Cfs m.e.

Hi i wouldlike to know if anyone else has cfs syndrome severely and has been seeing a specislist for it. I have seen one in the past at a cfs hospital clinic nhs. Ilive near bristol. But i was told that they couldnt keep seeing me after a while of going. But i want to go back again now after a while for further support. As my cfs has got worse. I also want some support with letters for my next next medical coming up next year. Can anyone respond to let me know if they went back again attended after having a. Long time away from the clinic. They seem to have staff shortages for reatendence. The problem is i still want a updated letterof support for my medical. Any answers i appreciate thanks. Nicky.

Hi
Its quite normal to be referred back to your GP after attending a CFS clinic for 6 months or more, simply for the reason they are limited on what they can do once the diagnosis has been made and they have given you CBT and sorted any pain prescription. Its then down to your GP to continue your treatment.
As you state your CFS has got worst over the years you could speak to your GP and see if they will request you to be seen by the CFS clinic again for a fresh assessment.
I was quite lucky in obtaining a letter from my consultant at the time which informed the DWP that my condition would be long term as I had many relapses trying to fight the condition, I do recall the consultant saying that if I needed help in the future the door was always opened.
Its worth giving it a try you may need to do a fresh set of blood test again to rule out any underlining problems that you may not be aware of before they refer you again.

Hi I also have severe ME and had a while without seeing anyone from ME/CFS clinic. I went back to my GP & had some blood tests and he re referred me. I mainly have telephone appointments as unable to get there as it’s over an hour away, but she does also come to see me. She did me a supporting letter when I transferred from IB to ESA and DLA to PIP 3 years ago, but when I asked her at the beginning of this year for a supporting letter for my PIP reassessment she said that she wasn’t allowed to do them anymore. I’m not sure if this is just in my area (Norfolk) or not.