Sarah Lewis

“Despite ME having received some more recent attention, the provision of ME services around the country remains inconsistent. I understand that there are still areas where there is no provision. The evidence revealed that a very important first stage for ME sufferers is that they receive a diagnosis and validation for their severe symptoms. Without provision of a service, there remains a risk that this will not occur. I was told that there is still a belief by some that ME is not real and this has”

“Historically, there has been little research into ME. As a result of this, nobody knows what causes it, and there is therefore no cure. Whilst I note there has been a small investment recently in research, I was told that this is not enough, and that a perception remains about ME not being real. The resultant effect is that some ME sufferers have no hope that their symptoms will ever improve.”

“Other professionals do not understand ME, what it is or the symptoms it causes. This can be a barrier to those with ME receiving support, or accessing care/treatment they need. A hospital passport is now being utilised at North Bristol, which assists sufferers. However, it is not clear that this is being used in all areas, and there remains a lack of understanding about ME. Education and training about this has not been prioritised.”

“NICE issued update guidance relatively recently but it is not clear whether this has been fully considered or implemented by commissioning bodies around the country.”