NICE ME/CFS guideline

Cautious welcome from WAMES & the ME community

WAMES welcomes the publication of the 2021 NICE guideline for ME/CFS and the decision by NICE to ‘follow the science’ regarding the inappropriateness of GET and CBT as treatments for ME/CFS. Any inflexible treatment based on theories of deconditioning and faulty beliefs, (which encourage people to pushing beyond ones limits) are now recognised to be harmful, and instead Pacing or energy management, (learning to function better within one’s energy envelope), is the recommended management approach.

Add to that the inclusion of Post-Exertional Malaise as an essential diagnostic criteria and we hopefully have a solid base to build a healthcare approach on, while recognising that there is much scope for improvement and research.

We believe that the delay in publishing was a serious error on NICE’s part. It caused immense distress to patients and their families and possible harm, especially to those who are newly diagnosed. It delayed the start of much needed change and failed to achieve the support from health professionals who had objected to the stricter definition of ME and the removal of the therapies they practised.

We are not optimistic that the road to healthcare improvement will be speedy and smooth. Some of the language in the guideline is unclear and open to interpretation, and there is still a significant amount of opposition to implementing the changes, with signs that some services could attempt to rebrand, rather than change their practices. Within Wales there is also little understanding of ME and PEM so it will be harder to share and spread ‘good practice’. We are however committed to working with Welsh Government, commissioners, NHS Wales and Social Care Wales to use the Guideline to start to tackle the healthcare crisis that is ME/CFS in Wales.

WAMES’ medical advisor says:

“As a paediatrician who has had to defend many innocent families of children and young persons with ME from safeguarding proceedings, I hope that the guidelines will finally put a stop to this injustice, and that no longer will young people with ME  be labelled as having “Medically Unexplained Symptoms” or being  “Perplexing Presentations” as an excuse to refer to social services. Children and young people with ME deserve a firm positive diagnosis from their paediatricians. This will protect them from undue pressures, and  lead to appropriate support and help.”

Dr Nigel Speight, WAMES medical adviser

Dr Nigel Speight,
Advisor, WAMES
Honorary Fellow, Doctors with M.E.
Paediatric Physician,
Co- Author, International Consensus Criteria,
Co-Author, Pediatric Primer in Frontiers in Pediatrics,
Advisor, 25% ME Group,
Researcher

More statements:

Below are links to organisations and individuals in the ME community who have reacted with delight and hope for the future, through to cautious longing and anger at the unscientific and bureaucratic delay.

Action for ME: NICE publish the guideline

“The new NICE guideline is welcomed because it acknowledges the truth of people’s experiences, and creates a foundation for hope that future children and adults with ME will not repeat the anguish of the past.” (Sonya Chowdhury, CEO, Action for ME)

Doctors with ME: NICE 2021: A Triumph of Science over Discrimination

Doctors with M.E. considers the launch of this guideline to be a watershed moment in the history of ME/CFS medical care in the UK, with implications that extend to those Long Covid (PASC) patients who also meet ME/CFS diagnostic criteria. [Includes quotes from Prof Brian Hughes, Caroline Kingdon, Tom Kindlon, Dr Karl Morten, Dr Charles Shepherd, Dr Nigel Speight, Dr David Strain, Dr William Weir, Dr Asad Khan, Dr Ben Marsh, Dr Shaun Peter Qureshi, Dr KN Hng, Dr Nina Muirhead, Dr Keith Geraghty, Dr Richard Ramyar]

Forward ME: New NICE guidelines on ME: forward-ME statement & media support

Doctors, and people with ME welcome the new NICE guideline on ME/CFS, which brings major improvements to the diagnosis, management and support for people with ME – driving major improvements in care

Invest in ME: NICE guidelines – taking us forward to 2007

Following the ‘veritable omnishambles ‘ of the pause in NICE guideline publication Invest in ME (IiME) find the 2021 guideline “is only able to attempt to undo the damage done by inaction, ignorance, apathy and negligence during the past 14 years… it stands as a testament to 14 years of nothing much changing for people with ME, 14 years of failure from governments and establishment healthcare and research organisations in treating this disease.”

#MEAction: Final NICE ME/CFS guideline published – find out the big news!

Overall, #MEAction UK is pleased that the final guideline is a significant improvement on the 2007 CFS/ME guideline…Concerns remain around how the section on incorporating physical activity will be implemented in practice. While some physiotherapists have a clear understanding of ME and can provide helpful support, others will require significant training and education to ensure harmful practices do indeed stop.

ME Association: The new NICE guideline on ME/CFS is published!

After a very through review of all the evidence – from clinical trials, experts and patients – we now have a new guideline that has reversed these recommendations and should be widely welcomed by people with ME… The next challenge involves educating and training all health professionals on how to diagnose and manage ME and setting up a full network of hospital-based referral services where GPs can refer for further help.

MECFS Skeptic (Michiel Tack): A historic change for the ME/CFS community

The development of the guideline has been a long process mired with controversy, criticism, and unexpected delays. Its final publication, however, represents a historic change for the ME/CFS community… 29 October may turn out to be a historical turning point. Hopefully, this will open the way to more fruitful scientific research on the illness and eventually, a cure.

ME Research UK: Our response to the updated NICE guideline

Today’s publication by NICE of its updated… guideline marks a significant step in both the acceptance of ME as a physical illness and the recognition of appropriate treatment needs of those affected by the condition. We broadly welcome this significant update and improvement to the previous 14-year-old document, but it marks only the beginning of the transformation needed for ME to be more fully understood and, ultimately, for a cure to be found.

MESiG: Today, NICE have finally published the guidelines for ME/CFS. This is a big step in the right direction. Graded exercise Therapy is not to be offered as an effective treatment! #GETisGONE   Facebook 29 Oct 2021

ME Trust: New NICE guideline for ME/CFS

The ME Trust welcomes the publication of the new NICE Guideline. We are very pleased… and hope that it will improve the care and support available to people with this debilitating and chronic illness.

Solve MECFS: NICE publishes new guidance on diagnosing, treating ME/CFS

Most significantly, the new guidance removes recommendations for Graded Exercise Therapy (GET) due to poor quality evidence, and downgrades recommendations of Cognitive Behavioral Therapy (CBT). This is a historic victory for millions with ME/CFS.

Science 4 ME: New NICE guideline creates hope for change at last

Science for ME, an online forum for people with ME/CFS, clinicians, and researchers, has welcomed the much-anticipated publication, calling it a paradigm shift in the care of people with this debilitating condition – hope for change.

Tymes Trust

Virology (Prof Tuller): Trial By Error: NICE liberates new ME/CFS guideline after two-month hijacking nightmare

It is hard to dispute the validity of many concerns raised by critics, including the tally of the damage caused by long-standing policies. Like any clinical guideline, this one is open to abuse by health care professionals who choose to ignore or misinterpret or mis-apply its recommendations. Nonetheless, as another patient noted on Facebook, the publication is a way to “bank some of the progress” that has been made in correcting the scientific narrative—and can serve as an impetus for seeking related changes in medical practice and research.