Planned Review Statement of NICE Guidelines for ME CG869

Following the astonishing decision by NICE to "pause" the release of the 2021 Guideline on the Diagnosis and Management of Myalgic Encephalomyelitis (ME or ME/CFS) - CG869 [1] then the review that Invest in ME Research was preparing had to be stalled also.

NICE has been totally lacking in transparency with this decision.

The charity has written to NICE management to complain about this action [2].

We do not yet know what course of action NICE will take regarding the CG869 guidelines.

Leading up to the planned publication of the final guidelines we had prepared a statement based on our review of the final guidelines document.
This statement was meant to precede the publication of our review and the official final documents from NICE regarding our review of the draft guidelines.

We also sought clarity from NICE as to whether we were now released from the embargo constraints for the final guidelines that applied up to 18th August.
We have received no reply.

As we have not heard from NICE and remain uncertain of what we are able to publish then we decided to modify our planned statement and create a version that is based on a scenario of what might have come out of the draft guidelines review - which we made in December 2020 [3].

Review Statement from Invest in ME Research - NICE Updated Guideline on the Diagnosis and Management of Myalgic Encephalomyelitis (ME or ME/CFS)


19 August 2021

When a national organisation that has been given responsibility for clinical excellence and care announces that a new set of guidelines for a disease is to be created, following fourteen years having passed since the last version of such guidelines was published, then it might be considered to present a great opportunity.
Indeed, Invest in ME Research campaigned for, and welcomed the review.

Here was an opportunity to evaluate new research, to document and recommend new treatments and practices, and to introduce new recommendations and guidance in order to remove flaws in the previous outdated guidelines.
After all, new research into the disease would inevitably have taken place during those fourteen years that would necessitate modification, and more effective treatments may well have become available.

It would be a damning indictment of the state of affairs regarding myalgic encephalomyelitis (ME or ME/CFS) in the UK if the likely new NICE guidelines document for this disease would do no such thing.
After reviewing the draft guidelines then we would expect that the guidelines of 2021 would likely only attempt to undo the damage done during the past 14 years.

The 2021 document would stand as a testament to fourteen years of nothing much changing, evidence of the apathy, ignorance and mendacity from government and establishment healthcare and research agencies in treating this disease -
evidence of fourteen years of failure.

The charity is disappointed, but not surprised, that it took so long to accept what some organisations such as Invest in ME Research have consistently said - that there is no reliable evidence that Cognitive Behaviour Therapy (CBT) and Graded Exercise Therapy (GET) show any benefit whatsoever for ME/CFS patients, quite the contrary.

These new guidelines should go further and avoid any lengthy discussion on physical activity or a “new type of CBT” rather than retain one flawed area of the 2007 guidelines - justifying its retention by claiming it is personalised and to be offered to those who ask for it.
There is no good evidence to justify CBT so if NICE decided that they wanted to keep it for those who wanted it...that would hardly be guidance!. They either have evidence or they do not.

The guideline should have stood by its evidence findings to allow a fresh start.
There would be plenty of work for those healthcare professionals involved in ME/CFS in correctly diagnosing and monitoring patients as well as helping out with aids and benefits instead of trying work out how to offer personalised physical activity and CBT.

The charity also would strongly object to any ridiculous special mention of the Lightning Process, a trademark [pyramid] business in any ME/CFS guidelines.
There is absolutely no point in giving any publicity to a process that was reprimanded by the Advertising Standards Authority for making unsubstantiated claims.
Any recommendation not to offer a particular alternative therapy statement should apply to them all – or should not even be mentioned in any guidelines for ME.
Treatments must be recommended based on solid evidence, not business hype or prejudiced establishment organisations and careers.

While the main guidelines document might well contain some common sense approaches and the acceptance that patients are able to refuse any “therapy” (with the implication that they should not suffer consequences from insurance companies) there would still be major question marks on how resource might become available to retrain healthcare staff – both with regard to the disease and with regard to prejudiced views of the disease that have been allowed to be maintained for so long by the lack of action from governments, research councils, chief medical officers, royal colleges and institutes of national healthcare.
Invest in  ME Research commented on this following the draft guidelines publication.

As a consequence of the draft guidelines we would see little cause for rejoicing simply because one flawed recommendation from the 2007 guidelines was finally to be removed in 2021 – especially if another was left in place. Damage and harm to patients from deleterious treatments that have no good evidence base is still not good news for patients - or for clinicians who have to deal with the consequences of poor guidance. This just continues to pit patient (informed) against clinician (directed).

Perhaps any acceptance that the UK healthcare might have failed patients for fourteen years should now be a call to action to treat ME with the same urgency and the resources that have rapidly been made available for long covid.
Patients and carers should rightly be aggrieved and angry that nothing has changed in fourteen years for those who have this disease.
People with ME should expect that their illness will be taken seriously by the medical profession as the neurological disease that the WHO recognises and that research is properly funded to provide early diagnosis, effective treatment and hopefully a cure.
That has patently not occurred.

A moment to consider also any comments that might come from institutes or societies who ought to take responsibility for this disease.
If such organisations who currently refuse even to engage with ME patients, and yet who may comment that they might challenge any NICE guidelines that removed CBT or GET, then we would say they ought to be disqualified from even consideration of their comments.
If one refuses to step up to treat patients then one has no right to comment on their treatments.

The 2007 NICE guidelines are there as the epitaph to failure of NICE, the MRC, the UK CMOs, royal colleges and the government.

The 2021 NICE guidelines document might show how bare the landscape has been, and still is for people with ME in the UK.

Fourteen years with little progress.
Fourteen years!

August 2021

Last Update 20/08/2021