Stripy Lightbulb CIC

11.8K posts

Stripy Lightbulb CIC banner
Stripy Lightbulb CIC

Stripy Lightbulb CIC

@StripyLightCIC

Evidence-based #CPD #mecfs #etraining for #employers, #healthcare and #education professionals and orgs. M.E.-Friendly Hospital Charter - https://t.co/Dr0aLqZSse

Portsmouth, UK Katılım Eylül 2018
1.7K Takip Edilen2.3K Takipçiler
Sally Doherty writes 👩‍💻
Sally Doherty writes 👩‍💻@Sally_writes·
Can’t quite believe there’s actually a Graham Potato. AND that I managed to get my hands on one Kinda want to keep him for myself but am going to gift him to my mum. My potato-obsessed Dad AKA Graham would have found it hilarious
Sally Doherty writes 👩‍💻 tweet mediaSally Doherty writes 👩‍💻 tweet media
English
5
0
80
1.7K
Stripy Lightbulb CIC retweetledi
Canary
Canary@TheCanaryUK·
A parliamentary debate just highlighted the gaping holes in NHS care for EDS and CCI patients MPs turned out to call on the government to address the abysmal lack of NHS diagnosis and medical care services for people living with EDS. @h_sharland reports: thecanary.co/uk/analysis/20… thecanary.co/uk/analysis/20…
English
0
17
29
805
Steve Darling MP
Steve Darling MP@SteveDarlingMP·
Increasing investment in the 'Access to Work' scheme would unlock the positive potential of the disabled workforce to stimulate growth. The 'Access to Work: Employment that Works' report shows that the scheme currently helps to keep up to 50,000 disabled people in work and saves the taxpayer nearly £70 million. By investing in the scheme the Government can help disabled people get into and stay in the jobs they love and reinvigorate our national economy at the same time. politics.co.uk/mp-comment/202…
English
4
2
10
273
Stripy Lightbulb CIC retweetledi
Cat Fraser
Cat Fraser@catsocialintel·
@LCCampaign @LongCLand @LC_Physio @Longcovidjourne @LongCovid_Spain @LCAIreland @LongCovidAdvoc @LCawarenessInt @ProgIntl @ExponentialView @BeAirAware @SalWitcher @meadwaj @GreenRupertRead @dwallacewells @JimBethell @KeepBritWorking @SupportingHH_UK @WorkingWithLC @crr7310 @VerdantThinking @JamesThrot @mattprescott @natalieben @DarrenBar88 @AnciraBecky @sunsopeningband @alanbarnard1 @erbrooker @HeartOfThe_Arts @NickyProctor @1goodtern @CovidSolidarit1 @_CatintheHat @Saffiya_Khan1 Five days left until our first submission deadline - add your name at protecthumanbiosystems.world
English
1
6
4
372
Stripy Lightbulb CIC retweetledi
Sabrina Poirier (On Hiatus) 🇨🇦
Sabrina Poirier (On Hiatus) 🇨🇦@Sabrina_Poirier·
There is an organized disinformation campaign against the ME community. It’s been ongoing for years. Bots/nameless accounts attacking us, sharing incorrect info, sowing division, misrepresenting studies, etc. I just blocked another bunch of these types. Please do the same.
English
4
10
74
1.3K
Stripy Lightbulb CIC retweetledi
Todd Davenport
Todd Davenport@sunsopeningband·
Fun fact for folks keeping track of their lactates at home: 8 mmol/L is a criterion for maximal exertion on a cardiopulmonary exercise test. Judging from some of your measurements, you’re already exerting at that level just getting out of bed to take your first test. #TheAcidTest
English
9
93
414
57K
Stripy Lightbulb CIC retweetledi
Lou Today
Lou Today@louise_today·
No One is Immune. . x.com/WheelieFUMS/st…
Wheelie MS Advocate - #PoweredByWheels - ♿️@WheelieFUMS

When politicians talk about “drawing a line” on disability, they’re not just talking about other people, they’re talking about a future that any of us could face. Disability can happen to anyone. And the system we build today is the one we might rely on tomorrow. No one is immune. #DisabilityAwareness #PIP #UniversalCredit #ChronicIllness #DisabilityRights

English
0
1
2
81
Stripy Lightbulb CIC retweetledi
Anil van der Zee ©
Anil van der Zee ©@AnilvanderZee·
Prof. Scheibenbogen today on the rehabilitation study: "The result is shocking. Despite tailored rehab, there was no improvement in disease severity or symptom severity. Rehab was rated as helpful, but 43% of patients even worsened. Improvement occurred in only 15% of patients."
Sam@HumanManifold

Prof. Scheibenbogen heute zur Reha-Studie: Das Ergebnis ist erschütternd. Trotz zugeschnittener Reha keine Verbesserung in Krankheits- und Symptomschwere. Reha wurde zwar als hilfreich befunden, aber 43% verschlechterten sich sogar. Besserung nur bei 15% der Patienten.

