NickyProctor

Writing up my #PhD a realist evaluation of coach learning & development programme @LeedsBeckett and campaigning for better healthcare #MEcfs #POTS

[NickyProctor @NickyProctor]

Great learning resource.
12x30min podcast episodes.
These are really good, accessible #MedEd about #ME

https://t.co/Byn8uxBpQ2

[Elisabeth Klaar @lammas_leaves]

to be put to the Spring 2027 EGM.

We genuinely hope to reach agreement. Our motion, which sets the changes we want to see, can be found here:

https://t.co/CTMkH0k57n
/ 🧵

[Elisabeth Klaar @lammas_leaves]

reach agreement with the Trustees on (very specifically) aims and commitments for changes to the Articles of Association related to trustee tenure rules. We would like to reach agreement on this before the Dec AGM, understanding that finished/fully drafted articles would be ready

[Elisabeth Klaar @lammas_leaves]

bread and butter job of a trustee of any charity. If you can't easily point to such guidance then you need to get it drawn up within a few weeks of first being asked.

We have engaged in good faith, putting forward our views. We will continue to do so. We would very much like to

[Elisabeth Klaar @lammas_leaves]

It's honestly getting tedious going round and round the houses. We have practically begged for information and processes for submitting a motion (eg deadlines, format, timetable, anything else required?) since November 2024. Answering questions like this should be the basic

[Elisabeth Klaar @lammas_leaves]

2) Our response to this email can be found here:

https://t.co/RZfafxu5fs

[Elisabeth Klaar @lammas_leaves]

Further to our recent correspondence with the MEA @NickyProctor and I have two further pieces to share.

1) The MEA response to yesterday's email - read their response here:

https://t.co/ZWI6ffRKkk
#MECFS #pwME

🧵

[Julie Houston @JulesAHouston]

This judgement could be very significant #pwME. "It involves the case of a child who suffers with Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome that has threatened her life and the lack of medical knowledge and experience around appropriate treatment for the condition."

[NickyProctor @NickyProctor]

@dianataylorabz Thank you for sharing.
Eternal gratitude to Dr Taylor & my thoughts are with the family involved.

“Hopefully, there can be joined up thinking across all agencies, armed now with the powerful and compelling report, particularly of Dr Taylor. It is a most impressive document”

[Elisabeth Klaar @lammas_leaves]

Please see an update on our website re the AGM of the @MEAssociation and @NickyProctor's and my motion to require the MEA to update trustee tenure rules.

https://t.co/i0vQqZT5im

(includes original motion text and background info/explanation)

#MECFS #pwME #MyalgicE

🧵

[ThereForME @ThereForME_UK]

@KatyBruce108 @BigGive It is firmly on our radar! We don’t quite meet the requirements yet (you need a first set of accounts) but hope to soon 💪

For a quick way to support us right now (if you have the energy) you can nominate us here 🙂

https://t.co/4Yu0EwLgCG

[Billy Hanlon @bhanlon15]

WCVB: 'Philanthropist, former Celtics co-owner Steve Pagliuca backs $15M long COVID research effort'

"It’s really hard to watch if one of your children is sick and one of your friends is sick," Pagliuca said. "And so this really needs to be done."

https://t.co/Zqylp3Cvzc

[ThereForME @ThereForME_UK]

Brilliant to see this from Tessa Munt MP in today’s Times making the case for more ambitious ME research funding 👏👏

Putting more ££ into ME research is the right, fair and smart thing to do. That’s why we’ve backed @BethDobbin’s call to action - and we’re glad Tessa has too!

[Jo Greer @DrJoGreer]

I've come to the heartbreaking conclusion after the last 5 years that my daughter's decimated life due to very severe ME triggered by Covid Pneumonia appears to be viewed as colateral damage by those in power.

[NickyProctor @NickyProctor]

@LongCovidAdvoc Love Prof Danny Altmann’s comment too!

[Long Covid Advocacy 💙 @LongCovidAdvoc]

If we could see some parity with Commonwealth swimmer Archie Goodburn whom Andy promised:
🔹National clinical lead
🔹Immediate expert review
🔹National action plan
🔹Faster medicines regulation
🔹Improved access to clinical trials
🔹International brain tumour research conference in 2027

[WAMES @WAMESMECFS]

Former British Olympic sprinter Beth Dobbin expressed surprise at support for her campaign for more research into ME from fellow sportsppl, saying: “I can’t believe 360+ ppl signed in just 1 wk". She is urging UK PM Andy Burnham to meet her & commit......"
https://t.co/lFb9ZIxthQ

[Prof Doug Kell CBE #FBPE #FBPA🔶🇪🇺 @dbkell]

Seems that @CaseySapp has blocked me after I said "Just give me a link to one decent review that you think best, else you may as well block me (and I am not a medic but a research scientist)." Draw your own conclusions.

[NickyProctor @NickyProctor]

@dbkell @DrSdeG @resiapretorius Thank you for your scientific research and continued dedication to understanding these devastating illnesses. #ME #LongCovid
🙏

[Prof Doug Kell CBE #FBPE #FBPA🔶🇪🇺 @dbkell]

Response to the recent criticism of my work with @resiapretorius on #microclots for the benefit of #pwLC and #pwME https://t.co/gd7W7oNJGg

[Dan 🦠➡️🧠🔥 @Dan_Wyke]

It's disturbing to think that a world famous athlete can be raising awareness of the mistreatment and neglect of people with #MyalgicEncephalomyelitis on national television while at the same time another severely ill #pwME is being denied lifesaving treatment in an NHS hospital.