More reactions to NICE

This is an overview of news articles and reactions to the NICE Scandal as of 18 August 2021 – mostly from charities and scientists. It will be updated frequently until the Guideline is published.

Last update: 22 September at 23.50 (CEST).

Please find the first reactions on 17 August 2021 here: Reactions to the NICE Scandal



NICE

NICE announces next steps for ME/CFS guideline (27/8/21)

“Following the pause to the publication of the guideline NICE has today, 27 August 2021, announced that it is to hold a roundtable event to better understand the issues raised and determine how it can gain support for the guideline to ensure effective implementation.”


NICE update (10/9/21)

Updated: 10th September, to change the month of the meeting from September to October.”


Update on the NICE ME/CFS guideline roundtable discussion (21/9/21)

“The roundtable meeting to discuss the updated guideline on the diagnosis and management of ME/CFS will be held on October 18th in London. (…)

Professor Dame Carole Black has kindly agreed to act as an independent chair of the roundtable discussion.”



Charities attending the meeting

Overview not complete:

Invited: ME Association, The ME Trust, Science 4 ME, Forward-ME, Action for ME

Not invited: Invest in ME Research, Hope 4 ME & Fibro NI, WAMES


Media

18 August 2021

The National

Carol Monaghan hits out over delay to guidance for ME diagnosis and management

“While I recognise that it may require time for the new guideline to be acknowledged by some within the medical community, it is of vital importance that medical professionals take notice of the patient voice and the science.” – Carol Monaghan MP


The Huffington Post

We Are In The Dark’: Despair For ME Patients As Doctors Can’t Agree On Treatment

“We are in the dark about this. The NICE committee has worked hard to produce balanced guidelines which reflect science and best medical practice. Nobody should be able to undermine that.” – Sonya Chowdhury, CEO of Action for ME


Independent

Health watchdog accused of ‘capitulating to vested interests’ over chronic fatigue as it delays new advice

“At a time when NICE needs to show strength, and to back their own independent processes, they have instead shown a depressing level of weakness.” – MEAction UK


BBC Today – Radio 4

The programme (from 1 hr. 52 min).

Transcript shared by Dx Revision Watch.

It (GET/CBT) has served us well for the last 20 years or more, even before 2007. – Dr. Alastair Miller, medical advisor to the Sussex and Kent ME/CFS Society

“We frequently hear from children and adults who have been made worse by graded exercise therapy. – Sonia Chowdhury, CEO of Action for ME


Daily Mail

Health watchdog PAUSES publication of NHS guidelines for treating chronic fatigue syndrome amid dispute over right way to treat the condition

“A NICE spokesperson claimed the delay was prompted by ‘a number of professional groups’ who were unwilling to support the advice.” 


Pulse Today

NICE pauses publication of ‘unsupported’ chronic fatigue guideline

“It comes as long Covid is still affecting about a million people in the UK, with the number of patients living with symptoms – of which the most common is fatigue – for many months on the rise.”


MedScape

NICE Embroiled in Fierce Debate Over Decision to Delay New Guidance for ME

“Anticipating new guidelines, a press release issued by the charity coalition under an embargo on Tuesday, said the new guidance would give the medical community “a chance to reshape its troubled history” in treating ME/CFS, which it said had been characterised by doubts over whether it is a distinct medical condition.”


The Canary

A national health body seems set to throw millions of people under the bus

“Two doctors have asked for 50 people living with ME who have been harmed by GET to contact them with cases studies. It seems to be for a potential legal case if NICE guidelines are compromised to still include GET.”