English
8
51
175
11.3K
Stripy Lightbulb CIC retweetledi
Naomi Harvey “PhD Witch” #WearAMask
Naomi Harvey “PhD Witch” #WearAMask@Naomi_D_Harvey·
I’m trying not to get angry at the people who are arguing this with experts. It’s not their fault really, because the literature around this is a mess. But please, if you don’t fully understand a topic, just listen to the experts. PEM is unique to ME/CFS.
Naomi Harvey “PhD Witch” #WearAMask@Naomi_D_Harvey

@Lwardo4 It’s not your fault you’re confused, as so many people have co-opted the language used around PEM and have incorrectly applied the term to other diseases that experience disproportionate responses to exertion, but they’re wrong, that’s not what PEM is.

English
8
15
128
7.8K
Stripy Lightbulb CIC
Stripy Lightbulb CIC@StripyLightCIC·
We are looking for a volunteer to help with our (currently private) 2026 project. Just enjoyed a meeting with Courteney from UoP's Employability/Volunteering service. Onwards and upwards!
English
0
1
1
118
Elisabeth Klaar
Elisabeth Klaar@lammas_leaves·
@Naomi_D_Harvey This would be useful for at least two things I'm working on, and likely for @NickyProctor and some training materials she's making for GPs, too. @StripyLightCIC don't suppose this sort of graphic/info is something your training includes? Even if not in graphic form.
English
2
0
3
32
Naomi Harvey “PhD Witch” #WearAMask
Naomi Harvey “PhD Witch” #WearAMask@Naomi_D_Harvey·
Anyone know of a good infographic that could help with explaining the cost ME patients can face for attending doctors appointments in person? @lammas_leaves maybe?
Miss Teak@MTeak24812

@Sabrina_Poirier @Naomi_D_Harvey @ishbelfrazer I’m wondering if anyone has a good resource in slide format or infographic to use as an add-on for GP training modules. It’s the biggest hurdle I face accessing primary care: they think attending appointments = feeling tired afterwards.

English
4
4
25
1.5K
Stripy Lightbulb CIC retweetledi
Atlanta Rey 🇪🇸🇬🇧🇨🇺🇪🇺 ✨
Atlanta Rey 🇪🇸🇬🇧🇨🇺🇪🇺 ✨@areyoflight·
🚨 HOW many goddamn times do we need to keep saying this ⁉️ PIP IS NOT AN OUT-OF-WORK BENEFIT ‼️‼️‼️ It can be claimed whether you work or not! It’s to pay for the extra costs incurred by having a disability! Why are people so damn ignorant? 😡
English
59
398
1.4K
50.5K
Stripy Lightbulb CIC retweetledi
Naomi Harvey “PhD Witch” #WearAMask
Naomi Harvey “PhD Witch” #WearAMask@Naomi_D_Harvey·
@Lwardo4 It’s not your fault you’re confused, as so many people have co-opted the language used around PEM and have incorrectly applied the term to other diseases that experience disproportionate responses to exertion, but they’re wrong, that’s not what PEM is.
English
3
3
59
4.7K
Stripy Lightbulb CIC retweetledi
Bubblejet
Bubblejet@Bubblejet·
I'm housebound. When I have a hospital appointment, I have to go by ambulance, on a stretcher. How does #Tory MP #HelenWhately think I can get to a centre for face to face #PIP assessments? She's either clueless about what #disability can be OR she's deliberately whipping up hate
English
34
96
447
8.7K
stuart murdoch
stuart murdoch@nee_massey·
In the article about ME/CFS I posted about, a doctor in Wales is quoted as saying "Doctors aren't taught about this condition.” We all know this of course. I’d like to ask the medical community “What the fuck are you waiting for?”
English
24
53
325
12.1K

Keşfet

@Sally_writes @chaniedavies @h_sharland @SteveDarlingMP @CraftyMissB @LCCampaign @LongCLand @LC_Physio