Comment: A Continuing Saga of Ineptitude - 2021
If the welfare of patients was a prime consideration for NICE when discussing the plans to issue new guidelines for ME then their performance would be considered monumentally negligent by any independent observer.
The anxiety that NICE continues to cause in its non-transparent and unprofessional actions directly affects the health of those patients and carers who still hold on to some semblance of hope that new guidelines might deliver a better future.
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 [1], they spend years and many hundreds of thousands (millions?) of pounds in creating a draft set of guidelines for stakeholders to comment [2].
Then they analyse the comments, decide on what changes they will make to the guidelines and then set a date for a set of final guidelines to be published [3].
Then they alter that date, without consultation, to another date some four months into the future [4].
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} [5].
They do not respond to IiMER’s letters [6] demanding their immediate publication.
Then, ten days after pausing the guidelines publication, they unilaterally decide to set up a roundtable of stakeholders (selected by them) to discuss the guidelines [7].
We do not know how many of their own guidelines development rules they have breached in their actions.
We can surmise that they are influenced by external forces that do not have the welfare of patients primarily in mind.
Now, when many stakeholders (not to mention the wider community of patients and carers) are left in the dark about intent, NICE are planning between themselves and their chosen partners what course of action is to be taken.
As we wrote when the guidelines working group was set up in 2018 [1]
So what will happen now with the NICE “balance” of working group members?
There are three ways this may likely go.
Those who finally make up the working group and seen to have an affinity to ME and to patients and with no vested interests of their own will argue for CBT and GET to be removed. And the BPS-side will either argue against or walk away.
Or the BPS-dominated influences in the establishment will protect their previous work by ensuring CBT is kept (with an attempt to retain GET) – and then anyone with any loyalty to people with ME and their families will have a duty to walk away.
Or thirdly, an almighty fudge is made with everyone looking to protect their own reputations and a muddle of guidelines is produced which will be ineffective for another five years and continue to pit patient against doctor - a lamentable achievement of the existing NICE guidelines.
We ended the article with this -
Two years will go by where dangerous recommendations of CBT and GET are kept, causing untold havoc.
And at the end? A lost opportunity?
What a mess!
A prescient comment.
Meanwhile, during all of these years of this review, damaging guidelines have been left in place.
IiMER were the first and only organisation to call for a health warning to be added as an addendum to the existing guidelines if they were to be retained (though some later seem to have followed our request).
In our letters to NICE Guidelines Director Professor Mark Baker in 2018 we called for CBT and GET to be removed immediately before the review was to take place – or for this addendum to be added immediately.
To ignore completely the evidence that is in front of you makes you directly responsible for any harmful effects administered by practitioners of CBT and/or GET following referral by any doctor who follows NICE guidance.
Whilst you may be providing cover for establishment organisations and individuals, you are not protecting patients – surely that should be your overarching concern.
What you must do, at the minimum we feel, is to issue an addendum to the existing NICE guidelines which states that not only are patients wanting to remove the recommendations for use of CBT and GET for ME but also that the USA agencies have removed CBT and GET from their recommendations. This will not only give some protection for your own liability but you could actually be saving lives.
This request was declined - for reasons that bore no logic but had all the hallmarks of appeasing the establishment entities who have controlled the way ME is treated in the UK for decades.
We await for what will transpire. Already we see some saying that they have already discussed with NICE directly – so much for transparency and fairness.
It seems ironic that the only certain recommendation to come out of a review of guidelines would be the call for a review of NICE’s operations and impartiality.