The Times


19 August 2021

The Press and Journal

‘It’s a bleak day for ME patients’: Fury after health watchdog delays new guidelines on treatment

“We’re furious. We’re very concerned for the physical and mental health in people with ME, it is a setback.” – Helen McDade, MEAction campaigner


Nursing Times

NICE ‘pauses’ publication of updated guideline on treating ME/CFS

“We have been waiting 14 years for a clinical guideline that provides safe and practical recommendations, and gives due consideration to the most vulnerable in the patient community.” – ME Association


Cambridge News

Cambridge ME patients urge NICE to publish guidelines after last minute U-turn

“We had been keenly anticipating a move away from the old approach of forcing sufferers to undergo programmes of escalating physical exertion, which all too frequently lead to relapses and sometimes a permanent worsening of an already severely disabling illness.” – Cambridge ME Support Groups


Pharmiweb.com

Medical unlawfulness and the NICE ME/CFS Guideline delay

Patients come first.” – Doctors with ME


The Guardian – Letters

Pros and cons of ME therapy

“In the absence of strong evidence of harm, public bodies should not intervene to stop particular treatments but leave clinicians and patients to negotiate together if and how to use them.” – Prof Philip Graham

“My wife and daughter, when they overexerted themselves, faced severe and rapid deterioration.” – Dr John Cookson



20 August 2021

The Unwritten

‘Lacking in transparency, ethics, and compassion’: NICE pauses publication of new guidelines for ME

“NICE must do the right thing by patients and publish the new guidelines, or they risk their professional reputation and, more importantly, put the lives and welfare of people with ME at risk.” – Danielle Watts


21 August 2021

BBC Breakfast

Ironically, the NICE Guidance on ME has just been delayed because there is still, all these years on, no consensus on what is the right treatment, the best treatment, for people with ME.” – Dr. Sarah Jarvis


22 August 2021

The Times

If we can’t agree on ME, we’ve got no chance against long Covid

“We need to know what the best available treatments for any disease are based on meticulous analysis of the evidence from trials and patient testimonies.” – Dr Phil Hammond 


Stat News

By David Tuller and Steven Lubet

Delay of British chronic fatigue syndrome guidelines are a setback for people with long Covid

“With people all over the world now reporting pandemic-related symptoms similar to ME/CFS, it is time for these ineffective interventions to be discarded as first-line treatments for non-specific post-viral symptoms following Covid-19 or other infections.”


23 August 2021

BBC Radio Scotland

Interview with Helen McDade, MEAction Scotland (5 min).

Shared by Broken Battery

24 August 2021

BBC Radio 4

Interview with Dr. Nina Muirhead, Director in Doctors with ME, and Dr. David Strain, Medical Advisor for Action for ME (13 min.)

Shared by Broken Battery

25 August 2021

UnHerd

What we’re not being told about ME


Social Science Space

Is the Sunk Cost Fallacy ‘First Doing Harm’ in Chronic Fatigue Syndrome?

“Unsurprisingly, the arguments for continuing to recommend such discredited practices turn out to be as poor as the therapies themselves.” – Prof Steven Lubet


27 August 2021

The Church Times

Doctor does not always know best  

“If GET and CBT do not work, they should be dropped, as NICE recommends. It is not the job of patients to protect doctors’ egos.” – Angela Tilby, Priest


30 August 2021

The Guardian

Withdrawal of planned guidance on ME upsets patients

“The move has not only left patients distraught but has worsened the already sharp discord within the scientific community over approaches to the poorly understood condition.”


Guidelines (site for UK healthcare professionals)

NICE announces roundtable discussion for paused ME/CFS guideline

“The meeting aims to help NICE better understand the issues raised during the guideline consultation, in accordance with issues raised during the pre-publication period of the final guideline.”


31 August 2021

Pulse Today

NICE to hold roundtable in attempt to salvage paused chronic fatigue guideline

“NICE expressed it was eager to ‘move forward as quickly as possible’ with publication of the guideline.”


1 September 2021

The Canary

If you live with ME, long Covid, or other chronic illness, it’s time to fight back

“On 20 September, we and our allies will be protesting outside NICE HQ in Stratford, East London.”


4 September 2021

Luton Urban Radio


14 September 2021

The Canary

The leak of NICE’s finalised ME guidelines exposes the ‘psych lobby’ scandal

“NICE admitting that there’s quantitative (and historical) evidence that GET is harmful could potentially open up the floodgates for compensation claims against medical professionals.”


17 September 2021

Dorset Eye

ME patients to hold groundbreaking protest outside NICE HQ – calling on it to ‘publish that guideline’

“It will be the first-time people with ME have taken direct action in recent memory.  They’ll be there on behalf of the millions of people around the world house or bed bound with this life-changing disease.”

