Action for M.E. @actionforme Twitter profile

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Action for M.E.

26 days

🚨 Health & Disability Green Paper consultation We’re seeking the views & experiences of #pwME to inform our org response to the @DWPgovuk health & disability #GreenPaper Find out more: #MECFS #MyalgicE #PIP

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Action for M.E.

@actionforme

6 months

We have coordinated an open letter with other M.E. orgs in response to the recent Dragons Den episode in which a contenstant made unevidenced claims regarding the efficacy of 'acu seeds' as a treatment for #MECFS You can view the letter here:

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Action for M.E.

@actionforme

2 years

Lord Singh of Wimbledon calls on the Government to introduce a National Strategy for M.E. in @UKHouseofLords today 👇

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Action for M.E.

@actionforme

2 months

Delighted to welcome @jessphillips MP as our newest Parliamentary Champion! 🎉 Jess's dedication to advocacy for women & equalities will be instrumental in creating positive change in legislation & amplifying the voices of those living with #MECFS #pwME #MyalgicE #Parliament

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Action for M.E.

@actionforme

4 years

#AbleismInFourWords is trending... All in your head You don't look sick Come on, try harder I get tired too Have you tried yoga? Sleeping all day? Lovely! #MECFS #pwME

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Action for M.E.

@actionforme

3 years

We’re disappointed to read the unsubstantiated and harmful opinions of psychiatrist Jeremy Devine in @thetimes . We’re glad that other experts disagreed with his views in the piece, as we know from medical evidence that long Covid is not a psychosomatic illness and neither is M.E.

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Action for M.E.

@actionforme

3 years

"No minority party should be able to undermine the careful scientific consensus established by the NICE committee." Read our full joint Forward ME response to #MECFS guideline delay at We're working together to get this out as widely as possible.

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Action for M.E.

@actionforme

2 years

BREAKING Gov have released pioneering statement on the first ever #WorldMEDay

Written statements - Written questions, answers and statements - UK Parliament

Information from UK Parliament on written questions & answers, written statements and daily reports.

questions-statements.parliament.uk

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Action for M.E.

@actionforme

1 year

Must read - our new Freedom of Information report covered in @thetimes this weekend - ‘Thousands of ME patients ‘failed by shockingly poor NHS care’. About to appear on @TimesRadio this morning. More to come this week! #TakeMEseriously

The Times & The Sunday Times

News and opinion from The Times & The Sunday Times

www.thetimes.com

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Action for M.E.

@actionforme

2 years

We were honoured to have @mark_bonnar play for us on @ITV 's Celebrity @Catchphrase . Mark won an incredible £17K. Mark’s donation will mean we can continue to be a leader for change. If you missed Mark’s feature you can watch the episode on the ITV hub

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Action for M.E.

@actionforme

3 years

Dr David Strain @DocStrain on @BBCWomansHour : "If it [M.E.] had been properly researched years ago...we’d be a lot further ahead with Long Covid today. "

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Action for M.E.

@actionforme

5 months

BBC have pulled the Dragons' Den episode in which unevidenced claims were made relating to the treatment of M.E. We look forward to working collaboratively to prevent this situation from happening again.

BBC pulls Dragons’ Den episode after ‘unfounded claims’ of curing ME

Corporation reviews episode featuring a product alleging to have treated chronic fatigue syndrome, which has no known cure

www.theguardian.com

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Action for M.E.

@actionforme

3 years

Dr Nina Muirhead live on @BBCWomansHour “As an NHS doctor, I probably saw hundreds of patients with this condition before I got ill myself. I had no empathy for how severe it was and I didn’t recognise it in many patients who presented with all of these symptoms." (1/2)

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Action for M.E.

@actionforme

2 years

The Health Secretary told MPS, guests, #pwme of his personal connection with a person he called Sarah. A powerful speech by @sajidjavid at today’s APPG report.

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Action for M.E.

@actionforme

5 years

What does #MECFS feel like? "It's like having glandular fever, taking your glandular fever on a drinking binge, then taking your glandular fever & your hangover & doing a 30km march over the Brecon Beacons. The way you feel at the end of that is how it feels to have M.E.”

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Action for M.E.

