A Song for People with MECFS

Each year May is designated International M.E. Awareness Month (#InternationalMEAwarenessMonth) aka M.E. Awareness Month (#MEAwarenessMonth). The blue hearts 🩵 💙 or blue ribbons one might come across especially this month represent those of us suffering from Myalgic Encephalomyelitis (M.E.), often termed Chronic Fatigue Syndrome (CFS), as well as those with Fibromyalgia (pwFM) or Post Viral Fatigue Syndrome (PVFS). The colour is taken from the flower forget-me-not, because most folk and the serious ramifications of this incurable and thus far untreatable illness are hidden from society at large. Now, post-Covid19, it effects more than 500,000 in the UK alone on a very conservative estimate.

I struggle to compose blogs these days. However, this post is made up of snippets previously posted on my social-media.

*

Avi Kaplan’s song “I’ll Get By” could be the theme-tune for folk with M.E., especially those of us suffering from severe ME. I love that the hashtag equates to #IllGetBy, which can be read as the actual title or as the ill get by. 💙

Below is the video which links to YouTube.

Full lyrics & credits follow:

I’ll Get By

Early in the morning

I feel stones upon my chest

That I carry to the evening

'Til I lay back down to rest

But I'll, I'll, I'll

I'll get by

I'll, I'll, I'll

I'll get by

I'm tired and growing weary

Of these clouds that follow me

Swallowed by the shadows

When it's sunshine that I need

But I'll, I'll, I'll

I'll get by

I'll, I'll, I'll

I'll get by

I've been feeling hollow

Yeah, my soul just can't be found

So fill me with the feeling

That this song will turn around

Take all my cares away

Lighten my load

Trust it'll be okay

But 'til then I'll go

Onward down the road

Carried by the hope

Then I'll, I'll, I'll

I'll get by

II'll, I'll, I'll

I'll get by

Yeah, I'll, I'll, I'll

I'll get by

I'll, I'll, I'll

I'll get by

Source: Musixmatch

Songwriters: Avi Kaplan / Daniel Ellsworth Mathews

I’ll Get By lyrics © Backfire Publishing

*

For those wishing to know about Avi Kaplan, here is the link to Wikipedia’s article on him: https://en.wikipedia.org/wiki/Avi_Kaplan

For those wishing to listen to more of Avi Kaplan’s music, here is the link to his YouTube channel: https://youtube.com/@AviKaplanMusic

*

Tweets for M.E. Awareness Month

 

Regular readers of this blog are aware that I am inter alia a person with Myalgic Encephalomyelitis (pwME) and Fibromyalgia (FMS). Each May is celebrated annually as International M.E. Awareness Month due to the International M.E. Awareness Day falling on 12th May (Florence Nightingale’s birthday). This year, International M.E. Awareness Week, the week in which 12th May falls, is Monday 11th to Sunday 17th May.

[Image description: a blue equilateral triangle on a black background; above the apex the words MYALGIC ENCEPHALOMYELITIS; below the triangle base the slogan SILENCE=LIVING DEATH.]

I am categorised as having severe M.E.  For me, this means I sleep for on average 14.5 hours per day, but during the wintry weather I can sleep up to twenty-two hours in any twenty-four hour period. Additionally I am mostly bed-bound at this time of the year. My cognitive abilities are invariably worse in the cooler months. So, knowing this, I have prepared my tweets for the whole month.

Within each tweet I have placed multiple hashtags, some of which will not be appropriate at any given time, thus these will need to be deleted prior to posting.

If the reader wishes to use any of these pre-prepared tweets, you are at liberty to do so. However, please note that some may be deemed unsuitable for workplace-viewing. I leave it to the tweeters’ discretion whether or not to add the #NSFW hashtag.

After the thirty-five tweets, one will find two groups of hashtags. Again, feel free to copy and paste if wanted.

The tweets:

* tweet 1:

Computer-Usage for #pwME or other #ChronicIllnesses (2020).

