#MEAwarenessWeek
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meassociation.org.uk
In-person event for those with ME/CFS, Long Covid & related conditions. We welcome carers, friends & families of all ages

Sunday May 11th 
3-5pm
The Millstream Centre, Benson, OX10 6RL (South Oxon.)

Book at enquire.omega@gmail.com OR call 01491 838727 

#TeaPartyForME  #BlueSunday #MEAwarenessWeek
April 30, 2025 at 11:02 AM
malnutritionme.bsky.social
Research to #EndMalnutritionInME is vital.
#MEAwarenessWeek
@worldgastroorg.bsky.social @britsocgastro.bsky.social @leicdan.bsky.social
www.nihr.ac.uk/funding/nihr...
www.nihr.ac.uk
May 13, 2025 at 8:38 AM
tomkindlon.bsky.social
ME Research UK

Cognitive dysfunction ("brain fog") cannot be equated to occasional forgetfulness and lapses in concentration experienced by healthy individuals, rather it is a complex and distressing symptom.

Read more: bit.ly/MEbrainfog2

#MEAwareness #MEAwarenessweek #MECFS #brainfog
What makes ME/CFS so debilitating? one factor is: COGNITIVE DYSFUNCTION As per NICE guidelines, this may include: Word finding difficulties Difficulty in speaking ? Slowed responsiveness Short-term memory problems Difficulty concentrating/multitasking According to research, cognitive dysfunction, often referred to as "brain fog", frequently co-occurs with orthostatic intolerance (symptoms in an upright position) - Gaglio et al 2022 Orthostatic intolerance and neurocognitive impairment in Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) INFORM. INFLUENCE. INVEST. ME RESEARCH UK SC036942
June 1, 2024 at 4:12 PM
sabinehermisson.bsky.social
Für alle, mit #VerySevereME:

"Weil du schweigen musst,
müssen wir reden.

Weil du leiden musst in deiner Schwachheit,
müssen und dürfen wir Stärke zeigen.

Weil du nichts hören kannst in deiner Zelle,
müssen wir laut und klar sein in der Welt.

#MEAwarenessWeek #MECFS
Dunkles Zimmer, junge Frau im Bett liegend
May 16, 2025 at 11:51 AM
malnutritionme.bsky.social
#gastroenterology #MedSky #HealthResearch #MEAwarenessWeek #EndMalnutritionInME @worldgastroorg.bsky.social @britsocgastro.bsky.social @meresearchuk.bsky.social @leicdan.bsky.social @gastrodrsmith.bsky.social
May 15, 2025 at 7:12 PM
malnutritionme.bsky.social
Try to involve people with #SevereME in your #PPI. This may be via their family members and/or carers.
#HealthResearch #MedSky
#MEAwarenessWeek
@precisionlife.bsky.social
May 16, 2025 at 8:59 AM
malnutritionme.bsky.social
Adjustments can be made to include people with #SevereME in research, including:
🔹train researchers in the needs of people with #ME
🔹use charities/support groups
🔹provide domiciliary visits
🔹support and flexibility for completing surveys
#MEAwarenessWeek
@precisionlife.bsky.social
May 16, 2025 at 8:58 AM
pipsminitwee.bsky.social
The ME Association joins other organisations to sign a joint statement for World ME Day - The ME Association #WorldMEday #ThereForME #BelieveME #MEawareness #PwME #StillTheSaME #MEawarenessDay #MEawarenessWeek #PwME #MyalgicE
meassociation.org.uk/2025/05/the-...
The ME Association joins other organisations to sign a joint statement for World ME Day - The ME Association
For World ME Day 2025, the ME Association has signed […]
meassociation.org.uk
May 12, 2025 at 3:26 PM
anilvanderzee.bsky.social
4) are subtitles in different languages included, and there will be more to follow. Don't forget to share! 🙏👍♥️

Groetjes,

Anil

#MEawarenessMonth
#MEawarenessWeek
#MEawarenessday (which is tomorrow)

