Benzo survivor: Gurli Bagnall

Gurli Bagnall's Story
The Birth of The Bounty Hunters

My Experience

In her book "Benzo Junkie", Beatrice Faust tells how one of the fears she used to experience, was sustaining some sort of injury that would leave her brain damaged. In the benzodiazepine experience, she said, the thing she feared most, had happened. It happened to me as well.

I had been married for twenty-one years when, in 1975, my husband and I called it quits. It was a traumatic time and I was not sleeping. My friendly doctor prescribed Ativan, a drug that I had never heard of. Thankfully it worked – but only for a few weeks. "Never mind," he said. "We'll simply double the dose." And from there on, it was all downhill.

I lost a home, a teaching career, financial security, friends and much more. I could only read hesitantly and by the time I got to the second line, I had forgotten what the first was about. I carried a dictionary in my handbag everywhere I went, because I could no longer spell, and when I tried to express myself verbally, the brain would not release the words. I am writing things today, that I could not have read, let alone understood, while I took benzos.

Teaching was out of the question and trying to earn a living by other means – any means – was part of the nightmare and I welcomed the times when I felt so sick, I had to stay home.

In 1983, presenting the typical picture of a benzo addict, I sought the help of another doctor. "I'll give you something that's much better for insomnia," she said as she scribbled out a prescription. "Take these with the Ativan." I had never heard of Halcion either. The nightmare continued with a vengeance.

Apart from work where I was considered to be slow, quiet and withdrawn, I lived in total isolation. My home was my refuge. There I closed the door against the world that judged by what it saw, and dealt with my misery as best I could.

In 1985, with no answers in sight, I tried to commit suicide by taking an overdose. In 1986, I feared that I would lose my job and therefore the small flat I now called home, so the doctor prescribed an anti-depressant – Doxepin. It did nothing except make me put on weight fast and my face became so bloated that I couldn't recognise it in the mirror. "Tut tut!" said my doctor. "You really must exercise self control!"

By May 1989, although still very confused, I felt I had to come off the drugs. I raised the subject fearfully with my doctor who, to my surprise, agreed it would be a good thing to do. But I was shocked when she referred me to the drug and alcoholic clinic of the local hospital. "Why is she sending me there?" I agonised. "I'm not a drug addict. All I've ever taken are the pills she prescribed." Exactly!

I only attended a couple of sessions because even in my befuddled state, I realised the counsellors hadn't a clue what they were dealing with. A social worker took me to a TRANX meeting and I met Vicky, a recovered victim, who made herself available for telephone counselling. She has my life long gratitude.

I dropped the Doxepin straight away; the Ativan took four weeks, but that once-a-day low dose Halcion tablet took me another five months during which it was substituted with Valium for "easier" withdrawal.

In the three years the doctor prescribed Doxepin, my weight had increased by 50%. I now know that excess weight gain and facial oedema are the adverse effects of that drug.

Symptoms of toxicity, withdrawal and post-withdrawal are listed in some medical journals but they are only words. Nowhere are they translated into terms that reflect the human suffering.

In those early days, I learnt that whatever frightening crisis arose (and they came thick and fast), my chances of surviving each event were greater if I rode it out at home alone, for during the first year of being drug free, I nearly died three times due to medical intervention.

During this period I drew a lot of cartoons. They took the dignity from those who claimed respect, but who deserved only contempt. It gave me something to laugh at and helped to defuse the anger.

In 1991, a specialist diagnosed the ongoing post-withdrawal syndrome as the Chronic Fatigue Syndrome. I'd never heard of that before either, but he acknowledged it had been triggered by the benzos. It didn't take long to discover that this diagnosis was like jumping from one very hot frying pan straight into another.

This poorly understood disease has had many names – such as Yuppie Flu which is as trivialising as the CFS. Currently, there is a move afoot to use Myalgic Encephalomyelitis as the official title but that is hotly contested by certain people – particularly within the psychiatric community. They want to claim CFS and all those who suffer it, as their exclusive property.

The WHO categorises it as a disease of the nervous system which, in the benzo context, is no surprise. Nevertheless, just as the medical establishment denied iatrogenesis, so most still deny the disease simply because they do not understand it."

Read more of Gurli's story here
Ordering details for THE BOUNTY HUNTERS are here

CFS/ME - "Magical Medicine: How to Make a Disease Disappear"

PRESS RELEASE


Magical Medicine: How to make a disease disappear
-------------------------------------------------
12th February 2010

A formal complaint has been lodged by Professor Malcolm Hooper with
the Rt. Hon The Lord Drayson, Minister of State with responsibility
for the Medical Research Council (Science and Innovation) about the
'PACE' Clinical Trial of behavioural modification interventions for
people with Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome
(CFS).

PACE is the acronym for Pacing, Activity, and Cognitive behavioural
therapy, a randomised Evaluation, interventions that, according to
one of the Principal Investigators, are without theoretical foundation.

The MRC's PACE Trial seemingly inhabits a unique and unenviable
position in the history of medicine. It is believed to be the first
and only clinical trial that patients and the charities that support
them have tried to stop before a single patient could be recruited
and is the only clinical trial that the Department for Work and
Pensions (DWP) has ever funded.

Since 1993, the giant US permanent health insurance company
UNUMProvident has been advising the UK DWP about the most effective
ways of curtailing sickness benefit payments. The PACE Trial is run
by psychiatrists of the Wessely School, most of whom work for the
medical and permanent health insurance industry, including
UNUMProvident. These psychiatrists insist =96 in defiance of both the
World Health Organisation and the significant biomedical evidence
about the nature of it -- that 'CFS/ME' is a behavioural disorder,
into which they have subsumed ME, a classified neurological disorder
whose separate existence they deny. Their beliefs have been
repudiated in writing by the World Health Organisation.

