Binkie4
Senior Member (Voting Rights)
We would have a problem with BACME staff digging in harder because their skills would lose value and they lose the work they have been doing comfortably for many, many years. They appear very well organised too with new proposals printed and coming out on the day in August that the NICE guidelines were due to report. We discussed this on another thread.
This is not a reason not to try to improve ME/CFS treatment or adopt a different model just a recognition of how difficult BACME are going to be to displace. I think they were underestimated. We were focussed on NI CE guidelines while they were getting their 'ducks in a row' for the next stage. I'm not sure of the exact date they got into bed ( so to speak) with the MEA, or the other way round but I occasionally scan the local service where I was treated in Dr Bansal's day, (no physiotherapists then), and I was amazed when I saw logos for both the MEA and BACME on the paperwork. I didn't record the date unfortunately. BACME are really quite active. They have taken up the issue of tube feeding in ME/CFS thus beginning to prepare themselves for working with the very severe and have carried out a survey. See below, taken from the local service paperwork.
Click on the link below to read more about it.
The survey has now closed and the results are being compiled into a report which will be published on the BACME website.
ME/CFS Tube Feeding Survey
With their Green political connections and support, they are really going to be difficult to dislodge.
I hope Charles is well. We seem to have been hearing more from Russell lately. I think he may now be working full time for the MEA?
This is not a reason not to try to improve ME/CFS treatment or adopt a different model just a recognition of how difficult BACME are going to be to displace. I think they were underestimated. We were focussed on NI CE guidelines while they were getting their 'ducks in a row' for the next stage. I'm not sure of the exact date they got into bed ( so to speak) with the MEA, or the other way round but I occasionally scan the local service where I was treated in Dr Bansal's day, (no physiotherapists then), and I was amazed when I saw logos for both the MEA and BACME on the paperwork. I didn't record the date unfortunately. BACME are really quite active. They have taken up the issue of tube feeding in ME/CFS thus beginning to prepare themselves for working with the very severe and have carried out a survey. See below, taken from the local service paperwork.
ME/CFS TUBE FEEDING SURVEY
BACME are currently conducting a survey exploring the experience of people living with ME/CFS in the UK who have required tube feeding at some point in their illness.Click on the link below to read more about it.
The survey has now closed and the results are being compiled into a report which will be published on the BACME website.
ME/CFS Tube Feeding Survey
With their Green political connections and support, they are really going to be difficult to dislodge.
I hope Charles is well. We seem to have been hearing more from Russell lately. I think he may now be working full time for the MEA?
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