#pwme #myalgicE #millionsmissing #severeME #MECFS #MEcvs

youtu.be/yLRateIQdzc?...
The prison of M.E.
Having #severeME and being homebound often feels like a prison. You're locked up in your home and your body, away from society, your loved ones, from the life you desperately yearn to live. Most years, I see maybe one or two people, and many years I didn't see anyone at all. I often get the question how do I get by and how do I get help, even though I don't really see or communicate with anyone. My health has somewhat stabilized since moving to a new and quiet place, and I can therefore do a bit more (hence the filming), but other than these changes, I'm still very much imprisoned by ME. So, like last year, I decided to document my life locked up in my home by ME to give a unique insight into my life with ME and how I spend the last year(s).  I hope you'll enjoy watching it. There are subtitles in different languages included, and there will be more to follow. Don't forget to share! 🙏👍♥️ Groetjes,  Anil  #MEawarenessMonth #MEawarenessday (which is tomorrow) #pwme #myalgicE #millionsmissing Subtitles: NL: Rob Wijbenga IT: Chiara Ginestra ENG: Anil van der Zee
youtu.be
May 11, 2024 at 12:32 PM
meactionscotland.bsky.social
Thanks to @suewebbermsp.bsky.social and Oliver Mundell for joining us during #MEAwarenessWeek at #MillionsMissing Scotland 2025 and supporting our call for the urgent development of specialist support for people with ME. Sue Webber also spoke to the crowd.
A photo of MSPs Sue Webber and Oliver Mundell standing with an ME Action Scotland volunteer outside the Scottish Parliament around a bed that says ME is a physiological condition. Sue is holding a red board that says 'Red Alert for ME, specialist support is needed now' and the volunteer is holding a Millions Missing sign and standing next to an ME Action Scotland banner. A photo of Sue Webber MSP speaking to the crowd at Millions Missing outside the Scottish Parliament. She is holding a microphone and standing next to a sign that says 'ME is life without sound and light.'
May 16, 2025 at 12:48 PM
naomiwhitt.bsky.social
As we approach #MEAwarenessWeek, a piece recognising the courage that exists in our community.

It acknowledges those who have lost their lives, those who have not improved, and those who’ve experienced progress - along with the loved ones who witness it all.
alifehidden.com/2025/05/07/c...
(1/7)
Courage Exists in the Darkest of Places
Today I updated my In Memoriam page, commemorating two friends who have died in the past nine months.  It’s a page I always update with reluctance: my heart is heavy and I struggle to find words.  …
alifehidden.com
May 7, 2025 at 2:03 PM
franceyme.bsky.social
Horrible history of #MyalgicEncephalomyelitis - How medical misogyny & decades of medical malfeasance by a faction of psychiatry led to no treatments for #MECFS & #LongCOVID

My story here: illustratorinterrupted.blogspot.com/2021/05/i-caug…

#MEAwarenessWeek #MillionsMissing #12May #VeryLongHauler
October 6, 2023 at 4:41 AM
malnutritionme.bsky.social
Serum antibody responses to common gut bacterial proteins are different in #SevereME compared to healthy people.
Greater binding to Lachnospiraceae flagellins is similar to that seen in Crohn's disease.

#MEAwarenessWeek
#EndMalnutritionInME

www.science.org/doi/full/10....
Systemic antibody responses against human microbiota flagellins are overrepresented in chronic fatigue syndrome patients
Serum antibody responses against gut bacteria in patients with severe ME/CFS point toward an involvement of the microbiota-immune axis.
www.science.org
May 14, 2025 at 8:35 AM
meckermutti.bsky.social
Maybe my psychotherapist can persuade the bacteria to leave the gut. And the gut to close up again.

🤪

#MEAwarenessWeek
May 15, 2025 at 11:17 AM
malnutritionme.bsky.social
Cellular energy production is impaired in #SevereME.
In addition, mitochondrial function is impaired in all severities of #ME.

