall logs examined by two separate IT experts who both found evidence that the attempts were conducted by machines registered to the US Navy, Marine Corps, and Defense Intelligence Agency. My colleagues found the same sources in their firewalls too. One friend found that her dial-up account was being targeted by a US military computer every half hour on the half hour. When she tried to time her internet sessions to avoid these times, she then found that the timing , though still half-hourly, was altered to fit in with the times she was logging in.

One of the most sinister things that happened during this period was that the name of the engineer who had designed the microscope site was sent to my two mobile phones using a mechanism that only I should have been able to use. No one else has access to my phones.

Finally in late April the harassment culminated with a threat placed on an internet Lyme group directed at my children. The same day I reported it to the police, a close friend in England had to leap out of the way to avoid an oncoming car, speeding the wrong way down a pedestrianised lane in her local shopping precinct.

Arrest

On 8 May 2006, three police officers, two doctors, two social workers and a community psychiatric nurse arrived without warning at my door. They had a warrant for my arrest. One of them, Dr Peter Ellis, did most of the talking. As I found out later, he is a GP who has undergone a course in psychiatry which qualifies him to remove people's liberty. Dr Ellis questioned me briefly about the hacking, and the threat to my children.

Though he questioned me about the events, Dr Ellis made it very clear that he was not interested in the events themselves. He barely glanced at a print-out I showed him of the threat to my children, and would not look at the firewall logs. Then he announced that I was to be detained under Section Two of the Mental Health Act of 1983.

I asked the group why I was being detained, and whether they had any evidence that I was a danger to others or to myself, which I believe is the normal basis for locking someone up in a mental hospital. At that point a social worker suggested that I was very thin and that I might be trying to harm myself by not eating.

I would like to emphasise that I am absolutely not suicidal, have never deliberately stopped eating in my life, nor have I ever suffered from anorexia. My medical notes confirm that when I was weighed later that day, though not fat, my weight was well within the normal range for my height. As I remarked later to a friend, there are many women out there much slimmer than me, and they are on the cover of magazines, not detained in acute psychiatric wards.

I was given no time to pack or to get in touch with a lawyer, but forced out in the pouring rain into an ambulance which took me to a locked unit at Central Middlesex Hospital. I spent 30 days in there under appalling conditions My fellow inmates included some very violent and disturbed individuals, who had been transferred from medium security units, committed GBH etc.

Detention

Park Royal Centre for Mental Health

I have to say that the treatment that I saw meted out to mentally ill patients in Pond Ward, Central Middlesex Hospital, was a disgrace. I have written in detail about it here at http://www.elenacook.org/pondward.html. I am now working with a patients' group to help highlight some of the issues involved. If as a result of my efforts some improvement occurs in the lot of the patients, then at least some good will have come out of my detention. It needs to be remembered that those incarcerated there- even those who have committed acts of violence - are ill people who need help and empathy - not criminals who deserve punishment. Sadly too many of the staff that I met while in there did not seem to grasp this simple concept.

Dr Maya Ranger, a consultant psychiatrist who, it seems, had recently arrived at the hospital to take up a locum post, was placed in charge of my care. She immediately diagnosed me with "Delusional disorder". I asked her in a ward round what was the basis of her diagnosis. She explained that it was three things:

  1. That I disagree with the views of Dr Susan O'Connell. O'Connell is the UK "expert" on Lyme Disease, who believes that Lyme is hard to catch, is easily ruled out by blood tests, and almost always curable with a simple 3-week antibiotic course.
  2. That I believe that Lyme disease is connected with biowarfare issues.
  3. That I believe that my computer was hacked by the US military.

I informed Dr Ranger that there are tens of thousands of people, including the dozens of doctors and other healthcare professionals belonging to the International Lyme and Associated Diseases Society, who also disagree with the views of Dr O'Connell. Dr Ranger did not want to know.

I informed her that Public Law 107-116 in the US acknowledged that the blood tests are not sensitive enough to rule out Lyme disease, although it is not being properly enforced. Dr Ranger did not want to know.

She said, "Blood tests are used to rule out many conditions, why should they be no good in Lyme?" I informed her that Lyme was a very complex disease and in fact there are a few dozen reasons why the blood tests cannot be relied upon. She did not want to know.

