6 ways to have your say in the NICE ME/CFS guideline consultation

On 10th November 2020 the consultation on the draft ME/CFS guideline will be launched by the National Institute for Health and Care Excellence (NICE). 

As a key stakeholder, #MEAction UK will be submitting an extensive response to this, but we need your input to do so. Whether you live with ME, care for someone with ME, or are an ally to the cause, you are welcomed to participate.

A key group of volunteers, many living with ME themselves and others carers of people with ME, make up #MEAction UK’s NICE team, who will be writing the submission. The consultation will be open for 6 weeks, ending on the 22nd December. 

Ways you can get involved:

1. Join a community call

We will be holding two community calls to discuss topics in the ME/CFS draft guideline. These will be open to anyone in the community who wants to participate and input to #MEAction’s official response. 

First call: 4pm Tuesday 17th November

Second call: 8pm Monday 23rd November

The calls will be facilitated by Sian Leary, who has led our NICE team for the past 18 months. We’ll also have support from Janet Sylvester, Laurie Jones, Denise Spreag and more volunteers.

To join one or both of these calls you’ll need to register first:

2. Respond to our social media polls

Throughout the consultation period we’ll be putting out polls on our social media platforms to get your input on lots of topics as we write #MEAction UK’s submission. 

Make sure you’re following us to see these polls

3. Volunteer to read through some of the supporting documentation

Along with the draft guideline itself, NICE will publish evidence reviews around most of their different recommendations, an equality impact assessment, an economic report, guideline appendices and more. This will amount to a few thousand pages of information! 

We’ll be aiming to read the documentation, but will need more help to get through all of it, so if you can take on a section, let us know today!

Email us on [email protected] and we can begin assigning sections once the draft guideline is published. 

We know some of you will go through the supporting documentation attached to the guidelines anyway. If you find anything that needs addressing, please send us an email on [email protected] 

4. Submit your own response

Anyone can submit an official response! Only registered stakeholder organisations will get feedback from NICE to their response, but all responses will be taken into consideration.

To submit your own response head over to the NICE ME/CFS guideline development page on the 10th November.

There will be a form available to download that you have to fill in and return to NICE before the deadline of Tuesday 22nd December.

5. Share share share!

This guideline won’t just be important for the healthcare of people with ME, it will also impact how we are treated more broadly. 

We’ll be using social media to get out information about the draft guideline throughout the consultation period, so share what you can to reach those with ME and those without. Unfortunately we know that some with long COVID are now being diagnosed with ME, so reaching out to them is imperative too.

Good hashtags to use are #pwME #MyalgicE #MECFS #LongCovid #LongHaulers and #StopRestPace.

We a strongly hoping for significant positive changes in this draft ME/CFS guideline. The positives that come out of it could change for the better how ME is viewed by public and health professionals alike. 

Let’s make that change as fast and as big as possible.

6. Sign up for the DecodeME study

Okay, we admit this isn’t strictly related to the NICE ME/CFS guideline consultation but it’s incredibly important.

The DecodeME study was granted £3.2 million in funding this year to investigate the genomes of 20,000 people with ME in the UK. 

Participation will be simple – answering some surveys and providing a saliva sample by post. 

If you have ME, register your interest in participating today and become part of the largest group of people with ME ever to be studied.

If you don’t have ME, tell everyone you know who does about this study:

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