#MEAwarenessMonth/Week/Day

#MEAwarenessMonth2021/Week2021(11-17th May)/Day2021

#InternationalMEAwarenessMonth/Week/Day

#InternationalMEAwarenessMonth2021/Week2021/Day2021

#MyalgicEncephalomyelitis #ME #MEcfs

#ChronicFatigueSyndrome #CFS #CFSme

https://crippledqueeranglo-europeanranter.blogspot.com/2021/03/computer-usage-for-pwme-or-other.html

* tweet 2:

Missing (2020) - a #poem reflecting on a #pwME’s personal losses due to #ME.

#MEAwarenessMonth/Week/Day

#MEAwarenessMonth2021/Week2021(11-17th May)/Day2021

#InternationalMEAwarenessMonth/Week/Day

#InternationalMEAwarenessMonth2021/Week2021/Day2021

#MyalgicEncephalomyelitis #MEcfs

#ChronicFatigueSyndrome #CFS #CFSme

https://crippledqueeranglo-europeanranter.blogspot.com/2021/01/missing-poem.html

* tweet 3:

#PainPatches - a G_dsend! (2020) - #PainControl for a #pwME.

#MEAwarenessMonth/Week/Day

#MEAwarenessMonth2021/Week2021(11-17th May)/Day2021

#InternationalMEAwarenessMonth/Week/Day

#InternationalMEAwarenessMonth2021/Week2021/Day2021

#MyalgicEncephalomyelitis #ME #MEcfs

#ChronicFatigueSyndrome #CFS #CFSme

https://crippledqueeranglo-europeanranter.blogspot.com/2021/01/pain-patches-gdsend.html

* tweet 4:

Life - Love, Lust & Loneliness (2020) - a #pwME living with the ramifications of #ME.

#MEAwarenessMonth/Week/Day

#MEAwarenessMonth2021/Week2021(11-17th May)/Day2021

#InternationalMEAwarenessMonth/Week/Day

#InternationalMEAwarenessMonth2021/Week2021/Day2021

#MyalgicEncephalomyelitis #MEcfs

#ChronicFatigueSyndrome #CFS #CFSme

https://crippledqueeranglo-europeanranter.blogspot.com/2020/12/life-love-lust-loneliness.html

* tweet 5:

#InternationalMEAwarenessDay 2020 - a #pwME’s 100+ symptoms. #SevereME

#MEAwarenessMonth/Week/Day

#MEAwarenessMonth2021/Week2021(11-17th May)/Day2021

#InternationalMEAwarenessMonth/Week

#InternationalMEAwarenessMonth2021/Week2021/Day2021

#MyalgicEncephalomyelitis #ME #MEcfs

#ChronicFatigueSyndrome #CFS #CFSme

https://crippledqueeranglo-europeanranter.blogspot.com/2020/05/international-me-awareness-day-2020.html

* tweet 6:

My #MyalgicEncephalomyelitis - My #ME (2018).

#MEAwarenessMonth/Week/Day

#MEAwarenessMonth2021/Week2021(11-17th May)/Day2021

#InternationalMEAwarenessMonth/Week/Day

#InternationalMEAwarenessMonth2021/Week2021/Day2021

#MyalgicEncephalomyelitis #MEcfs

#ChronicFatigueSyndrome #CFS #CFSme

https://crippledqueeranglo-europeanranter.blogspot.com/2018/12/my-myalgic-encephalomyelitis-my-me.html

* tweet 7:

#ME (2018) - a #poem about a #pwME living with & the heartache of #SevereME

#MEAwarenessMonth/Week/Day

#MEAwarenessMonth2021/Week2021(11-17th May)/Day2021

#InternationalMEAwarenessMonth/Week/Day

#InternationalMEAwarenessMonth2021/Week2021/Day2021

#MyalgicEncephalomyelitis #MEcfs

#ChronicFatigueSyndrome #CFS #CFSme

https://crippledqueeranglo-europeanranter.blogspot.com/2018/08/me.html

* tweet 8:

Possible “Class Action Against #PACE-Triallers?” (2017). #GET #CBT

#MEAwarenessMonth/Week/Day

#MEAwarenessMonth2021/Week2021(11-17th May)/Day2021

#InternationalMEAwarenessMonth/Week/Day

#InternationalMEAwarenessMonth2021/Week2021/Day2021

#MyalgicEncephalomyelitis #ME #MEcfs

#ChronicFatigueSyndrome #CFS #CFSme

https://crippledqueeranglo-europeanranter.blogspot.com/2017/09/class-action-against-pace-triallers.html

* tweet 9:

ATOS & #DWP question whether #disabled can go abroad (2017) - detailing one #pwME’s preparations for & after-effects of travel.

