Posted in Explaining ME

Letters, why attach the words?

Almost a year ago my letters to Mr. Leo Varadkar, Minister for Health, began. Letters filled with words, words filled with one main question, “When will ME patients in Ireland receive the care they deserve from the medical profession?”

A question to which the following response was continually issued to me “Thank you for your letter, it’s receiving attention.”

And so began my unrequited letter writing, hoping one day, one would eventually receive a response longer than a mere scattering of words.

This week, one did…. there were lots of letters, lots of words… but my question still went unanswered:

“Dear Ms Curran,

The Minister for Health, Leo Varadkar, has asked me to thank you for your letter concerning Myalgic Encephalomyelitis.

Let me write firstly that many of the challenges facing people with Myalgic Encephalomyelitis appear to be based on the symptomatic approach taken in terms of management. The implications for same are that patients are treated by many different specialities including rheumatology, immunology, neurology, pain specialists, etc. An integrated holistic approach provides the basis for care of individuals with Myalgic Encephalomyelitis.

Some priority developments for our health services include:
–        Development of Integrated care programmes
–        Implementation of Individual Health Identifiers & eHealth
–        Establishment of Hospital Groups
–        Enhancement of the Departments information and research capabilities.
All of these priorities are advancing and when achieved should have a role to play in supporting patient centered integration of our health services to the benefit of all service users including those with Myalgic Encephalomyelitis.

The HSE’s promotion of patient centred integrated care has seen the establishment of Integrated Care Programmes for, among others, the prevention and management of chronic disease.  Integrated Care aims to ‘join up’ health and social care and put good patient outcomes at the centre of care delivery. This work involves:
–        New and improved structures for integrated care
–        Resources in the right location at the right time
–        Re-structuring of roles to allow for community outreach
–        Focus on and prioritisation of patients with chronic disease
–        Encourage partnership environment between patient and doctor/GP
–        Centralised repository access for self-care information.

Ultimately, the Integrated Care Programme for Chronic Disease aims to provide a framework for:
–        Supported self-management
–        Patient managed at the most appropriate level of complexity
–        Reduced hospital admissions
–        Reduced emergency department attendances
–        Reduced length of inpatient stay
–        Increase in early discharge
–        Reduced GP out of hours attendance.
All of these initiatives will benefit patients with Myalgic Encephalomyelitis around the country.

Care pathways specifically for patients with chronic disease will be incorporated in the model of care for chronic disease. These are likely to be more generic pathways outlining best practice to better support patient management.

The eHealth strategy also applies to chronic conditions such as Myalgic Encephalomyelitis. It will effectively marry specification of patient data with technology as an enabler to offer a wider solution to support models of integrated care. The individual health identifier and electronic patient summary record will support the management of patients across different sites and specialities such as is the case with patients with Myalgic Encephalomyelitis. It would mean that all those working to support the patients will have ready access to the most up to date information on the patient’s status leading to a more joined up approach and avoiding treatment occurring in silos.

Other relevant health strategies such as Healthy Ireland, have key goals with respect to reducing health inequalities and implementing principles of equity and fairness. The overall vision is a system in which everyone can enjoy physical and mental health and wellbeing to their full potential, where wellbeing is valued and supported at every level of society and is everyone’s responsibility. The strategy, reflecting the corporate plan, places a significant emphasis on quality and patient safety seeking to ensure that people’s experience is not only safe and of high quality, but that it is also caring and compassionate. This should be applicable to all patients.

The information currently available on the HSE website will be reviewed as it is acknowledged that information needs to be current and reflective of best practice in the area of treatment and management of all conditions. Information on the webpage is currently based on the UK NICE guidelines published in 2007. While there may have been recent developments in terms of management of Myalgic Encephalomyelitis, a revised NICE guideline has not as yet been developed/published.

I hope that this helps to explain the current position with Myalgic Encephalomyelitis.

Yours sincerely”


I’m stubborn by nature and so decided to send one last letter before the General Election takes place in three weeks time:

“Many thanks for taking the time to send me your detailed e-mail, especially now, as it’s so close to the General Election.

While your e-mail is indeed detailed, I can’t help but wonder if the words Myalgic Encephalomyelitis were stitched in between varying sentences of an e-mail prepared earlier for a different query.

Also, the information provided lacks one concise answer to my question… when will an ME patient be able to walk into a doctors surgery and a) receive early diagnosis (this shouldn’t be difficult as there is list of tools for diagnosis available from many sources including a detailed report for the IOM in the US) and b) be supported by a doctor throughout the illness?

As I’ve stated from my first e-mail almost a year ago, I’m not expecting a cure, I’m not expecting an ME specific clinic to be set up.

I’m simply asking that the citizens of this country who happen to become ill with ME (approximately 12,000 of whom are diagnosed at present) be treated in a caring and understanding manner and receive the support they require from a primary care setting.

What I mean by support is that a doctor can explain what ME is to a patient upon diagnosis, and then point them toward sources such as the Irish ME Trust and the Irish ME/CFS Association, assuring the patient that they are not alone, assuring them information is indeed available to them and access to other patients is available also. This would be beneficial to both the patient and the patients family and help ease the stress of diagnosis and the uncertainty of the illness.

Receiving a timely diagnosis and the basic care from a GP would be hugely beneficial to patients and this simple, economically friendly step would be the first milestone set by any Government in this country. It’s just a pity 12,000 people are still waiting for this step to be taken.

Go n-éirí an t-ádh leat leis on olltoghchán.”