Saturday, January 30, 2010

UK Persecution of ME/CFS sufferers, GWVs, ADRs, and victims of Iatrogenic illnesses

Many who suffer ADRs from meds, vaccines, environmental and iatrogenic illnesses are relentlessly persecuted in the UK. Most are given a diagnosis of ME/CFS - lack of both medical and social care, often leading to tragedy.

It should be simple to show toxicity from most drugs. Tests of DNA adducts would show traces of the offending medication, tissue samples, toe nail clippings, or even a hair sample, would probably show traces of the offending toxic medication. Yet, it is impossible to find a laboratory to test for residues of Lariam/Mefloquine or Fluoroquinolones in tissue samples.

The story of Sophie Mirza, diagnosed with ME/CFS is very significant. Many of us are diagnosed with ME/CFS. Sophie Mirza died after relentless persecution from UK health officials. Many are threatened by psychiatrists, psychologists of being sectioned. Medieval and cruel, it does not stop there. Sophie Mirza may unknowingly have suffered from an ADR to medication or vaccines.

Those chronically ill, specially those labelled with ME/CFS, are ground to a pulp by social security, social services, lack of medical care, denial by health professionals. This leads to fear, stress, and worsening of health. UK medical doctors no longer provide sick notes, clinical reports are misleading, omitting disabling symptoms, concealing positive results or blatant denial about the level of disability.

The welfare system and disability premiums are the lowest amongst the EU richest countries. It is barely sufficient and does not cover electricity, gas and other utilitiy bills. (Highest costs in the Western world, there is no regulatory price control). We have the highest rate of cold related deaths in the Western world!! The choice is between eat or heat, poor diet, leading to malnutrition makes it unlikely to recover from illness. Some countries in the EU cite the UK as the country where most chronically ill patients are unlikely to recover, (very low standard of socialized medicine) sinking even into deeper poverty (lowest social security amongst EU richest countries), and high cost of living.

Who would want to pretend to be ill under such draconian welfare system? Yet, many are "accused" of deception.

Despite being very weak and disabled, many are forced into physio leading to relapses and even more serious health issues.

As from October 2010, the criteria for being qualified as too ill to work will be very stringent, making most chronically ill patients "fit for work."

Unless paralyzed from head to toes, it will be very difficult to prove being too ill for work. The incentive is to force cheap labor for those too ill to work. If unable to go to work, we are told, work will come to you. Not accepting offer of work, will result in benefits being cut. Doctors no longer write sick notes. Clinic letters from hospital doctors are economical with diagnosis. It is a fight with clinicians, social services, and welfare. We are told, we have to "earn" welfare and disability. If forced to work from home, it will be equivalent to being paid $1 per hour.

Recently published in local regional newspapers, a man found dead in his apartment. He was unable to feed himself, social services refused care. Similarly, a woman was found dead on the floor of her kitchen. She was also refused care by social services.

A woman with a brain tumor was forced to work or face withdrawals of her welfare. She collapsed and could not continue to work.

A woman in her sixties, diagnosed with two cancers, underwent chemotherapy. Despite severe symptoms, doctors told her she was fit to work.

A man with cancer was told he had six months to live. He was told he had to work, and did not qualify for welfare.

Who would choose to be sick and ground to a pulp by a relentless pressure and a society increasingly hostile towards those who are ill - too ill to be productive? Who would choose to barely survive on minimum welfare and threats of dying of cold related illness during cold months?

Campaigners are muzzled, there is little free speech, the press is censored. Oh, and there is NO legal recourse. The UK opted out of the EU Social Charter.

Letters have been sent to Neurologists requesting that patients whose tests are negative, should be referred to a psychiatrist. Now, most of these tests are flawed. For instance, Mitochondrial diagnosis is very difficult to diagnose, tests are not specific with very low accuracy. There are metabollic syndromes caused by medications and vaccines, and environmental pollution, which are not identifiable, for which there are no tests.

Moving on to more persecution.


The told dying daugher she was lying, says mother Criona Wilson


Criona Wilson

Criona Wilson with a picture of Sophia, who died of ME aged 32

As Criona Wilson knelt beside her dying daughter’s bedside, she promised her that her death would not be in vain. Before the frail body of 32-year-old Sophia finally succumbed to the medical complications and ravages of ME, she replied in a whisper: “Then it’s all worth it.”

In the years that followed, Mrs Wilson, 66, a former midwife, dedicated her life to proving that her daughter’s condition was not a figment of imagination, nor one that merited her youngest child’s incarceration in a mental hospital.

Her battle saw her take on the medical profession and accepted thinking about the diagnosis and treatment of ME, also known as chronic fatigue syndrome. Eventually, in 2006, a coroner ruled that Sophia’s death was the result of myalgic encephalomyelitis — the first such ruling at an English inquest.