@actionforme

1 year

Our new report reveals that the vast majority of the ME/CFS community have fallen through the cracks and are not being taken seriously by the health and social care system. Read the report here: #TakeMEseriously #pwME #MECFS

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Action for M.E.

@actionforme

2 years

Just brilliant. Thank you to @wendychambLD for supporting those with M.E. in the House of Commons and discussing the similarities between M.E. and Long Covid.

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Action for M.E.

@actionforme

3 years

We had a press briefing with journalists from national newspapers this morning, calling for equity for people with M.E. to benefit from the same level of funding and services as people with Long Covid. Keep an eye on our feed as we’ll share any news coverage here.

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Action for M.E.

@actionforme

5 months

The full @Channel4News segment on #MECFS is available on YouTube using the link below @SonyaChowdhury #MyalgicEncephalomyelitis #pwME #MyalgicE

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Action for M.E.

@actionforme

3 months

We have issued a statement in response to the concerning reports surrounding Millie's care. Full statement available on our website: #BringMillieHome #pwME #MyalgicE #SevereME

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Action for M.E.

@actionforme

6 years

M.E. is not a mental health condition but having to cope with M.E. and the impact it has on your life can lead to depression and anxiety. It's #TimeToTalk about the effect M.E. can have on mental health.

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Action for M.E.

@actionforme

5 years

The impact of #MECFS on people with M.E.: 🔸94% stopped or reduced social contact 🔸83% stopped or reduced paid work 🔸90% stopped or reduced sports and hobbies 🔸33% require full or part-time care 🔸88% stopped or reduced household tasks 🔸25% affected decision to have children

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Action for M.E.

@actionforme

8 months

We are urging the government to put a stop to their alarming benefits changes, which will see many disabled people #PushedIntoPoverty @MelJStride will you listen and scrap the proposed changes to the Work Capability Assessment #AutumnBudget #pwME #MECFS

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Action for M.E.

@actionforme

3 years

"By drawing conclusions that are both statistically invalid and scientifically unsound, Prof Garner has perpetuated an outdated and harmful view of people with chronic illness." More on this from our CEO @SonyaChowdhury below.

Our CEO responds to Prof Paul Garner

Sonya Chowdhury addresses the confusion of opinion with fact | Action for M.E.

www.actionforme.org.uk

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Action for M.E.

@actionforme

1 year

M.E.: the disease where pushing harder can make you sicker. This World ME Day, the @WorldMEAlliance is putting the spotlight on post-exertional malaise (PEM), the hallmark symptom of #MECFS .🔈

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Action for M.E.

@actionforme

4 months

Standing in solidarity w the long Covid community. Research indicates at least 50% of people with #LongCovid have symptoms that mirror #MyalgicEncephalomyelitis Working together is critical to improve the lives of ppl with overlappying illnesses #LongCovidAwarenessDay

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Action for M.E.

@actionforme

3 years

We were delighted to have the opportunity to meet with Sajid Javid. This is the beginning of us seeing the long-awaited change for people with ME; for every child, Carer and adult affected by M.E. who has faced injustice and neglect for decades.

Sajid Javid

@sajidjavid

3 years

We need to do more on ME/Chronic Fatigue Syndrome. There’s been a real lack of research over many years. Good to meet with @CGATist , Prof Karl Johan Tronstad, @ngklimas , @SonyaChowdhury & Prof Stephen Holgate this week to discuss challenges, research and collaboration.

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Action for M.E.

@actionforme

2 years

The All-Party Parliamentary Group on ME 'Rethinking ME' report is now live and available to access via the APPG on ME website:

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Action for M.E.

@actionforme

2 months

🚨 Westminster Hall debate on #MECFS 🚨 Our new Parliamentary Champion, @sajidjavid , will be leading a #WestminsterHall debate on Weds 1 May, 16.30 - 17.30 ahead of #WorldMEDay Read the full article on our website to find out more #pwME #MyalgicEAction

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Action for M.E.

@actionforme

5 years

"My wheelchair gives me the ability to conserve energy. I call it my yes chair, yes I can go shopping, yes I can go out for a coffee. Without my chair I'd be unable to do these things. Using a wheelchair has opened my world back up." - Amanda, 46. #MECFS

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Action for M.E.

