Severe & very severe ME in Wales
Rob Messenger’s son, Cerith, has very severe ME. His local Senedd Member has offered to bid for a debate in the Senedd to raise concerns with the Health Minister about the lack of provision for people with severe and very severe ME.
We want to find out how many people in Wales are at this level of severity, understand their lived experiences, and work with the Welsh Government and the NHS to develop appropriate provision which can properly meet their needs.
If you have severe or very severe ME, or you are caring for someone who has, Rob would like you to get in touch. Please contact him by email at robertmessenger@btinternet.com
The NICE Guideline says:
- People with severe ME/CFS are unable to do any activity for themselves or can carry out minimal daily tasks only (such as face washing or cleaning teeth). They have severe cognitive difficulties and may depend on a wheelchair for mobility. They are often unable to leave the house or have a severe and prolonged after-effect if they do so. They may also spend most of their time in bed and are often extremely sensitive to light and sound.
- People with very severe ME/CFS are in bed all day and dependent on care. They need help with personal hygiene and eating, and are very sensitive to sensory stimuli. Some people may not be able to swallow and may need to be tube fed.
See also
WAMES call for safe hospital care for severe ME in Wales
ME Voices Wales – have your say!
In my opinion, The NICE definition is going to reduce the impact of this as it uses a restrictive & unreflective definition that will reduce the numbers identifying as severe, which will keep it seen and treated as a small minority they can continue to fail.
The NICE guidelines uses overly restrictive criteria which doesn’t reflect the reality of those housebound. It distorts the 1998 Findley/cox (Wessely reverential) paper by taking its very severe m.e description – “unable to do anything for themselves” which was how it was also placed in the CMO Report of 2002 & instead puts it as the opening statement for severe m.e , with minimal activity presented as exceptions. Even in the ancient Findley cox grading scale, the examples of activity for severe ME are Too minimal / limited. yet have been copied and pasted over decades, why?
Thanks Kerry – I appreciate your comments.
I agree that “unable to do anything for themselves” is too restrictive, at least as an opening descriptor for ‘severe ME’. Perhaps, “can carry out minimal daily tasks only” should come first in that sentence, followed by “..and at times may be unable….”
I quoted it because it is what NICE says, and for simplicity’s sake. The intro to that section of the Guideline says that “Definitions of severity are not clear cut because individual symptoms vary widely in severity and people may have some symptoms more severely than others. The definitions…provide a guide to the level of impact of symptoms on everyday functioning”.
The way I see it is that these brief descriptors can only be a roughish guide. They are imperfect, for sure. Yet, I’ve found them very useful – in introducing professionals to just how debilitating ME can be across all severity levels, and in discussions with people with ME (who don’t usually fit neatly into one severity level).
There’s another issue! An illness which forces people to relinquish all social activities in order to remain in work/education, or to give up work or school completely, is described, respectively, as ‘Mild’ or ‘Moderate’!
You told me some things I didn’t know about the background to the severity level descriptors, and I’d be interested to learn more if you want to get in touch.
All the best
Rob Messenger
If anyone wants to look at the severity levels on p7/8 of the NICE Guideline NG206, here’s a link:
https://www.nice.org.uk/guidance/ng206/resources/myalgic-encephalomyelitis-or-encephalopathychronic-fatigue-syndrome-diagnosis-and-management-pdf-66143718094
Reading the NICE guidelines is making me cry. I am considerably healthier now but when I had medium to severe CFS I did not get any of that care and support. The only thing mentioned in those guidelines that I got a fraction of was CBT, and that was through Atos to be allowed to have my ESA, along with graded exercise therapy which wasn’t graded in the slightest, it was just the gym. I feel like I should be able to sue the government. They made me so much more ill than I needed to be.