Hi , would you please consider including in your submission for NICE scope , that Delphi Consensus methodology should not be used again , and that all recommendations should be evidence based ?
It was not part of NICE development methodology , and was piloted in the 2007 guideline development .
It enabled GET to be recommended for kids and elements of GET for severe despite , no evidence , and other lifestyle recommendations like sleep restriction , managing PEM by trying to maintain exercise ect , and use of antidepressants , as well as Activity Management , (planned increases in all activity including exercise) , which shares similarities with GET , when there was no evidence (NICE pg 252 ).
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MEadvocacy is US based and focus is on bringing about change in US government policy for people with ME who have been neglected in the past due to improper criteria.
We understand the dangers of pushing for gradually increasing exercise in these patients. MEadvocacy understands that what happens in the US does affect everyone around the world.
I hope others who are involved in the NICE submissions will clearly show that experts in the field have defined ME as a severely debilitating neurological and immunological disease and that any treatments that exacerbate these patients should be stopped.