#MEAction: Tell your Doctor that GET is gone

[Sly Saint]

"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)."

"
#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 uk@meaction.net "

https://www.meaction.net/2021/11/09/tell-your-doctor-that-get-is-gone/

 

[DokaGirl]

I was relieved and very happy to see GET is gone. And, was thinking about sending the new guidelines to institutions in my country, but after reading criticisms of this guideline, and the potential for GETers to just rename it and carry on, I'm not sure about sending the guidelines out.

What do others think?

Plus, the Invest in ME commentary on the guideline has excellent points, as in: Is that all you've got after 14 years?

I do very much appreciate the MEAction UK plans, but am wondering what will happen from there. It's of course of paramount need to get rid of GET, which I think the new guidelines do. I recall though a Member here saying there is still mention of rehab and exercise, which I found concerning and deflating.

 

[Trish]

Member here saying there is still mention of rehab and exercise, which I found concerning and deflating.

Physical activity and exercise programs are still included, but with the clear proviso that it's done within the person's energy limits. And it's only to be made available if the person with ME wants it. That's very different from GET being the standard treatment. While I agree that it's not perfect, it's a huge improvement on the old guideline.

 

[DokaGirl]

Hi @Trish
Thanks very much for clarifying!

Canada needs more detailed guidelines.

The UK guidelines would be a good example for here. It's likely each Province and Territory has their own guidelines, but also likely they are not detailed.

I think medical personnel in Canada depend to a certain extent on CDC guidelines, but we need our own as well.

 

[Barry]

Physical activity and exercise programs are still included, but with the clear proviso that it's done within the person's energy limits. And it's only to be made available if the person with ME wants it. That's very different from GET being the standard treatment. While I agree that it's not perfect, it's a huge improvement on the old guideline.

Absolutely. Sensible pacing incorporates physical activity and exercise, strictly within the individual's limits. It is the way it is framed that makes all the difference.

 

[Trish]

Sensible pacing incorporates physical activity and exercise, strictly within the individual's limits.

I think the use of the word exercise in the context of pacing is misleading and should be avoided, since it tends to be understood both by lay people and clinicians to mean activity done specifically in order to 'exercise' the body, rather than to achieve necessary activities of daily life. That is a luxury most pwME can only dream of.

 

[Barry]

I think the use of the word exercise in the context of pacing is misleading and should be avoided, since it tends to be understood both by lay people and clinicians to mean activity done specifically in order to 'exercise' the body, rather than to achieve necessary activities of daily life. That is a luxury most pwME can only dream of.

Yes, I do agree that the word "exercise" is readily misconstrued to mean whatever anyone wants it to mean, and its intended meaning can morph as it gets passed around.

 

[Sly Saint]

from an email

"
Activism works! On November 12th, just a few days after #MEAction UK launched their Dear Doctor Campaign, the National Institute of Health and Care Excellence (@NICEGetInvolved) retweeted the campaign and shared their thanks for #MEAction UK’s work to educate the medical establishment about the new guideline. This is not only proof that activism works, it is also a cause for celebration and a reminder that the work we are doing makes a difference!"