#MEAwarenessMonth/Week/Day

#MEAwarenessMonth2021/Week2021(11-17th May)/Day2021

#InternationalMEAwarenessMonth/Week/Day

#InternationalMEAwarenessMonth2021/Week2021/Day2021

#MyalgicEncephalomyelitis #ME #MEcfs

#ChronicFatigueSyndrome #CFS #CFSme

https://crippledqueeranglo-europeanranter.blogspot.com/2017/05/atos-dwp-question-whether-disabled-can.html

* tweet 10:

#Masturbation & #ME (2017) - #sex a #pwME can engage in.

#MEAwarenessMonth/Week/Day

#MEAwarenessMonth2021/Week2021(11-17th May)/Day2021

#InternationalMEAwarenessMonth/Week/Day

#InternationalMEAwarenessMonth2021/Week2021/Day2021

#MyalgicEncephalomyelitis #MEcfs

#ChronicFatigueSyndrome #CFS #CFSme

https://crippledqueeranglo-europeanranter.blogspot.com/2017/05/masturbation-me.html

* tweet 11:

#DisabilityDiscrimination in #Trafford (2017) - a #pwME’s fight for #SocialCare. #SevereME

#MEAwarenessMonth/Week/Day

#MEAwarenessMonth2021/Week2021(11-17th May)/Day2021

#InternationalMEAwarenessMonth/Week/Day

#InternationalMEAwarenessMonth2021/Week2021/Day2021

#MyalgicEncephalomyelitis #ME #MEcfs

#ChronicFatigueSyndrome #CFS #CFSme

https://crippledqueeranglo-europeanranter.blogspot.com/2017/02/disability-discrimination-in-trafford.html

* tweet 12:

Tumblr & #ME (2016) - some difficulties in using websites for #pwME. #Accessibility

#MEAwarenessMonth/Week/Day

#MEAwarenessMonth2021/Week2021(11-17th May)/Day2021

#InternationalMEAwarenessMonth/Week/Day

#InternationalMEAwarenessMonth2021/Week2021/Day2021

#MyalgicEncephalomyelitis #MEcfs

#ChronicFatigueSyndrome #CFS #CFSme

https://crippledqueeranglo-europeanranter.blogspot.com/2016/12/tumblr-me.html

* tweet 13:

#SevereMEDay 2016. #SevereME

#MEAwarenessMonth/Week/Day

#MEAwarenessMonth2021/Week2021(11-17th May)/Day2021

#InternationalMEAwarenessMonth/Week/Day

#InternationalMEAwarenessMonth2021/Week2021/Day2021

#MyalgicEncephalomyelitis #ME #MEcfs

#ChronicFatigueSyndrome #CFS #CFSme

https://crippledqueeranglo-europeanranter.blogspot.com/2016/08/severe-me-day-2016.html

* tweet 14:

Why I Share Personal Information Publicly (2016) - a #pwME attempts to raise #awareness.

#MEAwarenessMonth/Week/Day

#MEAwarenessMonth2021/Week2021(11-17th May)/Day2021

#InternationalMEAwarenessMonth/Week/Day

#InternationalMEAwarenessMonth2021/Week2021/Day2021

#MyalgicEncephalomyelitis #ME #MEcfs

#ChronicFatigueSyndrome #CFS #CFSme

https://crippledqueeranglo-europeanranter.blogspot.com/2016/07/why-i-share-personal-information.html

* tweet 15:

Quotidian Losses: IMEAD2016 - what one #pwME lost to #ME.

#MEAwarenessMonth/Week/Day

#MEAwarenessMonth2021/Week2021(11-17th May)/Day2021

#InternationalMEAwarenessMonth/Week/Day

#InternationalMEAwarenessMonth2021/Week2021/Day2021

#MyalgicEncephalomyelitis #MEcfs

#ChronicFatigueSyndrome #CFS #CFSme

https://crippledqueeranglo-europeanranter.blogspot.com/2016/05/quotidian-losses-imead2016.html

* tweet 16:

Art for All (2016) - making arts-venues #accessible for #disabled folk, incl. #pwME.

