2 posts tagged “campaign”

For those who are not aware of this I have an illness called Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS).  The history of this illness in terms of acceptance by the medical profession and the community at large as a legitimate illness has not been very favourable and that is saying it mildly.  To be honest the treatment of patients with ME/CFS has been a disgrace in the highest proportions, to the extent of some treatment being deemed as human rights abuse.

 
The issue now is that the UK NICE guidelines are going backwards in their thinking and are approaching the treatment of ME/CFS as a psychiatric illness.  This classification has huge ramifications for ME/CFS sufferers in the UK and possibly worldwide.  ME/CFS support groups are now trying to raise funds to oppose these antiquated and biased guidelines and we need your help.

 

For me personally I have experienced the lack of understanding by the medical profession and at one point the lack of understanding and compassion and inappropriate treatment pushed me to the brink of nearly removing myself from this world.

Still to my amazement we as patients still have to fight to get our illness recognised as a physical illness and not a psychiatric illness.  In reality this is totally absurd as the World Health Organisation has recognised ME/CFS as a neurological (i.e. an illness originating from physical origins) for decades.  Other examples of neurological conditions include Multiple Sclerosis, epilepsy, Parkinson ’s disease, just to name a few.

 
Not surprising is that the above mentioned neurological illnesses have also been deemed as psychiatric illnesses in the past.

Multiple Sclerosis (once known as creeping paralysis) was once considered a mental disorder caused by female hysteria and the removal of women’s ovaries or wombs was not unheard of.  This view meant little or no extensive research was conducted into the mysteries of MS, until very recent times. This led to the misguided conclusion in 1920 that men were more susceptible to MS, because women were mistakenly diagnosed as suffering with hysteria. Only recently has research shown MS to be neurobiological rather than psychological, resulting in a very different attitude towards MS patients. Other disorders once considered psychiatric: Parkinson’s disease, asthma, and epilepsy - to name a few.

In October 2001 it was discovered that CFS/ME had been ‘unofficially’ reclassified as a mental disorder in a U.K adaptation of a WHO publication, the ‘WHO Guide to Mental Health in Primary Care’, developed by the Collaborating Centre of the Institute of Psychiatry, London.  It was included under the classification F48.0 relating to mental, behavioural and neurotic disorders (neurasthenia).  Despite numerous complaints being made to the Collaborating Centre of the Institute of Psychiatry, and ICD-10 classifications being mandatory in the UK, sales of the book were allowed to continue unabated for years until almost all 30,000 copies had been sold. Then and only then was an erratum slip issued.  This misclassification also led to CFS/ME being wrongly classified as a mental disorder in the NHS Mental Health Data Manual.  It is noteworthy that CFS/ME has once again been included in the 2^nd edition of the ‘Guide’. However, the title of the book has been (conveniently) altered to include both mental and neurological disorders, and a few neurological disorders added. (Source).

There are some very good guidelines available for the medical profession to help them effectively manage ME/CFS and these guidelines are based on real scientific evidence.

Here are some examples:

The Canadian Consensus Guidelines

The South Australian Guidelines for GPs

The Clinical Guidelines for Psychiatrists – which clearly state that ME/CFS is NOT a psychiatric illness.

Below is a letter taken from the “One Click” website explaining the current situation and why it has an impact on many patients worldwide and why we desperately need your help.

We need to have a pledge of 20, 000 pounds to get the legal process under way.  Even the smallest pledge will help.  At present the pledged amount is 6, 200 pounds and we only have until the 5^th November which is only 12 days away.  We don’t need your money at the moment, we just need you to make a pledge that when required you will donate the amount you have pledged to the fighting fund.  There is more information on the One Click website.  All that is required is for you to send an email with your pledged amount.  See at the bottom of this post for the email template.

 

Dear All

For disenfranchised patients in conflict from many fields and the doctors, scientists, politicians and disparate advocacy groups et al who support them, this short paper is perhaps one of the most important that you may ever read in your lifetime.

This paper is about David against Goliath, harnessing the power of the internet and every other means possible to raise funds to prosecute the case for patients in conflict through the courts. It is about previously powerless patients taking the reins. Never has this been done in this way before. The eyes of the world are upon us. This initiative may well change the face of fundraising as we know it to be today. We are making legal history.

