Dame Sally Davies, the Chief Medical Officer for England, today responded to our petition – supported by over 15,000 people – calling on the National Institute for Care and Clinical Excellence (NICE) to completely review and update its guideline on ME/CFS.
Though not able to intervene personally, Dame Sally said she was “confident that NICE will take the comments it has received from stakeholders in response to its recent consultation fully into account in reaching a final decision.”
She also confirmed that we would hear a final decision from NICE in mid October. We will continue to monitor the situation and report any further developments.
A disappointing response IMO.
One has to wonder what the point of the post of Chief Medical Officer is, if they allow themselves to be so hamstrung by polite deference, that they dare not intervene in such circumstances as these, even when implored by so many people to do so.
However, whilst this is her official / publicly stated response, hopefully, back-channel discussions will take place and she will help to persuade NICE that they must change course.
“NICE is an independent body responsible for developing robust, evidence based, best practice guidance for the NHS”
If NICE fail in their responsibility to do the above by; ignoring the fact that previously trusted ‘evidence’, which is used to formulate NICE guidelines, which is then proven to be contradictory/fraudulent to reality/truth and actually means that the subsequent NICE guidelines formulated actually cause considerable harm and disability, and then fail to adjust these NICE guidelines at the first routine opportunity, …..
(despite the argument that, by such NICE guidelines causing harm, there must surely be requirements in their own remit to have already reviewed said harmful guidelines at the earliest/first opportunity, and if not, why is there not such a requirement as this would make NICE an organisation unfit for purpose if it can cause harm, continue to cause harm when there are even doubts as to the safety of its own guidelines)
…. to whom are NICE responsible to and who has the authority/responsibility to ensure that their (NICE’s) mistake is rectified, compensated for and the individuals who failed in their responsibilities re-educated, ‘re-employed’ or removed and penalised?
Clearly the Chief Medical Officer has indicated that oversight of NICE is not her responsibility. Who has the responsibility of Overseeing NICE? If the answer is ‘no-one’ then who can influence NICE to do the right course of action? If the answer is no-one, then does a class action litigation aim at NICE as a body or simply the individuals involved in the advice/decisions leading to the harm caused?
If, as seems to be likely, NICE try to bury their head in the sand over the harm that their current guidelines are causing, litigation and naming of individuals ultimately responsible may be the only way of preventing further harm, with just the side-effect of seeking compensation for those injured and abused. Would the ME Association be prepared to coordinate the raising of funds for a class action litigation if NICE (and anyone responsible for overseeing their discharging of their responsibilities) fails to change their guidelines based on robust evidence that their current guidelines are misleading and harmful to sufferers of ME by misguiding medical practitioners into recommending or prescribing ineffectual or harmful and debilitating activities or treatments?