Saturday 27 January 2018

Our lives are in your hands, you can choose to take action to create change, or inaction to feed the existing inequality.

This is Christine Fenton's presentations given during the 

"Call For Change

Awareness and Educational event at Leinster House, Dublin

 on the 24th January 2018.

twitter:   facebook #call4changeME

To listen to Christine's presentation, go to 27.55 minutes into the video recording (6 minutes)

The HSE’s National Healthcare Charter
Is a statement of commitment describing what a Consumer should expect:
Care that is appropriate. Yet nowhere does the HSE document what appropriate care for ME is
It speaks of
Sensitive and
Yet the ME experience is

Safe services are provided with professional care & competence yet Drs meeting a person with ME do an internet search & ‘take it from there’. They don’t refer to HSE information which is accountable to or verifiable against an Irish ME Policy.

The assessment of need for community supports is similarly based on this lack of knowledge. 
Ignorance leads to harms. The benefits & risks of treatment are to be explained. Yet many Drs continue to encourage exercise, without warning of associated harms. Few Drs are aware there are associated harms unique to ME. We’re told there will be relevant information leaflets about your illness. There are no leaflets, nor any information on the HSE website.

Contrary to the expectations raised by the Healthcare Charter, The ME Experience is that Health Professionals have no Training, Guidance, Or Policy to refer to.
This results in, Inconsistent practice, Uninformed provision. And an Increased risk of long term harms.

Effectively there is an inequality in the system.
Other illnesses are managed with reference to a Clinical Care Pathway. Statistics about all aspects of the illness. Life expectancy. Co morbidities. Progression. With access to a professional. Who has relevant knowledge & experience.
Yet people with ME are denied all these things. Why are we denied the supports which are deemed appropriate for others? Why is a life with ME based on inequality?

The National Physical & Sensory Disability Database Collects information to Inform decision making & plan services. The Code for ME is E014.
Yet annual Metadata records only 14-18 people annually with ME.

Somewhere, there is something very wrong with these figures. Which means that any planning is based on a false premise. This is why we call for change. The inequality in care has to be addressed

So I have two actions to kick start that change 
1)   Undertake research to identify the Societal economic cost of ME 

Dr John Cullinan, of NUI Galway outlines his proposal to research the costs of ME to healthcare & the financial impact of an ME diagnosis on a patient comparable costs for dementia are 1.6 billion, cancer 2.3 billion. No one’s ever bothered to ask the question about ME. 
Is this an Expensive process?
Dr Cullinan proposes a budget, To finance a research assistant materials and resources by donating his own time & expertise, he proposes a 10,000 euro budget equating to less than 84c per person for a 12000 ME population.
Are we worth that much?

The 2nd Action
The HSE needs to start a conversation about ME currently the expertise about the research, treatment options, appropriate drugs, and how to manage this complex multi system, multi organ disease lies with us, those living with ME.
Too many Drs express amazement at the knowledge we hold.
We are happy to share our expertise,
The HSE needs our collaboration to bring it into the 2018 world of ME.

To do this we need a working party from which evolves an HSE wide ethos relating to ME

The Terms of Reference?
·     To write an ME Policy
·     The creation of a culture in which the concept of ME is understood
·     Adopt diagnostic criteria,
·     Create a Clinical Care Pathway for all ages
·     And all severity levels, mild to profound
·     Ensure ME is included in all clinical & non-clinical training
·     Identify a training & awareness raising process

·     To disseminate the expectations of this ME culture to all professionals who are currently practising.

Our lives are in your hands.
You have a choice to make, you can choose to take action to create change, or inaction to feed the existing inequality.

The choice is yours. 

Thank you for your attention.   


  1. this is excellent. it reflects pathways for other conditions that are 'perceived' mysteries, but pathways for rare diseases, complex diseases and misinterpreted diseases leads to abuse, neglect, shorter life expectancy, lack of consumer led care pathways and lack of 'rights of reply' rights to access the care a consumer needs and a type of 'imprisonment' without a way out when consumers actually 'do know best.' in many cases of complex diseases, MEand other rare and strange issues

    1. It takes so much energy to stand up for the principles of ‘patient knows themselves’ & needs to be heard & a collaborative working partnership between medical & healthcare staff & the patient, including that ‘they’ can learn from us! Unless we stand up for the expectation of partnership & working together, when we can, nothing will change.

  2. An excellent presentation! Thank you Christine for doing this on behalf of ME patients in Ireland. Our lives are in their hands and they need to step up to the plate and take action soon.

  3. Thank you both for your comments.

    The MEAI team

  4. Christine,you are amazing. The inequality is mind boggling. So much to be done.