#MEAwarenessWeek
#EndMalnutritionInME

journals.plos.org/plosone/arti...
The effect of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) severity on cellular bioenergetic function
Myalgic encephalomyelitis/ Chronic fatigue syndrome (ME/CFS) has been associated with abnormalities in mitochondrial function. In this study we have analysed previous bioenergetics data in peripheral ...
journals.plos.org
May 13, 2025 at 1:21 PM
meactionscotland.bsky.social
Thanks to @cgrahamemsp.bsky.social for joining us during #MEAwarenessWeek at #MillionsMissing Scotland 2025 and supporting our call for the urgent development of specialist support for people with ME.
A photo of Christine Grahame MSP standing with an ME Action Scotland supporter outside the Scottish Parliament. They are holding a red board that says 'Red Alert for ME, specialist support is needed now' and standing next to an ME Action Scotland banner.
May 16, 2025 at 12:48 PM
meactionscotland.bsky.social
Thanks to Alexander Burnett MSP, Rachael Hamilton MSP, Alex Rowley MSP and Murdo Fraser MSP for joining us during #MEAwarenessWeek at #MillionsMissing Scotland 2025 and supporting our call for the urgent development of specialist support for people with ME.
A photo of Alexander Burnett MSP standing with an ME Action Scotland volunteer outside the Scottish Parliament. They are holding a red board that says 'Red Alert for ME, specialist support is needed now' and standing next to an ME Action Scotland banner. A photo of Murdo Fraser MSP standing with an ME Action Scotland volunteer outside the Scottish Parliament. They are holding a red board that says 'Red Alert for ME, specialist support is needed now.' A photo of Rachael Hamilton MSP standing with two ME Action Scotland volunteers outside the Scottish Parliament. She is holding a red board that says 'Red Alert for ME, specialist support is needed now' and standing next to an ME Action Scotland banner. A photo of Alex Rowley MSP standing with an ME Action Scotland volunteer outside the Scottish Parliament. They are holding a red board that says 'Red Alert for ME, specialist support is needed now.'
May 16, 2025 at 12:48 PM
nhs-elft.bsky.social
ME Awareness Week is the 12-18 May.
ME is also known as CFS ( #ChronicFatigueSyndrome ).
Learn more here: meassociation.org.uk/me-awareness...
Find out about our service: www.elft.nhs.uk/services/bed...
#MEAwarenessWeek @healthwatchengland.bsky.social @blmkhealthcare.bsky.social
May 16, 2025 at 4:19 PM
meactionscotland.bsky.social
Inside the Scottish Parliament, a motion was also published today for #MEAwarenessWeek which reinforces the messages of the rally, lodged by Annie Wells MSP with our support. Watch this space for further info.

More to come once volunteers have had a chance to rest more - thanks for your patience!
May 14, 2025 at 9:13 PM
meactionscotland.bsky.social
Tomorrow's a key event in #MEAwarenessWeek - Blue Sunday, the tea party for ME 🫖 Run by Anna Redshaw for 13 years 💙

More info on Anna's website: the-slow-lane.com/blue-sunday-...
We would be so grateful if you choose to support us with any donations by selecting #MEAction UK on the donations page.
Blue Sunday 2025
Ideas on how to join in on Sunday 18th May 2025: Wear something blue (pyjamas count!), and/or Dig out your best cups and saucers, and/or Bake or buy your favourite cake, and/or Post a photo of your…
the-slow-lane.com
May 17, 2025 at 5:35 PM
malnutritionme.bsky.social
A comparison of Crohn's disease and #ME shows that both have elevated antibody responses to gut bacteria.
Differences in the region of binding could potentially be used as diagnostic markers.
#MEAwarenessWeek
#EndMalnutritionInMe

microbiomejournal.biomedcentral.com/articles/10....
Systemic antibody responses against gut microbiota flagellins implicate shared and divergent immune reactivity in Crohn’s disease and chronic fatigue syndrome - Microbiome
Background Elevated systemic antibody responses against gut microbiota flagellins are observed in both Crohn’s disease (CD) and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), suggesting ...
microbiomejournal.biomedcentral.com
May 14, 2025 at 6:37 PM
paulaknight.bsky.social
Things that Myalgic Encephalomyelitis isn't:

Tiredness
A mysterious illness
Chronic fatigue
Relieved by rest
Adverse childhood experience
Cured by pacing
Cured by brain retraining
Rare
Something to be ashamed of and keep quiet about
A nice lie in

#MyalgicEncephalomyelitis
#MEAwarenessWeek
May 15, 2025 at 8:37 AM
malnutritionme.bsky.social
#ME patients have higher levels of markers of gut permeability and bacterial translocation which correlate with digestive and other symptoms.

#MEAwarenessWeek #EndMalnutritionInME

www.frontiersin.org/journals/imm...
Frontiers | Increased gut permeability and bacterial translocation are associated with fibromyalgia and myalgic encephalomyelitis/chronic fatigue syndrome: implications for disease-related biomarker d...
BackgroundThere is growing evidence of the significance of gastrointestinal complaints in the impairment of the intestinal mucosal barrier function and infla...
www.frontiersin.org
May 15, 2025 at 8:25 AM
meactionscotland.bsky.social
Thanks to @colinsmythmsp.bsky.social and @paulsweeney.bsky.social for joining us during #MEAwarenessWeek at #MillionsMissing Scotland 2025 and supporting our call for the urgent development of specialist support for people with ME. Paul Sweeney was the first MSP to speak to the crowd.
A photo of MSPs Paul Sweeney and Colin Smyth standing with an ME Action Scotland volunteer outside the Scottish Parliament around a bed that says ME is a physiological condition. The volunteer is holding a red board that says 'Red Alert for ME, specialist support is needed now' and the MSPs are holding a Millions Missing sign. A photo of Paul Sweeney MSP speaking to the crowd at Millions Missing outside the Scottish Parliament. He is holding a microphone and a piece of paper.
May 16, 2025 at 12:48 PM