[ME Association] Raising Awareness of Severe ME – A Call for Case Studies [deadline Weds 24th July]

www.meassociation.org.uk/2019/07/raising-awareness-of-severe-me-a-call-for-case-studies-10-july-2019/

 

Thanks to the ME Association for doing this.

Why not make this optional? Isn't it possible to report pwME's stories anonymized?
I think being exposed on newspapers and social media with their real identity will unnecessarily stress people.

 

Is benefits different from social care here?
As someone 100% bedridden I dont actually have problems getting benefits , enough social care is another matter but I’m not going to talk to the press on it in the way requested. Should point out my mum fills in the pages and pages Of benefits forms on my behalf.
I’m glad severe ME day is getting some recognition. I’m not sure if benefits is a safe angle for charities to make some Yearly “noise for the severe”on. I had encounter on MEA yesterday with the chairman over his piece for their magazine saying after initial phase people should rise up from bed and walk... no matter how they feel (paraphrase), which I felt could have been done more sensitively to those chronically bedridden, so they could do with improving their own consideration of severe ME matters too.
Regarding benefits I don’t know if that’s more an issue for the moderate who can’t work but can still walk etc, trying to convince people regarding the unpredictable nature, issues with payback etc and that they’re actually ill in a climate of skeptism.

 

Apparently the benefits angle is supposed to be a hook to get in the press. Unfortunately having watched the scene for a few decades now I’m skeptical that a couple of random severe ME case studies in papers is going to change anything in a meaningful way, any more than previous years have, and a couple of years ago a young severely ill mum bravely put her moving story across the press, but nothing changes.

You need real long term campaigns on specific areas and representation of the whole severe community with stats on numbers affected, length of time severe, age range, extent of debility , evidence of lack of research, evidence of lack of services, pictures of poorly children and then a focus on key things you want to see changed ie we are calling for all uk CFS services to cater for the needs of the severe with some form of outreach and access to expert advice or we want to see specific measures taken to encourage researchers to get involved in this area. I personally don’t think that benefits or social care barriers can really be addressed easily in a media way but again if it were, what are the key things needed to change to make this better and what steps are the community representatives going to take to reach it etc. I think that too much of what’s being done is superficial token gestures rather than actionable plans for progress.