I hadn't intended to write another blog so soon after the last one but after hearing the announcement by NICE yesterday I feel highly motivated to respond through my blogs and my poetry.
This quite rightly has caused much anger and dismay in the M.E. community. For so long so many have been waiting for this update to acknowledge once and for all that GET(graded exercise therapy) and CBT(cognitive behavioural therapy) are not acceptable treatments for M.E. and that if anything they do harm.
I know it's hard to keep fighting but we can't give in and give up the fight against a small minority who try to bully us into a corner. We have a voice and must and should use it. Of course it's hard when we all suffer on a daily basis and have been doing so for year after year, seemingly with no end.
BUT we deserve and need better understanding, better care and treatment.
For so long there has been so much neglect and abuse of those who are chronically ill.
I have previously written blogs about how I feel :-
I have shared my story and experiences which you can read in these blogs:-
Recently I have also told my story in a podcast with the help of Millions Missing Podcast.
You can listen to my story here
This is my poem about GET & CBT
And another poem that is about exercise
These quotes remains as relevant as ever
Greg Crowhurst for Stonebird has made a very good response in a video on the failure to publish the NICE guideline on ME/CFS.
There is also a petition which you can sign 'Don't let vested interests perpetuate harmful treatments for ME/CFS'
If you have been harmed by graded exercise do you feel able to share your experience?
This is the message I have received and how you can share your experience
So what can you do?
- Share my blog and poems
- Share the video by Stonebird
- Sign the petition
- Listen to my testimony on the Millions Missing Podcast
- Share my testimony and that of others
- Consider sharing your testimony also in a podcast
- Share your testimony regarding your experience of graded exercise
- write to NICE
The French Femme