Although there might not be a new treatment to add to the NICE guideline for CFS/M.E., there’s more to healthcare than cures. NICE has decided that the guideline won’t be reviewed, even though it is 10 years old. This decision has gone out to consultation for the next 2 weeks. Just as NICE decide not to review their recommendations, the Centre for Disease Control and Prevention in the US removes CBT & GET as its recommended treatments for M.E./CFS. Read more about this here
Deciding not to refresh the ten-year-old NICE guideline sends totally the wrong message to GPs, commissioners & patients. We know that so many people aren’t getting even the guideline’s general principles of care and this is a missed opportunity to improve the lives of people with the illness and stamp out the stigma we face. Even without considering new evidence for treatments, the wording is open to so much interpretation that it causes harm and doesn’t do anything to quelle any myths generalist health professionals may have acquired from the media.
Just because the tests currently available to GPs aren’t looking at the pathology doesn’t mean an illness doesn’t exist. There are many conditions without blood tests, which are diagnosed with signs and symptoms, and there are also many conditions which were falsely believed to be psychosomatic until researchers discovered the underlying pathophysiology. Interpreting all “Medically Unexplained Symptoms” as psychological is a very flawed, ignorant and prejudiced way of thinking about illness. There are pathological abnormalities detected and tests are in development. To just dismiss this fact surely shows a very heavy bias towards the psychologising of M.E., ignoring research since 2007 and giving permission for the evidenced poor care of people with M.E. to continue.
I hear every day from patients housebound with severe M.E., who have been forgotten or dismissed by their health professionals, family and friends. It is really difficult to face NICE’s decision to keep their situation exactly as it is and we must pull out all the stops to get the guideline updated and improved. Have a read of some of the heart-rending comments on the petition created by the ME Association, and please sign and share.
The petition has now closed but had 15,165 supporters.