Dashed hopes and inappropriate services.

Stonebird

What I want for Severe ME, yesterday, today and tomorrow...

Linda Crowhurst

I wrote this list of needs about eight years ago. What is devastating about it is that not one of these items has been fulfilled and enteroviral ME seems to have almost completely disappeared from recognition .

 Surely it is time we had accountability and responsibility for the serious medical neglect of some of the most severely ill and isolated people in the country. 

When will the charities achieve any of these goals by seeking and speaking the truth required to get change?

1 Universal respect that ME is a real, physical disease, not a syndrome or a fatigue state, by honouring it's proper name - Myalgic Encephalomyelitis.

How many clinicians, professionals, charities, groups, individuals actually do this?

2 Appropriate full criteria that succinctly and clearly identify the disease.

How many different criteria and poor criteria are being used to supposedly identify people with ME, thereby misdirecting understanding and recognition of ME as a discrete disease? How many people are willing to settle for too little?

3 A biomedically valid diagnostic tool for identifying ME clearly and correctly.

How will this ever be identified and found, all the time there is no agreement of what the illness actually is and so many people have different views and focus and use different identification criteria,such that there is no clarity of patient pool in research?

4 Acknowledgment of all the symptoms and system dysfunctions.

How can the disease Myalgic Encephalomyelitis ever be recognised, till all the symptoms are acknowledged as part of the disease and used in the identification criteria? How can it be that the more severe and extreme symptoms are simply ignored or downplayed by medicine and research?

5 An honest and realistic prognosis.

How can people have an honest prognosis all the time a psychosocial model of interpretation denies the true reality of this serious and life threatening disease? And being positive is used to deny the true seriousness of the illness and its unlikelihood of recivery without biomedical treatments?

6 Tests and scans that will show up the dysfunction that exists at a cellular level and system level.

How can anyone get the appropriate investigations when NICE proscribes even basic identification tests that might help? Why is it that eight years on we are no nearer, in fact, we seem further away from this ever being a realistic option?

7 Government funded research into the physical underlying causes of ME.

How can this possibly happen all the time that people attending the CFS fatigue clinics are the pool of research patients and the most severely ill are medically neglected and ignored and 'fatigue, is described as the primary symptom?

8 The development of new biomedical responses and treatments for ME.

How can this be possible, while NICE still sticks to its biopsychosocial model of response and its wide interpretation of a fatigue illness, rather than providing the much needed biomedical response you would expect for specific enteroviral disease and blocks the possibility of reconsidering biomedical research for another five years by putting ME on the static list?

9 Appropriate aids and equipment, appropriate for the level of extreme hypersensitivity people experience, created and provided on the NHS.

Why is there no apparent understanding of the very particular aids required for the extreme and unusual level of hypersensitivity people experience with ME? Why has there been no specialised service created or body of knowledge amassed for technicians to understand the unusual and specific needs in order to create aids and equipment, using special materials that would actually be comfortable enough or provide protection from the environment, especially for the most severely affected? Why are these not freely and widely available for people in such agony that living has become a nightmare of physical persecution by the ordinary environment? Why isn't this a priority?

10 Well-trained professionals from all agencies involved, who know and understand both the physical disease, the potential level of disability and its impact and how to communicate and support people with severe ME,not make them more ill.

Why are services across the boards still not understanding or providing appropriate level of care, medical and social? Why has the psychosocial lobby been allowed to spread its misinformation of ME and its misinterpretation of ME as chronic fatigue, rather than a serious neurological disease, caused by an enterovirus, so effectively across the country, in collaboration with some of the major charities, leaving practitioners and carers alike confused and lacking in the specific knowledge required to safely help people with ME?

11 Systems, forms, appointments and procedures that take into account the level of illness and disability people have and make life easier not harder to manage?

How can this possibly happen, all the time the psychosocial lobby hold such power and influence and continue to spread misinformation about ME as deconditioning and wrong thought?

12 An awareness that home visits and a flexible approach are generally essential in order to see a person with Severe ME?

How many people can say that this is the norm? How can the most ill get access to basic dental and optician care, let alone GP or specialist medical care at home, when there is not enough interest in this illness within the medical establishment, home specialist visits are impossible unless privately funded and professionals simply do not have the required understanding, in general, to know how to safely engage with people?

The travesty of this document is it was written with hope. Hope that the interest and care was out there somewhere. The hope that if the need was articulated people would surely jump to provide it because the need is extreme and the case for change dire and long overdue, even then.

Shockingly nothing has really changed for the better in the last eight years. In fact, from where I am looking, living now with very Severe ME, it seems that the situation has got much worse. The psychiatrists are more entrenched and powerful than ever, the charities more compromised, the real disease of Myalgic Encephalomyelitis almost completely lost in a sea of fatigue misrepresentation.

Until there is a removal of psychiatry from first hand involvement in ME and a firm separation of the charities from psychiatric collusion and until a new separate biomedical pathway is set up for genuine ME sufferers and the medical profession becomes interested enough and genuinely concerned about this disease, there will continue to be confusion and no real hope of adequate and safe medical services for the most ill and seriously neglected neurological disease: MyalgicEncephalomyelitis, which is most certainly not, Chronic Fatigue Syndrome.