I would like to start by thanking everybody who has lent of their help and support in so many ways for all this time in getting this challenge of the CFS/ME NICE Guidelines by Judicial Review ready for publication, action and off the ground. Hugs, slapped backs, victory signs, the lot! Thank you!

I would particularly like to thank James Saunders, Senior Partner of Saunders Solicitors LLP, the firm conducting this case. The firm's sincere belief in the justice that is well overdue to all those wronged patients in conflict has kept us all going on One Click in the darkest of days, to culminate in the legal action put before you today.

Although this case is specifically about legally challenging the appalling National Institute for Health and Clinical Excellence (NICE) CFS/ME Guidelines, the implications and importance of it are in fact much wider than this.

Whether you fully understand the extensive history of the disgraceful saga of what has been done to ME/CFS labelled patients in the UK and all over the world for so many years or not is almost irrelevant in this case.

This issue is about the rights of previously powerless patients to take their case to court and to let the judiciary decide. Not the government and not the psychiatrists, but the law. As such, this case has worldwide appeal to millions.

The Worldwide Appeal

Other groups from different countries - all of whom read and/or distribute One Click material - may well ask: what has this Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) UK legal battle got to do with us? The answer is simple. Everything.

From Australia, New Zealand, the United States, France, Germany, Italy, Switzerland to name but a few countries and everywhere else, this case of the maltreatment of patients in conflict specifically concerns YOU.

ME/CFS misdiagnosis is being carried out on a massive scale around the world because it is an easy box to tick and a simple label to append. It is the ultimate wastepaper basket diagnosis. From cancer to variantCreutzfeldt Jakob Disease (vCJD/Mad Cow), Multiple Sclerosis, Lupus, Parvovirus Infection, Guillam-Barre, Lyme Borreliosis, Stroke and so on as but a VERY few examples, many patients have died whilst under the exclusive care of the psychiatrists who go to extraordinary lengths to bury their mistakes.

From vaccine damage to those sick children forcibly ripped from the arms of their parents by the State through the devastating secrecy of the Family Courts with the much discredited catch-all label of Munchausen Syndrome by Proxy/FII, this legal challenge mounted by One Click concerns YOU ALL.

I fully recognise that many others have their own projects that equally deserve meritorious financial attention. But I would say this. One Click has helped many disparate advocacy groups and people down these years by publishing their material to maximum worldwide effect and distribution. We have provided this service completely for free and have never asked for a penny. Not one. Now we are asking, please, in the nicest possible small way.

We fully appreciate the financial constraints under which many labour. But surely, even if you are on the terribly limited government benefits provided for by the State with which you are forced to eke out the most painful existence due to your ill health inability to work, you too can surely afford the equivalent of the cost of a cup of coffee and a sandwich that will help One Click and their excellent solicitors put the legal case for these patients from so many ill health walks of life?

Of course it would be great if people could/would pledge large sums for this most deserving legal case, but we need to be realists and pragmatists. If every person who reads One Click (between 4,000 to 8,000 hits per day on the website, every day of the week from 120 countries around the world) would pledge just £10 (or whatever currency denomination equivalent) to this Legal Appeal, our legal costs would be covered in an instant.

Please do not think for one single moment that what is being done by the psychiatric lobby to patients in Britain is none of your business. It most certainly is - morally, ethically and legally. If the psychiatric lobby is allowed to proceed full steam ahead without legal check with these CFS/ME NICE Guidelines successfully clinicised in Britain that are granting this lobby in excess £300 million, you may absolutely rest assured that what is being done to patients in Britain will be coming down your way very soon. An equivalent of this is already happening in some other countries.

We are asking for pledges, please, from all of you around the world - Australia, New Zealand, the United States, everywhere. In dollars, francs, euros, pesos, pounds, rupees, shekels, rials, rubles, bahts, dinars and yuans et al, the currency denomination is of no import. What counts is that you make your pledge to help humanity.

I will personally be contacting many of you directly, shortly. I predicate that there will not be another opportunity like this so perfectly crafted to call the psychiatric lobby to account in my lifetime and as such, I will leave no stone unturned to help patients.

History

I would now like to turn, please, to give you a very short potted history of why this legal challenge is so important. It is impossible to encapsulate the psychiatric lobby history of some fifty years malfeasance in this short paper and so I won't even try. Instead, I will do my poor best to provide you with the most sincere rationale of why the issue put before you today matters so much to so many and why it is so very important.

