NICE Guidelines Consultation – Misinformed Or Cynical ?



From Invest in ME Research.


The NICE decision “to not update the NICE guideline on chronic fatigue syndrome/myalgic encephalomyelitis” at this time seems to be an error of judgement based on misinformation. That is clearly so.

Yet on delving deeper one begins to see something more from what must have been a pre-determined decision made some while ago.

Their decision to bring forward a review to this summer, when many are away on holiday, when parliament is recessed and with only two weeks for patient organisations to be able to respond is, frankly, a cynical attempt to keep ME buried in the world of Biopschosocial (BPS) fantasy – as a prelude to submerging it into a swamp of Multiple Unexplained Symptoms (MUS) and Functional Neurological Disorders (FND).

The NICE review document has clearly been dominated by BPS proponents and NICE may feel themselves secure enough to use the crock of anonymity for their “Topic Experts” who have decided that ME patients’ lives are worth nothing.

It should not escape notice that the number of papers springing up to justify CBT and GET for ME, and the NICE reliance on the already disastrous FITNET and thoroughly discredited PACE Trial, is being used to hurry through a biased review by the Cochrane group – all ahead of possible good news coming next year of the Norwegian Phase III rituximab trial.

By burying guidelines for ME for another 3-5 years it maintains the BPS influence and stranglehold on ME – a tactic employed by numerous false MRC “expert panels”, apathetic Chief Medical Officers and a corrupted DoH view of ME over the last decade.

And sneakingly introducing FDN, in order to pave a way to MUS clinics that seem to be opening and including ME/CFS in those, is a cynical move from another establishment organisation that cannot be trusted.

Transparency and the welfare of patients seem not to be priorities.

The NICE surveillance proposal for guidelines for CFS/ME cannot be seen in isolation but as part of a corrupted healthcare system dominated by forces which, as yet, seem to be unanswerable to anyone.
Invest in ME Research submitted an 8000 word response to the consultation review.

Having read the whole document it became clear to us that there was little point in being nice to NICE or to give support to organisations such as cmrc & MEGA that seem to us to have been set up to delay any real progress and keep people busy and forever hopeful.

We prefer to say it straight and not play along the silly establishment games which merely maintain the healthcare scandal typified by the PACE Trial, embellish the egos and careers of some commentators and keep patients in the scandalous status-quo.


Read our submission to NICE here

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