In 1992, the Wessely School gave directions that in cases of ME/CFS,
the first duty of the doctor is to avoid legitimisation of symptoms;
in 1994, ME was described by Professor Simon Wessely as merely 'a
belief'; in 1996 recommendations were made that no investigations
should be performed to confirm the diagnosis and in 1999 patients
with ME/CFS were referred to as 'the undeserving sick'.

The complaint is supported by a 442 page Report which addresses areas
of major concern about the PACE Trial.

These include apparent coercion and exploitation of patients, flawed
methodology, apparent lack of scientific rigour, apparent failure to
adhere to the Declaration of Helsinki, the unusual personal financial
interest of the Chief Investigator, the vested financial interests of
the Principal Investigators and others involved with the trial and
the underlying non-clinical purpose of the trial.

The psychiatrists' unproven beliefs and assumptions are presented as
fact and trial therapists have been trained to provide participants
with misinformation; therapists have also been trained to advise
participants to ignore symptoms, a situation that may in some cases
result in death.

There are some extremely disquieting issues surrounding the MRC PACE
Trial and documents obtained under the Freedom of Information Act
allow the full story to be told for the first time.

People with ME/CFS do not seek any special consideration; they simply
wish to be treated equally to those who suffer from other classified
neurological disorders. As shown in the Report that accompanies the
complaint, the MRC PACE Trial clearly demonstrates that people with
ME/CFS are not treated equally to those with other chronic
neurological disorders.

The Report can be accessed at
http://www.meactionuk.org.uk/magical-medicine.pdf
File Size 6Mb
Adobe Acrobat format

CONTACT: Professor Malcolm Hooper 0191 =96 528 - 5536

- - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -


Letter of complaint to the Rt Hon The Lord Drayson
--------------------------------------------------

Professor Malcolm Hooper Ph.D., B.Pharm., C.Chem., MRIC
Sunderland SR3


11th February 2010

The Rt Hon The Lord Drayson
Minister of State
(Science and Innovation)
1, Victoria Street
London
SW1H 0ET


Dear Minister

re: Complaint about the Medical Research Council

It is with deep concern that I lodge this formal complaint about the
Medical Research Council with you in your capacity as Minister with
responsibility for the MRC.

You will doubtless be aware of the serious problems at the MRC that
were documented in the 2003 Report of the House of Commons Select
Committee on Science and Technology (HC 132) in which MPs issued a
damning judgment on the MRC, lambasting it for wasting funds and for
introducing misguided strategies for its research. MPs found
evidence of poor planning and of focusing on 'politically-driven'
projects that have diverted money away from top-quality proposals.
The unprecedented attack was the result of a detailed probe into the
workings of the MRC.
Sadly, very serious problems continue to exist at the MRC, with
disastrous results for patients with Myalgic Encephalomyelitis/
Chronic Fatigue Syndrome.

The attached 442 page Report addresses the background to the MRC
'PACE' Trial on 'CFS/ME', the biomedical evidence that disproves the
assumptions of the MRC trial Principal Investigators, the many
extremely disturbing issues surrounding the PACE Trial, and
illustrations from the Manuals used in the trial.

The unproven beliefs and assumptions of the MRC Investigators are
presented as fact; trial therapists have been trained to provide
participants with misinformation, and therapists have also been
trained to advise participants to ignore symptoms arising from the
interventions, a situation that may in some cases result in death.

Patients with ME/CFS do not seek any special consideration; they
simply wish to be treated equally to those with other classified
neurological disorders. As shown in the commissioned Report that
accompanies this complaint (a bound copy of which will follow), the
MRC Trial clearly demonstrates that people with ME/CFS are not
treated equally to those with other chronic neurological disorders.

Given the long-standing recognition that at least one of the
interventions used in the trial is contra-indicated for people with
ME/CFS, an intervention that is already known to have adverse effects
on 50% of those who have already undertaken it, there is
international concern about the MRC PACE Trial.

I urge you to read the attached Report and to respond to it with due
attention and alacrity. You may wish to know that the Report is
already on international academic websites.

Yours sincerely

Malcolm Hooper

Download report here


Kris Kristofferson, "In the News"

Viral cause of CFS/ME found?

"Researchers in the US have discovered that a high proportion of people with the debilitating neuroimmune disease Chronic Fatigue Syndrome (CFS), also known as Myalgic Encephalomyelitis (ME), have a retrovirus called XMRV in their blood.

The groundbreaking study was the work of scientists from the Whittemore Peterson Institute (WPI), located at the University of Nevada, Reno, the National Cancer Institute (NCI), part of the National Institutes of Health, and the Cleveland Clinic, and was published online on 8 October in the journal Science.

CFS is a debilitating disease that affects millions of people worldwide, including an estimated 1 to 4 million Americans, according to the US Centers for Disease Control and Prevention (CDC).

The illness is hard to diagnose and the mystery surrounding the condition leads some people to suspect that patients are somehow either imagining their symptoms or malingering, or that they have some underlying psychiatric problem."

NOT!

Link
Link

OSLER'S WEB author Hilary Johnson has written a moving essay on this discovery and its implications. Read it here.

Cause of CFS/ME Found - Hydrogen sulphite

As with ulcers and Helicobactor pylori, an illness-causing culprit
in CFS can be bacteria that produce hydrogen sulphite - dangerous SOUR GAS - in the gut. Sour gas can weaken and kill and is much feared even by the strongest workers in industry.
Probiotics and Bismuth - in Pepto-Bismol - can help.
More at the excellent blog of Dana Herbert, food and health activist.