I offered Dr Ranger a whole number of documents providing evidence that Lyme is indeed a biowarfare-related issue. For example, I told her about Michael Carroll's book "Lab 257", recently published in the US, which has the endorsement of two former Governors. I also mentioned that it was discussed in the Lancet recently, that a leak from the Atlanta-based Center for Disease Control (CDC) to the Associated Press last year confirmed it, and that British scientists had acknowledged that our top biowarfare facility at Porton Down is studying Lyme disease, at an international conference devoted to the prevention of bioterrorism. I told her I could provide her with many more pieces of evidence. Dr Ranger did not want to know.

I offered Dr Ranger a copy of my firewall logs and those of my colleagues, which she could take to the IT expert of her choice, to verify that the IP addresses listed for suspected hack attacks did indeed belong to US military machines. She refused to take any documents from me. Neither would she take any notice of the dozens of pages of evidence on these and other subjects being sent in to her on my behalf by my friends and colleagues, including doctors, patient advocacy workers and journalists. She acknowledged nothing, and was permanently unavailable - even to a member of the House of Lords who had kindly contacted her on my behalf.

But Dr Ranger did not want to know, remaining firm and unshakeable in her conviction that, like God, she knew everything already - even about subjects of which she had no experience.

In psychiatry a delusion is defined as "a false belief, rigidly held, in the face of incontrovertible evidence that the belief is wrong". I asked Dr Ranger to provide me, in writing, with the "incontrovertible evidence" I was supposedly ignoring. She said she could not do that as she had no time.

Dr Ranger also told me that she did not believe a threat had been put on the internet against my children, even though the threat is in the public domain. A printout of it was sent to her by my friends, and I myself had showed it to Dr Ellis when he arrived at my home with the police. She ignored detailed material sent to her about Dr McSweegan, whom I have reason to believe is one of the Steere camp people who has harassed and threatened me, whilst hiding behind false internet names, since 2003.

McSweegan is a biowarfare specialist who worked at the Naval Medical Research Institute before he became the Lyme officer at the NIH, America's top federal health agency. Though moved from that post in the 1990's for his overt harassment of the director of the Lyme Disease Foundation - a woman who had lost her five year old child to Lyme disease - he nevertheless retains a senior position at NIH. He has a biography on the internet, and articles about him by CBS and other major news outlets are readily available by Google search. However Dr Ranger said she saw no reason to accept that Dr. McSweegan exists (!)

During my stay Dr Ranger was obsessed with the idea of forcing me to take Risperidone, a powerful psychotropic drug. I was frightened to take this drug, which has substantial side effects, and is intended to correct a chemical imbalance in the brain of psychotic patients.

Further, even the less serious side effects of the drug, which include drowsiness, blurred vision, inability to concentrate, etc.. would have seriously hampered me in preparing for the tribunal to which I had appealed against my detention. Many of the other inmates of the unit were on similar drugs. Some had speech so slurred by the drugs it was impossible to understand them, and others were so sedated they looked and moved like zombies.

Dr Ranger ignored the recommendation of the tribunal panel that I not be forced to have medication in advance of their sitting, and continued to do everything she could to force me to take Risperidone. Even after an independent consultant psychiatrist was called in by my lawyers, who assessed me and found nothing wrong with my mental health, she would not give up. She called me in her office and told me I had a "choice". I could take Risperidone orally, or I would be physically pinned down by several members of staff and forcibly injected in my backside. This is regularly done in that unit to control patients who are violent. She arranged, with the help of Dr Ellis, to transfer my status to "Section 3", which gave her the legal power to forcibly drug me, as well as to detain me a further 6 months without review, on the basis that I continued to hold on to my beliefs about Lyme disease and the hacking.

However, Dr Ranger was only able to force me to have one dose of Risperidone before she was made to back down by the threat of an injunction from my solicitors. On 7 June the tribunal was held. I was fortunate in that, while Dr Ranger did not bother to read the documents I and my friends and collegaues had sent her, the panel, which consisted of a consultant psychiatrist, a solicitor and a lay person, did. The testimony of the independent psychiatrist carried great weight. He wrote that:

"The admission notes and Part 1 summary state that on admission, the only abnormality found was the presence of 'delusions'. Specifically, {Ms. Cook's] mood, speech, form of thought, perception and cognition were all within the normal range, and there was no evidence of self neglect..

