#MEAction:Troubled by NICE guidelines? Three easy ways you can help

[AndyPR]

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.

The three ways they suggest are;

1. Sign the ME Association’s Petition
2. Join the #NICEisnotnicetoME Social Media Campaign
3. a Personalised Letter to Your MP in 5 Minutes.

Details on all options at link - http://www.meaction.net/2017/07/12/troubled-by-nice-guidelines-three-easy-ways-you-can-help/

 

[emsho]

@AndyPR thanks for sharing. I've been allowed to take over the MEActionUk twitter for a week to promote the #NICEisnotnicetoME campaign. The idea is that if you've been harmed by GET you share your picture @NICE and use the #NICEisnotnicetoME.

Charities are all submitting official responses, there's the ME association petition and draft letter to send to your MP. The social media campaign is to put faces to the harms of GET and get some awareness. Tanya (the woman who came up with the #NICEisnotnicetoME) and I have both been harmed by GET so this is something close to our hearts. If you've been harmed by GET and are happy to share your photo or story on twitter/instagram will you message it to me? Also please share/re-tweet if you have twitter (does someone here run the Phoenix Rising one?)

 

[AndyPR]

Also please share/re-tweet if you have twitter (does someone here run the Phoenix Rising one?)

@Kina , I think, is one of the guardians of the PR social media.

 

[Undisclosed]

@Kina , I think, is one of the guardians of the PR social media.

I am indeed.

@emsho Start a Conversation with me to let me know how we can help.

 

[Abha]

The three ways they suggest are;

1. Sign the ME Association’s Petition
2. Join the #NICEisnotnicetoME Social Media Campaign
3. a Personalised Letter to Your MP in 5 Minutes.

Details on all options at link - http://www.meaction.net/2017/07/12/troubled-by-nice-guidelines-three-easy-ways-you-can-help/

Hi Andy,

I have just written a lengthy reply to my local MLA(in NI) re this topic.I'm a senior citizen now. Back in the 1980s here there was some hope for ME/CFS but that has all faded away!A clinic was set up then but as far as I know that no longer exists and few GPs/consultants are interested in such a topic.Hopefully this action will bear some fruit!

 

[AndyPR]

@emsho , in case this is useful, this is something I worked out for the campaign to write letters to prospective MPs before the recent General Election.

If anybody wants to use this but needs to adapt the constituency prevalence and economic burden figures then all I did was to use Wikipedia to look up the constituency to find out the population figure (it actually gives the electorate figure but I thought that would be good enough).
For prevalence, multiply the population by 0.004 (e.g. 77,020 x 0.004 = 308 PwME)
For economic costs, multiply constituency figure by £25,600 (e.g. 308 x £25,600 = £7,884,800 per year)

Using this, people can work out the prevalence and economic burden of ME in their constituency.