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Irish ME/CFS Association

🧵
May is Myalgic Encephalomyelitis (ME) Awareness Month.

You can help by liking and/or sharing this video. This 2017 TED talk features Jennifer Brea

youtu.be/Fb3yp4uJhq0

@mecfs

Day #1

1/

YouTubeWhat happens when you have a disease doctors can't diagnose | Jennifer BreaBy TED
Irish ME/CFS Association

‪2/‬

‪May is Myalgic Encephalomyelitis (ME) Awareness Month. ‬

‪You can help by sharing and/or liking this video. It is 3 minutes 5 seconds long. ‬

‪youtube.com/watch?v=TGIo1v7KVJQ ‬
‪--- ‬
‪This film will give you an introduction to PEM (Post Exertional Malaise).‬
‪--- ‬
‪Day 2 ‬
@mecfs

YouTubeME and PEMBy Norges ME-forening - Rogaland Fylkeslag
Irish ME/CFS Association

3/
May is (ME) Awareness Month

You can help by liking +/or sharing this video

(9 minutes)This is ME (2020) "A short film exploring 'Spoon Theory' told through the eyes of a young woman struggling with ME/CFS"
vimeo.com/338532785
Day 3

@mecfs

VimeoThis is ME (2020)A short film exploring 'Spoon Theory' told through the eyes of a young woman struggling with ME/Chronic Fatigue Syndrome ** Follow Pickup_Films on Twitter…
Irish ME/CFS Association

4/

(2 minutes)
"What is ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome)?" By @brokenbattery

youtube.com/watch?v=X6f4zCe2ZtA

You can help by liking and/or reposting this short video


Day 4
@mecfs

YouTubeWhat is ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome)By Broken Battery
Irish ME/CFS Association

5/
May is Myalgic Encephalomyelitis (ME) Awareness Month.

You can help by sharing and/or liking this 102-second video. "What is ME/CFS?" (excerpt from LEFT OUT, reproduced with kind permission from UpNorth Film, Norway)

youtu.be/bXAdsrk0FZw


@mecfs

Day 5

YouTubeWhat is ME/CFS? (excerpt from LEFT OUT, reproduced with kind permission from UpNorth Film, Norway)By ME CFS South Australia Inc
Irish ME/CFS Association

‪6/‬
‪May is (ME) Awareness Month.‬

‪You can help by reposting +/or liking this video. It's a preview of a documentary, formerly called "Blue Ribbon" (now called The Forgotten Plague) (3 mins 5 secs)‬

‪youtu.be/y69PqwZoUws‬

‪Day 6 ‬
@mecfs

YouTubeThe Blue Ribbon: Sneak PeekBy Nicole Castillo
Irish ME/CFS Association

8/
May is (M.E.) Awareness Month. You can help by sharing +/or liking this video.

It was made by a woman, Laurel, with severe ME Living with Severe ME (5 minutes 13 seconds)
youtu.be/LvweCk44WHs

Day 8


@mecfs

YouTubeLiving with Severe ME: Laurel's CFSAC Testimony (2009)By Laurel B
Irish ME/CFS Association

9/
May is Myalgic Encephalomyelitis (M.E.) Awareness Month.

You can help by sharing and/or liking this documentary, "Mom Needs to Lie Down".
It's a short Canadian film made in 2014. (11 minutes 25 seconds)

youtube.com/watch?v=EvrU-ciEFc

Day 9

@mecfs

YouTubeMom Needs To Lie Down: The years and lives slept away by ME/CFSBy Taylor C
Irish ME/CFS Association

10/

May is (M.E.) Awareness Month.

You can help by sharing this documentary, "Invisible". It's a 60-minute documentary made in 2009 (but is timeless) [Skip forward to 14:50 to go to the start of "Invisible" proper]
cctv.org/watch-tv/programs/inv

Day 10

@mecfs

Invisible documentary DVD cover
Irish ME/CFS Association

13/

This is a short (78-second) video about postexertional malaise in ME/CFS.

It uses the battery analogy, but also highlights the effects of payback. There is no sound.

May is .