"...it is my opinion that [Ms. Cook's] beliefs about Lyme disease are not morbid in their origin, are not held in the face of evidence and reason to the contrary - there is at least as much in favour of her beliefs - and are not out of context with her culture, and therefore cannot be classed as delusional."

Regarding the issue of hacking, he wrote:

"In this case, the truth of her belief seems to be reasonably established. In coming to her belief, she investigated an all too common problem and the results of her investigations revealed involvement by a Department of Defense computer...She is anything but alone in worrying about computer hacking by government organisations and, of course, it has been admitted by the US government that since 9-11 this kind of activity has been authorised as part of the Homeland Defense strategy."

He concluded: "It is my opinion that there is no evidence to substantiate a diagnosis of mental disorder."

During the tribunal, Dr Ranger showed extreme arrogance and even tried to pretend that she had not forced me to have Risperidone against my will. However, the panel members were well aware of the facts. She also made outrageously false statements about me. I don't know whether she got these from third parties or invented them herself.

Dr Ranger also claimed she had spoken to those who were sending in material on my behalf. My understanding is that no one got past her secretary - not even the Member of the House of Lords. If anyone did actually manage to speak to her, I am interested to know.

I am certain that if Dr Ranger had got her way, she would have fed me steadyingly increasing doses of Risperidone in her attempt to "cure" me of my beliefs about Lyme disease until she had turned me into a cabbage.

While I was in hospital, I got the news that my mother had suddenly become ill and been rushed to casualty. She died a few days later of renal failure. I had to beg for the right to visit her in her last few days, and even then was only allowed to go accompanied by an escort in case I escaped. The fact that my mother had to die in this undignified way, is one more shameful consequence of the harassment against me, which should weigh on the conscience of those responsible. But I don't think they have one.

Every patient on the unit is allocated a "named nurse", supposedly so they can be secure in the knowledge they are getting continuity of care. My "named nurse" shouted at me when I asked on her shift if I could visit my dying mother, saying "You can't expect us to facilitate this every day!" After I told her I would make an official complaint against her, she seemed remorseful and one day she actually sought me out to ask if I would like to go and see my mother. However, by then it was too late as she was already dead.

My named nurse was required to write a report for the tribunal. She wrote that she recommended that no one pay attention to any material being sent in by my friends and supporters substantiating my beliefs.

I am limited in what I can say about my children due to the gagging rules of the Family Court in Britain. Suffice it to say that my detention has had a deeply traumatising effect on my children. I am sure that Dr Ranger, Dr Ellis and other parties involved in my detention neither see, nor care about that.

At the time of writing, Dr Ranger continues to harass me by writing letters to various authorities insisting that the tribunal was wrong and that she is right. She is aware that I will pursue my complaints aginst her and the hospital Trust for the treatment I endured when I was under their "care". I find it incredible that she was part of a team which published on "nidotherapy". This is a newly-invented therapy which aims to help the recovery of mental patients by optimising their environment. Given that Pond Ward was a filthy, dangerous place with no hot water half the time I was there, and serious maltreatment of patients occurring on a regular basis, perhaps Dr Ranger needs to evaluate the kind of "nidotherapy" she is presiding over right now.

Conclusion

It is sobering to think that in a "democracy", the simple fact of doing peaceful research on medical issues can lead to you and your family being threatened, your computer hacked, your colleagues harassed (including an incident that may have been attempted murder), and then when you complain about it, you can be labelled delusional and committed to a mental asylum.

I feel that my experience raises very serious issues about the powers that psychiatrists, social workers, and other authorities have in our society to repress others on the basis of their political beliefs. I accept that there are mentally ill people who really do suffer from paranoia, which makes them imagine that the US army, CIA etc is after them, and that psychiatrists see such cases all the time. However, in all fairness, it has to be said that such patients do not usually come in armed with computer firewall logs, do not have testimony from IT experts substantiating their allegations, nor are their psychiatrists swamped with material sent in from round the world to corroborate their "delusions". They do not have members of the House of Lords advocating on their behalf, and they do not get streams of letters and cards wishing them good luck in their struggle.

