@NickyProctor

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

 York, uk
Joined November 2010
  • Tweets11.4K
  • Following5.3K
  • Followers1.9K
576Media
Great learning resource. 12x30min podcast episodes. These are really good, accessible #MedEd about #ME open.spotify.com/show/7qIbNL…

Learn about ME

Podcast · Action for M.E. · This series of podcast episodes complement the CPD accredited module on Myalgic Encephalomyelitis (ME/ Chronic Fatigue Syndrome (CFS), originally developed by Dr Nina...

open.spotify.com
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NickyProctor retweeted
ThereForME@ThereForME_UKOct 25
We’re really pleased that our MP email template has been supported by wider ME organisations via Forward ME 🫶 If you have the energy, you can help support @BethDobbin’s call for ME research funding by writing to your MP. More here 👇
ThereForME@ThereForME_UKOct 22
Olympian @BethDobbin has written to Andy Burnham to ask for increased funding for ME research. We are working with her to amplify her message, and you can help (if capacity allows). Write to your MP to back her call - and to make things easier, we have a template for you.👇
Images of Beth Dobbin and Andy Burnham with a graphic of an email going from Beth to Andy. Under Beth is her quote "I believe you need to fund research into this spiralling illness and help us all get our lives back." and also there is a small chart showing UK Govt Reearch funding 2019-2024. ME - £6.6m, Parkinsons, £79.1m and Dementia £496.4m. The text says "Beth Dobbin has written to Andy Burnham asking for increasing funding for ME research. You can help! Support Beth's call for ME funding by writing to your MP. Template letter available!"

ALT Images of Beth Dobbin and Andy Burnham with a graphic of an email going from Beth to Andy. Under Beth is her quote "I believe you need to fund research into this spiralling illness and help us all get our lives back." and also there is a small chart showing UK Govt Reearch funding 2019-2024. ME - £6.6m, Parkinsons, £79.1m and Dementia £496.4m. The text says "Beth Dobbin has written to Andy Burnham asking for increasing funding for ME research. You can help! Support Beth's call for ME funding by writing to your MP. Template letter available!"

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NickyProctor retweeted
ThereForME@ThereForME_UKOct 22
Olympian @BethDobbin has written to Andy Burnham to ask for increased funding for ME research. We are working with her to amplify her message, and you can help (if capacity allows). Write to your MP to back her call - and to make things easier, we have a template for you.👇
Images of Beth Dobbin and Andy Burnham with a graphic of an email going from Beth to Andy. Under Beth is her quote "I believe you need to fund research into this spiralling illness and help us all get our lives back." and also there is a small chart showing UK Govt Reearch funding 2019-2024. ME - £6.6m, Parkinsons, £79.1m and Dementia £496.4m. The text says "Beth Dobbin has written to Andy Burnham asking for increasing funding for ME research. You can help! Support Beth's call for ME funding by writing to your MP. Template letter available!"

ALT Images of Beth Dobbin and Andy Burnham with a graphic of an email going from Beth to Andy. Under Beth is her quote "I believe you need to fund research into this spiralling illness and help us all get our lives back." and also there is a small chart showing UK Govt Reearch funding 2019-2024. ME - £6.6m, Parkinsons, £79.1m and Dementia £496.4m. The text says "Beth Dobbin has written to Andy Burnham asking for increasing funding for ME research. You can help! Support Beth's call for ME funding by writing to your MP. Template letter available!"

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17 new job vacancies in York. Includes Social Workers (£50k), Information Officer (£31k), Family Hub Coordinator (£28k), Support Workers (£31k), Housing Projects Coordinator (£34k) and several school-based teaching and support posts westfieldnewsfocus.wordpress…
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NickyProctor retweeted
davidtuller@davidtuller1Oct 18
This interview with Guardian columnist George Monbiot about the poor treatment of people with ME/CFS has been viewed 32,000+ times!! youtube.com/watch?v=MaaeQ7cr…

Interview with George Monbiot about Guardian column on ME/CFS

Last week, George Monbiot, the British investigative journalist and...

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NickyProctor retweeted
Adam@ABrokenBatteryOct 17
Full segment (7 mins) BBC Radio 5 Live: Olympic sprinter Beth Dobbin on living with ME/CFS and interview with Dr Binita Kane youtu.be/niUp0z3NrW0?is=TabS…

BBC Radio 5 Live: Olympic sprinter Beth Dobbin on living with ME/CFS

Olympic sprinter Beth Dobbin speaks about how ME/CFS has changed he...

