As publication of new ME guidelines are delayed, NICE once again refuse to take action to mitigate the harmful recommendations that still stand in the existing guideline. Join us as we send them a giant card and tweet them so that they see the damage their guidelines have caused. Read more below and take action.

Last August we updated the community on our continued work and correspondence with the National Institute for Health and Care Excellence (NICE), detailing our efforts to work towards an appropriate action that would mitigate against the ongoing harm graded exercise therapy (GET) and cognitive behavioural therapy (CBT) are causing people with ME. 

NICE are currently rewriting their guidelines on ME. This has been a prolonged process, starting back in 2017 with an initial proposal not to update the guidance – this was overturned after a torrent of opposition from across the ME community, including #MEAction UK. 

Despite stating that the existing guideline would stay in place until the end of the rewrite process, NICE also stated during scoping meetings and in statements made to the press in early 2018 that they would look to quickly address the issue of harmful recommendations in the existing guideline.

As part of our efforts, #MEAction UK had a conference call with Dr Paul Chrisp, Director of the Centre for Guidelines at NICE in December. We initially felt this was a positive phone call, in which we discussed different actions NICE could take to mitigate against harm prior to the release of the new guidelines. Dr Chrisp agreed that he would look into adding a neutral statement specifically to the recommendation of GET reiterating that it was under review. However, we have since had two more responses that once again state NICE will not take any action to mitigate harm at this stage. 

NICE’s initial reason for not taking any action was that they do not have a purview to deal with people being pressured to undergo treatments. We wrote back detailing that we were not asking them to address the issue of pressure from healthcare professionals, but the issue of significant evidence pointing to GET being harmful, and that the current stance contravenes their principle of non-maleficence – “do no harm”.

We have since received another response that yet again sidesteps the issue of their recommending a harmful therapy. NICE argue that it is the responsibility of clinicians to make people with health conditions aware of the potential risks (and benefits) of any intervention they are offered. Further to this, NICE contend that they must follow the published processes for guidelines development to avoid the possibility of a challenge to the new guidelines.

While we appreciate that good practice must be followed, we believe there are exceptional circumstances that warrant action now to suspend GET until the final guideline is published. Until then, it appears that the harm people with ME are experiencing is still not being taken seriously. 

With the extension of the guideline development process now meaning new guidance will not be published until December 2020, we are dismayed that the existing recommendation for GET will remain in place with no caveat until then. The evidence we have provided, including a number of surveys, demonstrates that many patients are harmed by GET. Allowing this to go unchecked means more people with ME will be avoidably harmed during this time. 

In January of last year, Forward ME, of which #MEAction is a member, commissioned and advised on a survey by Oxford Brookes University. It demonstrated that more than 3 times as many people with ME reported severe illness after receiving GET than before, and added further evidence confirming that a majority of people with ME deteriorate following GET. 

We want NICE to know this and to see the human suffering behind their decisions. Despite patients speaking loud and clear, NICE have refused to recognise the importance of the issue and take action.

Join us in saying to NICE: “Take ME Seriously”

We’re sending Dr Paul Chrisp and NICE a giant card, full of all our messages so that they see us, see the damage the existing guidelines have caused, and see that we will not sit meekly by.

Have the existing guidelines harmed you in any way? Have you been promised improvement if you undergo GET or CBT only to find you deteriorated? 

1. Write your message or add your signature below

We’ll add it to the giant card, and send it to Paul Chrisp and NICE. Please, do send us your messages by Valentine’s Day – 14th February via this link or the form below

Feel free to write in from around the world – NICE knows, and so do we, that their guidance has a global impact.

Here are some messages that we at #MEAction UK are writing on the card:

“I undertook CBT because your guidelines said that was the best hope for getting better. My therapist promised I’d be better by Christmas. Instead, I was significantly worse and dealing with anxiety around not managing the activities my therapist said I should be able to. I’m still ill 7 years later. Your guidelines are meant to protect people from harm, not cause it. Take ME seriously, don’t let this harm continue for another year.” – Sian Leary, Sheffield

“The rheumatologist who diagnosed me told me to “keep walking and exercise if I wanted to get better” and in my report, he wrote, “I’m very interested the patient is attending counselling for postnatal PTSD”. All because of the current guidelines by NICE. If I was told to rest from the beginning, I’m sure I wouldn’t be as bad as I am now”. – Carly Hearn, Southampton

2. Tweet at NICE to make your voice heard

Click below and you’ll be able to tweet at NICE in just two clicks!