ME/CFS labelled patients have been appalling badly treated for many years. This goes straight to the heart of Patients' Human Rights.

We illustrate, for example, the overwhelming case of very ill children forced to exercise by the psychiatrists and told that their illness is all in their heads with feeding tubes shoved into their stomachs, lying in darkened rooms or locked away from their families in psychiatric wards. This has been done to them simply because they have had the terrible, terrible misfortune to be labelled with ME/CFS, recognised by the World Health Organisation as a neurological illness, but denied by the psychiatrists.

Numerous families have been utterly destroyed with what has gone down, with many children forcibly removed from their homes by the State under spurious grounds to force treatment.

We give you as but one example, the case of what was done to young Ean Procter as recounted by his Mum that is matter of public record on the Isle of Man and everywhere else.

This semi-paralysed eleven year old, ME/CFS labelled child was deliberately thrown into a swimming pool by the psychiatrists with no floating aids to see if he would sink or swim, to ascertain whether his paralysis was genuine or not. This is what these psychiatrists do to children in their atrocious financial championing of 'somatoform disorders'. Ean sank and had to be rescued from the bottom of the pool. These people nearly killed this child in an attempt to try to prove their risible 'somatoform disorders' point. This is what the psychiatrists do to ME/CFS labelled children in Britain, whether their parents approve or not. The cases are legion and still occurring today in one form or another right around the world as I write this to you now.

In 1999 the BBC took up the case for patients and broadcast a chilling and devastating exposé of the plight of ME/CFS labelled patients in the Panorama programme, Sick and Tired. Despite much public hand wringing and angst subsequent to the programme’s broadcast, once the waves of public outrage had subsided, matters moved on much the same as before.

The damaging power of the psychiatrists that has no basis in any credible science has grown exponentially down these years to become a global epidemic. Psychiatry is the one branch of medicine that never has to prove its case and yet is permitted to wreak havoc on the lives of those that it most unjustifiably targets.

Today

So what has changed since the BBC broadcast the Panorama programme in 1999?

Today in the year 2007, the National Institute for Health and Clinical Excellence (NICE) through a documented process of utterly corrupt medical and political manipulation of formal due process in the production of the CFS/ME Guidelines is proposing to squander £300 million of British taxpayer's money on these very same psychiatrists.

If the CFS/ME NICE Guidelines are successfully clinicised, £300m of our money will be used to completely and utterly legitimise psychiatric abuse of patients.

Benefits and insurance payments will continue to be refused and inappropriate and harmful treatments administered. New patients naive to the politics will be duped into believing that it is all being taken seriously and that the Guidelines mean that doctors have accepted that 'CFS/ME' is real. As with many of us, they may not find out until it is too late for them that the psychosocial treatments of Graded Exercise Therapy/Cognitive Behavioural Therapy (GET/CBT) and antidepressants were a one-way ticket to permanent disability.

Conclusion

If I have not managed to convince you of the crying, nay SCREAMING NEED to get behind this legal action in some small way through the use of my poor words and hard work, then I am so sorry. I will have miserably failed patients and therefore failed you all. I will have specifically failed my child whose childhood and entire life have been absolutely ruined by the psychiatric lobby dicta that has damaged millions.

We have the opportunity to challenge the psychiatric lobby through the courts by Judicial Review. Not from a tin pot firm of back street solicitors, but from Saunders Solicitors LLP, one of the finest in the land, so familiar with the biomedical case.

We need to bury all of our past differences. We need the ME/CFS charities who have declared the CFS/ME NICE Guidelines as 'Unfit for Purpose' to contribute some of the money that patients have given them to support this case. To do otherwise is completely unconscionable.

I am happy to report that since the launch of this appeal on Saturday, pledges - including those from academics and doctors - have been coming in thick and fast. We need more. Much more. This matter is urgent. We need to obtain pledges of £20,000 in total by 5 November 2007 to bring the psychiatric lobby to account through the courts.

Because of the sensitive (and wonderful!) identities of some of the people making these pledges that are now coming in, One Click will specifically not be publishing any names. It is far more important to get the pledges in to fight this good fight than to give publicity to those good people who are making it happen.

Here are the documents that you will need to inform your decision.

