ME: A Simple Service Standard.
Greg & Linda Crowhurst Nov 20 2007 (May be reposted)
"When a well-packaged web of lies has been sold gradually to the masses over generations, the truth will seem utterly preposterous and its speaker a raving lunatic"(Dresden James) John le Carre, Absolute Friends, Coronet Books, London 2003, p.334
As only a novel can do, Absolute Friends is a gripping expose of the all pervasive influence of corporate culture upon society; the quote above is a particularly poignant one for ME sufferers.
In the history of medicine has there ever been such a "well-packaged web of lies" as the antics of the Insurance industry; its twenty-odd year attempt, against all the odds, to get ME labeled as a psychiatric condition, instead of the neurological disease that it is? Five time more prevalent than AIDS, much bigger than lung cancer and breast cancer combined, much bigger than multiple sclerosis, diabetes, heart failure, kidney disease, or cystic fibrosis, ME has wrecked our life, my wife and I, for the last 14 years. Effectively, my wife lives the life of a dying person, she is as sick as an AIDS patient close to death or a terminally ill cancer patient and has been like this every day for nearly a decade and a half; with nothing to ease the pain; just me holding her, when I can.
The Insurance Industry, in the meantime, have almost taken over the NHS and just for good measure here in the UK, the Welfare System, the Medical Research Council, all the Royal Colleges, and through the Science Media Centre, the media itself. It is hard to look at my wife in so much pain, so paralysed, so breathless, so numb, too sore to even touch; knowing full well that the reason nothing at all is being done for her, is because of the extraordinary influence of a minority group of UK mental health professionals, who have proven affiliations to corporate industry.
ME, it is to live in a world gone quite mad.
"March you get sore feet. Protest you get a bad throat……Anybody who nails the lies is a radical malcontent.(Absolute Friends p.275)"
Currently you have a name : "ME" that anyone can interpret almost anyway they wish. You have a real physical disease that is not properly validated as such and that is why people’s experience is so devastating and distressing. They have to seek someone who believes in them and their illness. They have to actively seek someone who believes in them and their illness to get any care at all. This is what people with ME are currently experiencing :
q· Denial of how very physically ill they are.
q· Playing down of the symptoms and the disease process.
q· Lack of appropriate biomedical tests.
q· Confusion over the clinical definition and a dearth of appropriate treatment of ME.
q· Potential abuse by medical professionals and carers who do not know or choose not to know the truth of this neurological illness.
q· Misinterpretation and misrepresentation of the facts of the disease.
Plus a complete lack of support; on so many levels, it is an absolutely unacceptable level of service provision to such chronically ill and disabled people. The Government funds only psychiatric research. The Medical Research Council erroneously classifies ME as a mental disorder, as does the Institute of Psychiatry.
A true ME service can only be built upon truth, not lies or silent denial. We want the best outcome potential, to:
q· Help sufferers with the things that can be helped.
q· Support sufferers with the things that cannot be helped
q· Help sufferers to live at peace, to the best of their ability, within a complex and ravaging illness.
ME sufferers want peace of mind; they want to know clearly what is wrong with them. They want to understand their symptoms, they want to know if any of them can be alleviated. They want an accurate diagnosis and a realistic prognosis; otherwise they cannot adjust their life accordingly. You cannot get on with your life, basically, if all the time you are waiting to get better. People need to be able to accept how ill they are and this is an emotional and practical process that cannot be dealt with if the illness and the full range of devastating symptoms are not validated in the first place. It is like standing on a pile of sand with no firm foundation upon which to build. Sufferers want adequate and appropriate services, in order to maximise the opportunities of their life and to minimise the stress and distress of the illness. The key factor, says my wife, is being able to accept that you are ill, there is no treatment and currently there is no cure; you have to learn how to live with that harsh reality. You also need hope that it will not always be like this, that the government will do something sincere, validating and appropriate about it, by funding biomedical research and biomedical clinics with biomedical clinicians, who will develop the service as research discovers new ways forward.
It has taken us 14 years to identify five core components that are essential in any ME service or policy statement; if a single one of them is missing then people with ME are likely to be harmed. In our opinion, any service for people with ME should honour the WHO definition of ME, should be underpinned by a clear definition and criteria, should know and understand all the symptoms and the multi-system dysfunction and should be willing to create the clearest picture of people’s circumstances, so that they can get the best treatment and support available. As these services are currently not available, they need to be created, because ME sufferers are entitled to it.
