WHY WE NEED TO KEEP FIGHTING - STILL

 Bonjour, 

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 :-

Why we need to keep fighting 

Positive thinking 

I pushed too far 

I look back 

You said that I'm afraid

I have shared my story and experiences which you can read in these blogs:-

My story for M.E. awareness week

Meet the author 

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 

Jenny Wilson is looking urgently for testimonies that offer some kind of ‘proof’ that graded exercise therapy has harmed people with ME. Your story might be just the one she needs. Apparently they need approx 50 case stories ready to go, and the stakes couldn’t be higher. If you can give a rough idea of dates and any ‘evidence’ connecting the treatment specifically with your deterioration, along with any evidence of deterioration (eg you had to claim welfare benefits, or you had to drop work hours, or you needed to go into hospital / GP can corroborate etc) then that’s even better, but anything is good. Maybe 100-200 words, or whatever you can manage Please email to mkjennywilson@gmail.com and cc in me at tanyamarlow@hotmail.com

Enter

Tanya

(Needs to have an email address associated with it)

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 

We are all part of a big community and every little bit helps. Do what you feel able and no more. We must keep fighting. This has to end. Please help in any way you can. Thank you 

A bientot
The French Femme
xxx