@actionforme

5 months

We were delighted to take part in the extended @Channel4News segment on #MECFS alongside @TimesONeill & Clare Norton to talk about the devastating effects of #MyalgicEncephalomyelitis Thank you @JaneDodgeC4 We will be able to share the full segment tomorrow #pwME #MyalgicE

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Action for M.E.

@actionforme

5 years

THREAD: What is #MECFS ? M.E. is a long-term (chronic), fluctuating, neurological condition that causes symptoms affecting many body systems, more commonly the nervous & immune systems. An estimated 250,000 people in the UK, are affected & around 17 million people worldwide.

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Action for M.E.

@actionforme

3 years

Thank you @DocStrain and @xandvt for giving recognition to #pwME on #horizon last night and acknowledging that #MECFS is a "life-changing physical illness that they have struggled to get accepted as a disease in its own right". Thank you! #ME @DoctorChrisVT #LongCovid @BBCNews

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Action for M.E.

@actionforme

9 months

We are delighted to announce that our CEO, @SonyaChowdhury , has been honoured with the prestigious @The_IoD Award for Director of the Year in the Public and Third Sector! 🎉

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Action for M.E.

@actionforme

1 year

For this #WorldMEDay , we want to highlight the devastating impact of post-exertional malaise (PEM) on people with severe and very #SevereME .

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Action for M.E.

@actionforme

2 years

The All-Party Parliamentary Group (APPG) on Myalgic Encephalomyelitis (ME) has today launched its official website! The APPG is a cross-party voice in Westminster building change for #pwME with @CMonaghanSNP serving as Chair.

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Action for M.E.

@actionforme

3 years

"The biggest gap is in education, doctors aren’t taught to recognise this disease or even empathise with how severely it can impact the patient." (2/2)

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Action for M.E.

@actionforme

3 years

UPDATE: We're in discussion with Forward-ME to do something collaborative with several ME/CFS organisations as a response to the harmful Sunday Times article, as we feel this will have more impact than an individual response.

Action for M.E.

@actionforme

3 years

We’re disappointed to read the unsubstantiated and harmful opinions of psychiatrist Jeremy Devine in @thetimes . We’re glad that other experts disagreed with his views in the piece, as we know from medical evidence that long Covid is not a psychosomatic illness and neither is M.E.

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Action for M.E.

@actionforme

2 years

Today we are launching Breakthrough-M.E: to grow research & funding. We want a breakthrough that will provide the scientific knowledge required to deliver the diagnostics, treatments & eventually cures needed. For more info, please see our website:

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Action for M.E.

@actionforme

1 year

Post-exertional malaise (PEM) is something that everyone with M.E. experiences. PEM can have a profound impact on the daily lives of individuals with severe and very #SevereME .

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Action for M.E.

@actionforme

3 months

Our CEO, @SonyaChowdhury , spoke to @5_News on the lack of treatment available for #pwSevereME , the paucity in ME research & the efforts of #pwME in raising awareness & redressing stigma around the condition Available on My5 soon. #MECFS #MyalgicE #ExposeMENow #SaveCarlasLife

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Action for M.E.

@actionforme

5 years

Living with #MECFS . Who can relate?

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Action for M.E.

@actionforme

3 years

May is #MEAwarenessMonth and, as lockdown restrictions ease for many across the UK, we will be highlighting that #pwME have for many years been living in a perpetual lockdown. Follow #yearsinlockdown or see for more info #MECFS #myalgicencephalomyelitis

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Action for M.E.

@actionforme

1 year

Alicia, who is 26 years old and has #SevereME , bravely shared with us, in her own words, the profound impact #MECFS has had on her life and the things she misses the most. She also went onto say:

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Action for M.E.

@actionforme

6 years

A new update to the electronic health records system used by GPs in England means M.E. is now finally being listed as a neurological disorder.

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Action for M.E.

@actionforme

3 years

Action for M.E. is delighted, to see the long-awaited guideline on diagnosing and treating M.E be published today.

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Action for M.E.

@actionforme

7 years

Breaking news: NICE has decided to review the guideline on CFS/M.E. after all. More info to come.

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Action for M.E.

@actionforme

6 years

Happy to announce that we'll be funding a PhD student for three years as part a project to investigate the effects of inflammation on brain function in M.E./CFS - find out more at

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Action for M.E.

