Keeping the Pretence Going

In the same week that Dr Anthony Fauci, Director of the USA National Institute of Allergy and Infectious Diseases and a member of the US government's Coronavirus Task Force, made this statement -

"'s extraordinary how many people have a postviral syndrome that's very strikingly similar to myalgic encephalomyelitis/chronic fatigue syndrome."

then we saw NICE - The National Institute for Health and Care Excellence - issuing this bizarre statement -

NICE - Statement about graded exercise therapy in the context of COVID-19

NICE is aware of concerns about graded exercise therapy (GET) for people who are recovering from COVID-19. NICE’s guideline on ME/CFS (CG53) was published in 2007, many years before the current pandemic and it should not be assumed that the recommendations apply to people with fatigue following COVID-19. The recommendations on graded exercise therapy in CG53 only apply to people with a diagnosis of ME/CFS as part of specialist care, and CG53 is clear that this should be part of an individualised, person-centred programme of care, with GET only recommended for people with mild to moderate symptoms.

As the guideline is currently being updated, it is possible that these recommendations may change. The evidence for and against graded exercise therapy is one of the important issues the guideline committee is considering. NICE plans to consult on the updated guidance in November 2020.

NHS England has recently published guidance on After-care needs of inpatients recovering from COVID-19 that includes advice on fatigue.

July 2020

Apparently, the recommendations on graded exercise therapy in CG53 only apply to people with a diagnosis of ME/CFS

Nothing should surprise anyone about NICE and its behaviour toward ME.

Their controversial guidelines were rejected by patients and (most) charities when finally published in 2007 (after being taken to a judicial review by ME patients).

They produced a derisory response to requests from patients and this charity to perform a full review of the guidelines in 2017 [1].

They only reluctantly agreed in 2018 to review the guidelines IiMER response [2].

Then we witnessed their shambolic creation of a review committee [NICE GUIDELINES DEVELOPMENT - Turning a farce into a shambles[ 3]. that was determined to create an unnecessary "balance" of viewpoints.
It allowed participation in the committee by some after background lobbying - all away from the eye of the public and patients.

No surprise that this charity has no confidence in NICE or its present review committee.

Unwilling to sweep away the years of failure regarding ME they now bend credibility by advising against using graded exercise therapy (GET) for patients recovering from COVID-19 - while maintaining flawed guidelines for ME that retain this dangerous recommendation for ME patients.

The hypocrisy of this situation provides a flimsy cover for ineptitude and the distortion of reality from NICE's latest statement from NICE would make even Donald Trump envious.

An establishment organisation that is supposed "improve outcomes for people using the NHS and other public health and social care services" instead distances itself from correcting previous flaws in its policies and guidelines by advising on one rule for COVID-19 patients and one, deleterious rule for ME patients.

They have been found out by patients and taken to court - yet still play gatekeepers for this engrained establishment bias that prohibits acknowledgement for the failures in their policies from past years.

While some are hoping that the COVID-19 pandemic might accelerate acceptance of ME and remove the stigma, misinformation and mistreatment of ME patients so NICE seem intent on continuing to make ME patients second class citizens - accepting the reality of COVID-19 but ignoring the long standing grievances of ME patients.
One might just call it discrimination.

It begs the questions - who is really controlling NICE policy? Who are they meant to be protecting?

In extensive correspondence with NICE director of guidelines Professor Mark Baker [4] it became clearly evident that the NICE position on GET was untenable.

The guidelines ought to benefit patients not the careers of some.
Professor Baker admitted that the guidelines are unpopular with patients - even unfit for purpose.

Professor Baker stated that the existing guidance is carefully worded with nuances - and an implication that doctors are somehow not only aware of the nuances but are also understanding them.
This ludicrous situtation continues with the incomprehensible statement that COVID-19 patients should not have GET prescribed but that it is quite fine for ME patients to be the guinea pigs for the pyschosocial lobby that still pervades UK healthcare.

We requested that NICE remove CBT and GET as recommendations for ME - immediately.
NICE refused.

We have stated it is illogical, and harmful to patients, that NICE retain the existing guidelines when it is admitted they are not fit for purpose, are not what patients want and will be discarded in any case.
We have stated that there is no rational reason to maintain the existing guidelines if they do harm and that, at the very least, NICE must follow what USA have done and remove recommendations for using CBT and GET as treatments for ME with an addendum to the existing guidelines.
We have requested that this addendum is communicated to other healthcare agencies around the world who have misguidedly used the existing NICE guidelines as any basis for their own treatment of ME patients.
NICE refused.

Professor Baker wrote to us that NICE “will discuss at the highest level at NICE what remedial action to help patients we can take in the meantime.”
Nothing happened.

As we summarised in our earlier article NICE, and those deciding on the future for people with ME, must be held accountable if more people are harmed by retaining the existing damaging recommendations for using CBT and GET.

NICE had a chance to help people with ME by using the logic of treatment of COVID-19 patients and revising immediately their recommendations of GET and CBT for ME. They failed again and instead issued another negligent statement.

The public rightly criticise government failings in handling COVID-19 - they must be held accountable.
No such requirement seems to prevail for NICE.


Last Update 23/07/2020