North Wales Assembly Member and Chair of the Assembly Cross Party Group on Neurological Conditions, Mark Isherwood, has hit out at the Leader of the House, Julie James AM, for failing to respond to his call for a Welsh Government Statement on Myalgic Encephalomyelitis or Chronic Fatigue syndrome - ME/CFS - in Wales.
In yesterday’s Business Statement, Mr Isherwood referred to a number of concerns which were raised with him three weeks ago when he hosted the showing of ‘Unrest’ in the Senedd and the discussion on behalf of ME support in Glamorgan and WAMES, the Welsh Association of ME and CFS Support in Wales, and asked for a Welsh Government Statement on the matter.
He said:
“We heard that the cost to the UK economy of these conditions is £3.5 billion per annum. We heard that WAMES is calling on the Cabinet Secretary to address as a matter of urgency the continuing need for improved access to timely diagnosis, for GPs to fully understand the symptoms of the condition, and for the development of clinical expertise in Wales, with a standardised training and awareness programme.
“Also, I saw a copy of the ME Trust 2018-21 strategy, the 'Vision into Action' paper, saying that ‘parts of the UK, such as Wales, have no specialist services’. And, finally in this context, I'd like to consider the evidence we received from Dr Nina Muirhead, not only an NHS doctor but also an academic who's currently working with Cardiff University in implementing a pilot trial, introducing ME/CFS into the medical school curriculum here, uniquely so far in the UK.
She says that she's very concerned that NICE guidelines say that graded exercise therapy, GET, and cognitive behavioural therapy, CBT, are the recommended treatments in NICE guidelines, when she says that these are causing harm, potentially, to patients and should be removed, as they have been in America by the Centers for Disease Control and Prevention.”
The Leader of the House refused to provide a Statement, stating: “The Member has done his usual very good job at highlighting the issues he wants raised all by himself, so I don't think there's any need for a supporting statement”.
Speaking outside the Chamber, Mr Isherwood blasted: “This response was disgraceful. The estimated 16,000 people in Wales with the condition, 70% of whom are women, and 10% aged under 16, will be horrified that the concerns I raised were so casually dismissed.”