@actionforme

4 years

“Chronic illness IS lockdown." This #GivingTuesdayNow , we give thanks for Miranda Hart for speaking up on #MECFS “Chronic illness ISN'T being a bit tired, insecurity, giving up, self-pity, a choice, lack of resilience. What chronic illness is, is misunderstood.” #inclusion

Miranda Hart

@mermhart

4 years

The whole 5 mins of this video on chronic illness on my insta or FB page. It would mean a lot to me if you listened. It’s an important time to raise awareness for all those living with chronic illness as their personal lockdown will continue long after the global one lifts.

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Action for M.E.

@actionforme

4 years

We’re aware of the news that the government is considering a tax on online shopping in England. We believe it is vital that any such tax does not impact people with disabilities who only have access to home delivery. We will pass on any concerns to the government. #pwME #MECFS

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Action for M.E.

@actionforme

2 months

We're standing with other organisations in saying 'enough is enough'. The Government needs to stop viewing disabled people, including #pwME , as the problem. It's time to change the narrative. Please sign and share widely 🤝 #MyalgicE #MECFS #StandingTogether

Scope

@scope

2 months

Enough is enough. Disabled people are not the problem. Last week the Prime Minister made a speech about so-called 'sicknote culture'. He also proposed major changes to disability benefits. Today we're launching a petition in response to this full-on assault of disabled people.

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Action for M.E.

@actionforme

3 years

We’re delighted to reveal that Viking’s actress, @JennieJacques1 is to become our ambassador. Jennie shared why supporting is so important in an interview available on our website now:

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Action for M.E.

@actionforme

1 year

Today, we have joined 55 organisations, researchers, clinicians and advocates from 24 countries in responding to the recent article criticising the 2021 @NICEComms ME/CFS guideline.

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Action for M.E.

@actionforme

4 years

Huge thanks to ⁦ @CMonaghanSNP ⁩ for today’s APPG where MPs heard from our medical adviser @JuliaN_AHSNNENC @CGATist and ⁦ @mecfsbiobank ⁩‘s Dr Lacerda (pictured with ⁦ @clarejogden ⁩) on urgent need for ring-fenced #MECFS biomedical research. Full report coming soon!

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Action for M.E.

@actionforme

4 months

In , John McDonnell MP calls on the Chancellor to consider the state of services for #pwME & the funding for research into its causes & treatment. Further details & link to full article available on our website: #MECFS #MyalgicE

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Action for M.E.

@actionforme

5 years

"My doctor told me never to say I had this condition, because I would face stigma and people may not employ me in the future. Imagine being 15 years old and being told you can’t talk about something that is taking over your life." Real life with #MECFS

Times Style

@TimesStyle

5 years

Society's understanding of ME is still woefully lacking in 2019, and it's a gendered issue — affecting more women than men in an approximate ratio of 4:1. Here, readers share their #MECFS experiences with @amberlouiseb @actionforme @meassociation

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Action for M.E.

@actionforme

3 years

🔴BIG NEWS! We’ve appointed @DocStrain as our Medical Advisor. His expertise will help us in our mission to find a cure for #MEcfs and to empower people living with this disease to secure the care and support they need. Read more: #MyalgicE #LongCovid

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Action for M.E.

@actionforme

4 years

UPDATE: Oxford Health NHS Foundation Trust has now removed this resource from its website. We will be contacting other trusts who have shared it to ask them to do the same

Action for M.E.

@actionforme

4 years

We've signed @physiosforME open letter to @OxfordHealthNHS highlighting misleading info/advice for post-viral fatigue (confusing it with #MECFS ) and asking them to listen to patients on #pacing

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Action for M.E.

@actionforme

6 years

Many people with severe M.E. are unable to do any activity for themselves, even washing. Don’t assume M.E. is “just tiredness”.

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Action for M.E.

@actionforme

1 year

May 12 is #WorldMEDay & this year focuses on the key aspect of #MECFS that everyone should know about: that pushing harder can make you sicker. #MECFS is a long-term, fluctuating, neurological disease that causes many symptoms affecting many body systems.

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Action for M.E.