#MEAwarenessMonth/Week/Day

#MEAwarenessMonth2021/Week2021(11-17th May)/Day2021

#InternationalMEAwarenessMonth/Week/Day

#InternationalMEAwarenessMonth2021/Week2021/Day2021

#MyalgicEncephalomyelitis #ME #MEcfs

#ChronicFatigueSyndrome #CFS #CFSme

https://crippledqueeranglo-europeanranter.blogspot.com/2016/05/art-for-all.html

* tweet 17:

And now: the Gallery… (2018) - #artworks that speak to a #pwME. NB artistic nudity!

#MEAwarenessMonth/Week/Day

#MEAwarenessMonth2021/Week2021(11-17th May)/Day2021

#InternationalMEAwarenessMonth/Week/Day

#InternationalMEAwarenessMonth2021/Week2021/Day2021

#MyalgicEncephalomyelitis #ME #MEcfs

#ChronicFatigueSyndrome #CFS #CFSme

https://crippledqueeranglo-europeanranter.blogspot.com/2016/05/and-now-gallery.html

* tweet 18:

My long-lost ability to read… (2016) - a #pwME’s fluctuating ability to read. #Aphasia #Dyslexia

#MEAwarenessMonth/Week/Day

#MEAwarenessMonth2021/Week2021(11-17th May)/Day2021

#InternationalMEAwarenessMonth/Week/Day

#InternationalMEAwarenessMonth2021/Week2021/Day2021

#MyalgicEncephalomyelitis #ME #MEcfs

#ChronicFatigueSyndrome #CFS #CFSme

https://crippledqueeranglo-europeanranter.blogspot.com/2016/04/my-long-lost-ability-to-read.html

* tweet 19:

My #Genealogy #Hobby: Researching My #FamilyTree (2016) - a possible #pastime for #bedbound #pwME.

#MEAwarenessMonth/Week/Day

#MEAwarenessMonth2021/Week2021(11-17th May)/Day2021

#InternationalMEAwarenessMonth/Week/Day

#InternationalMEAwarenessMonth2021/Week2021/Day2021

#MyalgicEncephalomyelitis #ME #MEcfs

#ChronicFatigueSyndrome #CFS #CFSme

https://crippledqueeranglo-europeanranter.blogspot.com/2016/02/my-genealogy-hobby-researching-my.html

* tweet 20:

#FluJabs & #MyalgicEncephalomyelitis (2015) - #FluVaccinations for #pwME.

#MEAwarenessMonth/Week/Day

#MEAwarenessMonth2021/Week2021(11-17th May)/Day2021

#InternationalMEAwarenessMonth/Week/Day

#InternationalMEAwarenessMonth2021/Week2021/Day2021

#MyalgicEncephalomyelitis #ME #MEcfs

#ChronicFatigueSyndrome #CFS #CFSme

https://crippledqueeranglo-europeanranter.blogspot.com/2015/10/flu-jabs-myalgic-encephalomyelitis.html

* tweet 21:

Coitus At Last! / "White" (2015) - working #sex round a #pwME’s #ME.

#MEAwarenessMonth/Week/Day

#MEAwarenessMonth2021/Week2021(11-17th May)/Day2021

#InternationalMEAwarenessMonth/Week/Day

#InternationalMEAwarenessMonth2021/Week2021/Day2021

#MyalgicEncephalomyelitis #ME #MEcfs

#ChronicFatigueSyndrome #CFS #CFSme

https://crippledqueeranglo-europeanranter.blogspot.com/2015/08/coitus-at-last-white.html

* tweet 22:

#SevereMEDay (2015). #SevereME

#MEAwarenessMonth/Week/Day

#MEAwarenessMonth2021/Week2021(11-17th May)/Day2021

#InternationalMEAwarenessMonth/Week/Day

#InternationalMEAwarenessMonth2021/Week2021/Day2021

#MyalgicEncephalomyelitis #ME #MEcfs

#ChronicFatigueSyndrome #CFS #CFSme

https://crippledqueeranglo-europeanranter.blogspot.com/2015/08/severe-me-day.html

* tweet 23:

Global Endemic Plague (2015 - so not Covid!) - #AwarenessRaising of the scale of #ME.

