(NB This text is combined from the posts of the ME Action Website, authored by me – do sign up for their newsletter for similar calls to action).
When you go to the doctor, you expect treatment to help, not harm you.
But the NICE (NHS) guidelines for ME/CFS only recommend two main therapies for ME: Graded Exercise Therapy (GET – which asks you to gradually increase your exercise each week, ignoring any worsening symptoms) and Cognitive Behavioural Therapy (CBT).
The majority of ME patients testify that GET makes them worse, not better – even sometimes causing permanent disability. Rest and pacing their energy helps them the most. The NICE guidelines advise the opposite – it claims there are no risks to GET and warns instead of the dangers of rest.
UK ME patients have been waiting patiently for ten years for the NICE guidelines to be revised. This week, NICE have announced they plan to keep them the same. We have a week left to persuade them to change their minds.
HOW TO HELP
You may be asking, what can I do to help? Here are three ways depending on how much time and energy you have:
Sign The ME Association’s petition for a full revision of the NICE Guidelines at Care.org. It takes approximately 30 seconds of your time. Click right now to do this, and remember to share on social media to increase the impact.
Join the #NICEisnotnicetoME social media campaign. As patients, we are increasingly conscious that when the public and media start to notice us, policies change, as has happened in America with the IOM report.
a) Find a picture of your favourite ME patient friend or relative (or yourself).
b) Tweet the picture with these suggested options to personalise:
- Does Graded Exercise harm ppl? We are the evidence. __ yrs of #MEcfs, made worse by GET. Pls change @NICEcomms guidelines #NICEisnotnicetoME
- [Name] has had ME for [XX] years. NHS’ Graded Exercise made [him/her] worse. Please change @NICEcomms Guidelines #NICEisnotnicetoME
- [Name]: [XX] yrs with #MEcfs. Graded Exercise made [him/her] worse. Please change @NICEcomms Guidelines #NICEisnotnicetoME
IMPORTANT: please be ultra-polite and appeal to people’s better nature. ME patients have often been smeared by false claims of harassment, so unfortunately we have to tread more carefully than most.
If you’re not on Twitter, do share on other social media, using the hashtag, and linking through to this blog post. (By sharing in this way, you are also giving #MEAction Network permission to use these images and messages as part of our campaign for NICE.)
Write your MP a personalised letter, with a fact sheet attached to it. Anyone can write a letter, and you don’t have to be a patient to do so. MPs have a responsibility to hold NICE to account for patient safety. Here’s how you can write a letter to your MP in just 5 minutes:
a) Click here, enter your postcode, and click on your MP’s email address to email them.
b) Copy, Paste, Edit. Copy and paste the text below in an email, and edit it to personalise it.
d) Click send – you’re done.
IMPORTANT: It is imperative that you add your own letter, however short, and not just the ME Factsheet, otherwise it is just spamming MPs with the same letter.
Reasons to review NICE guidelines could include: wanting to ban GET and CBT; wanting patients to be warned of the potential risks of GET; wanting better definition of the illness with post-exertional malaise as the cardinal feature; wanting to have antivirals or alternative therapies as an option for specialists to be able to prescribe; wanting pacing or rest as an option rather than ‘not recommended’; wanting to stop severe patients from only being offered ‘Activity Management (which is basically Graded Exercise at a lower level) – or something else. Pick your most important one. It doesn’t have to be long.
COPY, PASTE, EDIT:
Dear [name of MP]
I have / My friend/relative has had ME for [XX] years. Before they got ill, they loved to [XX]. Now they can only [XX].
The NICE guidelines need to be reviewed immediately because [____].
Please would you hold the NHS and government accountable for these flawed guidelines, and ask them to fully revise them immediately and place ME/CFS on the active list, to keep up with the latest biomedical research. Please see the attached factsheet from the #MEAction Network for more background and the specific requests.
[Your name AND residential address, so they know you’re a constituent]
Enc: Factsheet I endorse from ME Action Network: [see the Factsheet post, and cut and paste]
That’s it! Anything you can do will be of huge help, and has the potential to transform 250,000 lives in the UK.
- Which route do you have the energy and time for – Bronze, Silver or Gold? Let me know in the comments!