The continued sparsity of information being promptly made available by NICE to all stakeholders, to patients and to the public is an ongoing indictment of the lack of transparency and integrity that has regularly been shown by UK establishment organisations that affects the lives of people with ME and their families.
As we wrote in this article -
- Firstly, it has to be remembered that NICE had to be forced into considering a review of the flawed 2007 guidelines.
- After initiating the review of existing guidelines with the botched creation of a “balanced” working group that included behind the scenes machinations, they spend years and many hundreds of thousands (millions?) of pounds in creating a draft set of guidelines for stakeholders to comment.
- Then they analyse the comments, respond to stakeholders and decide on what changes they will make to the guidelines and then set a date for a set of final guidelines to be published.
- Then they alter that date, without consultation, to another date some four months into the future [18th August] .
- Then, a matter of hours before the publication of the final guidelines, they issue a statement that they intend to pause the guidelines publication – due to “……issues raised during the pre-publication period with the final guideline, we need to take time to consider next steps. We will hold conversations with professional and patient stakeholder groups to do this.” {Note: we were not consulted} .
- They do not respond to IiMER’s letters demanding their immediate publication.
- Then, ten days after pausing the guidelines publication, they unilaterally decide to set up a roundtable in September to discuss the guidelines with organisations that they pre-select - with no explanation or comment from all stakeholders .
- Stakeholders such as Invest in ME Research are left to discover these decisions by news from social media.
- News that NICE had then moved the date of this planned roundtable to October is discovered from social media some time before NICE had written this on their website - again a chosen few seemingly knowing everything before anyone else.
The decisions by NICE are now becoming more and more farcical.
On 17 August, the day that NICE decided to inform stakeholders that they were pausing the guidelines (which were to be published on 18 August), we wrote to NICE asking if the charity was now released from all embargoes attached to the intended publication of the guidelines.
We also asked if NICE were in breach of their own regulations for producing guidelines by pausing the publication just hours before it was due.
We have received no replies.
We have written three times now to the CEO of NICE and the Director of NICE Guidelines Development.
Still no full replies to our letters to NICE and only a brief acknowledgement for the first letter, after we wrote again.
Still no news to all stakeholders of the date for the publication of the guidelines.
Still only selected "interested parties" aware of what is happening.
Still people with ME and their families are the last to know.
Surely this recent period - from the intended publication date for the guidelines of 18th until the present day - has moved this project to a status that lacks legitimacy.
NICE seem now to be stating that the publication of their final guidelines will be dependent on this roundtable that has been arranged - arranged in secret with just a few groups or individuals invited, including possibly those who have already resigned from, or were dismissed from the guidelines development process before the final guidelines were to be published.
Trust in NICE has long gone.
NICE has also lost any claim to legitimacy as it has failed to fulfill its obligations.
We can see that there are only two courses of action that are left open to those aiming to represent the interests of people with ME and their families.
Either -
Step away - refuse to participate in the proposed roundtable - current date seemingly to be 18th October (though we have not checked social media today) - due to a lack of legitimacy for the way that NICE has acted
or
Join Invest in ME Research's demand that NICE publish the agenda for the proposed roundtable and arrange for it to be open to the public so that all people with ME and their families can be certain that their voices are heard and that they are truly represented, and to all stakeholders, and all media.
The recent announcement by NICE that their Public Board meeting of 15th September is to be streamed online to the public, with the agenda already visible [click here] demonstrates that this would be no problem for them to arrange.
It is time for people with ME to step away from this recent shambles of a process - unless everything can become open and transparent and accessible to all.
Anything less than this is unacceptable.
