"Education on M.E. (Myalgic Encephalomyelitis) for healthcare providers."

What happened:

I developed sudden-onset, virally induced ME in October 1999 and have never recovered, despite trying every possible means available. It remains difficult to accept, there is still no cure, effective treatment and a severe lack of education within the medical profession.

Approximately one year ago, a doctor recommended I use exercise and cognitive behavioural therapy as a ‘cure’ for M.E., without,

1. Informing me on the dangers of overexertion or explaining the cardinal and defining feature of the disease i.e. “post-exertional malaise and/or fatigue (typically delayed, for example by at least 24 hours, with slow recovery over several days) and “physical or mental exertion makes symptoms worse.” (as per NICE Guidelines)

2. Informing me GET/CBT is not a suitable approach for all ME patients (as per NICE Guidelines

3. Informing me on the use of heart rate monitoring (if diagnosed with ME) when undertaking any exercise regime. (as per NICE Guidelines)

4. Informing me the current NICE Guidelines for ME/CFS is under review and considering up to date biomedical research on the mechanisms of the disease and reports of ME patients being harmed by the current GET/CBT recommendations.

How did I feel:

I felt all the ME advocacy work I had undertaken towards ME education and awareness, has been pointless and a waste of my already severely limited energy levels. I was shocked that the same lack of knowledge in 1999, remained entrenched in 2019 and which was responsible for me unknowingly pushing myself into a more severe form of the disease, 21 years ago. I felt belittled, insulted and dismissed when told by the doctor, she knew exactly “all you’ve ever needed“ as treatment for ME is GET/CBT.

I also felt very frustrated and concerned to think newly diagnosed ME patients would also be given this same advice without caution.

However I MOST definitely want to include praise for HSCB, PHA, Northern Ireland CMO and others who are trying very hard to address this situation on behalf of myself and the estimated 7000 ME patients in N.I.