We want to make a spectacle of ourselves during ME Awareness Week!
It's time to make a spectacle of ourselves – by putting our stand on the new NICE Guideline on ME/CFS into the public arena. The ME Association is carrying out a major check-up on what is happening to the specialist ME/CFS referral services throughout the UK and how they are implementing (or not implementing) the recommendations in the new NICE guideline.
We now need to wake up the mainstream press and broadcasters by telling them what is happening.
During ME Awareness Week from 9th to 15th May, we'll be singing the praises of those services that have gone out of their way to introduce the new thinking into their everyday practices. Giving credit where it's due. Looking for best practice.
And showing up those services who are not implementing the guideline recommendations in the way that NICE intended.
To do this, we need your help.
Let us know what's happening with your ME/CFS services. Be as frank as you like and let us know if you need us to protect you by not revealing your identity. Let us know if the service you used to use is no longer available because it's been stripped out of play by the pandemic. And let us know if you are trying to get a service set up where none currently exists.
Tell us about the waiting lists. The awful experiences. The brilliance, if you can find it. Keep it topical, not historical. We need to know what has happened to you in the last few months – not in the dim and distant past!
If you happen to have joined our community because your Long Covid looks so much like ME/CFS, or you might even have been diagnosed with ME/CFS after a Covid infection, we also want to hear from you.
A tsunami of Long Covid has flowed down the tracks in the past two years, with the numbers still growing every day. Long Covid clinics have been set up in some parts of the UK but not in others. But are you people getting the services you need to help you get better?
So your thoughts, please, to us – as quickly as you can.
The aim is to get your information published in a slew of consumer and health magazines in April, followed by a campaign in the mainstream press and broadcasters in May. Then following through afterwards.
It's best to email us at Feedback@meassociation.org.uk putting Guideline Campaign in the subject line.
Don't forget to give us your full name and phone number, even where we promise not to use them because you don't want to reveal your identity. We may well need to get back to you to check certain points.
We're really serious about this campaign. But it will only work if you give us the facts as you've experienced them at the grassroots.
Remember our email: Feedback@meassociation.org.uk
Please don't forget to write!