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Dr Jo Greer

@drjogreer.bsky.social

Mum, Carer, Educational Psychologist www.theredtreeandME.com

78 Posts1699 Follower1146 Folgt
Dr Jo Greer@drjogreer.bsky.social · 4w ago

open.substack.com/pub/theredtreeandme/p/very-severe-me-hope-left-waiting My 19 yo daughter has now been bedridden for 4 yrs with very severe ME and seriously unwell for 5 yrs. The silent indifference is sometimes deafening. #SevereMEDay2026 #MyalgicEncephalomyelitis #MECFS #TheRedTreeandME

Very Severe ME - Hope Left Waiting

I am generally cautious about wandering too far down Memory Lane, as the present demands enough of my energy and attention.

open.substack.com

ThereForME@thereforme.bsky.social · 5mo ago

This is despite a ministerial recognition in the Delivery Plan of "tragically avoidable" deaths of people with ME in England and a commitment to make these "never events". Like many patients and carers, we're asking: where on earth is the urgency? (2/3)

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ThereForME@thereforme.bsky.social · 5mo ago

This week we were informed by DHSC, alongside other organisations, that DHSC and NHS England have delayed discussions on commissioning a specialised service for very severe ME until April 2027. This means yet another year without NHS care for people with very severe ME. (1/3)

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Dr Jo Greer@drjogreer.bsky.social · 6mo ago

theredtreeandme.com/p/red-leaves-of-solidarity?r=4yhsbn ‘Red leaves’ of solidarity from #GreenParty Thank you @nataliegreenpeer.bsky.social for listening with kindness & compassion to my 16 yo son telling you about his sister who has very severe #myalgicencephalomyelitis #LongCovid #TheRedTreeandME

Red Leaves of Solidarity

Long Covid Awareness month landed at a time when the UK Covid-19 Inquiry is laying bare just how little attention was given to the long- term consequences of Covid infection for children and adults.

theredtreeandme.com

Lucibee@lucibee.bsky.social · 7mo ago

5/n Today, I received their answer. This is the data table they sent me, of the number of people who have completed each of the 3 modules up to 20 January 2026:

Table shows the numbers completing each module, split by type of email account. An asterisk indicates there were 5 or fewer. Module 1: An introduction to ME/CFS = 8 (.gov.uk), 51 (.ac.uk), 227 (.nhs), 85 (other). Module 2: ME/CFS: guidance for community-based healthcare practitioners = 8 (.ac.uk), 74 (.nhs), 19 (other). Module 3: Managing severe ME/CFS = * (.gov.uk), 7 (.ac.uk), 33 (.nhs), * (other).
Lucibee@lucibee.bsky.social · 7mo ago

3/n The UK Government stated that "The Royal College of General Practitioners, the Chartered Society of Physiotherapy and the Royal College of Occupational Therapists agreed to share and promote NHS England’s e-learning modules," and that they were working with the Royal College of Nursing.

Extract from the UK Government's ME/CFS Delivery Plan. Attitudes and education. Action: DHSC will ask relevant stakeholders to: a) consider developing a shared learning resource on ME/CFS, which could be held in an education hub, b) request that the Medical Schools Council (MSC) encourages shared learning and the NHS England e-learning package on ME/CFS to all UK medical schools and encourages medical schools to provide undergraduates with direct patient experience, c) use its networks to raise awareness of NHS England’s e-learning module on ME/CFS. Progress: Discussed potential education hub with the Task and Finish Group - to be explored further. DHSC discussed raising awareness of NHS England’s e-learning with relevant professional bodies. The Royal College of General Practitioners, the Chartered Society of Physiotherapy and the Royal College of Occupational Therapists agreed to share and promote NHS England’s e-learning modules. DHSC will continue to reach out to networks including the Royal College of Nursing to promote NHS England’s e-learning modules. NICE has added e-learning to its tools and resources page, with further modules to be added as they become available. DHSC to develop and run a public awareness initiative on ME/CFS, and signpost to e-learning and NICE guidelines as part of the initiative. Timeline and measure of success: Sharing of resources with a wider stakeholder group and a public awareness initiative (by May 2026) are expected to improve both the public and professionals’ understanding of ME/CFS. E-learning to be shared with stakeholders in July 2025. NHS England’s user statistics and feedback on DHSC-led awareness initiative to be monitored and reviewed.
Tessa Munt MP 🔶@tessamunt.bsky.social · 7mo ago

Savannah Victora-May has been in hospital for 11 months with severe ME; a dearth of specialist treatment has contributed to her situation. The Govt’s Final Delivery Plan committed to exploring a specialised service for very severe ME. *What* is happening to prevent more cases such as Savannah’s?

Chris Ponting@cgatist.bsky.social · 10mo ago

Available to buy now: One Red Leaf at a Time Greetings Cards. All proceeds go to our #MEcfs research @uoe-igc.bsky.social. Thank you @drjogreer.bsky.social & Dr Clare Raynor! theredtreeandme.substack.com/p/one-red-le... #oneredleafatatime

One Red Leaf at a Time Greetings Cards - Raising funds for research into Myalgic Encephalomyelitis

Since so many of you have asked, greetings cards featuring images from the Red Leaf Creative Collaborative are now available to purchase.

theredtreeandme.substack.com

Dr Jo Greer@drjogreer.bsky.social · 10mo ago

open.substack.com/pub/theredtreeandme/p/one-red-leaf-at-a-time-greetings?r=4yhsbn&utm_campaign=post&utm_medium=web&showWelcomeOnShare=true #OneRedLeafataTime #TheRedTreeandME is fundraising for research into #MyalgicEncephalomyelitis at The University of Edinburgh, led by Professor Chris Ponting.

One Red Leaf at a Time Greetings Cards - Raising funds for research into Myalgic Encephalomyelitis

Since so many of you have asked, greetings cards featuring images from the Red Leaf Creative Collaborative are now available to purchase.

open.substack.com