Credit: Broken Battery
We are pleased to see that the Welsh Senedd has voted in favour of Adam Price MS' motion, bringing much-needed attention and focus on the impact of severe and very severe ME, and the urgent changes to available care, support, and research funding that are required.
The motion proposed that the Senedd:
1. Notes that myalgic encephalomyelitis (ME) is a chronic and disabling illness at all levels of severity.
2. Notes that of those suffering from ME, 25 per cent are categorised by NICE as 'severe: mainly bed bound or housebound', and 'very severe: fully bedbound', requiring full-time care and, in the severest cases, palliative care and tube feeding.
3. Regrets that it is often those with the greatest severity levels of ME who are provided with the least amount of appropriate care and treatment.
4. Calls on the Welsh Government to:
a) respond to the concerns raised in the Coroner in England’s Prevention of Future Deaths Report, and explain what practical steps they will take to ensure that no patient in Wales will ever be placed in such tragic circumstances as those described in the report;
b) ensure that the Adferiad-funded ME services are making provision appropriate to the needs of patients with severe and very severe ME;
c) bring together an expert group of health professionals and people with lived experience, at a national level, to develop all-Wales guidance and quality standards on ME, including for the most severely affected;
d) make the appointment of an all-Wales specialist consultant for post-infectious chronic conditions - including ME and Long Covid - a priority;
e) improve the training on ME for professionals, firstly in the NHS, but also in social services and schools: in particular, raising awareness of the care needs of adults and children with severe and very severe ME; and
f) ensure that health boards truly co-produce their ME and Long Covid Adferiad services, taking into account the lived experiences of those suffering at the severest levels and of those caring for them.
Jeremy Miles MS (Welsh Labour Party, Neath), Cabinet Secretary for Health and Social Care acknowledged the shortcomings and described people with ME as having been "overlooked".
He also thanked Members for raising ME and recognised it as a complex, often invisible condition. He said Adferiad services, initially developed for long Covid, have been expanded to support people with ME, but acknowledged that more needs to be done, particularly for severe cases.
He confirmed that officials would engage with Professor David Price and UK partners on DecodeME-related research opportunities and consider an all-Wales specialist role, a national expert group, and new standards.
Concluding the debate, Adam said:
"If our politics is to mean anything, if this place is to mean anything, it's surely that those with the least power, at times in their lives the least energy, sometimes the least ability to speak for themselves, that we recognise them and their needs, and their need for us to care for them collectively as a society..above all, I hope that (patient name) and all the other families, and all those following this debate from darkened rooms, look back on today, they will be able to say, ‘That was when Wales began to see us, to understand us and to act’.”
We'd like to say a huge thank you to everyone who helped make this debate a possibility and to the MS' who attended and spoke at the debate.
A special thank you to Adam Price MS for his continued commitment to the ME community, and to Severe ME Difrifol Cymru, for supporting Adam so well and championing the voices of those who are severely and very severely affected.