Here is a framework against which to judge any service or policy announcement, such as the recent NICE guideline in the UK.
1. Honour the fact that ME is a serious neurological disease (WHO ICD 10. G93): The WHO definition is the one piece of evidence and validation that people with ME already have, to prove they are ill with a recognised disease. Quite simply it is the truth, from which all service effort must flow. If you come from any other position, for example that ME is a psychiatric disorder, what you say may even sound reasoned, on paper at least, but all that flows from this flawed perspective will be skewed, twisted and even deadly, if it is built upon the wrong reasoning that ME is a mental health disorder.
If a service does not accept the WHO definition that ME is a neurological illness, it will allow various interpretations of what ME is, to be acceptable.
There are very real vested interests in portraying ME as a psychiatric syndrome, as opposed to a seriously debilitating physical illness, with multi system dysfunction, as highlighted by Ian Gibson MP in his Parliamentary Inquiry (2006). Ifpractitioners do not believe ME is a physical neurological illness, then all the patient’s symptoms can be misinterpreted and not honoured ; this is so dangerous.
2. Respect the fact that ME is a multi-system disease affecting all systems of the body and each person’s individual experience of this disease. Over and over again one reads about how incredible it is that ME patients manage to survive at all, so dreadful and serious are the symptoms. Patently though, this is not being respected by policy makers; who, having considered the biomedical evidence, would dare recommend rehabilitation or Graded Exercise Therapy as THE core treatment strategy, as NICE do, in their recently published Guideline? Only by taking into account the full biomedical research can a full and true picture of the severity of the illness and symptoms in ME, be arrived at and a safe care pathway created.
3. Validate the ME sufferer's experience by using appropriate criteria for assessment and adequate biomedical testing using up to date equipment and methods. The Byron Hyde, the Sarah Myhill, the Paul Cheney; the level of assessment and testing that they carry out in their clinics - this must be made available to ME sufferers across the board. What other illness of this severity or disability would settle for less?
By not using a clear definition and by not advocating appropriate clinical criteria and state of the art biomedical testing, a service will only spread confusion for doctors patients and paramedical staff alike about what is ME. Clear diagnostic criteria, such as the Canadian Criteria, are essential for doctors to be able to properly identify the disease and not confuse it with "fatigue" conditions.
4. Identify the full need and aim to treat/support the whole range of symptoms, with honest prognosis. Survey after patient survey paint an horrific picture of multiple serious symptoms that affect all the body systems; ME sufferers are in sheer physical torment most of the time. Can these symptoms be treated? We don’t know. After 14 years of unbelievable suffering, my wife is more or less left to just get on with it. Patients and medics alike will not understand the experience of people with ME fully without proper emphasis and guidance on the vast range of symptoms. Proper aids and equipment will not be developed or provided unless there is a complete documentation of the often confusing symptoms. In order to have the symptoms of ME fully treated and honoured, full biomedical clinics and clinicians need to be in place. The psychiatric skew on this illness needs removing as it badly influences the perception and the reality of service provision.
5. Competently provide ongoing support: It is frightening how little support people with ME receive. These seriously ill and disabled patients every day have to put up with clumsy or inadequate, if any, support that does not take into account the light, the touch, the sound, the drug and chemical sensitivities. The pain, the paralysis, the numbness, the inability to bear being touched. The screaming crawling sensations, the itching burning agony, the inability to breathe, to talk, to think; and the post exertional malaise.
Support needs are so complex, there are so many issues on so many levels to take into account, especially with severe ME. On our website: www.metrainingco.org.uk we have posted a detailed guide to supporting the severely affected. Competent support can only be in place if the illness is recognised, defined, outlined fully, tested in depth and treated appropriately. It can only be available if there is a genuine commitment to training based on the four previous criteria. It will only be available when ME is fully honoured as the severe, neurological, multi-system, dysfunctional, disabling disease that it is. It will only be available when there is appropriate investment to provide for it.
Conclusion: People with ME need to set the agenda, not government or the insurance industry. We desperately need to reclaim our power, sufferers and carers, and take a stand against the blatant lies, the widespread injustice and the distortion of the truth of ME.
We need to build proper services that honour, respect, validate, treat and support people with ME today.
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