Charities

ME Association – Dr. Charles Shepherd (18/8/21)

The NICE Guideline ME/CFS: Personal Observations Dr Charles Shepherd

“The action of a small number of people who have persuaded the leadership at the Royal College of Physicians, the Royal College of Paediatrics and Child Health, and possibly other Royal Colleges, to put pressure on NICE to reconsider what had already been agreed by the guideline committee, is reprehensible.”


ME Association / Forward M.E (18/8/21)

NICE Clinical Guideline

Includes the orginial press release and statement supporting the new guideline.

“This further delay, after 4 years of evidence-based review is of real concern and as we have no idea when the guideline might finally emerge – or what it will look like – it could have a detrimental effect on people who are waiting for a diagnosis and practical help from health and social care services.”


Tymes Trust (18/8/21)

Statement – The “pausing” of the new NICE Guideline

“It is extremely important that the new Guideline is published to avoid any more children with ME being made worse by inappropriate and misguided therapies, or their parents being unjustly accused of making their children ill when these therapies do not work. The Trust has had to advise hundreds of such families and this situation must not continue.”


VIRAS (19/8/21)

Complaint to NICE

“NICE have acted in bad faith, exploiting and abusing stakeholder’s trust and hard work.”


Invest in ME Research (20/8/21)

Letter to NICE Management

“What you are doing affects people with ME and their families who have already endured countless years of prejudice, ill treatment, ignorant clinicians and appalling manipulation by establishment groups that represent no one but themselves.”


Emerge Australia (20/8/21)

Statement on the NICE Guidelines Delay

“This is a devastating development for ME/CFS patients around the world, especially those in the UK who have waited years for these new guidelines.”


British Association for CFS/ME (20/8/21)

Organisation for health professionals (BACME).
Statement published by Sussex & Kent ME/CFS Society.

“BACME will continue to support members to work with NICE guidance once published, within the remit of their professional practice and specialist CFS services.”



MillionsMissing France (23/8/21)

Letter to NICE

“This is worrying. It is the new NICE guideline that is supported by the evidence, not the objections of these organisations!”


ME Association (24/8/21)

Contact your MP about the NICE Guideline delay

“We would like you to contact your MP using the template email below. Encourage them to contact NICE and raise your concerns about the delay and the reasons behind it.”


The Royal College of Occupational Therapists (25/8/21)

RCOT response to NICE ME/CFS guideline delay

“RCOT hopes the final recommendations from NICE will lead to further research in this area; people living with ME/CFS struggle to get the advice and support they need through local healthcare provision.”

Comment to the respons by Dr. Charles Shepherd.



Disability Rights UK (26/8/21)

Blog by Sian Leary, MEAction UK

Can vested interests prevent publication of ‘independent’ NICE clinical guidelines?

“Is the review process only ‘independent’ so long as it’s in agreement with the beliefs of certain people?”


Forward-ME / ME Association (27/8/21)

Statement after NICE announcement

“If the Round Table does not reach the desired outcome with full publication of the new guidelines, Forward-ME and our members will take every possible step to ensure the final guidelines in their current form are published in full.”


Chronic Illness Inclusion (27/8/21)

When NICE becomes nasty

“So, why were the guidelines not published? We can only speculate as to the true reason and that may not be a wise option from a legal perspective. We fear that undue influence has lead NICE into some very murky and nasty ethical waters.”


Invest in ME Research (28/8/21)

Comment: A Continuing Saga of Ineptitude – 2021

“We can surmise that they are influenced by external forces that do not have the welfare of patients primarily in mind.”


Doctors with ME (29/8/21)

Public Letter to DHSC, MHRA, HoC, NICE: Call for a ‘Medical Regulatory Agency’

“Once again, NICE is holding scientific conclusions hostage to medical norms and belief systems, in the face of collapsed scientific and legal justifiability.”


Physios for ME (29/8/21)

Physios for ME response to delayed NICE Guidelines

“Our initial reaction to the delay was one of great concern as to the impact this would have on the ME community, as we understand that cognitive and emotional stressors can cause symptom exacerbation.”