The fierce debate over ME has been highlighted once again by the case of Kay Gilderdale, who admitted assisting her daughter, Lynn, to kill herself after suffering from ME for 17 years. When she walked free from Lewes Crown Court on Monday, having been cleared of murder, Mrs Wilson was among those cheering her from the public gallery.

“I had to be there,” said Mrs Wilson yesterday. “It was such an important case. And the verdict was a vote for common sense in a trial that highlighted what people suffering ME and their carers have to face.”

Her daughter, Sophia Mirza, was a talented and popular arts graduate living with her mother in Brighton in 1999 when she contracted ME at the age of 25. She became confined to her bedroom and, just as Miss Gilderdale had, needed round-the-clock care.

In 2003 she was visited by a psychiatrist, even though Miss Mirza complained only of physical discomfort. The psychiatrist told her that she was making up her symptoms and if she continued to pretend to be ill he would section her under the Mental Health Act. Mrs Wilson said: “I knew my daughter. There was no way she was mentally ill or pretending.”

When the dread knock on her door finally came in 2003, there was little she could do. A policeman forced the door open and the psychiatrist and a social worker locked themselves into Miss Mirza’s room to prepare her for her trip to a psychiatric ward.

Her condition took a dramatic turn for the worse. After 13 days she was released and taken back to the care of her mother. “That spell in a mental hospital set her back terribly. We lost all faith in medical professionals. We were alone,” said Mrs Wilson.

In 2005 Miss Mirza could barely muster the energy to speak, eat or drink. She and her mother had already agreed that no doctors should be called in case she would be sectioned again. On November 25, 2005, Miss Mirza died in her bed at home.

Wiping tears from her eyes, Mrs Wilson said: “We did everything we could.” Determined to get to the bottom of why her daughter’s treatment had been so bad, she got hold of her medical records. After being contacted by the 25 Per Cent ME Group, which campaigns for those with the most acute form of ME, she agreed to her daughter’s body being examined.

At the inquest the next year a neuropathologist told the court that Miss Mirza’s spinal cord was inflamed and three quarters of her sensory cells had abnormalities. It was, the court heard, a clear physical manifestation of ME. The coroner ruled that she had died from “acute renal failures as a result of chronic fatigue syndrome”.

A year later, the National Institute of Clinical Excellence (NICE) issued its first guidelines on the diagnosis and treatment of the illness, describing it as “relatively common”, affecting up to 193,000 people in Britain. At the heart of that guidance is the need to take into account the opinions of the patients.Mrs Wilson is campaigning to get the Government to fund research into ME. “It’s not over yet.

http://www.timesonline.co.uk/tol/life_and_style/health/article7008987.ece


This week, a mother was acquitted of murder. The question here is not about assisted suicide, but how could the so called fourth richest country in the world, allow ME/CFS patients be persecuted with such vehemence, and ignored by all?


Trapped by ME, Lyn Gilderdale made it clear she wanted to die

Lynn Gilderdale

Lynn Gilderdale, who was struck down by ME after a BCG vaccination at the age of 14. Photograph: Sussex Police/PA

Live Journal was the one place where Lynn Gilderdale felt safe uttering her deepest, most troubling thoughts. Using a ­specially-designed handheld ­computer, and ­adopting the pseudonym Jessie Oliver, it was on the internet networking forum that she shared her desire to die with her closest friends.

After suffering a severe form of ME which left her bedridden and unable to speak or feed herself for all of her adolescent and adult life, she had decided she was never going to recover, and wanted to ensure her life would end before total degeneration robbed her of all dignity.

The revelations about her decision were made to her parents, Kay and Richard, and her small group of friends in the last two years of her life. To those who were invited to share her innermost thoughts it was a painful, yet understandable, choice.

Many of them were girls and young women who suffered the same illness; some, such as Lynn, had been confined to their beds and housebound for years as a result of ME.

"She did mention to me and very few others that she had an overwhelming desire to die," said Emily Levick. "I recall the time I first read about it. I cried, and then immediately texted her, as she was so afraid that her friends would think badly of her for it, and I wanted to reassure her that I could never think badly of her.

"She had battled for so many years, and was so desperately tired. It was quite literally heart breaking to read something like that, but I did understand her reasons. I believe I would have felt exactly the same if I were in her situation."

Her mother and father were kept well informed of her decision. A Do Not Resuscitate note was placed on her ­medical notes under her own wishes and she later went a step further and directed that a "living will" should be drafted in which she stated her wish not to be resuscitated or subjected to any medical intervention if her quality of life was too poor.

"She knew it was very difficult to talk to me about that subject because no one wants to hear it coming from their ­daughter," said Richard Gilderdale, a former policeman.

