Christian Lawson-Perfect @christianp

7 posts4 participants0 posts today

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**Irish ME/CFS Association** @IrishMECFSAssociation@mastodon.ie · 1d

Irish ME/CFS Association @IrishMECFSAssociation@mastodon.ie

12/

May 12 is International #MyalgicEncephalomyelitis (ME) Day (and May is ME Awareness Month) You can help by sharing and/or liking this
(well-made) video.

(3 minutes)

https://www.youtube.com/watch?v=IOflARSgNnE

Day 12
#MyalgicE #May12 #May12th #WorldMEDay2023
#WorldMEday #MEAwarenessDay

@mecfs

YouTubeC.F.S/M.E - The Torturous DiseaseBy pkblaze1312

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**Irish ME/CFS Association** @IrishMECFSAssociation@mastodon.ie · 2d

Irish ME/CFS Association @IrishMECFSAssociation@mastodon.ie

12/

May 12 is International Myalgic Encephalomyelitis (ME) Day (and May is ME Awareness Month).

You can help by sharing and/or liking this image.

Day #12

#MyalgicE #MyalgicEncephalomyelitis #May12 #May12th #MEAwarenessDay #MillionsMissing
@mecfs

Most people will know that FLORENCE NIGHTINGALE was the founder of modern nursing and a great innovator. Some people may recall that she invented the pie chart (actually, it was William Playfair who invented i, she just popularised its use). Afew people may know that her parents- called her Florence after the Italian city where she was born. But she also suffered with a DEBILITATING and PAINFUL DISEASE which left her HOUSEBOUND and BEDBOUND for DECADES. This disease is now recognised as Myalgic Encephalomyelitis (ME) _ (ME is also known as Chronic Fatigue Syndrome in some countries) A Florence Nightingale's birthday was 12th MAY. In her honour, this day has been chosen as the International Myalgic Encephalomyelitis Awareness Day. More than 100 YEARS after her death, this disease is STILL POORLY UNDERSTOOD, it is inadequately researched, there is NO CURE or universally effective treatment. MILLIONS of people (including children) are SUFFERING. WHAT WOULD FLORENCE NIGHTINGALE THINK?

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**Irish ME/CFS Association** @IrishMECFSAssociation@mastodon.ie · 2d

Irish ME/CFS Association @IrishMECFSAssociation@mastodon.ie

11/
May is Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Awareness Month, with May 12 being International ME/CFS Day.

You can help by sharing +/or liking this image.

Day #11

#MEcfs #CFS #MyalgicE #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #May12 #May12th

@mecfs

REPOST THIS RIBBON IF YOU OR SOMEONE YOU KNOW SUFFERS FROM Myalgic Encephalomyelitis (ME) in some countries also known as Chronic Fatigue Syndrome

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**Irish ME/CFS Association** @IrishMECFSAssociation@mastodon.ie · 4d

Irish ME/CFS Association @IrishMECFSAssociation@mastodon.ie

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)

https://www.youtube.com/watch?v=EvrU-ciEFcM&feature=youtu.be

Day 9
#MyalgicE #MyalgicEncephalomyelitis
@mecfs #mecfs

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

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**Irish ME/CFS Association** @IrishMECFSAssociation@mastodon.ie · 5d

Irish ME/CFS Association @IrishMECFSAssociation@mastodon.ie

8/
May is Myalgic Encephalomyelitis (M.E.) Awareness Month.

You can help by sharing and/or liking this image.

Day 8

#MyalgicE #MyalgicEncephalomyelitis
@mecfs #mecfs

We can experience: fatigue headache hausea fever vomiting diziness vertigo diarrhoea pain paralysis seizures hypersensitivity brainfog memory problems infections insomnia exhaustion weakness palpitations blurred vision and more... The Horror of M.E. Has a photo of a woman lying down

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**Irish ME/CFS Association** @IrishMECFSAssociation@mastodon.ie · 6d

Irish ME/CFS Association @IrishMECFSAssociation@mastodon.ie

7/
May is Myalgic Encephalomyelitis (M.E.) Awareness Month.

You can help by sharing and/or liking this image.

Day #7

#MEcfs #CFS #MyalgicE #MyalgicEncephalomyelitis #MyE #CFIDS

@mecfs

A Alone. B Before C Chronic, D Debilitating, E Exhausting, F Fatigue. H G Growing Headaches. Incapacitating. JJumbled words. K Knowing L Life, M May N Never be the same. O Overwhelming P Pain. Q Quiet R Restlessness. S Stop you in your T Tracks. U Unpredictable. V Vanquished. W With X Xtreme Y Yearning, for lost Z Zeal. The ABC's of living with CFIDS Poem by a CFIDS sufferer of 13 years Billie Jo Robbins Myalgic Encephalomyelitis (ME) in some countries also known as Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS) Myalgic Encephalomyelitis is

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**Irish ME/CFS Association** @IrishMECFSAssociation@mastodon.ie · 6d

Irish ME/CFS Association @IrishMECFSAssociation@mastodon.ie

May is #MyalgicEncephalomyelitis (M.E.) Awareness Month.

