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Real People. Real Disease. Real M.E.
At the ME Association, we believe it is high time the world at large realises that this disease can affect anyone – any age, any ethnicity – and can occur at any time of life.
People with M.E. are demonstrating they possess the confidence to be seen and are raising more awareness than ever before! It’s not too late: Join the Real M.E. campaign.
|“ME/CFS is a biological illness, not a psychologic disorder. Patients with ME/CFS are neither malingering nor seeking secondary gain. These patients have multiple pathophysiological changes that affect multiple systems.”
“ME/CFS is a serious, chronic, complex, and multisystem disease that frequently and dramatically limits the activities of affected patients.”
“The physical symptoms can be as disabling as multiple sclerosis, systemic lupus erythematosus, rheumatoid arthritis, congestive heart failure and other chronic conditions.”
See Introduction for more information.
ME Association Statement
In August 2007, the National Institute for Health and Care Excellence (NICE) issued clinical guidance on the diagnosis and management of ME/CFS (CG53).
The ME Association welcomed the fact that this guidance contained several very clear statements which reflect good clinical practice in the management of any complex chronic disorder: the statements on the need to provide balanced information, to obtain informed consent and not to coerce patients into approaches to management with which they are not happy.
However, when it came to some key findings and recommendations on both diagnosis and management of people with ME/CFS, the ME Association believed that aspects of the NICE guideline were not fit for purpose because they:
- broadened the diagnostic criteria as to what may be regarded as ME/CFS.
- advocated a ‘one size fits all’ approach to management by placing far too much emphasis on the role of cognitive behavioural therapy (CBT) and graded exercise therapy (GET) for everyone with mild or moderate ME/CFS.
- provided inadequate information on the role of symptomatic relief, especially in relation to orthostatic intolerance and autonomic dysfunction.
- failed to properly address many of the important non-drug aspects of management such as benefits, diet/nutrition and occupational health.
Following widespread pressure to review the 2007 NICE guideline on ME/CFS, including a petition that was organised by the ME Association and gained over 15,000 signatures, NICE sought the views of stakeholders in 2017.
|“The strong message from stakeholders was that the continuing debate about the causes of this condition and the best approach to treatment argued for a review of the current guideline.”
- In the 2017 Surveillance Report, NICE announced that it had evaluated 155 pieces of evidence and considered the views of 39 stakeholder groups, including patient organisations and royal colleges.
- NICE acknowledged that the clinical assessment and treatment recommendations in the 2007 guideline were not meeting the needs of people with ME/CFS and a new guideline was therefore required.
- They also noted that three reports from America had indicated that there are likely to be changes in diagnostic criteria that could impact on the guideline recommendations.
- NICE also noted that there was new information available regarding the PACE trial results:
- read more about the controversies surrounding this trial of CBT and GET and about patient surveys on the subject of illness management by visiting the Research section.
The new NICE guideline on ME/CFS will not be published until December 2020. In the meantime, it appears that the current guideline will not be withdrawn or amended. On-going information on the development of the new guideline can be found below.
The 2017-2020 NICE Guideline Review
On 10 July 2017, the ME Association and other stakeholders were sent copies of a surveillance report from NICE that recommended no update to the current guideline. In effect, this would mean the guideline would not have changed since it had been published in 2007.
The only positive proposal was to remove the guideline from the static list – but this was because of a pending trial of internet-based CBT for children (the FITNET trial).
The ME Association was not at all happy to learn of this decision and based on similar public expressions of concern, decided to launch a petition to demonstrate to NICE just how wrong it was to leave the guideline unchanged.
The petition closed on 26th July having obtained over 15,000 supporters – and over 300 individual comments – and it was sent to Sir Andrew Dillon (the NICE Chief Executive).
At the same time, the ME Association and other stakeholders submitted formal responses to the surveillance report indicating their objections and explaining why it was felt the recommendation to take no action was wrong.
|On 20 September 2017, we were both surprised and delighted to be informed that, due in large part to combined advocacy efforts, NICE had decided to review and update the clinical guideline for ME/CFS!|
This was excellent news as it meant we would have another opportunity to try and ensure the guideline reflects the true nature of ME/CFS and represents what is best for patients with this disease.
The following have taken place since the announcement:
- A stakeholder engagement workshop was held in January 2018, which marked the beginning of the review process.
- Read Dr Charles Shepherd’s report about this meeting.
- NICE published a draft scope report which was discussed at a stakeholders meeting in May 2018.
- A revised draft scope was then issued and the ME Association made its first formal submission in July 2018.
- Membership of the guideline committee has been completed.
The NICE guideline committee is being chaired by Dr Peter Barry – a consultant paediatrician from Leicester. The Vice Chair is Baroness Ilora Finlay – professor of palliative medicine and a member of the House of Lords. Professional members include Dr Luis Nacul (ME Biobank), Dr Charles Shepherd (co-opted member), Dr William Weir and Caroline Kingdon (ME Biobank). There are also 5 lay members.
In March 2019 the NICE guideline committee Chair and Vice-Chair asked Forward ME members to prepare a public survey on patient experiences of CBT and GET. This was completed online and the data were independently analysed by Oxford Brookes University before being presented to the NICE committee:
|“The results show clearly that cognitive behavioural therapy and graded exercise therapy are unsuitable treatments or management approaches for ME/CFS. The changes in severity and the worsening of symptoms are clear indications that the therapies being offered are having adverse effects on the health of individuals.”
- In April 2019 the guideline committee declared members’ interests and this document provides a complete listing of all members.
- The guideline committee will be guided by the revised scoping report, and deliberate on content for the new guideline until June 2020.
- In December 2019, we were informed by NICE that the deadlines had been delayed so that the committee had more time to consider the evidence ahead of the stakeholder consultation.
- In June 2020, it is expected that stakeholders will again have the chance to submit formal comments on the new draft guideline in a consultation that will run until August 2020.
- The revised and updated NICE clinical guideline on ME/CFS is not expected to be published until December 2020.
The ME Association
Please support our vital work
We are a national charity working hard to make the UK a better place for people whose lives have been devastated by an often-misunderstood neurological disease.
If you would like to support our efforts and ensure we are able to inform, support, advocate and invest in biomedical research, then please donate today.
Just click the image opposite or visit our JustGiving page for one-off donations or to establish a regular payment. You can even establish your own fundraising event.
ME Association Registered Charity Number 801279
Visit our other pages in this section:
- What is ME?
- Symptoms, Testing and Assessment
- Prognosis and Quality of Life
- Children and Adolescents
- NICE Clinical Guideline
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