A 4yr extensive review by NICE, produced new #PatientSafety guidance for #MyalgicEncephalomyelitis
in 2021 & NI formally endorsed Jan22
As stakeholders in NG206, & having campaigned for specialist #ME services since 2011-
At a loss to be told NICE guidance “not mandatory”

‼️ “The NIH study shows how much is altered in these individuals, with respect to pathophysiology,” Dr. Blitshteyn added. “Based on their data, #MECFS is clearly a CNS disorder, and fatigue is defined by autonomic dysfunction unrelated to psychological or psychiatric causes.”

Explore the impact of the Medical Education Resource Center (MERC) at Bateman Horne Center, an OMF supported initiative. This past year, we reached 17 unique countries, 34 states, and 23 different disciplines.

Learn more 👉 omf.ngo/merc-updates/.

#pwME #MECFS #LongCOVID

2017-report from Open Medicine Foundation of hopeful times for the commissioning of #ME specialist services in NI
Sadly, time has stood still
“Public Health Agency closed the meeting with her presentation, “ME & Fibromyalgia Care in Northern Ireland – Recent Developments”
omf.ngo/may-30-belfast…

Section 1.17 of the UK NICE guidelines on #MECFS have very clear recommendations for caring for people with #SevereME , including low-stimulus environments. Yet in the UK and abroad these recommendations are ignored, causing untold suffering.

#SaveCarlasLife #ExposeMENow

“All the big breakthroughs that have happened...it’s been because of a study exactly like this one. It’s the start of something, not the end.” shorturl.at/fwKM0 Thank you to Channel 4 News for showcasing #DecodeME and to The Real M.E. 👩‍🦽🦥♿️🏴󠁧󠁢󠁳󠁣󠁴󠁿📢 and all our other participants.

A thread for eleven #MECFS , #LongCovid and related research papers from w/c 8th April 2024.

Links are to our forum discussion threads, where abstracts, links to paper, analysis and discussion can be found. Inclusion does not equal recommendation.

1/12

Many could have been saved if health planners had listened/learnt from #MyalgicEncephalomyelitis b4 #LongCovid
“Pandemics will very likely continue to happen, and in the next pandemic it should come as no surprise if post-viral diseases play a role again”
ssph-journal.org/articles/10.33…

A Griffith University research team has successfully applied for a $438,000 ME Research UK grant to track the progression of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

news.griffith.edu.au/2024/04/11/me-…

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

Free frame for FB and Twitter for anyone wishing to support the charity in raising awareness during May
Art Mission have listed under ‘Hope 4 Ireland’ but the frame has full details of our N.I. 13 year campaign
#MyalgicEncephalomyelitis
twibbon.com/support/hope-4…

Our latest News in Brief post provides headlines and links to further reading for news, advocacy and research from w/c 8th April.

Topics this week:
News, advocacy and articles
Research news and commentary
#MECFS and related research
& #LongCovid research

s4me.info/threads/news-i…

It's just under a month until #WorldMEDay on May 12th 2024!

Through 27 different organisations worldwide we are building a #GlobalVoiceForME .

You can be part of this campaign. Find out more.

#MECFS #EMSFC #MyalgicEncephalomyelitis

buff.ly/3MPMnPP

Earlier this month, the European ME Alliance released a major analysis of survey responses from 11,000+ patients from 44 countries. I recently spoke with the authors, Trude Schei Trude Schei and Arild Angelsen of the Norwegian ME Association. virology.ws/2024/04/14/tri…

We are grateful to have SIX healthy participants undertaking the Roe Valley Sprint Triathlon this May!
Link includes awareness/information on
#MyalgicEncephalomyelitis (please donate if able/share/watch excellent short video produced by Adam)

donate.giveasyoulive.com/campaign/roe-v…

Lord Bethell Rachel Sylvester Chris Smyth Long Covid and ME/CFS patients are begging for urgent biomedical research to find treatments for their suffering.

We have a growing epidemic of extremely sick people and governments must take action!

Meet Ivana, our next #GlobalVoiceForME in the run up to #WorldMEDay on May 12th.

'It is extremely important that knowledge is disseminated because the Brazilian community knows nothing about the subject.'

#EMSFC #MECFS

buff.ly/4cO2I5r

If commissioner states NICE guideline “not mandatory”
after circular from NI Deputy CMO Jan22, formally endorsing NG206
the situation for patients in NI yet again, is less than hopeful
despite 13yr campaign for specialist services Robin Swann #MyalgicEncephalomyelitis

“Lord Markham Parliamentary Under-Secretary for Health &Social Care answers”
Pt 2-N.I. is excelling LouiseDubras Neil Kennedy
Pt 1-devastating when commissioner reminds campaign group “NICE guidelines for #ME not mandatory”
Clarification please?
Robin Swann Liz Kimmins

#GPs are first point of contact but without up to date information on #MyalgicEncephalomyelitis , including reviewed NICE #PatientSafety guidelines,
the window of opportunity for accurate diagnosis & early intervention is lost. Irreversible damage happens during this delay

Every voice matters. Yet too often marginalised voices go unheard. In the run up to #WorldMEDay on May 12th we are spotlighting stories that make up a #GlobalVoiceForME .

#MyalgicEncephalomyelitis is a global health crisis, requiring drastic change.

buff.ly/43ZFR2S