You can help by sharing and/or liking this video. It's been approved for continuing medical education in the US
https://youtu.be/RC9TjgE_PlU?si=wQzPnbfDibMzj7Oa

Day 7 #MyalgicE #ChronicFatigueSyndrome

@mecfs

youtu.be- YouTubeEnjoy the videos and music you love, upload original content, and share it all with friends, family, and the world on YouTube.

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**Irish ME/CFS Association** @IrishMECFSAssociation@mastodon.ie · May 6

May 6

Irish ME/CFS Association @IrishMECFSAssociation@mastodon.ie

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

You can help by reposting and/or liking

Day #6

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #MyalgicE #PwME #CFSME #meeps @mecfs

I suffer from your inability to see my disability. I am a silent sufferer-an ME sufferer. Myalgic Encephalomyelitis Awareness

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**Irish ME/CFS Association** @IrishMECFSAssociation@mastodon.ie · May 5

May 5

Irish ME/CFS Association @IrishMECFSAssociation@mastodon.ie

5/
May is Myalgic Encephalomyelitis (M.E.) Awareness Month.

You can help by sharing and/or liking this image.

Day #5

#MEcfs #CFS #MyalgicE #MyalgicEncephalomyelitis #chronicfatiguesyndrome
@mecfs

Myalgic Encephalomyelitis (ME) What is behind the illness with the hard to pronounce name? in some countries as Chronic Fatigue Syndrome Can't stand 25% of sufferers are housebound, wheelchair-bound or bedbound PAIN muscle pain INSOMNIA NEUROIMMUNE DISEASE joint pain disordered sleep muscle cognitive weakness problems unable to read sometimes concentrate. watch TV FATAL www.facebook.com/ MEAwarenessPics RESEARCH INTO THE BIOLOGY OF THE ILLNESS IS NEEDED TO FIND TREATMENTS invisible illness nausea headaches chronic flu-like symptoms DISORDERED IMMUNE SYSTEM debilitating severe CHILDREN fatigue and get it too exhaustion NO CURE the sickest are paralyzed endocrine irregularities and tubefed millions around the world suffer in painful isolation ALL SYMPTOMS

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**Irish ME/CFS Association** @IrishMECFSAssociation@mastodon.ie · May 4

May 4

Irish ME/CFS Association @IrishMECFSAssociation@mastodon.ie

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

You can help by sharing and/or liking this this image.

Day #4
#MEcfs #CFS #MyalgicE #MyalgicEncephalomyelitis #ChronicFatigueSyndrome @mecfs

ME is also known as Chronic Fatigue Syndrome in some countries REPEATED INFECTIONS HEADACHES FEVER Myalgic CHRONIC SORE THROAT MEMORY PROBLEMS encephalomyelitis INSOMNIA PAIN dozens of everchanging symptoms on a daily basis www.facebook.com/ MEAwarenessPics PLEASE JOIN US! ALLERGIES AND INTOLERANCES SENSORY OVER-LOAD BLURRED Vision HEART PALPITATIONS BRAINFOG MUSCLE WEAKNESS DIZZINESS PROBLEMS DIGESTIVE

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**Irish ME/CFS Association** @IrishMECFSAssociation@mastodon.ie · May 3

May 3

Irish ME/CFS Association @IrishMECFSAssociation@mastodon.ie

3/
May is Myalgic Encephalomyelitis (M.E.) Awareness Month.

You can help by reposting and/or liking this image.

Day #3
#myalgicencephalomyelitis #myalgice #mecfs
@mecfs

MUSCLE Myalgic Encephalomyelitis BRAIN PAIN SPINAL CORD INFLAMMATION- (GETS SHORTENED TO "ME") in some countries also known as Chronic Fatigue Syndrome www.pinterest.com/MEAwarenessPics

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**Tom Kindlon** @tomkindlon@disabled.social · Mar 28

Mar 28

Tom Kindlon @tomkindlon@disabled.social

Of note: “exertional dyspnea” with a prevalence of approx. 80% in ME/CFS: Shortness of breath during exercise (exertional dyspnea) produces a sensation of not being able to "get enough air" and a feeling of being "out of breath

#MyalgicE #MEeps #CFSME #LongCovid #NeuroME #mecfs
@mecfs #longcovid @longcovid

**Tom Kindlon** @tomkindlon@disabled.social · Mar 20

Mar 20

Tom Kindlon @tomkindlon@disabled.social

It's 8-year anniversary of this paper of mine. It could be useful if somebody feels coerced into doing graded activity or exercise programmes; also to counter claims that the #PACEtrial showed graded activity programs are safe.

