Contact your MP about the NICE Guideline delay

August 24, 2021


The ME Association is a member of the steering group at Forward-ME. In the last week we have been considering ways we can respond to the unprecedented last-minute lobbying by several Royal Colleges on behalf of a handful of aggrieved clinicians that resulted in a delay to the publication of what is a very good clinical guideline on ME/CFS.

It should be made clear that it is only a small number of clinicians who are endorsing the action taken by these Royal Colleges. Their objections are largely about the removal of graded exercise therapy and the downgrading of cognitive behaviour therapy to a form of psychological support in the new guideline.

There is a great deal more in this new guideline that will result in more appropriate and personalised care from the NHS and social care services. The new guideline is a chance for a new beginning and will create a much better relationship between patients and healthcare providers.

We hope to be able to impart news from NICE in the coming days and weeks, but in the meantime we are asking you to encourage your MP to get involved.

We hope that the final version of the guideline, which has been agreed by both the guideline committee and by NICE, will be published at some point, In the meantime we need to demonstrate to NICE how important this issue is to those who are directly affected by it.

Contact your MP

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.

We are also working with Carol Monaghan, MP, who chairs the All-Party Parliamentary Group (APPG) on ME. They will also be sending a letter to NICE on Friday this week and it would be great if you can email your MP as soon as possible to ask him/her to sign it.

Dr Charles Shepherd
Hon Medical Adviser Find Your MP

Template Letter

To: [insert name of your MP] 

Please support publication of the NICE Clinical Guideline ME/CFS 

I am writing to inform you of a deeply concerning delay to the publication by NICE of new clinical guideline for ME (Myalgic Encephalomyelitis, sometimes called Chronic Fatigue Syndrome). I want to ask for your help to ensure timely publication. 

Delete as appropriate: 

-I suffer from ME and the condition has significantly affected my life [share short personal story here].

or 

-I am a carer for someone with ME and have seen the devastating impact the condition has had on their quality of life [share short personal story here].

  • ME is a debilitating condition which often occurs following an infection, leaving people with a significant lack of energy, cognitive dysfunction, sleep disturbance, and pain, as well as other symptoms including post-exertional malaise. 
  • ME can impact quality of life to a greater extent than other medical conditions like MS and cancer. Many people are unable to leave their homes, and 75% are unable to undertake any work or education. 
  • Up to 265,000 people in the UK have ME, including children and young people where it is one of the commonest causes of long-term sickness absence from school. 

I heard through the ME charities and news-media that after three-years of work, the vital update to the NICE clinical guideline had been delayed at the 11th hour. I understand that the delay has been caused by at least two Royal Colleges refusing to implement the new recommendations. This is deeply concerning and is not representative of all clinical opinion. 

NICE is tasked with evaluating all relevant evidence and creating recommendations that ensure patients are treated fairly and in accord with best practice. Recommendations should not be based on the preconceptions and biases of a handful of clinicians or by professional organisations that were stakeholders and who had had their concerns addressed during the review process. 

I understand that the independent guideline committee had undertaken a very thorough review of all available evidence from clinical trials, experts, and patients. A detailed stakeholder consultation then took place and the committee reached a unanimous conclusion on the recommendations. NICE endorsed them with its final draft guideline which was sent to stakeholders on 04 August ahead of an intended publication on 18 August. 

NICE’s objectives, methods and procedures are defined both in law, and their guideline development manual. These have been developed to ensure both quality and reliability. Any attempts by external parties to undermine the rigorous methods of NICE, threatens the principles of evidence-based medicine. 

Forward-ME is a collaboration of ME charities and groups in the UK. They supported the new guideline believing it heralded a new beginning for people with ME and for health and social care services, and I share this view.  

I would like you to support Forward-ME’s call to publish the new NICE guideline without any further delay. We need appropriate clinical recommendations that will ensure the NHS and social care services can implement best-quality care and support. 

I would be very grateful if you could: 

  1. raise this issue with NICE on my behalf by contacting Professor Gillian Leng, Chief Executive: nice@nice.org.uk 
  1. Support the letter to NICE that the APPG on ME has prepared, which will be sent on Thursday 26th August at 5pm. Please contact: carol.monaghan.mp@parliament.uk 

I hope to hear from you soon. 

Yours sincerely, 

[Your Name, Your Address, Your Postcode] 

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