Katy B DecodeME the ME/CFS Study NICE Well said, Katy. Once again, the responsibility is dumped on us. Self-expression &/or Self‑management without real advocacy just leaves people unsupported and exhausted. That’s not empowerment. It’s ridiculous.

8 years later… 8 YEARS!! Patients and charities are still asking for: - training for medical professionals - healthcare specialists in ME to lead services - funding for biomedical research What do patients have to do to be heard? Wes Streeting Sharon Hodgson

For the #ME orgs especially, most recently ME Association #pwME #MEAwareness #MEcfs

ME Association I just read your post and some replies on Facebook about letters of hope. I thought it was unreasonable to ask the most affected to expend energy. Having looked, the campaign seems to be poorly planned too, rendering the energy expenditure of little use. 1/4

Please do better. We need your help. Signed by one ME patient who knows that you won’t reply and that you probably won’t even see this message because you choose not to engage with us here, where the truth is spoken and real hope is needed. 4/4

This is one of the people in the #BBC appeal organised by Action for ME scheduled for April 26th - Cambridge ME Group's very own Chair, Mark Harper. I can't think of a better person - his commitment shown here driving around town with a home made billboard to raise awareness!

Hi Mike! 👋 Mike Scialom You may be interested - chair of Cambridge #MECFS group, Mark Harper, who you've interviewed before, is taking part in national #BBC TV appeal for more research and funding for care. It's organised by Action for ME and is live on 26th April.

NHS England Workforce, Training and Education Thank you for taking some action to improve awareness of these e-learning modules. Please can you also influence to address 2 outstanding issues with the NHS website information about ME/CFS. nhs.uk/conditions/chr… 🧵/1

NHS England Workforce, Training and Education NICE 🧵/10 of 10 So… In line with advertising updated e-learning modules for ME/CFS Please also update the basic NHS website information to be consistent with current understanding of ME/CFS. Updating web is in the Delivery Plan for ME/CFS marked as complete, but is not. Thank U.

Dear #ME community. I’d really appreciate your support with this request… Someone somewhere has influenced so that these e-learning modules (finally) are advertised. Perhaps they will hear this request to update website information & be able to enact it? Pls RT thread 👇

Sharon Hodgson Department of Health and Social Care DHSC Media Centre NHS England Transformation @NHS NHS England ME Association Action for ME Healthwatch England

This is the disgusting abuse that disabled people put up with everyday.👇 1. I rely on delivery services on days I’m too unwell to function. 2. Chronic illnesses have good days and bad days. What you can do one day may not be possible the next day. 3. Unless you have their

Quote of the day 👇

From a friend. I don’t know who made it. It’s so very true, I’m sure all people with #ME #MECFS #POTS will sadly be able to relate to it.

It feels amazing & unique to see a patient bravely stand up to those who are actively harming all patients, in person & saying what needs to be said loud & clear We're so used to messaging being so tame polite inoffensive, there's a place for that but we need so much more of this

They are treating him as a psychiatric patient having an ‘episode’. It’s got a lot of coverage on sm, let’s hope for more of the same. I think a lot of us don’t even dare to feel just how angry we are. Layer upon layer of it. #LongCovid #ME

Apparently expecting MPs on £98k salary to stay sober while making huge decisions for the country is now controversial.

Have now followed this up AGAIN with a resend of my previous email thread requesting clarity on their position re text chat options at Zoom meetings.. ME Association When will a response will be coming? #ReasonableAdjustment #EqualityAct2010 #Inclusion #MECFS #pwME

Why do #pwME have to work SO hard to get a response from ME Association??

ME Association Does this include ability to participate in your AGM via text chat?! Is that a 'service'?