Radio Interview -Talking about Myalgic Encephalomyelitis (ME)

ME - 'a condition that is often misunderstood'

Recently ME Advocates Ireland (MEAI) were contacted and invited to talk about Myalgic Encephalomyelitis (ME) by a local radio station in Castlebar, Co Mayo. Christine Fenton, one of our members, offered to do the interview and she chatted with Angela Faull on Thursday morning, 10th of January on CRCfm about ME in general and about her own illness.

The presenter was well aware that ME is a condition often misunderstood and recalled reading a book about an American doctor who had a role in teaching and helping people suffering from AIDS, and 'who found it more difficult to sustain her ME patients than it was to sustain her AIDS patients'.

Christine talked about the cardinal feature of ME, Post Exertional Neuroimmune Exhaustion (PENE), which can be caused by any amount of physical or mental activity, eg having a shower, talking on the phone.

Christine highlighted the lack of support for ME patients in Ireland especially from the HSE, despite a recent recommendation from a report from the HSE to set up a working group to bring about guidelines.

She referred to mixed attitudes among HSE personnel where she has met staff who want to do their best but she has also met other staff who are totally dismissive.

 'There is no culture in the HSE that understands it [ME]'. 

Here is the link to the complete interview below.

https://youtu.be/KMzPi_MNSEI

Compiled by MD