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NickyProctor retweeted
Dr Ben Marsh 💙@bendymarshOct 16
Powerful, devastating & vital interview with Olympic sprinter @bethdobbin for @bbcsport on devastating impact of #ME on her life & career!! A must read & share. Thank you @bethdobbin for such sacrifice to raise awareness🙏 bbc.co.uk/sport/athletics/ar…

Beth Dobbin: British Olympic sprinter in bed for 22 hours a day after ME diagnosis

Beth Dobbin ran for Great Britain at the Tokyo Olympics in 2021. Five years on, she is largely bedbound after being diagnosed with ME, a devastating illness for which there is no cure.

bbc.co.uk
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NickyProctor retweeted
Adam@ABrokenBatteryOct 16
“I’ve gone from training five hours a day to being bedbound 22 and a half hours a day.” Former GB sprinter Beth Dobbin describes how #ME has changed her life. #MECFS
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NickyProctor retweeted
Lizzy H@hopefullizzyOct 16
bbc.co.uk/sport/athletics/ar… Brilliant interview/article by @BethDobbin & @KatieFalkingham “Beth Dobbin is so determined to raise awareness of the illness that has decimated her life that she is speaking out, despite knowing it could trigger a brutal deterioration in her health.”

Beth Dobbin: British Olympic sprinter in bed for 22 hours a day after ME diagnosis

Beth Dobbin ran for Great Britain at the Tokyo Olympics in 2021. Five years on, she is largely bedbound after being diagnosed with ME, a devastating illness for which there is no cure.

bbc.co.uk
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NickyProctor retweeted
ThereForME@ThereForME_UKOct 16
1/3 Huge thanks to Olympic athlete Beth Dobbin for using her limited energy to share her story & raise awareness of the severely debilitating effects of ME & the lack of clear NHS pathways. We hear of situations like this all too often. What exists in terms of “specialist care”
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Carole Bruce@CaroleBruce17Oct 16
"There is nothing out there. There is nowhere to go. You go to the GP and there's nowhere for them to send you to. It's really at the back of the queue as far as research, knowledge, expertise, funding." Thank you for talking so honestly about #ME Beth. I’m so sorry 🫂
BBC News (UK)
@BBCNewsOct 16
The Olympic sprinter now bedbound for 22 hours a day bbc.in/3TWaqpx

Beth Dobbin: British Olympic sprinter in bed for 22 hours a day after ME diagnosis

Beth Dobbin ran for Great Britain at the Tokyo Olympics in 2021. Five years on, she is largely bedbound after being diagnosed with ME, a devastating illness for which there is no cure.

bbc.com
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justgiving.com/page/faye-dob…

Faye's fundraiser for ME Research UK

Help Faye Dobbin raise money to support ME Research UK

justgiving.com
BBC News (UK)
@BBCNewsOct 16
The Olympic sprinter now bedbound for 22 hours a day bbc.in/3TWaqpx

Beth Dobbin: British Olympic sprinter in bed for 22 hours a day after ME diagnosis

Beth Dobbin ran for Great Britain at the Tokyo Olympics in 2021. Five years on, she is largely bedbound after being diagnosed with ME, a devastating illness for which there is no cure.

bbc.com
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NickyProctor retweeted
Jo@cfs_joOct 16
This article is spot on. No psych nonsense. Factual. Well described. Well done @BethDobbin Thank you for your honesty and insight. It means so much to everyone battling this neglected and misunderstood illness.
BBC News (UK)
@BBCNewsOct 16
The Olympic sprinter now bedbound for 22 hours a day bbc.in/3TWaqpx

Beth Dobbin: British Olympic sprinter in bed for 22 hours a day after ME diagnosis

Beth Dobbin ran for Great Britain at the Tokyo Olympics in 2021. Five years on, she is largely bedbound after being diagnosed with ME, a devastating illness for which there is no cure.

bbc.com
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NickyProctor retweeted
Dr Rae Duncan@Sunny_Rae1Oct 13
Replying to @DeanEggitt
Have you read Raina McIntyres recent publication? SARS-2 found in 80% of A&E air samples, despite meeting standard ventilation requirements. NHS Wales data shows a significant %SARS2 in pts is hospital acquired. We really need to clean the air and have mask mandates in A&E
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NickyProctor retweeted
stuart murdoch@nee_masseyOct 11
I wanted to film the sunset for any ME/CFS people, long covid people, fibro people, or anyone with an illness that keeps them inside or in bed. It’s there waiting for you, I hope, I pray you feel better soon.
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NickyProctor retweeted
Dreamy Run@dreamy_runOct 8
Replying to @bmj_latest
A major way to ensure a patient with disabling fatigue (like this author) feels supported is for clinicians to familiarize themselves with fatiguing illnesses like ME & POTS, and to push for these IACIs to actually be taught in #MedEd. Why isn't ME even mentioned in this article?
Diagnosing ME/CFS in the clinical setting remains a challenge. Patients often struggle with their illness for years before receiving a diagnosis, and an estimated 84 to 91 percent of patients affected by ME/CFS are not yet diagnosed (Jason et al., 2006b; Solomon and Reeves, 2004). In multiple surveys, 67 to 77 percent of patients have reported that it took longer than 1 year to get a diagnosis, and about 29 percent have reported that it took longer than 5 years...Less than one-third of medical schools include ME/CFS-specific information in the curriculum (Peterson et al., 2013), and only 40 percent of medical textbooks include information on the disorder (Jason et al., 2010). https://www.ncbi.nlm.nih.gov/books/NBK284892/