https://journals.sagepub.com/doi/full/10.1177/1359105317697323

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #CBT

Do graded activity therapies cause harm in chronic fatigue syndrome?
Tom Kindlon 1
Affiliations expand
PMID: 28805516 DOI: 10.1177/1359105317697323
Abstract
Reporting of harms was much better in the PACE (Pacing, graded Activity, and Cognitive behavioural therapy: a randomised Evaluation) trial than earlier chronic fatigue syndrome trials of graded exercise therapy and cognitive behavioural therapy. However, some issues remain. The trial's poor results on objective measures of fitness suggest a lack of adherence to the activity component of these therapies. Therefore, the safety findings may not apply in other clinical contexts. Outside of clinical trials, many patients report deterioration with cognitive behavioural therapy and particularly graded exercise therapy. Also, exercise physiology studies reveal abnormalities in chronic fatigue syndrome patients' responses to exertion. Given these considerations, one cannot conclude that these interventions are safe and risk-free.

Keywords:

**Tom Kindlon** @tomkindlon@disabled.social · Mar 8

Mar 8

Tom Kindlon @tomkindlon@disabled.social

Remembering ME activist (& my friend) Robert "Bob" Courtney, who passed away on March 7, 2018.

This is from the @MEAssociation magazine

One can read about some of the specifics of Bob's work here: http://me-pedia.org/wiki/Robert_Courtney

#MyalgicEncephalomyelitis #MEcfs #CFS #MyalgicE #PwME #ME @mecfs

Screenshot of ME Association article/obituary on Robert Courtney

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**Tom Kindlon** @tomkindlon@disabled.social · Feb 22

Feb 22

Tom Kindlon @tomkindlon@disabled.social

2/
From: "Assessment of Post-Exertional Malaise (PEM) in Patients with ME and CFS: A Patient-Driven Survey" (2019) by a Leonard A. Jason team https://pmc.ncbi.nlm.nih.gov/articles/PMC6468435/pdf/diagnostics-09-00026.pdf

#MyalgicE #MEeps #CFSME #CFIDS #SEID #PwLC
#PostCovidSyndrome #postcovid @mecfs #MEcfs #CFS #PwME @longcovid
#LongCovid

**BenNevis** @BenNevis@mastodon.org.uk · Feb 3

Feb 3

BenNevis @BenNevis@mastodon.org.uk

Another relatively early mention of the term #myalgicencephalomyelitis in the UK press from this day, forty-two years ago.

The Guardian, UK. 2nd February 1983. #mecfs #cfsme #myalgice
@rfh1955

**Tom Kindlon** @tomkindlon@disabled.social · Jan 27

Jan 27

Tom Kindlon @tomkindlon@disabled.social

New:
Digital health app data reveals an effect of ovarian hormones on long COVID and myalgic encephalomyelitis symptoms

https://www.medrxiv.org/content/10.1101/2025.01.24.25321092v1

"Menstruation is associated with worsened symptoms in long COVID and ME/CFS"

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE Hashtags:
@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC

**Irish ME/CFS Association** @IrishMECFSAssociation@mastodon.ie · Jan 17

Jan 17

Irish ME/CFS Association @IrishMECFSAssociation@mastodon.ie

GP Educational Webinar on #PVFS and ME/CFS

Dr Ros Vallings, a New Zealand GP who is an expert on ME/ #CFS, will present a free talk followed by a Q&A session on Tuesday, April 8 7:30 PM for just over one hour.

https://irishmecfs.org/blog/april-8-2025-educational-event-for-gps-key-messages-for-primary-care-on-the-diagnosis-and-management-of-post-viral-fatigue-syndrome-and-mecfs

#MyalgicE #PostViralSyndrome #MedEd #CFSME #MEcfs @mecfs

Irish ME/CFS Association - for Information, Support & ResearchApril 8, 2025: Educational event for GPs: "Key messages for Primary Care on the Diagnosis and Management of Post-Viral Fatigue Syndrome and ME/CFS"

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**Tom Kindlon** @tomkindlon@disabled.social · Jan 10

Jan 10

Tom Kindlon @tomkindlon@disabled.social

From: "Assessment of Post-Exertional Malaise (PEM) in Patients with ME and CFS: A Patient-Driven Survey" (2019) by a Leonard A. Jason team https://pmc.ncbi.nlm.nih.gov/articles/PMC6468435/pdf/diagnostics-09-00026.pdf

#MyalgicE #PwME #MEeps #CFSME #CFIDS #SEID #PwLC
#mecfs #LongCovid
#PostCovidSyndrome #postcovid @mecfs @longcovid