#MEAwarenessMonth/Week/Day

#MEAwarenessMonth2021/Week2021(11-17th May)/Day2021

#InternationalMEAwarenessMonth/Week/Day

#InternationalMEAwarenessMonth2021/Week2021/Day2021

#MyalgicEncephalomyelitis #MEcfs

#ChronicFatigueSyndrome #CFS #CFSme

https://crippledqueeranglo-europeanranter.blogspot.com/2015/05/global-endemic-plague.html

* tweet 24:

We Live - Art for #BADD2015 - #artworks & a #poem on #disabled folk by a #pwME. NB artistic nudity!

#MEAwarenessMonth/Week/Day

#MEAwarenessMonth2021/Week2021(11-17th May)/Day2021

#InternationalMEAwarenessMonth/Week/Day

#InternationalMEAwarenessMonth2021/Week2021/Day2021

#MyalgicEncephalomyelitis #ME #MEcfs

#ChronicFatigueSyndrome #CFS #CFSme

https://crippledqueeranglo-europeanranter.blogspot.com/2015/05/we-live-art-for-badd2015-nb-nsfw.html

* tweet 25:

My MEstory: Life with #MyalgicEncephalomyelitis (2014) - short snippets extracted from almost a month’s SM posts by one #pwME.

#MEAwarenessMonth/Week/Day

#MEAwarenessMonth2021/Week2021(11-17th May)/Day2021

#InternationalMEAwarenessMonth/Week/Day

#InternationalMEAwarenessMonth2021/Week2021/Day2021

#ME #MEcfs

#ChronicFatigueSyndrome #CFS #CFSme

https://crippledqueeranglo-europeanranter.blogspot.com/2014/05/my-mestory-life-with-myalgic.html

* tweet 26:

#Addlement or #BrainFog (2014) - #Dyscognition, one of the main symptoms of #ME.

#MEAwarenessMonth/Week/Day

#MEAwarenessMonth2021/Week2021(11-17th May)/Day2021

#InternationalMEAwarenessMonth/Week/Day

#InternationalMEAwarenessMonth2021/Week2021/Day2021

#MyalgicEncephalomyelitis #MEcfs

#ChronicFatigueSyndrome #CFS #CFSme

https://crippledqueeranglo-europeanranter.blogspot.com/2014/05/addlement-or-brain-fog.html

* tweet 27:

#InternationalMEAwarenessDay … 2014 - 24hrs in the life of a #pwME.

#MEAwarenessMonth/Week/Day

#MEAwarenessMonth2021/Week2021(11-17th May)/Day2021

#InternationalMEAwarenessMonth/Week/Day

#InternationalMEAwarenessMonth2021/Week2021/Day2021

#MyalgicEncephalomyelitis #ME #MEcfs

#ChronicFatigueSyndrome #CFS #CFSme

https://crippledqueeranglo-europeanranter.blogspot.com/2014/05/international-me-awareness-day-12th-may.html

* tweet 28:

"This is the face" of #ME (2014) - a #poem by Sophie Turner.

#MEAwarenessMonth/Week/Day

#MEAwarenessMonth2021/Week2021(11-17th May)/Day2021

#InternationalMEAwarenessMonth/Week/Day

#InternationalMEAwarenessMonth2021/Week2021/Day2021

#MyalgicEncephalomyelitis #MEcfs

#ChronicFatigueSyndrome #CFS #CFSme

https://crippledqueeranglo-europeanranter.blogspot.com/2014/05/this-is-face-of-me.html

* tweet 29:

#BedsideTable (2013) - an art-project of a/cs from various #disabled folk, incl. #pwME.

#MEAwarenessMonth/Week/Day

#MEAwarenessMonth2021/Week2021(11-17th May)/Day2021

#InternationalMEAwarenessMonth/Week/Day

#InternationalMEAwarenessMonth2021/Week2021/Day2021

#MyalgicEncephalomyelitis #ME #MEcfs

#ChronicFatigueSyndrome #CFS #CFSme

https://crippledqueeranglo-europeanranter.blogspot.com/2013/08/bedside-table.html

* tweet 30:

all back (2013) - a #poem lamenting the loss of one #pwME’s pre-#ME life.