@actionforme

3 years

Our CEO joined the Secretary of State for Health & Social Care, the Rt Hon Sajid Javid MP, alongside Profs Sir Stephen Holgate & Chris Ponting, 2 international researchers and 3 people with M.E working with the charity to provide an update on current research & identify gaps.

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Action for M.E.

@actionforme

4 years

Action for M.E. has joined with others to highlight the immediate challenge faced by people with M.E. in accessing food, and ask for immediate action. Please see the full story on our website #pwME #StayHomeStaySafe

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Action for M.E.

@actionforme

1 year

Today, Action for M.E. launched our report ‘Patchy, Misunderstood and Overlooked: Implementation of the NICE Guideline [NG206] on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome in England’. #TakeMESeriously

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Action for M.E.

@actionforme

2 years

We are delighted to reveal the beautiful cover for @AnnakWood upcoming bird book: 25 Birds, One Year One Garden! Anna plans to donate proceeds to Action for M.E. with 50% going to biomedical research. #mecfs

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Action for M.E.

@actionforme

5 years

One of the weirdest symptoms of #MECFS is brain fog. It creates a language all of its own. My personal highlights: Foot stoney one=street Cold door=fridge Blowy one=hairdryer What’s the most ridiculous thing your brain has offered you in place of the actual word? - @mcfindoone

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Action for M.E.

@actionforme

5 years

"My body is failing me, my government shouldn't be."

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Action for M.E.

@actionforme

7 years

#mecfs is a fluctuating illness. Just because someone did something today doesn’t mean they’ll be able to do it tomorrow. #MEawareness

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Action for M.E.

@actionforme

3 months

Join the ‘Urgent Call for the Creation of an NHS Protocol for Severe Myalgic Encephalomyelitis (M.E.)' The open letter is available to read and sign here: #pwME #MyalgicE #MECFS #MyalgicEncephalomyelitis #NICEGuideline #SevereME #OpenLetter

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Action for M.E.

@actionforme

4 years

#decodeME , the world's largest #MECFS DNA study, needs you! So excited to be part of this #science collaboration and much-needed research by and for #pwme Find out more and sign-up at

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Action for M.E.

@actionforme

1 year

📢 Today is #WorldMEDay , a day dedicated to learning about, raising awareness of, and campaigning around #MECFS . This year, the @WorldMEAlliance campaign aims to ensure the harmful effect of pushing harder is the first thing that comes to mind when someone hears about M.E.

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Action for M.E.

@actionforme

5 years

Thank you @CMonaghanSNP for raising such an important & pressing issue. Our children services team spend a huge amount of time trying to support parents dealing with this exact issue. Why does this happen? Lack of understanding about #MECFS & #ignorance towards the condition.

Carol Monaghan 🏴󠁧󠁢󠁳󠁣󠁴󠁿 🇺🇦

@CMonaghanSNP

5 years

🎥 It is deeply disturbing that children who are extremely ill with #ME are being subjected to child protection proceedings. Watch my question to the PM on this issue.

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Action for M.E.

@actionforme

5 months

Action for M.E. was very concerned to see that the quote provided in the Daily Mail attributed to our medical adviser Professor David Strain, who has since confirmed he was misquoted. David has asked us to issue a statement, which you can read here: #pwME

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Action for M.E.

@actionforme

5 years

A number of you have contacted us about Rod Liddle's awful story on #MECFS in @thesundaytimes - we've chosen to comment on the story We'll continue to get involved in #ShareGoodScience to combat myths, misconceptions & stigma – we urge you to join in too.

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Action for M.E.

@actionforme

5 years

"There is excellent biomedical research going on just now but it is being funded by charity not government. Government need to take this seriously." @CMonaghanSNP Here, Here. #MEDebate

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Action for M.E.

@actionforme

5 years

Do you know someone with #MECFS ? When was the last time you saw them? M.E.'s an isolating illness that leaves #MillionsMissing . It's the greatest cause of long term absence in schools. 25% of #pwME are so severely affected they're house/bedbound. Don't forget the #HiddenFacesofME

ME Life In a Tweet

@MElifeinatweet

5 years

Downstairs my family, parent's friends and best mates are busy planning the ME fundraiser quiz. They are all here for me, yet I am too ill to see anyone. So like a ghost, I listen from afar, out of sight, trapped between the living and the dead. #myalgicE #pwme #MECFS

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Action for M.E.