So, I do not have an explanation for the behaviour of Dr Peter Ellis and Dr Maya Ranger, except to say how incompetent and unprofessional they both are.

The news from the US is that George Bush has arrogated to himself the right to tap or hack virtually the entire country. He claims that new post-9-11 legislation makes this legal. The American civil liberties movement say it is not.

I don't know what will be the outcome of this debate. But I do know that whatever it will be, the US government and military did not, and do not, have any legal mandate to hack the computers of peaceful British citizens living in the UK.

To those responsible for the serious threats and harassment that I and my colleagues have endured - I would like to ask them just what they think they have achieved? I realise that to see me declared insane and locked up for reporting their harassment must have seemed like the pinnacle of their achievement, for those who harassed me and threatened my children. But I want them to know this - there is now more interest than ever before in the topics they were hoping to suppress.

I repeat: more interest than ever before.

I feel overwhelmed by the amount of support I received from the patients' movement when I was in detention. People, some very ill themselves, put aside their own pain and commitments and worked for hours on end to get me out of Central Middlesex. Busy doctors, scientists and journalists took time out to help me. People for whom, because of neurological deficits, writing is itself a difficult task, took time to write me long letters.

Some took it upon themselves to phone me everyday to offer me moral and also practical support. One friend repeatedly took time off work to come and see me even though he lives the other side of London. I was also fortunate to have a very sharp, hard-hitting team of solicitors who did not let Dr Ranger get away with any of her nonsense. I cannot thank everyone enough for what they have done.

There will always be cowards who try to hide their heads in the sand at the first whiff of danger. In my view, the worst type of coward is the one who, in his rush to protect himself from the fire, throws you into it, in order to give him a few more seconds to run away. I am aware that there were individuals in the British Lyme movement who tried to distance themselves from me and my colleagues once they realised we were being targeted by the US military, and made defamatory remarks implying that we had sought trouble and got it. I recommend we ignore the cowards. If keeping our mouths shut and our heads down is such a great strategy, why has it not worked up till now?

It is now clear that there are enough people out there who do have the courage to think about and face issues even when they are controversial or call into question ideas we take for granted - that we live in a democracy, that public health authorities always act in our best interests, that governments and the military are there to protect us, that soldiers would not be abandoned by the country for which they fought if they became ill as a result of their military service; that psychiatrists in the west never diagnose and treat people on the basis of their political beliefs; that the science of medicine is never subordinated to politics or the profit needs of corporate giants. I believe that the recent events will only serve to focus people's minds more than ever on these issues.

People have posed me the question that, as my children have been threatened as a result of my work, and a colleague experienced what may have been an attempt on her life, why do I not now stop it? This is a very hard question for me.

Today is the anniversary of the London bombings of July 2005. We are hearing repeatedly on the radio and TV the message that we must not give in to fear, and not let terrorists win.

Well, all I can say is this. I do not want to let terrorists win either.

Elena Cook

Footnote

* (The Steere camp of Lyme doctors are those who, like Prof. Allen Steere, maintain that Lyme is a hard-to-catch, easily cured disease, which almost never becomes chronic or neurologically disabling.They are opposed by doctors of the International Lyme & Associated Diseases Society (ILADS), which believes the opposite. The Steere camp has always received the lion's share of government funds and support in the US and much of western Europe. What is interesting is just how many of their leading doctors and scientists just happen to be biowarfare experts, or members of the Epidemic Intelligence Service (EIS), an elite infectious diseases squad founded in the fifties for the purpose of waging offensive biowarfare.

Of course not all the Steere camp doctors are biowarfaremen. Some seem to be far more interested in serving the interests of the powerful US insurance industry, which tries to limit the number of people diagnosed and treated for Lyme disease, as the treatment can be expensive, especially if the condition was not treated early on. Others are tied up with vaccine and test-kit makers who have their own motives for limiting the numbers diagnosed. and of course, some like Steere himself, have connections with all of these interests.

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