A Mid-Sussex charity is campaigning for health watchdog NICE to provide more drug-based treatments for people with ME and Chronic Fatigue Syndrome (CFS).
reMEmber, based in Hassocks, is calling for a nationwide review of NICE’s guidance into treatments for CFS/ME provision.
The charity also claims there needs to be more training for doctors and more specialists.
However, NICE have said it is unlikely current recommendations will change.
Director of the charity, Janice Kent said:
“What we are doing, is asking for a review of the NICE guidance.
“There are very few expert doctors now, because in the NICE guidance it hasn’t said anything about consultant physicians, it’s only given sort of rehab treatment which can be very useful.
“It’s not that we are just saying that that [rehab treatment] isn’t any use, what we’re saying is it isn’t enough.
“We need input from expert doctors, and the more expert doctors that see patients the more information is revealed, because a hospital consultant can prescribe drugs that will help with symptoms, that general practitioners can’t prescribe.”
NICE said it has consulted on a proposal not to update its current guidance on the diagnosis and management of CFS and ME.
A spokesperson from NICE said:
“We have looked at all the new evidence that has become available since our original guideline on the diagnosis and management of CFS/ME was published in 2007.
“All of the evidence identified either supports the guideline recommendations or does not suggest it would have any impact on them.
“On balance, NICE feels new evidence is unlikely to change the direction of current recommendations at this time, although ongoing research means that the guideline should be removed from the static list.”
reMEmber is one of several other ME charities which form the Forward-ME group.