@actionforme

6 months

The letter has been sent to the Chair of the Culture, Media and Sport Committee and the Chair of the Health and Social Care Committee. Our Chief Executive, Sonya Chowdhury, also wrote directly to the Director-General of the BBC last Friday to voice concerns over the episode

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Action for M.E.

@actionforme

4 months

An article in The @guardian today discusses the outdated treatment of #MECFS patients. “From harmful ‘therapies’ to social services referrals, the notion that this illness is psychosomatic is having devastating effects. It’s the greatest medical scandal of the 21s century."

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Action for M.E.

@actionforme

3 years

📢New petition launched📢 We are calling for the UK Governments to commit the same level of research funding and recognition to M.E. as we have seen with Long Covid. Sign here: More info:

New petition Equity for M.E. launches

New petition launches | Action for M.E.

www.actionforme.org.uk

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Action for M.E.

@actionforme

2 years

Our 2019 Big Survey, #pwME – including those with #SevereME - found that: • 98% had stopped or reduced social contact • 59% were no longer able to leave their home independently. Find out more in our two-page explainer on #SevereME :

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Action for M.E.

@actionforme

3 years

We'll share our letter to the Guardian here in due course if it's not published; we know @MEAssociation @PhysiosForME @LongCOVIDPhysio have written too. We're working with a number of journalists to ensure the voices and experiences of #pwME #MECFS are heard.

Dr Nicola Clague-Baker

@ClagueNjc36

3 years

This needs a response @PhysiosForME

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Action for M.E.

@actionforme

6 years

We have posted a statement on our website giving an update on our position on the PACE trial and behavioural treatments for #MECFS

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Action for M.E.

@actionforme

3 years

Our CEO @SonyaChowdhury on @BBCr4today around 07.50 to explain why the @NICEComms guideline for #MECFS , based on careful scientific consensus established by expert NICE committee, must be published without delay. Listen online at

BBC Radio 4 - Today, 18/08/2021

News and current affairs, including Sports Desk, Weather and Thought for the Day.

www.bbc.co.uk

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Action for M.E.

@actionforme

5 months

We are delighted to announce that Baroness Scott of Needham Market has joined our Parliamentary Champions network! Baroness Scott will work with our other champions to proactively engage in debates & discussions on #MECFS throughout the year. More info:

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Action for M.E.

@actionforme

3 years

Last night’s @BBCNewsnight tackled the issue of treatment for #longCovid and drew parallels with treatment options for #MECFS . We agree with @MEAssociation and refute the view that exercise leads to recovery for #pwME #MedTwitter #gpnews @NICEComms

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Action for M.E.

@actionforme

6 years

Find the person with #MECFS : 👩🏻👩🏼👩🏽👩🏾👩🏿👩🏻👩🏼👩🏽👩🏾👩🏿 👨🏻👨🏼👨🏽👨🏾👨🏿👨🏻👨🏼👨🏽👨🏾👨🏿 👧🏻👧🏼👧🏽👧🏾👧🏿👧🏻👧🏼👧🏽👧🏾👧🏿 👦🏻👦🏼👦🏽👦🏾👦🏿👦🏻👦🏼👦🏽👦🏾👦🏿 Can’t find them? That’s because they live among us, looking like normal people. The only real difference is that they have a chronic condition. #TuesdayMemes #pwME

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Action for M.E.

@actionforme

5 years

For everyone who has asked us to share this article from our membership magazine, InterAction: For the non-believers - a summary of scientific evidence for #MECFS by @Dr_M_Guthridge You can access a printable PDF version of this here➡️

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Action for M.E.

@actionforme

1 year

As a @WorldMEAlliance Member (our CEO @SonyaChowdhury is co-chair) we join global colleagues in writing to @guardian refuting the outrageous claims from a small group of researchers that the #MyalgicEncephalomyelitis @NICEComms Guideline is flawed.

NICE guideline is robust and globally supported - World ME Alliance

On 11th July, a new article was published in the Journal of Neurology, Neurosurgery and Psychiatry purporting to demonstrate flaws in the NICE ME/CFS guideline review process. The World ME Alliance...

worldmealliance.org

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Action for M.E.

