Legitimising the Omnishambles
Still no replies or response to the questions that Invest in ME Research posed to NICE following the abrupt and unprincipled
pausing of the final guidelines just hours before the due date for publication.
This demonstrates the continuing disregard from NICE for instituting any semblance of excellence for patients' health or care. .
Instead, they pander to establishment forces that are unhappy with any attempt at removal or downplaying of the biopsychosocial gravy train of "treatments" that were forced onto patients by the 2007 CG53 guidelines..
Careers and egos and influence are the order of the day - patients can take a back seat!
Following the disingenuous pause in the planned publication of the final guidelines documents NICE has organised a roundtable for their chosen, favoured interested parties - those who want to force their demands on the final outcome and those who are invited because they will readily comply and wish to be viewed as the sole representatives of NICE's' perception of the patient community.
Meanwhile, with the date for this secret roundtable being changed again in order to draw out the proceedings even further, most registered guidelines stakeholders remain oblivious to what is going on and patients become concerned and weary due to anxiety of these manipulations.
But no matter.
After all, the only thing that the establishment wants is compliance with their demands, after "reasonable discussion", of course!!
There are, of course, always those who are only too happy to attain or retain their actual or perceived status as "representatives" and who willingly sign gagging orders to prevent any information leaking out.
By integrating interested parties as "representatives" from the patient community into their workings for this stratagem then all discussions are closed down and a veil of patient acceptance is pulled over any serious attempt for explanation.
No debates are possible, no information is given.
NICE can bide its time with piecemeal tidbits of information delivered via its new network of compliance.
No need for registered stakeholders to learn of what is happening, let alone patients being informed.
An insidious de facto process takes its course.
Yet why is this needed - or accepted?
There is no reason to provide NICE with any legitimacy for this fabricated roundtable meeting by going along with it and giving it support by default.
Patients do not have to support this forced imposition of compliance.
The NICE final guidelines may not be what IiMER believe they should be - as we wrote when examining the draft guidelines in December 2020 
The final guidelines would show the lack of any policy to deal with ME over the last fourteen years  since the 2007 CG53 guidelines were published.
Yet even this summary of the guidelines from December 2020 risks being watered down even further by an illicit roundtable convened for just the chosen few without any real justification.
The guidelines process was performed, an attempt to create an evidence base was made, comments on a draft guidelines document were made and processed and the final guidelines were given a date for publication.
Due process was followed according to NICE's own regulations and whichever side of the NICE "balance" is satisfied or dissatisfied is something that would need to be dealt with after publication.
If NICE were truly standing up for patients then all they would need to have done is publish the guidelines on the date chosen.
No need for delay, no need for secret roundtables to discuss with those who will not change despite the human wreckage their ideologies and vested interests leave behind.
But no - instead we have guidelines by stealth.
Nobody should legitimise further manipulation, fudging and double-dealing involving "interested parties" seemingly only representing themselves.
Patients might be well advised not to give their blind trust to any group involved in secret meetings with no transparency of what is really happening.
the promise from the NICE CEO that she would reply fully to our emails is abrogated,
our questions to NICE remain unanswered [https://www.investinme.org/Letter-to-NICE-Sep2021.shtml#q],
the existing guidelines with flawed recommendations remain in place without any warnings as IiMER requested,
and patients are ignored and allowed to experience more uncertainty, dismay and even anxiety.