As part of our ongoing advocacy work, #MEAction UK has been campaigning for the National Institute for Clinical Excellence (NICE) to update the current ME guidelines.
Updated ME/CFS guidelines are due to be published in October 2020. However in the meantime, the existing guidelines published in August 2007 that recommend Cognitive Behavioral Therapy (CBT) and Graded Exercise Therapy (GET) still stand. #MEAction has been continuously campaigning for NICE to add interim warnings to the existing guidelines stating that CBT and GET should not be used due to the harm they cause to patients with ME. Patient surveys totalling over 16,000 respondents clearly demonstrate this. Most recently the Forward ME Group, of which #MEAction UK is a part, conducted a survey about the impact of GET and CBT on patients. 2274 respondents confirmed that GET is harming a large majority of people with ME receiving this treatment in the UK. A majority of people with ME report that CBT led to no change in their physical health; however those who reported a change after CBT were more likely to experience deterioration than improvement.
The Story so Far
Over the last two years, #MEAction UK has been an integral part of the NICE stakeholder consultations and in July 2017 NICE gave stakeholder organisations two weeks to respond to their proposal not to update the existing CFS/ME guideline. #MEAction wrote a comprehensive response to NICE. The result of this and many other submissions was a decision to update the guideline.
Following this, NICE held scoping meetings and a written consultation with stakeholders and medical professionals to define what questions the guideline development group (GDG) should answer as they worked to rewrite the guidelines. You can read more about our responses to NICE here. Most recently, #MEAction campaigned for an unbiased committee to be appointed for the new ME/CFS guidelines committee.
Multiple requests to suspend GET and CBT recommendations from the existing guidelines have been made in the past few years by #MEAction as well as other organisations and advocates.
MPs have also made such requests during the parliamentary debates of 2018. The ongoing harm was once again highlighted in January 2019, with Carol Monaghan MP spearheading a Main Chamber debate in which over 40 MPs passed a motion that included, amongst other things, supporting “the suspension of Graded Exercise Therapy and Cognitive Behaviour Therapy as means of treatment”. Our continued efforts to lobby MPs, Parliament and the Government with regards to ME are part of our daily work.
Stop the harm now – #StopGET
No action has been forthcoming from NICE at this stage and they have not communicated any progress to stakeholders. The abridged minutes from committee meetings are available on the NICE website but these do not mention the pressing issue of ongoing harm under the existing guideline. We have therefore written to NICE asking what progress they have made on deciding appropriate action to prevent harm before the new guideline is published; and reasserting our position that an interim warning must be added to the current guidelines, covering the time until the new guideline is published, stating that GET and CBT should not be used and can be harmful to people with ME. Furthermore, this message must be disseminated to all general practitioners and health and social care professionals, including in the Department of Work and Pensions (DWP).
NICE have previously made multiple statements implying they will assess harm caused by current recommendations and consider appropriate action in consultation with the guideline development group as soon as possible.
- “We do recognise the controversy about the currently-recommended treatments and will discuss with the expert committee, once appointed, before deciding on any action prior to the completion of the new guideline.” – NICE Spokesman
- “We will address the clinical and cost effectiveness of treatments including GET and CBT as soon as is feasible in the development of the guideline. To support the committee in making an informed decision on treatments we need to consider diagnostic criteria first.” – NICE response to scoping consultation
- “I appreciate that the existing recommendations are a matter of concern to some patients and groups and we will give some consideration to whether we need to modify or omit any of the existing recommendations during the development of the new guideline. We will certainly consult the new Committee members, when appointed, on this and a number of other issues.” – Professor Mark Baker, former NICE Centre for Guidelines Director
We are working to hold NICE to account and urge them to take action now to prevent the harm of hundreds more before the new guidelines are published. However at present responses suggest NICE are dragging their feet and not offering clear answers to our questions. We are awaiting further responses from the enquiry handling team.
We must keep telling our story
Ongoing harms from GET and CBT are consistently being reported by people with ME and we are committed to highlighting these cases to society and those in power. In the case of Cherry, ill since 2013, the exercise protocols prescribed for ME were powerful enough for her to ignore the physiological realities of her disease. Cherry is now 100 percent bedridden. “It seems innocuous – how can gentle exercise or good thoughts possibly be dangerous?” Cherry’s mum said. “The problem with the disease is that you can do massive damage to your body systems, but it often doesn’t show up until months later. In hindsight I believe that the hospital consultant should have told Cherry to take a year and rest and let her body heal.” Read more about Cherry’s story here.
We’ll keep the community updated on further progress with regards to NICE and our correspondence, but in the meantime we are looking for people willing to share their story of the impact of GET and CBT, especially those who have experienced deterioration from the treatments this year. We want to use these to demonstrate that this harm is not an abstract concept but a reality facing our community every single day that those recommendations remain in place.Tell your story