@actionforme

3 years

Pippa: "Legally we can go wherever we want, but M.E./CFS means we have to stay where we are. In many ways, we’re in a perpetual lockdown." Join our campaign to raise awareness of M.E: #yearsinlockdown #butyoudontlooksick #invisibledisability

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Action for M.E.

@actionforme

5 years

"I have been the doctor who has said... maybe you should go swimming a bit more & not truly understand what it means... I have also experienced what it feels like to be that patient." - Nina Muirhead, speaking about the importance of education of medical professionals on #MECFS .

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Action for M.E.

@actionforme

5 years

“We are outraged that people with M.E. are being told to keep quiet about the reality of their experience." 250,000 people in the UK have #MECFS . It has life devastating effects. Minimising their condition and silencing #pwME only encourages stigma.

Jobseekers told to call their depression 'low mood' on applications

Official advice, also to describe ME as ‘fatigue-related condition’, criticised by charities

www.theguardian.com

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Action for M.E.

@actionforme

5 years

“I rarely see a doctor because it’s not worth it. Last time, the doctor tried to tell me that I was depressed. I said that I’m fed up w/the illness but I’m not depressed. He said: when does one become the other? I sighed.” John, a #pwME , talking about medical support for #MECFS

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Action for M.E.

@actionforme

1 year

Are you living with #MECFS , #LongCovid or a health condition that prevents you from getting to a place that is special to you? Bristol-based artist, Alison Larkman, invites you to take part in her powerful awareness initiative, the @bethereificould project.

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Action for M.E.

@actionforme

3 years

"NICE is expected to conclude that the #NHS should no longer recommend a controversial exercise therapy for #MECFS after patients said that exertion made their illness worse. The conclusions have potential implications for the treatment of #LongCovid ."

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Action for M.E.

@actionforme

4 years

The National Institute for Health and Care Excellence ( @NICEComms ) has published draft guidance on the diagnosis, treatment and management of #mecfs We’re summarising and putting out a survey about this so you can have your say. See more ⬇️ #pwME

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Action for M.E.

@actionforme

6 months

Are you a young person living with severe ME, or do you know someone who is? We're teaming up with a TV channel for a special segment on ME, and looking for a young person who can share their lived experience. #MyalgicE #MECFS #pwME #SevereME

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Action for M.E.

@actionforme

7 months

Announcing LOCOME! 🔎 We are thrilled to share that Action for M.E., @PrecisionLife and @MRC_HMU have been awarded an @InnovateUK research grant to improve diagnosis and treatment of #MECFS and #LongCovid ! #PrecisionMedicine #Research #Genetics #DNA

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Action for M.E.

@actionforme

1 year

When it comes to M.E., it’s crucial to understand that pushing harder can make you sicker. This is a fundamental aspect of the condition that is often misunderstood by those who are unfamiliar with it. For #pwSevereME , PEM can be particularly devastating.

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Action for M.E.

@actionforme

5 years

"I very much hope that we will agree it is simply not acceptable that seriously ill people should be left feeling they are somehow to blame for not getting better" @stephenkerrMP #MEDebate

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Action for M.E.

@actionforme

4 years

Thank you @mermhart for highlighting the daily challenges for people with #chronicillness and for mentioning the work we do to support the #MECFS community. See from 10 mins into the video if you'd like to hear Miranda talk on chronic illness. #pwME

If you are bored enough have a listen! I had a few things to share....

If you are bored enough have a listen! I had a few things to share. The thing I really want to talk about in these times is raising awareness of chronic...

www.facebook.com

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Action for M.E.

@actionforme

5 years

The stigma we'd like broken is the idea that #pwME are just "tired." #MECFS is a long term (chronic), fluctuating neurological condition that causes symptoms affecting many body systems. An estimated 250,000 people in the UK have M.E. and 17 million worldwide.

John Iadarola

@johniadarola

5 years

What stigma do you want broken?

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Action for M.E.

@actionforme

6 years

Dr Muirhead: @ukmedschools have given me the green light to survey all the medical schools in the UK about how they teach students about #MECFS and #pwME . "I want to know details: what are they being taught, who is teaching it, what else they'd be willing to include." #CMRC2018

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