Hey guys,

We are doing great so far, thank you all so much for this continuous support, it is really appreciated everyday! :)

**************Announcement 1*******************

Just a heads-up of the amazing and unpayable hard work of TD Gino Kenny and Rachel Lynch (from Fibro Ireland) with her knowledge and insight, who are involved in the background of it all:

"This is the motion that was forwarded to the journals office in the Dail. It has been signed by 10 TD’s thus far and we hoping it will be undersigned by a majority of TD’s. The next step is to get it debated on the floor of the Dail and start a meaningful debate about the substantial issue of those that live with Fibromyalgia/ ME in Ireland.

The motion doesn’t have any statuary power meaning if passed the government don’t have to act. The main narrative is that it gets highlighted and make visible the invisibility of chronic pain and fatigue.

Dail Eireann

Notes that-

It is estimated that 90,000 to 180,000 are affected by Fibromyalgia in Ireland.
Fibromyalgia is a debilitating condition with chronic pain and fatigue being primary features.

There are no nationwide specialist facilities or comprehensive treatments available.
Those living with Fibromyalgia have encountered difficulties when trying to access social welfare. Instead of getting vital support at a crucial juncture in their illness experienced being refused, stressed and stigmatised.

The condition is significantly misunderstood.
The majority of those affected by Fibromyalgia are women. Ratio is 6:1.

Agrees that-

A National Registry of Chronic Pain Syndromes and clinical guidelines for different types of chronic pain as per ICD-11 Codes and IASP WHO Guidelines be drawn up to assist Medical Practitioners to better understand different types of Chronic Pain Syndromes and to be able to differentiate according to WHO International Guidelines

The delivery of care is limited by the lack of commitment to the diagnosis and treatment of fibromyalgia in addition to the deficiencies in resources currently available in community, primary and secondary care.

Delivery of care is also hampered by the absence of clear guidelines for management and the lack of opportunity to develop integrated care pathways across primary and secondary care. Many people with Fibromyalgia suffer from chronic pain.

Access to Psychological Therapies is a paramount need in Health Service Development together with improved access to all multidisciplinary health treatments. Patient education and self-care is a vital aspect of management of Fibromyalgia and optimal benefits are obtained when Fibromyalgia sufferers acquire skills in helping reregulation of the autonomic nervous system and other systems as well as pain and stress management skills.

Those living with Fibromyalgia have access to a recognised Pain Programme and Pain Psychologist. Autogenic Training, Mindfulness and Yoga can be especially helpful as part of comprehensive Cognitive Behavioural Therapies as well as appropriate exercise to improve mobility and function, together with dietary adjustment. In some cases the person with Fibromyalgia is able to return to work.

Fibromyalgia should be recognised as a disability by the state for people with severe symptoms who have the condition on a long term basis which has proved unresponsive to interventions.

In these cases alternative treatments such as access to medicinal cannabis should be explored. Access to medicinal cannabis through the Cannabis Access Programme should be considered. Reliance on opioid based medicines is not desirable

Calls on the Government to-

Establish an effective and sustainable model of care to diagnose, manage and treat fibromyalgia.

The ending of prescription charges.
Reduce/remove the monthly limit on the cost of medications for non-medical card holders.

Develop a model of care based on international best practice.
Implement a strategy to set up a framework where those living with fibromyalgia and myalgic encephalomyelitis (ME) are clearly recognised.

Conduct a review of the long term illness scheme – it has not been updated since 1970 (49 years).

Carry out a dedicated and rigorous review of the underlying causes of the condition.

Roll out a comprehensive education programme for those working in social welfare dealing with people with chronic pain of all types"

Lets keep emailing our TD's, along with the template in the previous updates. Feel free to add your own personal story if you wish :). You can find you TD'S in the following link below: https://www.whoismytd.com/

******************Announcement 2************************

Reduced prescription charges and further access to free GP care will benefit hundreds of thousands of people under Budget measures which take effect this week. Read more to find out below.... https://www.irishexaminer.com/breakingnews/ireland/increases-in-state-benefits-come-into-effect-this-week-913235.html?fbclid=IwAR0kjZj_SBCUz0iq9DLVNiMff8q58P2iO8G1Q9zARZBlGHAkTFP2g2KYkUo

Have an enjoyable day in this "finally Spring" day!