OMFCharityMugs

Severe ME/CFS patient since 2006, fundraising for the Open Medicine Foundation, all proceeds from all sales go directly to OMF, Worldwide shipping🩵

[Bateman Horne Center @BatemanHorne]

In Their Words

This August we're inviting people living with severe #MECFS and caregivers to share their stories.

Video, audio, written reflection, or image, whatever feels possible. Anonymous submissions welcome.

Deadline: Wednesday, Aug. 5: https://t.co/Hsn8Gu6Gh7

[ME Research UK @MEResearchUK]

"There are currently no plans to develop a separate specification for severe and very severe ME/CFS." Government rejects developing a NHS England-wide template service specification revealed in parliamentary answer. https://t.co/FpMWhyrcZI

[Carole Bruce @CaroleBruce17]

Caroline is on a stroke ward, they have absolutely no idea what to do with her. Only a flimsy sheet for blackout. They want to discharge her today despite her condition. She is one of a long line of very severe #ME patients for which there is no provision nor hope of it on NHS 😡

[davidtuller @davidtuller1]

And if you appreciate my work, consider a donation to UC Berkeley's current crowdfunding campaign for my Trial By Error project: https://t.co/Ad1zvdxXd4

[davidtuller @davidtuller1]

For ten years, I've been pushing back against problematic research suggesting that ME, ME/CFS, Long COVID and related illnesses are psyhosomatic, "functional," etc. I'm continuing the project through December. If you'd like to help out: https://t.co/Ad1zvdxXd4

[Anil van der Zee © @AnilvanderZee]

‼️ BURIED ALIVE WITH M.E.‼️

For ME Awareness Month I made a severe ME body‑bag “dance” film about death within the ME community.

https://t.co/viQ777mKCc

I also joined the online expo ME Kills by A Quiet Storm, which goes live on May 12th,

1/
#pwme #myalgicE #millionsmissing

[#MEAction Network UK @MEActNetUK]

This year #MillionsMissing is lobbying MPs for a service for the very severe. This action grew out of the failure of the DHSC to start commissioning a specialisted service for the very servere.

[Anna Wood @Annakwood]

Help!

I'm looking for people with ME/long covid or similar who do something creative (eg painting, photography) that is inspired by nature to feature in my book.
Ideally people more severely affected than me, so bed bound or partially bed bound

[#NotJustFatigue @njfatigue]

We’re starting a video series on the families of people with ME/CFS. This vicious and life altering disease deeply impacts the person living with it, but also everyone in its wake with its potentially extreme symptomology. We’ll hear from different members of the family of people with ME/CFS, and how it’s affects them as well.

We deeply believe in a better future for people with ME/CFS, one that includes FDA approved treatments, research funding equity, clinician education, and true understanding from the public.

The absence of these things is what allows the endless and extreme suffering, the lack of quality research and advances, the myriad of misdiagnoses, and the lack of belief and empathy from the public.

This is what we’re fighting for. This is #NotJustFatigue.

[Open Medicine Foundation @OpenMedF]

Nearly 20 years ago, Donni opened her own kindergarten. Four years in, everything changed. 🤝 She now supports OMF to find real answers for #MECFS & #LongCOVID.

🔗 Read Donni's story and join Hope Builders: https://t.co/AGgW5vihhn

ART: “BEYOND THE GLASS” by Donni

[Solve ME/CFS Initiative @PlzSolveCFS]

Today for #MECFSAdvocacyWeek: add your name to our letters to State Medical Boards and Chief Medical Officers.

Community sign-on: https://t.co/yL2AALu8ld

Clinicians: https://t.co/iCnz69elGP

Share our posts: https://t.co/a1HffwjCn7

[Open Medicine Foundation @OpenMedF]

Today is #LongCOVIDAwarenessDay — a moment to recognize the reality facing hundreds of millions worldwide. 🌎 #LongCOVID is not a disease fading into the past. For many, it is a daily struggle with no clear end and no approved treatment in sight.

🔗 https://t.co/proJtpOLZg

[Open Medicine Foundation @OpenMedF]

To honor #LongCOVIDAwarenessDay, @OpenMedF, @MEActNet, @PlzSolveCFS & @BatemanHorne once again joined forces as #UnitedForME. We gathered a set of resources from our orgs to inform & empower: https://t.co/d2inlWRAaP

#LongCOVID #pwME

[Open Medicine Foundation @OpenMedF]

From the OMF-supported MERC with @BatemanHorne: During a crash, #pwME may struggle to think or communicate clearly. Cards help patients point to needs like water, pain, light sensitivity, or emergencies.

Find these cards in our Crash Survival Guide: https://t.co/wPhTcEzdw8

[Kirsty Schnickelfritz @KSchnickelfritz]

@MEAssociation @tessamunt
This is advertised in the GP’s publication, Pulse. Do you know what Dr Alistair Miller will be teaching GPs about ME so that they can treat people with ME? Is he still promoting CBT and exercise?

[Carole Bruce @CaroleBruce17]

If you want to send Savannah a card for her 24th birthday, this Saturday her address is:
Royal Devon and Exeter (Wonford)
AMU West, room 2
Barrack Rd
Exeter
EX2 5DW.

#MECFS #SevereMErgency #SaveSavannah

[Carole Bruce @CaroleBruce17]

Savannah is no longer at QEH. Is in the Royal Devon - the only NHS hospital with a protocol for admitting Severe #pwME. Still far from risk free imo, but a huge improvement over QEH. Full details below.

[Cort Johnson @CortJohnson]

Is the OMF’s ME/CFS BioQuest Study the Study We’ve All Been Waiting For? #MECFS https://t.co/T9OPXnYmuA

[NickyProctor @NickyProctor]

@DHSCgovuk
@AshleyDalton_MP
Ashley, your words:
“These must become never events”

7 months after publication of Delivery Plan for ME/CFS and still no NHS severe ME care pathway.
Savannah can’t wait any longer.
Please intervene.

[ME Research UK @MEResearchUK]

Prof. Bhupesh Prusty and his team have published results from their ME Research UK-funded study showing that immunoglobulins (or antibodies) from the blood of people with post-infectious ME/CFS caused mitochondrial disruption in healthy cells (https://t.co/NEzK29m7M3)