How To Donate - Legal Appeal Instructions
NICE Guidelines - Judicial Review Legal Briefing
Judicial Review - Legal Appeal Information

I personally will not rest until justice has been done. Please join me and the One Click organisation in helping to make this happen. Please place your pledge.

This is history being made. Please try and be part of it.

Thank you for listening.

Jane Bryant
Director
The One Click Group

 

http://www.theoneclickgroup.co.uk

 

Please forward this onto as many people who maybe able to help us in our fight.

 

 

If Saunders Solicitors LLP and One Click obtain the required financial promises from you all needed to prosecute this case, we will proceed as indicated. At this happy time, you may either send cheques direct to Saunders Solicitors LLP or use the card facilities delineated on their website. All major Credit & Debit cards are accepted by this firm.

 

If we fail to reach this approximate financial target, then obviously we will have to stand down from legal action against NICE. You will not be called upon to honour your pledge unless we reach the critical mass of the targeted £20,000 needed to take NICE to court.

 

The case is ready to be worked up for the courts. The time to act is now.

 

Herewith a small sample of reading material to inform your decision:

 

The One Click Group Response – NICE Guidelines

http://www.theoneclickgroup.co.uk/documents/NICE/ONE%20CLICK%20RESPONSE%20-%20NICE%20GUIDELINES.pdf

 

Jane Bryant – Legal Appeal Personal Statement

http://www.theoneclickgroup.co.uk/documents/NICE/Jane%20Bryant%20-%20A%20Most%20Personal%20Statement.pdf

 

Inadequacy of the York (2005) Systematic Review of the CFS/ME Medical Evidence Base.

http://www.theoneclickgroup.co.uk/documents/NICE/Inadequacy%20of%20the%20York%202005%20Systematic%20Review%20of%20the%20CFS-M..pdf

 

Nice Literature Review Critique

http://www.theoneclickgroup.co.uk/documents/NICE/NICE%20Literature%20Review%20Critique.pdf

 

Corporate Collusion, Hooper et al, September 2007.

http://www.theoneclickgroup.co.uk/documents/NICE/Corporate%20Collusion,%20Hooper%20&%20Williams.htm

 

NICE guideline on ME/CFS – ME Association statement

http://www.meassociation.org.uk/content/view/335/

 

Dr Charles Shepherd, ME Association, British Medical Journal, 1 Sept 2007

http://www.meassociation.org.uk/content/view/339/

 

25% ME Group Statement ON NICE ME/CFS Guidance Document, August 2007

http://www.theoneclickgroup.co.uk/documents/NICE/Charities/Final%2025pc%20NICE%20STATEMENT%20August%202007.doc

 

Mental Health Movement – Persecution of Patients

http://www.theoneclickgroup.co.uk/documents/ME-CFS_docs/The%20Mental%20Health%20Movement%20-%20Persecution%20of%20Patients.pdf

 

 

We look forward to receiving the tangible support necessary to challenge the psychiatric lobby through the courts.

 

Many thanks for your anticipated assistance.

 

The One Click Group

 

 

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CFS/ME NICE GUIDELINES JUDICIAL REVIEW

* The CFS/ME NICE Guidelines have been produced by a process of documented unethical political and medical manipulation of due process.
* Please help us to challenge the atrocious actions of the National Institute for Health and Clinical Excellence (NICE) and the psychiatric lobby through the courts

What It Is: Judicial Review - CFS/ME NICE Guidelines
Who Will Conduct It: Saunders Solicitors LLP

(http://www.saunders.co.uk/)

What It Will Cost: Approximately £20,000
Pledges Due In: 5 November 2007
Court Application File Date: 22 November 2007

* See Legal Appeal Instructions

(http://tinyurl.com/39cgjm)

* See Judicial Review - Legal Appeal Information

                                     (http://tinyurl.com/34exk8)

* See NICE Guidelines - Judicial Review Legal Briefing

(http://tinyurl.com/357o37)

 

Email your financial pledge to One Click and Saunders Solicitors LLP.
Our legal fundraising target is eminently reasonable and entirely possible when addressed by the collective. It is that simple.

We look forward to receiving your tangible support for this legal campaign.

FORCE NICE TO DO ITS DUTY TO ME/CFS LABELLED PATIENTS THROUGH THE COURTS NOW!

 

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