Not only do we need pushback from the ME charities now as the offensive begins but we will also need practical support to get through what could be an anxious and dark time where yet again #pwME will be vilified and misrepresented. /1

@MEAssociation @actionforme @MEActNetUK
It is always such a fight to be heard and taken seriously and whislt we may have some success with the new NICE guidelines if GPs still resist this what really will change? How many people in the community will feel shattered by the BPS offensive that has already started /2
Potentially to the point that both their physical and mental health suffer? Sadly I see more harm in the short term rather than less unless our charities have something up their sleeve. So we need guidance, advocacy and pastoral support to step up a gear in the coming weeks /3
We also as an online #MECFS community need to help each other too with all of this. Not just by advocating but being there and holding a space for people who might not be coping so well with the fallout of this particular battle. /4
So if it gets tough for you know that I will be here to listen and hold a space. DMs are always open. I reply when I can (energy permitting). This disease is tough enough without being a political football and we have been kicked around enough /End

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More from @KirstieWrites

17 Aug
If you or someone else has been harmed by GET please share on here. This is from someone on FB.

"My daughter had GET and her health deteriorated. She needed to use a wheelchair. Didn’t manage school and was unable to complete her education."

#GETstories
#GETharms

#MECFS
Story above continues: "just also like to add that the physiotherapist stopped GET when she saw my daughter deteriorating and the paediatrician agreed with her decision.

#GETstories
#GETharms
#MECFS
We kept activity charts when doing GET and the physiotherapist could see from the charts the harmful impact exercise was having on my daughter. The charts showed a clear pattern which was much easier to visualise than if we had just talked about it"

#GETstories
#GETharms
#MECFS
Read 31 tweets
16 Aug
Have an ultrasound on my throat booked for next week so I wondering that as it gets worse the more I do/move then should I do exert myself more before the test to show the reaction or do what I normally do and rest?
I am thinking of the analogy of stress testing /1
As #MECFS can fluctuate then does that mean that any potential markers will be less evident on a good day, the same way a heart might not show anything until measured whilst under exertion. If so it would make sense to increase exertion before any tests? /2
Could be risky in terms of PEM but otherwise I worry it could be the same old story - "mild inflammation"/nothing to worry about. There is also making myself worse for a test feels wrong in some way like I am trying to make it happen but is that doing myself a disservice? /3
Read 4 tweets

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