ALT Diagnosing ME/CFS in the clinical setting remains a challenge. Patients often struggle with their illness for years before receiving a diagnosis, and an estimated 84 to 91 percent of patients affected by ME/CFS are not yet diagnosed (Jason et al., 2006b; Solomon and Reeves, 2004). In multiple surveys, 67 to 77 percent of patients have reported that it took longer than 1 year to get a diagnosis, and about 29 percent have reported that it took longer than 5 years...Less than one-third of medical schools include ME/CFS-specific information in the curriculum (Peterson et al., 2013), and only 40 percent of medical textbooks include information on the disorder (Jason et al., 2010). https://www.ncbi.nlm.nih.gov/books/NBK284892/

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NickyProctor retweeted
Dr. Daniel Loy@loy_daniel_deOct 8
4/8 Der Vorgang wirft dabei fundamentale Fragen auf. Üblicherweise erhalten Autoren vor Veröffentlichung einen Korrekturabzug zur Freigabe. Wie konnte hier also eine inhaltlich veränderte Fassung ohne erneute Zustimmung veröffentlicht werden?
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A handbook chapter claiming that people with ME are "aggressive" and "hypochondriacs" has been amended, with the publisher claiming that these assertions did not originate from the authors. Who then did they originate from?
Dr. Daniel Loy@loy_daniel_deOct 8
1/8 In einem Verhaltenstherapie-Handbuch der Springer-Verlag GmbH wurden Aussagen über #MECFS veröffentlicht, die nun laut Verlag gar nicht von den beiden Kapitelautoren stammen. Ein offizielles Erratum legt sich fest: Die veröffentlichte Fassung war nicht autorisiert.
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NickyProctor retweeted
Ror Preston@RorPrestonOct 8
Really pleased to say I have started sending out our first invites to CrunchME Pro! 🙌 If you're using ChatGPT or Claude, this provides a connection for you to plug directly into CrunchME's visuals and ecosystem database, so you can find what you want using normal language 1/
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NickyProctor retweeted
Martin Lewis
@MartinSLewisOct 8
NEWS: Today I’m launching The Small Ideas Initiative. We want you to submit ideas at Small-Ideas.org for non-controversial fixes, e.g “live sewage updates for beaches” or “standardised allergen menus”. A year ago, an interviewer asked what I’d have told the Government if I’d been advising it, I replied, 'Come up with 100 small things that piss people off and fix one a day for the first 100 days'. As I left the stage, I emailed myself, 'set up Small ideas institute!' And today, I’m excited it's happening. I’m funding two charities to work together to collate the submissions, narrow them down to about 200 doables then turn those into formal policy proposals which I'll bring back to you for feedback. Then to finish we've a Cross-Party panel who’ve agreed to pick 50ish, after which we’ll start trying to make them happen. You can read far more about it and who the cross party panel are here… blog.moneysavingexpert.com/2…

Small Ideas Initiative

Martin Lewis wants your ideas for practical, small, non-controversial ways to improve the UK.

small-ideas.org
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NickyProctor retweeted
Michael Stingl@neurostinglOct 5
Spannender Artikel darüber, warum Patientenwissen bei ME/CFS so relevant ist. Sehr treffend: Kritik sollte nicht nur dem medical gaslighting gelten sondern vor allem den institutionellen Strukturen, durch die Ärzte überhaupt mit falschem/obsoletem Vorwissen in Kontakt kommen.
Chloé de Canson@chloedecansonOct 5
Why do people with ME claim to know more about the medical aspects of their disease than their doctors? Bc the mechanisms that ensure doctors' knowledge fail in the case of ME, and sick people have created mechanisms of knowledge production and dissemination to pick up the slack
Screenshot of the header of a published paper: Studies in History and Philosophy of Science Patient's knowledge, doctor's ignorance: The production of knowledge about myalgic encephalomyelitis Chloé de Canson

ALT Screenshot of the header of a published paper: Studies in History and Philosophy of Science Patient's knowledge, doctor's ignorance: The production of knowledge about myalgic encephalomyelitis Chloé de Canson

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