Notes for NICE Stakeholders Part 1


Notes for Stake holder Meeting Jan 16 2018
1.NICE must affirm that they accept ME is not caused by wrong thought, wrong belief or is an emotional disorder.
2.NICE must produce an appropriate, biomedical not psychosocial Guideline for Myalgic Encephalomyelitis .
3.NICE must abandon the psychosocial paradigm and the CBT/GET and graded activity management treatment pathways.
4.NICE must ensure that any vested interests of members, for example, links with the Medical Insurance Industry, are fully declared.
5.NICE must ensure that the Guideline Development Committee comprises biomedical clinical expertise.
6.NICE must consider the health benefits, side effects and risks of any proposed interventions , when formulating recommendations; last time they were excluded from consideration and / or ignored.
7.NICE must ensure that the Systematic Review of Evidence will not exclude biomedical publications this time; over 7000 published papers, which were excluded last time.
8.NICE must ensure there is specific identification and recognition of all symptoms including the most severe symptoms associated with ME and that they offer specific guidance on how to care safely for people with ME, especially the most ill, who are at tremendous risk of harm.
9.NICE must ensure that the opinions and expertise of people with ME and their carers, who almost uniformly reject the CBT/GET model upon which CG53 is currently formulated, are fully taken into account.
10.NICE must honour in full the WHO 10 G93.3 classification, this means a commitment to a clinical pathway that should include biomedical markers and biomedical tests, similar in depth and seriousness to other rare disease and neurological diseases, for example tests for muscle function, SPECT and PECT scans and other medical investigations, if tolerable.
Greg Crowhurst January 2018


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