"I always used to say to her I was a coward because I listened to what she said and then she would always look at me with a knowing look in her eyes and say, 'Look, it's never going to go away, dad.' Her feelings were that she had made up her own mind that she couldn't carry on."

Yet despite this clear statement of her intentions, and fresh guidelines from the director of public prosecutions to reassure relatives who help the terminally ill end their own lives, Kay Gilderdale was brought before the criminal courts this month charged with the attempted ­murder of her 31-year-old child.

After she was acquitted of attempted murder today amid applause in court, the trial judge joined campaigners, friends and lawyers to ask why was she ever prosecuted? http://www.guardian.co.uk/society/2010/jan/25/lynn-gilderdale-me-assisted-suicide

5 comments:

  1. Beebs, I'm so glad you've written about M.E. and about Sophia Mirza and Lynn Gilderdale.
    This is the one and only place to get honest and accurate information about M.E:
    http://www.hfme.org/

    I did wr6ite to the Crown Prosecution Service (and got a reply) about Kay Gilderdale and I wrote to her at the same time, telling her that she was a heroine. Such a relief when the judgement was made - all praise to the British jury system.

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  2. This comment has been removed by the author.

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  3. Fey, thanks for input. Congrats on your advocacy blog!!!! I will read it and put the link here.

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  4. I've never been sure whether Lynn suffered from M.RE. or from adverse effects of the vaccination. They are not the same thing at all.

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  5. What did Neil Kinnock say? “Don't be ill, don't be poor, don't be old...” something like that.
    Trying to survive in the 21st century is much more dangerous than living in a jungle!

    I'm working on the blog, but slowly. So far, it's just a detailed description of my experience. I wrote it for teh Association de Victimes des Quinolones, originally, and it was on their website, but they closed almost immediately after that, so someone suggested I make it available online. I intend to add a lot more, obviously – facts and statistics, links and so on. We are already working, though, in France and Spain, to get these things known, mainly by posting on non-specific health and medecine forums and sport ones. Gradually, we'll geta new website and forum for FQs and perhaps other ADRs.
    I'm translating it into Spanish as well, for a separate blog or website, as there is absolutely nothing in Spain.

    I'll let you know when they're worth linking to.

    Interestingly, the French package inserts for Fqs have less information and fewer warnings than the U.S. ones, the Spanish inserts have hardly any warnings or information at all – apparently theses drugs have different propeties when they migrate!

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List of some Fluoroquinolones Antibiotics

List of some fluoroquinolones antibiotics- for list of symptoms go to: www.fluoroquinolones.org
forum: www.favc.info


Generic & Brand Name of most common Fluoroquinolones

Brand Name: Trovan - Zithromax
Generic Name: Trovafloxacin and Azithromycin

Brand Name: Factive
Generic Name: Gemifloxacin Mesylate

Brand Name: Zagam
Generic Name: Sparfloxacin

Brand Name: Vigamox
Generic Name: Moxifloxacin

Brand Name: Vigamox
Generic Name: Moxifloxacin

Brand Name: Cinobac
Generic Name: Cinoxacin

Brand Name: Penetrex
Generic Name: Enoxacin

Brand Name: Tequin
Generic Name: Gatifloxacin (Removed from US Market - May 2006)

Brand Name: Levaquin
Generic Name: Levofloxacin

Brand Name: Floxin
Generic Name: Ofloxacin

Brand Name: Synercid
Generic Name: Quinupristin and Dalfopristin

Brand Name: Trovan - Zithromax

Brand Name: Zymar
Generic Name: Gatifloxacin Ophthalmic Solution

Brand Name: Avelox
Generic Name: Moxifloxacin HCL

Brand Name: Floxin Otic Singles

Brand Name: Ciprodex
Generic Name: Ciprofloxacin and Dexamethasone

Brand Name: Raxar
Generic Name: Grepafloxacin

Brand Name: Ocuflox
Generic Name: Ofloxacin Ophthalmic

Brand Name: Quixin
Generic Name: Levofloxacin

Brand Name: Cipro
Generic Name: Ciprofloxacin

Brand Name: Proquin XR
Generic Name: Ciprofloxacin Hcl

Brand Name: Requip XL
Generic Name: Ropinirole Extended Release Tablets

Brand Name: Zanaflex
Generic Name: Tizanidine

Brand Name: Noroxin
Generic Name: Norfloxacin

Brand Name: Maxaquin
Generic Name: Lomefloxacin Hcl

Brand Name: Ciloxan Ophthalmic Solution
Generic Name: Ciprofloxacin HCL Ophthalmic Solution

Brand Name: Cipro XR
Generic Name: Ciprofloxacin Extended-Release

Generic Name Norloaxin Brand Name: Noroxin

Generic Name Temafloxacin Brand name Omniflox