You can help by reposting and/or liking this video
youtube.com/watch?v=THlRW_YGZmE

Day 13

@mecfs

YouTubePEM - post exertional malaiseBy Norges Myalgisk Encefalopati Forening
Irish ME/CFS Association

14/

(2 minutes)
"How does it feel to live with ME/CFS? Patients describe what it's like"

May is ME Awareness Month.
You can help raise awareness and understanding by sharing and/or liking this video

youtube.com/watch?v=1kEBGfQ1DhM

Day 14


@mecfs

YouTubeHow does it feel to live with ME/CFS? Patients describe what it's likeBy Open Medicine Foundation - OMF
Irish ME/CFS Association

15/

May is Myalgic Encephalomyelitis (M.E.) Awareness Month.

You can help by sharing and/or liking this 7-minute video, "What is ME? (Myalgic Encephalomyelitis aka Chronic Fatigue Syndrome CFS)" by Broken Battery

youtube.com/watch?v=VKPdgz612nU

Day 15


@mecfs

YouTubeWhat is ME/CFS? (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome)By Broken Battery
Irish ME/CFS Association

18/

May is (ME) Awareness Month.

You can help to raise awareness and understanding by retweeting and/or
liking this 7 minute 8 second-video made on a young UK woman with severe ME
youtube.com/watch?v=cPH3kKkEYAI

Day 18

 @severeme
@mecfs

YouTubeDocumentary on life with severe ME/Chronic Fatigue Syndrome on BBC1By Claire Wade
Irish ME/CFS Association

19/

May is Myalgic Encephalomyelitis (M.E.) Awareness Month

You can help by re-posting +/or liking this video. "A wonderfully illustrated comic to explain M.E also known as Chronic Fatigue Syndrome (CFS) to other people" (2 minutes)

youtu.be/G4Rijt8jtZg

Day 19


@mecfs

YouTubeComic: But........ you did it before by Mahli QuinnBy ME Association
Irish ME/CFS Association

20/

May is M.E. Awareness Month.

You can help by sharing and/or liking this video, a 1993 documentary, Living Hell. 14:00-1:10:16 (i.e. 56 minutes). There are also 2 interviews from Tom Hennessy.
youtube.com/watch?v=SyB49g_l9Sg

Day 20


@mecfs

YouTubeTom Hennessy on MacNeil Lehrer, Living Hell, Larry King - 1992By May12dotOrg
Irish ME/CFS Association

21/

May is ME/CFS Awareness Month.

You can help raise awareness and understanding by sharing and/or liking this 30-second video from the US Disease Control and Prevention (CDC)

youtu.be/bCUvygbYdXs

Day 21

@mecfs

YouTubeCFS/ME CDC "Missing My Life"By yelliat
Irish ME/CFS Association

22/

Day 22

Educate others about Myalgic Encephalomyelitis / Chronic Fatigue Syndrome during ME/CFS Awareness month (May) by sharing and/or liking this 3-minute video by @MEAssociation

youtube.com/watch?v=PKfdFzvrzR


@mecfs

YouTubeIf OnlyBy cslangman
Irish ME/CFS Association

23/

Educate others about Myalgic Encephalomyelitis / Chronic Fatigue Syndrome during ME/CFS Awareness month (May) by sharing and/or liking this 9-minute video

youtu.be/r0w9-eQ_fKQ

Day 23

@mecfs

YouTubeM.E. / Chronic Fatigue Syndrome - Sleepydust VideoBy officialsleepydust
Irish ME/CFS Association

24/

May is Myalgic Encephalomyelitis (M.E.) Awareness Month. You can help by sharing and/or liking this video, "Reduced Function". Association trustees Tom & Vera Kindlon (15:24-16:56) are among the interviewees* in this, at some points, very moving 20-minute video describing how ME/CFS has led to reduced functioning. However we would encourage people to watch the whole video, if possible, as different people describe different losses & impairments dialogues-mecfs.co.uk/films/pa
@mecfs

DialoguesPatients' Accounts - Symptoms - Dialogues
*
Irish ME/CFS Association

27/

May is Myalgic Encephalomyelitis (M.E.) Awareness Month.

