A Letter to Ed Miliband
Greg Crowhurst 28th Sept 2010
(Permission to Repost)
Dear Ed Miliband,
Back in 1997, when New Labour first got elected, my wife had been very sick for 4 years. Today, when you give your first speech as Leader of the Opposition, she will have been ill for 17 years; in all that time nothing has been done to help her.
One of the first things that local Labour activists did , in our area, was to call round house to house , to celebrate their win Both my wife and I who are Labour supporters, though not party members, were utterly shocked by the rhetoric being expressed that “everyone knows that 90% of people on Benefits are scroungers.” Although we were assured by our MP , at the time, that this was not the Party view, it clearly was very near to the mark.
My wife has Very Severe Myalgic Encephalomyelitis (ME), that means that she is as functionally impaired as someone suffering from diabetes or heart failure or kidney disease, and as severely disabled as those with heart failure, late-stage AIDS, MS, patients undergoing chemotherapy, and COPD (chronic obstructive pulmonary disease. Recovery from severe ME is extremely rare and around 30% of cases are progressive and degenerative ; ME can be fatal.
My wife – and I, have been left to just “get on with it”, to cope with her never-ending intolerable agony , without hope of biomedical tests and treatment being provided by the NHS, partly because of the enormous influence of the Medical Insurance lobby upon Government .
The annual cost of ME to the UK economy is estimated at £ 3.5 billion and in the USA at $24 billion; it is clearly in the Insurance Company’s interest to deny that ME is real , (despite the WHO classification of ME as a neurological condition ICD 10 G93.3) since they have to pay out less on policies.
UNUM , arguably the world’s largest disability insurance company, has been directly involved in advising the UK government since at least 1994 when the Conservative government hired its Vice President to advise on 'claims management'.
Under New Labour, UNUM sponsored meetings at the 2003 and 2005 Labour Party conferences, titled 'The missing million: disability and pathways to work' and 'Welfare Reform: The way forward', respectively . Illness, UNUM argues, is a dysfunction of the person; the problem of illness is located in the individual’s beliefs and behaviour.
In 2001 UNUM launched New Beginnings , a public private partnership which was hugely influential in shaping Public Policy, especially in relation to the last government’s Department of Work and Pensions ‘s (DWP) Pathways to Work programme – designed to get disabled people back into work.
New Labour’s Welfare Reform Bill received Royal Assent on May 3rd 2007; leaving the ill terrified that it was a drive to force them off benefits into jobs they are too ill to perform. In our long experience, to be disabled or ill – or to be a full-time Carer, under the New Labour government, was to be poor, punished and penalized.
Particularly insidious has been the influence upon Government, of a small school of UK psychiatrists, with direct links to the medical insurance industry who have insinuated their view that the way to treat the sick and the unemployed is to given them Cognitive Behaviour Therapy, whilst pursuing an agenda to deny the very real physical causes of illness, particularly with regard to Myalgic Encephalomyelitis, which is a Neurological Disease.
In 1991 UK psychiatrists Michael Sharpe, Simon Wessely and Peter White were instrumental in the formulation of the “Oxford” case definition, which deliberately widened the definition of ME to include psychiatric disorders, specifically depressive disorders and anxiety disorders , and exclude those with neurological disorders : the very essence of ME. In other words they took over the name “ME” and used it for a totally different category of illness.
The Oxford Criteria are rightly despised and criticised with genuine reason, by ME patients and charities. Unfortunately under the New Labour administration, a multimillion pound award was made by the MRC (and DWP) to fund the non-biomedical PACE and FINE trials .
Despite attracting national and international criticism for allowing disparate fatigue conditions, for example post-traumatic stress disorder, depression and conditions that improve with exercise , to be represented as ME, these trails have wasted millions of pounds of pounds on tax payer money, that should have been spent on biomedical research for those who actually have neurological Myalgic Encephalomyelitis.
For my wife, who is genuinely, very severely physically ill, this has just added insult as well as denying her any hope of proper biomedical treatment or cure . It has guaranteed confusion about the very nature of her illness and has condemned her to endless suffering , prejudice, mistreatment and harassment.
The psychiatric influence upon the NICE ME/CFS Guidelines, has led to them being dismissed as unfit for purpose by virtually every ME Group in the land and by many of the medical colleges. Particularly dangerous about the NICE Guidelines is their proscription of the very biomedical tests that are needed to uncover the serious of this multi-system and severely disabling disease.
In 2006 a Parliamentary Inquiry , led by Labour MP Ian Gibson, called for a Standard’s Body investigation into the vested interests surrounding ME and also an investigation into the DWP It further urged NICE to recommend research into causation, therapeutic interventions and biomedical models of care; none of which has happened to date, to the shame of the Labour Party
I am writing to you, to urge you to rethink the whole attitude and approach to this dreadfully incapacitating and serious disease. I am asking Labour, under your leadership, to look with new eyes upon the influence of corporate vested interests upon public policy.
I am also urging you to personally take an interest in getting to know and understand the real issues concerning the denial of this neurological disease and the unbridled power of the psychiatric lobby, which is causing mayhem in the proper biomedical treatment of ME, throughout the country.
Until there is some honesty, within the Labour Party, about the deliberate abandonment of some of the most vulnerable people in the country and the corruption of vested interests in Government and Party Policy, then there will be no hope for my wife, whose experience of this disease was recently described , by a Consultant, as “torture” and a “ nightmare”.
We have always been impressed by your apparent honesty and integrity in government and feel you are the hope for the future of the Labour Party. Having always been a Labour supporter , prior to 1997, my wife felt bitterly betrayed by New Labour policies and attitudes and vowed to never vote for Labour again.
Perhaps you can change this ?