Thread by @ValeriEliotSmit

Thread on @NICEComms decision of 17 August to pause publication of new guideline on "ME/CFS". This thread sets out my view on current legal position.

Like all public bodies, @NICEComms has a wide discretion in how it operates. However, when the decision to pause was made, the process had been completed, signed off and the final document had been distributed to stakeholders.

Thus far, @NICEComms has failed to provide any evidence of exceptional circumstances in order to justify or clarify its decision.

Media reports suggest that external interference at the 11th hour caused the decision to pause publication of the guideline. Publication had already been delayed by 4 months for full and final consideration therefore this is not a valid reason.

On 27 August @NICEComms released a statement proposing a roundtable meeting in September "to better understand the issues raised and determine how it can gain support for the guideline to ensure effective implementation".

The process of updating the guideline commenced in 2017. It had already been delayed several times. By this stage, this explanation is therefore not credible and the process has lost its legitimacy.

Stakeholders who participate in the proposed roundtable meeting run the risk of legitimising a process which now lacks legitimacy as a sole and direct result of the actions of @NICEComms .

At this point #ME orgs should as a precautionary measure be seeking independent legal advice before deciding further action. This advice should include possibility of commencing judicial review (JR) of @NICEComms decision of 17 August to pause publication. TIME IS OF THE ESSENCE.

JR proceedings must be commenced within 3 months of the date of the decision in question. @NICEComms anounced its decision to pause publication on 17 August therefore time runs out on 16 November 2021. By the time the roundtable meeting has taken place, time will be running out.

Last week, I was involved, by invitation, in a group email conversation with senior reps of the #ME community. On 25 August that conversation ceased abruptly without the courtesy of any explanation to me. Hence this thread.
END OF THREAD.

ADDITION to thread to address concerns about reprisals against stakeholders who decide not to engage in roundtable meeting:

This situation has come about because of an error by @NICEComms . It is not as a result of any action by #ME patient community stakeholders. It is therefore for NICE to correct its error, not the #ME community.

If @NICEComms chose to exclude already recognised legitimate stakeholders from any future part in the process, then that would compound its initial error, be acting in bad faith and would be unlikely to survive legal scrutiny.

As I said in a recent blog post:
"If NICE is planning to open up a new consultation process on its guideline for “ME/CFS” then it must clarify its position immediately and communicate this with full transparency to stakeholders and the general public.....

.....If NICE fails to provide this information, then this amounts to a breach of its duty to properly exercise its statutory functions.
If there is no proposed plan, then NICE should publish the new guideline of its own volition without further delay." valerieeliotsmith.com/2021/08/25/upd…

So - what is the purpose of the roundtable meeting?

According to the ME Association: "Representatives from stakeholders - which includes both MEA and ForwardME - will be invited to this roundtable meeting". Invited by @NICEComms ? How will that process be transparent and inclusionary? And an "independent chair"? Appointed by whom?

@NICEComms is no longer an independent body in this guideline review process. NICE sacrificed its independence when it capitulated to external interference. This means that the whole process is now flawed.