ME Association Website Survey: Why we’re asking about healthcare plans and ME/CFS | 01 November 2018


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

On the Homepage of our website, we are asking this month about healthcare plans which are something that is recommended in the current (2007) version of the NICE guideline on ME/CFS.

The ME Association has always been very clear about the fact that we believe many of the key recommendations in current NICE guideline 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 bringing about a rewrite of the current guideline. But the review process will take time and we want to use this period to continue gathering patient evidence that might then contribute to the new content.

There are also some positive and helpful recommendations in the current guideline and we hope these will be retained and covered in more detail in the new version. This applies in particular to the section covering General Principles of Care and the preparation of a healthcare plan:

Your care plan


“The healthcare professional responsible for your care should make a care plan with you, which is looked at and kept up to date every time you see a healthcare professional about your CFS/ME.” 


“It should include the symptoms and history of your condition, plans of treatments and self-help techniques you may be using, information and support needs, plans for work or education, and contact details of the healthcare professionals caring for you.” 


“Your care should be given in ways that are suitable for you. This may mean having some tests or treatments at home or getting support and advice by telephone or email.”


NICE Guideline ME/CFS: General Principles of Care.

Unfortunately, many of these helpful recommendations are just not taking place in practice. But we believe they should be retained, and NICE should use its influence to help make them a reality for those people that would benefit.

As a stakeholder in the guideline development process, we want to play a constructive role in trying to ensure that the new guideline is fit for purpose in all areas that it covers.

Part of this process will involve the submission of important patient evidence that we have already collected – our 2015 patient evidence report on the acceptability, efficacy and safety of CBT, GET and Pacing in particular.

We are continuing this process by asking you to complete this month’s website survey. We want to discover the extent to which care plans are being utilised, and whether you have tried to obtain one and been denied.

We believe healthcare plans should be offered to anyone with a serious long-term medical condition like ME/CFS and would like to present some data to NICE when the rewrite takes place.

You can locate the website survey half-way down the homepage of our website

Comments are also welcome and can be included in the section below this blog, or as part of the discussion on our Facebook page, or sent to head office via email (please title your emails ‘Healthcare Plans’).

In particular, we would like to hear from people who have a care plan in place, how this came about, what it comprises, and the benefits (or not) of having one.

Thank you.

The ME Association

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