ME Association Statement re: NICE ME/CFS Guideline Review and Committee Appointments | 09 November 2018

November 9, 2018


Dr Charles Shepherd, Hon. Medical Adviser, ME Association.

The ME Association has always been very clear on the position we take on the current (2007) NICE clinical guideline.

We believe that many of the key recommendations are unfit for purpose – especially those regarding the use of CBT and GET for everyone with mild or moderate ME/CFS.

We have played a key role in persuading NICE that a new guideline is required. The new guideline must recognise that ME/CFS is a serious multisystem disease and not a psychological illness.

We are also actively involved as a stakeholder in all the work that has been taking place this year in planning the scope of the new NICE guideline.

We will be submitting patient evidence on a whole range of issues that involve the diagnosis and management of ME/CFS in due course.

This evidence will include the results and comments on the subject of healthcare plans – the subject of this month’s ME Association website survey.

And we shall continue with our call for the recommendations on GET in the current guideline to be withdrawn while the new guideline is being prepared.

The NICE Guideline Committee

I applied to join the guideline committee – the group of health professionals and people with personal experience of ME/CFS – that will determine the content and recommendations in the new guideline when it is finally published in October 2020.

I was interviewed for this position a few weeks ago and the interview went very well.  As a result, I was invited to join the committee as a full member.

However, while I have no problems with the normal confidentiality clauses that accompany such work, I was not happy about the way in which full membership would involve curtailing a significant amount of the key work I am doing for the ME Association.

This key work might include issues of major concern to the patient community (e.g. problems with GET, The PACE trial, The Lightning Process etc.), and I was especially uneasy about the way in which I would have to curtail any public comment on these issues.

And as a full committee member, I might also have to remove myself from discussions and decisions in areas where I obviously have a very strong opinion.

On the other hand, I wanted to be doing all I could to ensure that we have a new NICE guideline on ME/CFS that is fit for purpose.

This was not an easy decision to make. On balance, I decided that it would be better to join the committee as a co-opted member – and this position has now been confirmed.

I am very pleased to be working alongside colleagues that will now include committee members Tony Crouch, Luis Nacul, William Weir, expert witnesses Jonathan Edwards and Greg Crowhurst, and the important lay members.

Being a co-opted member of the guideline committee means that I can still attend meetings, take part in discussions and put forward my views on GET etc. But I will not have the right to vote.

However, I will be able to continue with my charitable responsibilities and provide public information and comment on all aspects of management and on other issues that affect people with ME/CFS.

As applies to full members, I will not be able to disclose what is happening during committee discussions and I will not be able to comment on individual members of the committee, or the views that they hold on particular subjects.

NICE announced in an email to stakeholders yesterday that they are now looking to fill the positions of community paediatric nurse, specialist nurse and dietician.

I have made some recommendations and hope the roles are filled soon so that we may move on to the important discussions about content for the new ME/CFS clinical guideline.

NICE Definitions

Co-opted members may be included as additional members of a committee for 1 or more specific meetings. Co-opted members are part of the committee, join in discussion and contribute to formulating the recommendations. However, they are not full members, do not have voting rights and do not count towards the quorum.

Expert witnesses may be invited to attend and advise the committee on specific topics and can be drawn from a wide range of areas as appropriate. They are invited to present their evidence in the form of expert testimony and are asked to provide a written paper, or to agree a summary of their evidence recorded by the developer. They also help the committee to consider and interpret the evidence, but they are not members of the committee, so they should not be involved in the final decisions or influence the wording of the recommendations. Expert witnesses have no voting rights and do not count towards the quorum.


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