People with ME in Leeds welcome the new NICE guidelines

Last month The National Institute for Health and Care Excellence (NICE) published their long awaited update of the ME/CFS guidelines. Following years of campaigning led by #MEAction UK many notable key changes were made.

In August NICE delayed the publication of the guideline following concerns raised by a few Royal Colleges. In response to the concerns they held a roundtable event to invite open discussion surrounding various key areas.

The majority of the ME commuinity are pleased that the final guideline is a step forward towards better treatment for people with ME. An enormous amount of work has been done by #MEAction UK and various other groups to ensure the update of the guidelines over recent years.

Most notably, Graded Exercise Therapy (GET) has been officially recognised to cause significant harm and should not be offered to people with ME.

Across Leeds many have welcomed the news of the new guideline. Leeds ME Network said:

“It’s great that NICE are no longer recommending graded exercise therapy for people with ME. Based on the evidence, they could hardly come to any other conclusion. However, it will be necessary for health professionals to be willing to implement this change and to judge by some recent pronouncements this can’t be assured. So this is a step forward but there may still be a long way to go before ME is acknowledged and treated appropriately.”

Simon and Chris, Leeds ME Network founders.

Key recommendations of the new NICE guidelines

  • Removal of GET as a treatment of ME/CFS.
  • The acknowledgement of the prejudice and disbelief that people with ME have suffered and the impact that being stigmatised by people who do not understand the illness could have on how people are treated by health and social care services.
  • Separate recommendations for those with severe/very severe ME and children and young people will be critical in ensuring that these groups of patient start to receive the support they need.
  • The opportunity to access care and support through methods such as phone calls, online consultations or home visits will make a real difference to patients struggling with in-person appointments.
  • The recommendation to supply aids and adaptations without delay will be a major benefit to those who need access to this type of support.
  • Acknowledgement that CBT is not curative and should only be used to help manage living with a chronic illness is important.

“What surprised me was the amount of agreement in the room. The guideline was produced by consensus and was signed off by the whole committee. I feel that’s a big achievement and proof that we struck the right balance. 

“It was an honour to be part of such a thorough, transparent and professional process. Discussions weren’t always easy, but they were always handled with mutual respect and an earnest passion for helping the people affected by ME.”

Adam Lowe, patient representative on the NICE guideline committee.

Read the new NICE ME/CFS guideline in full here.

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