Science for ME (S4ME) (30/8/21)

Letter to NICE about the ‘pause’ and roundtable meeting

“The announcement first of the pause and then of the roundtable, and the lack of clear explanations of the purpose, agenda and next steps has caused considerable concern to our members who are relying on the new guideline to enable them to access appropriate compassionate care.”


ME Association (2/9/21)

New Poll: Have the Royal Colleges behaved responsibly in obstructing publication and implementation of the new NICE guideline on ME/CFS?


ME Association (6/9/21)

Letter to NICE from UK charities and support organisations

“So, we are now collecting signatures for basically the same letter to go from charities and support organisations to NICE. Signatures from outside the UK are also welcome.” [Original letter sent by David Tuller and 125 scientists, 1/9/21]


Invest in ME Research (8/9/21)

Lack of transparency from NICE Regarding Publication of Updated Guideline on Diagnosis and Management of ME/CFS

“You have still not announced officially which interested parties you have chosen to attend your roundtable – but instead you have allowed patients (and stakeholders) to pick up scraps of information via the internet – causing anxiety to some and speculation amongst others. This is no way for NICE to behave.”


ME Australia (9/9/21)

Opinion and recommendations on the UK’s NICE Round Table

“The current NICE debacle and extraordinary deviation from normal procedure and published protocol is evidence of institutionalised discrimination by large sections of the UK medical establishment.”


ME Association (10/9/21)

The roundtable discussion is now planned for October

“The ME Association will be attending the roundtable meeting and like all stakeholders, we have had to sign a confidentiality agreement – which prevents us from discussing any information that NICE regards as confidential.”


The ME Trust (14/9/21)


WAMES (16/9/21)

NICE ME/CFS guideline publication delay drags on…

“Some stakeholder groups have admitted to being invited, but although WAMES received an acknowledgement to our email, we did not receive an invitation.” 


Invest in ME Research (18/9/21)

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. (…) Careers and egos and influence are the order of the day – patients can take a back seat!”


Invest in ME Research (21/9/21)

Update on NICE Statement

“Our view is that this disingenuous statement by NICE should be viewed by all patients as lacking credibility and a further attempt to avoid real scrutiny.”


MillionsMissing Holland (21/9/21)


Doctors with ME (22/9/21)

The NICE debacle – will NICE survive?

“With the world watching, NICE would be wise to take stock and consider which side of the science vs. discrimination conflict it stands for.”


Scientists / Others

Lou Corsious, Msc Health Sciences (18/8/21)

Letter to the Chief Executive of NICE

“Your decision has far reaching consequences for patients, for science and for your own institute.”


Prof. Jonathan Edwards (19/8/21)

Responding to Dr. Andrew Goddard’s comment in BBC.

Quotes from the letter are also shared by Winston Blick (6 pictures).


David Tuller, Dr PH (20/8/21)

Trial By Error: NICE Squares Off Against Royal College Bullies Over New ME/CFS Guidelines

“For many years, campaigners for psycho-behavioral interventions for ME/CFS have accused patients who objected to the research as being anti-scientific zealots. It was always a ridiculous charge, but developments this week have made it clear, if there was any doubt, that these entitled bullies are the ones immune to the actual evidence.”


Valerie Eliot Smith, Barrister (20/8/21)

NICE – contemptuous and contemptible: the case for community publication of the “paused” guideline for “ME/CFS”

“Depending on what happens over the next few weeks, this action by NICE may require closer legal scrutiny.”


Kirstie Sivapalan, Writer (18/8/21)

GET Lost

10 stories of patients being harmed by graded exercise therapy.


Prof Michael Sharpe

Sharpe is one of the principal investigators of the controversial PACE trial.


Sten Helmfrid, PhD in physics


Prof Brandan Delaney


Prof Brian Hughes (22/8/21)

NICEXIT: Royal Colleges look to “take back control” of treatment standards

“In short, these Royal College leaders were unhappy with what NICE had proposed by way of evidence-based treatment guidance for ME/CFS. Over their dead bodies would such independent regulation of standards ever be tolerated.”


Dr. Phil Hammond (23/8/21)

Twitter Poll.