You can help by sharing and/or liking this 15-minute video on & : "Severe & Very Severe ME / CFS Myalgic Encephalomyelitis / Chronic Fatigue Syndrome"

Includes comments from professionals (incl. Drs Muirhead/Weir/Speight/Shepherd/Nacul & Caroline Kingdon (nurse), patients & carers (incl. Association chairperson) Discusses various distressing topics dialogues-mecfs.co.uk/films/se Day 27


@mecfs

DialoguesSevere & Very Severe ME / CFS - Dialogues
Irish ME/CFS Association

28/

May is ME Awareness month

You can help by sharing and/or liking this video. Teenager Ashleigh Lovett made a short (3 minute 28 second) film explaining M.E. Another teenager wore weights on legs and arms to partly experience M.E. symptoms http://youtube.com/watch?v=py-DWLyhJ2g Day 28

@mecfs

Two years after she was diagnosed with ME, a Fixer from Essex is helping others to understand the condition that can leave her bed-bound. Seventeen-year-old Ashleigh Lovett, who lives in Harwich, is concemed that ME, also known as chronic fatigue syndrome, is often mistaken for laziness. With Fixers, she's created a film to shatter that myth and reveal the challenges faced by those living with the symptoms which include extreme physical and mental tiredness. wanted to raise awareness of the condition to better inform people about what it actually is,' says Ashleigh.
Irish ME/CFS Association

29/

May is Myalgic Encephalomyelitis (M.E.) Awareness Month.

You can help by sharing and/or liking this video

Fixer Ashleigh and Jodie Cleary discuss their experiences of M.E. (3 minutes 38 seconds). Also includes Jane Colby of the @tymestrust. ITV News Anglia (local UK news programme) youtube.com/watch?v=ooQD0udeydY Day 29


@mecfs

A Fixer from Harwich in Essex wants to raise awareness of the medical condition Myalgic Encephalomyelitis (ME) to stop people mistaking it for laziness. Myalgic Encephalomyelitis ME (Myalgic Encephalomyelitis) is a chronic (long-lasting) and severe neurok condition. It was formerly known as Atyp The term Chronic Fatigue Syndrome (CFS) used but may include other fatigue states. Va fections are known triggers of ME mptoms of ME and central nervous system of memory, concentr tion and fing understand.' FRENCH Her story was shown on ITV News Anglia on Thursday 3rd October. Fixer Ashleigh Lovett (17) was diagnosed with ME, or chronic fatigue syndrome, two years ago. Her symptoms include heavy limbs and painful legs, and some days it is so bad that she is unable to get out of bed. 'People didn't believe I was ill at first,' says Ashleigh. 'There is no physical sign of ME, so people used to say I was spoilt and lazy. It hurt a lot." With the help of Fixers, Ashleigh wants to create a weighted suit for people to wear so they can understand what it is like to live with ME. 'I did feel very isolated from everyone else because I didn't know anyone who had it,' Ashleigh explains. "I didn't know where to turn to talk about it, because I didn't think anyone else would
Irish ME/CFS Association

30/

May is Myalgic Encephalomyelitis (M.E.) Awareness Month.

Daughter tries to raise awareness and understanding of M.E., which her mother suffers from, with a film she made, "Sleeping Beauty". Piece from a UK local TV station itv.com/news/meridian/update/2 Day 30 1/n


@mecfs

Trying to understand ME - a daughter's story The illness ME or Chronic Fatigue Syndrome has long been misunderstood - dubbed as Yuppie Flu in the 80s, and dismissed by many in the medical profession - its been a long battle for those with the condition to get recognition and research. Causing chronic pain, exhastion and a total inability to function, much still needs to be done to help sufferers and find effective treatments. But to help people understand what it's like to live with the condition a young woman from Gosport has told her mothers story. She's hoping the Sleeping Beauty film she's made with Fixers - the campaign that gives young people a voice - will open people's eyes to the terrible reality of life with ME To find out more about Fixers go to Fixers.org.uk
Irish ME/CFS Association

30 part b/

Here's the full video, "Sleeping Beauty", that a daughter of a woman with ME made to increase awareness and understanding of the illness (4 minutes 32 seconds)

youtube.com/watch?v=RFsjijSnefE

Day 30

@mecfs

Becoming aware of the struggles faced by people living with ME when her mother received the diagnosis Holly Ramsley is using a famous fairy tale to banish myths about the condition
Irish ME/CFS Association

31/

May is Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Awareness Month. You can help by sharing and/or liking this video. "Unbroken" (and "Seabiscuit") author, Laura Hillenbrand opens up about her own personal struggle with ME/CFS youtu.be/Mkl-tNe7wvM Day31


@mecfs

YouTube"Unbroken" author opens up about her own personal struggleBy Face the Nation
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