#MEAwarenessMonth/Week/Day

#MEAwarenessMonth2021/Week2021(11-17th May)/Day2021

#InternationalMEAwarenessMonth/Week/Day

#InternationalMEAwarenessMonth2021/Week2021/Day2021

#MyalgicEncephalomyelitis #MEcfs

#ChronicFatigueSyndrome #CFS #CFSme

https://crippledqueeranglo-europeanranter.blogspot.com/2013/05/all-back.html

* tweet 31:

No Sex Please, We're... #Disabled! * (2013) - a look at the #inaccessibility of #sex for folk, incl. #pwME.

#MEAwarenessMonth/Week/Day

#MEAwarenessMonth2021/Week2021(11-17th May)/Day2021

#InternationalMEAwarenessMonth/Week/Day

#InternationalMEAwarenessMonth2021/Week2021/Day2021

#MyalgicEncephalomyelitis #ME #MEcfs

#ChronicFatigueSyndrome #CFS #CFSme

https://crippledqueeranglo-europeanranter.blogspot.com/2013/04/no-sex-please-were-disabled.html

* tweet 32:

Battlers in the #MECFS Wars! (2012) - one view of the internecine squabbling btw. different factions of #pwME.

#MEAwarenessMonth/Week/Day

#MEAwarenessMonth2021/Week2021(11-17th May)/Day2021

#InternationalMEAwarenessMonth/Week/Day

#InternationalMEAwarenessMonth2021/Week2021/Day2021

#MyalgicEncephalomyelitis #ME

#ChronicFatigueSyndrome #CFS #CFSme

https://crippledqueeranglo-europeanranter.blogspot.com/2012/12/battlers-in-mecfs-wars.html

* tweet 33:

Judgmentalism of Invalids (2012) - 1st half describes #onset of a #pwME’s #ME.

#MEAwarenessMonth/Week/Day

#MEAwarenessMonth2021/Week2021(11-17th May)/Day2021

#InternationalMEAwarenessMonth/Week/Day

#InternationalMEAwarenessMonth2021/Week2021/Day2021

#MyalgicEncephalomyelitis #MEcfs

#ChronicFatigueSyndrome #CFS #CFSme

https://crippledqueeranglo-europeanranter.blogspot.com/2012/07/judgmentalism-of-invalids.html

* tweet 34:

#Diarrhœa (2012) - a #poem on a common issue for many #pwME. #Diarrhoea #Diarrhea

#MEAwarenessMonth/Week/Day

#MEAwarenessMonth2021/Week2021(11-17th May)/Day2021

#InternationalMEAwarenessMonth/Week/Day

#InternationalMEAwarenessMonth2021/Week2021/Day2021

#MyalgicEncephalomyelitis #ME #MEcfs

#ChronicFatigueSyndrome #CFS #CFSme

https://crippledqueeranglo-europeanranter.blogspot.com/2012/06/diarrha.html

* tweet 35:

#Pain: a #Taxonomy (2012) - one #pwME’s pain-classification.

#MEAwarenessMonth/Week/Day

#MEAwarenessMonth2021/Week2021(11-17th May)/Day2021

#InternationalMEAwarenessMonth/Week/Day

#InternationalMEAwarenessMonth2021/Week2021/Day2021

#MyalgicEncephalomyelitis #ME #MEcfs

#ChronicFatigueSyndrome #CFS #CFSme

https://crippledqueeranglo-europeanranter.blogspot.com/2012/05/pain-taxonomy.html

The hashtags:

* hashtags 1

#MEAwarenessMonth/Week/Day

#MEAwarenessMonth2021/Week2021(10-16th May)/Day2021

#InternationalMEAwarenessMonth/Week/Day

#InternationalMEAwarenessMonth2021/Week2021/Day2021

* hashtags 2

#MyalgicEncephalomyelitis #ME #MEcfs

#ChronicFatigueSyndrome #CFS #CFSme

#SEID

#G93point3 #G93

___________________________________________________________