Kitty
Senior Member (Voting Rights)
As we don't yet have much on which to base a big high profile research study, I'd like the APPG to push for the basic groundwork on ME/CFS to be done.
We don't know:
How can we plan health and social care provision with gaps like this? If a disease modifying treatment came along that couldn't be delivered in primary care, how would we manage it? If we're looking at the bald economics, where does ME/CFS sit on the list of healthcare concerns that force young people out of work for good, leave a proportion of them dependent on benefits, and mean they're unable to fulfil other economically important roles like caring for parents in old age?
We don't know:
- how many people have ME/CFS;
- what proportion of those who develop post-infection syndromes are still affected two and five years later;
- what effect Covid-19 has had on the numbers of people with ME/CFS;
- what proportion of patients are able to maintain long term employment;
- how many have a relapsing/remitting pattern, how many have symptoms that fluctuate but rarely get drastically worse or better, and how many have gradual decline;
- whether there is a group that recovers after more than five years of illness;
- what proportion need aids and adaptations;
- what proportion need some carer support;
- how many severely affected people there are across the four nations, who might be at risk of needing significant care if something tipped them into the very severe category;
- what the economic costs are of ME/CFS.
How can we plan health and social care provision with gaps like this? If a disease modifying treatment came along that couldn't be delivered in primary care, how would we manage it? If we're looking at the bald economics, where does ME/CFS sit on the list of healthcare concerns that force young people out of work for good, leave a proportion of them dependent on benefits, and mean they're unable to fulfil other economically important roles like caring for parents in old age?