Valerie Eliot Smith, Barrister (25/8/21)

Update on the “paused” NICE guideline for “ME/CFS”: the case for individual/community publication

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.


Margaret Williams, former NHS-professional (pen-name) (28/8/21)

Wilful Ignorance?

“Ignorance, particularly wilful ignorance, is no defence in law.”


Valerie Eliot Smith, Barrister (1/9/21)

Legal opinion and legal advice: the “paused” NICE guideline for “ME/CFS”

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.


David Tuller, Dr PH (1/9/21)

Trial By Error: A Letter Urging NICE to Publish ME/CFS Guideline Without Delay

Two letters. The second is signed by 126 scientists, clinicians, academics and others.

“I would be remiss not to mention another guideline for the illness, which was published last week by Mayo Clinic Proceedings.

The authors note that “the United States and other governments as well as major health care organizations have recently withdrawn graded exercise and cognitive-behavioral therapy as the treatment of choice for patients with ME/CFS.”

Respons by NICE (2/9/21)


Prof Ron Davis

Statement shared by Doctors with ME (13/9/21).


Alun Cairns (2/9/21) / Jo Churchill (8/9/21)

Question and answer – British Parliament

The Department of Health and Social Care are preparing an answer to why NICE postponed the publication of the guidelines.


Patrick Grady (3/9/21) / Jo Churchill (8/9/21)

Question and answer – British Parliament

“NICE has advised that it plans to host a roundtable event in September to gain support for the guideline to ensure effective implementation.”


Fleur Anderson (9/9/21) / Jo Churchill (14/9/21)

Question and answer – British Parliament

“NICE paused the publication of its updated guideline on myalgic encephalomyelitis/chronic fatigue syndrome due to concerns raised by stakeholders.”


Dr. William Weir (12/9/21)

Science In The Age of Dogma (Phoenix Rising)

“NICE are being influenced by vested interests that remain trapped by their own dogma. NICE cannot afford to give way to such influence, as it would be contrary to their statutory obligation to provide advice based on science, rather than dogma.”


Stacey Cunningham (12/9/21)

Thoughts on NICE Round Table (M.E Centraal/ME Global Chronicle)

“ME/CFS patients are being held hostage and forced to participate in a highly opaque Round Table process of dubious purpose, with publication of the guidelines conditional upon it.”


Dr. Keith Geraghty (12/9/21)


Valerie Eliot Smith, Barrister (13/9/21)

Abuse of process & abuse of power: a NICE publication (with file download)

“As I indicated earlier, I am not affiliated to any organisation or group in the ME community. For that reason, and the reasons given above, I am making a link available (below) from which the 17 August 2021 “final” version of the guideline can be downloaded.”


David Tuller, Dr PH (15/9/21)

An Updated Letter to the NICE Chief Executive About the Unpublished ME/CFS

“The letter has now been signed by more than 150 experts and more than 100 UK and international charities, support groups and other relevant organizations.”

Scandinavia

Denmark

Sundhetspolitisk tidsskrift (18/8/21)

Kæmpe skuffelse for ME-patienter verden over: Stridigheder sætter nye anbefalinger på pause på ubestemt tid

Sundhetspolitisk tidsskrift (18/8/21)

Sundhedspsykolog om udsættelse af anbefalinger: Patienter bliver ladt i stikken

ME-foreningen (18/8/21)

Der er stadig evidens bag den nye kurs fra NICE


Norway

Norges ME-forening (17/8/21)

Nye NICE Guidelines for ME/CFS – utsatt

Norsk helseinformatikk (NHI) (19/8/21)

Uenighet tvinger NICE til å vente med nye retningslinjer for ME/CFS

Please sign MEAction’s petition

Publish the ME/CFS NICE Guideline Now

More than 21 100 have signed since 19 August 2021.


Protest in London

Monday 20 September 2020, 1 PM

Organizer: The Chronic Collaboration


Live streaming 20 september:


Hundreds of patients were protesting from home:



Learn more

Adding some links to relevant background information.


History will judge!

Much love to the ME Community. ❤

Sissel Sunde, Norway
MillionsMissing Stavanger

Twitter: @sissel777


3 thoughts on “More reactions to NICE

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s