Evidence-based #CPD #mecfs #etraining for #employers, #healthcare and #education professionals and orgs. M.E.-Friendly Hospital Charter - bit.ly/40wBTyM
Joined September 2018
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31 Oct 2024
Please share widely.
The 'M.E-Friendly Hospital Charter' and all associated content can now be found in one place on our website!
Check it out! stripylightbulb.com/me-frien…
#NhS #Healthcare #pwME
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Our staff are now on annual leave until Monday 13th June.
However, our training is fully automated and learners can sign up whether we are in the office or not!
The most commonly asked questions are answered in our out of office autoreply emails 😊
Back soon!
#Training
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Stripy Lightbulb CIC retweeted
Being a carer for a disabled person is incredibly hard, but there is a world of a difference between carers who think it’s hard because the disabled person is a burden and those who think it’s hard because the state has abandoned disabled people
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Stripy Lightbulb CIC retweeted
Jun 4
"Mencap, Mind & National Autistic Society warn could lead to “the biggest rollback of disability rights in a generation”."
All deeply worrying especially in context of so much care now provided by private profit companies rather than safe, appropriate & compassion driven care.
Jun 3
Charities Mencap, Mind and the National Autistic Society warn this could lead to “the biggest rollback of disability rights in a generation”.
I am questioning the government on how it plans to respond
nataliebennett.org/2026/06/0…
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It shouldn't be this hard.
'We confirm that we do not hold the information you have requested.'
And on it goes again, 3rd cycle of FOIs.
#MEcfs
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Stripy Lightbulb CIC retweeted
I've lived through decades of 'yuppie flu', 'mind/body', lifestyle this n that, positivity, lightning process, gupta... plus seen tired, determined sick people slowly fund the research needed to challenge these attitudes.
Just for it to be ignored.
I AM SO BORED.
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Stripy Lightbulb CIC retweeted
May 31
#Oliverscampaign
It has come to my attention that some providers delivering the Oliver McGowan Mandatory Training are charging NHS & social care organisations excessive & unjustifiable fees
The focus must remain on ensuring that the training is accessible affordable & available
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If people with lived experience say there is a need for XYZ, there is a need for XYZ.
Funders, you need to work to understand/see the need NOT decline funding out of hand.
Lived experience is a valuable resource.
#SocEnt
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Really interesting session.
Lovely to 'meet' other VCSEs experiencing similar difficulties tackling different causes.
Very insightful 🙏
Looking forward to participating in this session this morning. Always happy to listen to and learn from other social enterprises / organisations working in these uncertain times..
ivar.org.uk/leading-in-uncer…
#SocEnt
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People who promote the mind-body approach to chronic illness seem to think they are doing something novel, and no one has ever thought of it before.
But patients have been bombarded with it for 40 years.
It is usually the only thing we are offered, and it rarely helps.
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Follow or subscribe to Stripy Lightbulb CIC on X, Facebook, YouTube or LinkedIn for expert ME/CFS training, insights and updates helping improve care and understanding.
#SocialEnterprise #Health #Training
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Looking forward to participating in this session this morning. Always happy to listen to and learn from other social enterprises / organisations working in these uncertain times..
ivar.org.uk/leading-in-uncer…
#SocEnt
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Stripy Lightbulb CIC retweeted
Coming back to the DWP Fit Note Reform report after a week off (I have chronic illness and being able to tweet some quotes from a report is not the same as being able to work consistently):
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Stripy Lightbulb CIC retweeted
May 29
british understatement is unique and i love it. if you work with brits you absolutely have to understand the translation:
"this is probably not ideal" -> this is on fire
"it might be worth reconsidering" -> stop, do not ship this
"i have some minor concerns" -> i have been thinking about nothing else for four days
once you crack the code the feedback is actually some of the most precise communication you will encounter.
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The focus group is today.
Thank you to all who contributed 🫶💙
Our lived experience, training content, Charter work, and MANY interactions with pwME over the years on this issue will inform our participation today.
stripylightbulb.com/2026/05/…
#MEcfs
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This morning, we were part of a group session on 'How to do co-production'.
This NHS group has done some very good co-production work and we are now creating a kind of 'how to' for others to use as a template.
With this in mind....
We are exiting groups that do not
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'do' good co-production.
If any groups we are part of do not allow input of participants to be considered, a change of direction, or equality across the group - we are no longer interested.
It feels like, by being part of these groups, we are validating poor co-production🤷
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Stripy Lightbulb CIC retweeted
May 25
Guess who went downstairs to the garden yesterday morning🥹😍😭
Mum and dad made it happen (as did the wheelchairs, stairlift, ramp, bed, and spending the rest of the day and today in the dark sleeping & resting).
It was bloody magical, I cannot explain how much it meant.
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Stripy Lightbulb CIC retweeted
#GMB presenter declares: "The welfare bill is so huge"
Except as Kevin Maguire pointed out on the same program earlier this month, it's about 10.6% of GDP & as a proportion that's lower than most other European countries.
Kwasi Kwarteng says the welfare bill is unsustainable.
Kevin Maguire points out the welfare bill is about 10.6% of GDP, as a proportion that's lower than most other European countries, and the majority of it goes on pensions #GMB
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Stripy Lightbulb CIC retweeted
May 23
BMJ Rapid Response: Experts reject dangerous psychosomatic claims in BMJ, framing severe ME/CFS as a biological multi-system illness. PEM is a measurable reality, not a belief. Patients need biomedical science. bmj.com/content/389/bmj.r977…
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