Tell your Doctor that GET is gone

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The updated NICE guideline on ME/CFS contains substantial changes that alter the treatment and management of people with ME in England and Wales*. We need your help to tell doctors and other medical staff that the recommended treatments for people with ME have changed. We want to get the message out that there are new recommendations on the way people with ME can be supported, but they should not offer harmful treatments like Graded Exercise Therapy (GET).

Thank you to the people with ME starring in this video. By sharing this with medical professionals, we hope they will realise they can help people with ME.

#MEAction UK is calling on the ME community to get this message out to GPs across the country. This is a first step. Significantly more work will need to be done creating new training modules, reaching out to medical schools and other educators, and ensuring the co-creation of services with people with ME. But we have power in our numbers, and the thousands of people who engage, so let’s take this first simple action. 

Together, we can reach GPs and medical professionals all across the country, and share the new guideline with them.

Take these three steps:

  1. Google your GP practice and see if they have an email address
  2. Copy and paste the template into an email to your practice
  3. Make any changes you would like, such as adding your own story, and press send

If you can’t find an email address for your GP practice, can you print out the letter and post it instead?

Can’t post it? Email it to your local newspaper. Tell them you wanted to share it with your GP but they don’t have a way for patients to email them. 

Need help? Email us at [email protected] 

*Our #MEAction Scotland team are campaigning to get an urgent meeting with the Scottish Minister for Health to discuss how soon a new guideline for Scotland can be developed, based on the NICE guideline. We’ll update you as soon as we have more information.

Let us know if you get a response by emailing [email protected] it or filling in the form at the bottom of this page. 

Dear Doctor - email template

Subject: New NICE guideline on ME/CFS

Dear [insert your doctor’s name, or the name of the GP practice]

The new NICE guideline on ME/CFS was published in October. The guideline contains new recommendations on the treatment and management for people suffering from ME/CFS in England and Wales. I am writing to ask you to read it to help patients like me who suffer from this debilitating disease.

Read the guideline here: nice.org.uk/guidance/ng206 

I’d like to draw your attention to five key recommendations in the guideline that I think will help health professions support patients like me: 

  1. Understand and recognise that people with ME may have experienced prejudice and disbelief and could feel stigmatised by people (including family, friends, health and social care professionals and teachers) who do not understand their illness
  2. Do not offer any programme that uses fixed incremental increases in physical activity or exercise, for example, graded exercise therapy. 
  3. Provide care flexibly to the person’s needs, such as by online or phone consultations or making home visits.
  4. Be aware of how to diagnose ME and be confident in recognising it. It is a fluctuating condition in which a person’s symptoms can change unpredictably in nature and severity over a day, week or longer.
  5. Signpost people to support groups, give advice on financial and social support, and access to aids and adaptations.

Please go meaction.net/medical-education to watch the Dear Doctor video, for education modules and to find out more about the new NICE guideline on ME/CFS. 

Yours sincerely,

[insert your name]

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