Management - Ten Key Aspects - The ME Association This booklet brings together the 10 most important aspects to […]

Booklet: Management: 10 Key Aspects

This booklet brings together the 10 most important aspects to managing your ME/CFS and is consistent with the NICE Guideline on ME/CFS.

meassociation.org.uk/literature/i...

#pwME #MECFS #MyalgicEncephalomyelits #MEAwarenessWeek #MEAW2025

IMAGE DESCRIPTION: Photo of a woman wearing a face mask and holding her head. Wording - Myth vs Fact, the Myalgic Encephalomyelitis Edition. Myth: Long COVID is entirely different from ME. Fact: Many Long COVID patients have symptoms that match ME. What facts do you want toe world to understand this World ME Day?

ME World Alliance Myth v's Fact

Myth: Long COVID is entirely different from ME.

Fact: Many Long COVID patients have symptoms that match ME.

Download and share any of the Myth v's Fact images here:

https://worldmealliance.org/worldmeday/

#MECFS #pwME #MEAwarenessWeek #WorldMEDay #MEAW

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…

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.

Picture of Karen laying down as usual as struggling with ME symptoms

Picture of Karen laying down as usual coping with ME symptoms

Tomorrow is #BlueSunday the end of #MEawarenessweek started by Anna Redshaw.
If you can donate to any ME charities the cost of a cake and coffee to let PWME know you’re thinking of them as it’s absolutely bloody debilitating and isolating and we as yet have no cure ! 💙

Help us this ME Awareness Week, by sharing these real stories & reminding people with ME/CFS that they are not alone. 
https://meassociation.org.uk/what-is-MECFS/

*If sensitive to sound, please turn down the volume as the video has music'* 

#MEAW #MEAW2025 #MEAwarenessWeek #MECFS

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

A photo of Tess White MSP standing with an ME Action Scotland volunteer outside the Scottish Parliament. They are standing next to an ME Action Scotland banner and Tess White is holding a red board that says 'Red Alert for ME, specialist support is needed now' and wearing a red ME Action t shirt.

A photo of Alexander Stewart MSP standing with an ME Action Scotland volunteer outside the Scottish Parliament. They are holding a Millions Missing sign and standing next to an ME Action Scotland banner.

Thanks to @tesswhitemsp.bsky.social and Alexander Stewart 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 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.

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 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.'

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 Michael Marra 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.

Thanks to @michaeljmarra.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.

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 Alex Cole-Hamilton MSP shaking hands with an ME Action Scotland volunteer outside the Scottish Parliament at the Millions Missing Scotland demonstration. Another ME Action Scotland volunteer and another man who is mostly obscured are standing with them.

A photo of Alex Cole-Hamilton MSP speaking to the crowd at Millions Missing outside the Scottish Parliament. He is holding a microphone and a piece of paper and standing next to two people in red ME Action t shirts sitting behind a table with a red tablecloth. A man in an ME Association hoody is standing behind them.

Thanks to @alex.scotlibdems.org.uk for joining us during #MEAwarenessWeek at #MillionsMissing Scotland 2025, speaking to the crowd and supporting our call for the urgent development of specialist support for people with ME. Alex also spoke to the crowd.

A photo of Katy Clark MSP talking to two ME Action Scotland volunteers outside the Scottish Parliament at the Millions Missing Scotland demonstration. They are all smiling.

Thanks to @katysclark.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 MSPs Brian Whittle, Foysol Choudhury and Monica Lennon 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 Brian Whittle MSP speaking to the crowd at Millions Missing outside the Scottish Parliament. He is holding a microphone and a piece of paper and standing next to two people in red ME Action t shirts sitting behind a table with a red tablecloth.

Thanks to @foysolchoudhury.bsky.social @monicalennon.bsky.social and Brian Whittle 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. Brian Whittle also spoke to the crowd.

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.'

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 a crowd of people listening to Jenni Minto, Minister for Public Health and Women's Health, at the Millions Missing demonstration outside the Scottish Parliament. Jenni is speaking into a microphone and holding a phone and lanyards. People are standing and sitting to listen, they include ME Action volunteers, members of the public and MSPs. An ME Action Scotland banner can also be seen in the background.

A photo of an ME Action Scotland volunteer standing with the Minister for Public Health and Women's Health, Jenni Minto, next to an ME Action Scotland banner outside the Scottish Parliament.

Thanks to @jennimintomsp.bsky.social for joining us this #MEAwarenessWeek at #MillionsMissing Scotland & speaking to the crowd.

The Minister confirmed that the government is discussing with Health Boards how the allocated funding could be spent & highlighting that NICE guidance should be followed.

Weil du nicht hinausgehe kannst, um zu sagen:
'Da war ich auch einmal - mitten im Leben',
deshalb gehen und reden wir für dich."

(Heidrun Jannach, #MECFS-Aktionsgruppe Mödling)

#MEAwarenessWeek

Dunkles Zimmer, junge Frau im Bett liegend

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

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

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

Ensure you include additional costs of supporting participants with #SevereME in your #ME research funding application. Costs may include telephone support, printing and paper copies of surveys.
#MedSky #HealthResearch
#MEAwarenessWeek

Whenever possible, people with #SevereME should be included in #ME research studies.
#MedSky #HealthResearch
#MEAwarenessWeek
www.mdpi.com/2227-9032/10...

Peace - Single, by John Reed & Ali Karim track by John Reed & Ali Karim

This is #MEAwarenessWeek Please be aware.
johnreed.bandcamp.com/track/peace-...

#gastroenterology #MedSky #HealthResearch #MEAwarenessWeek #EndMalnutritionInME @worldgastroorg.bsky.social @britsocgastro.bsky.social @meresearchuk.bsky.social @leicdan.bsky.social @gastrodrsmith.bsky.social

IMAGE DESCRIPTION: Photo of three teenage students walking out of the school gates. The image of the girl on the left is greyed out. Wording - ME/CFS: The Hidden Crisis. "ME/CFS stole my daughter’s education" ME Awareness week 12th - 18th May.

Millions are affected by ME/CFS—a debilitating and often invisible illness. Yet despite its profound impact, it continues to be misunderstood and underfunded.

Help us make a difference this ME Awareness Week: https://meassociation.org.uk/nc65

#MECFS #pwME #HiddenCrisis #MEAW2025 #MEAwarenessWeek

Maybe my psychotherapist can persuade the bacteria to leave the gut. And the gut to close up again.

🤪

#MEAwarenessWeek

Thank you so much Mike for bringing this to Congress. This is something close to my heart and my health. It’s outstanding that #rcn25 have voted in support of this. Even more so, as it’s #MEawarenessweek this week. Thank you Mike!

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

Early intervention tube feeding has been shown to be beneficial for people with #SevereME.

#EndMalnutritionInME
#MEAwarenessWeek

www.mdpi.com/2227-9032/9/...

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...

#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...