Severe M.E. Day 2024: FUNCAP55

 

Today, 8th August, is Severe M.E. Day. I have previously blogged on this date.

In 2022 about my social-care needs. Link.

In 2021 about my poëm “Missing” having been published. Link.

In 2018 I could not write much due to my condition, so posted a relaxing tune and accompanying video. Link.

In 2016 about Severe M.E. Day. Link.

In 2015 about why I could not post on actual date, but rather late. Link.

When I have not blogged it is due to being too ill to do so.

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In January this year I took the FUNCAP55 functionality-test. As I understand it is a project instigated by the Norwegian M.E. Association & Prof. K. Sommerfelt in 2022. He presented the details at the 15th Invest in M.E. Research [IIMER] International M.E. Conference 2023. This link takes one to YouTube to a twenty-two minute video.

A pre-print paper was published in September 2023. This link takes one to preprints.org.

In late 2023 or very early 2024, Raff Benato turned the questionnaire into an easy-to-use mobile app. This is the link for the app.

In June 2024 the paper was published in “Journal of Clinical Medicine”. This link takes one to the US National Library of Medicine, where one may read the full paper.

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The results of my first attempt can be seen in the image above. Over all, I came out as mostly “severe” with some “very severe” areas.

A few days ago I took the test a second time (image above), that is approximately six months after the first. I was not anticipating much change - how wrong could I have been! Remember, this is based on typical not best/worst days. I had not reälised I had deteriorated so much. The vast majority of my results now place me in the “very severe” category on the majority of my days. Heigh-ho! I suppose I ought to have expected same, as the past three months I have been almost totally bedridden and unable to do much more than eat, drink and use the w.c. Whilst most days I can spend some time on-line, I have to limit what I do to prevent migraines. Much of the time I lie abed, blind-folded (to avoid photophobia) and with noise-reducing headphones (to avoid hyperacusis). It is not much of a life, but there are people with M.E. (PwME) who are fed & watered intravenously, who cannot even use a urine-bottle without assistance.

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Severe M.E. is a hellish life……

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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.

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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

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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

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International M.E. Awareness Day 2021

Today, 12th May (US May 12th) is International M.E. Awareness Day. In some countries Myalgic Encephalomyelitis (M.E.) is misnamed Chronic Fatigue Syndrome (C.F.S.).

There are three categories of suffering per N.I.C.E.: mild - a loss of 50% of function (what other condition is described as “mild” with a loss of half one’s previous abilities!), but many can still work (G-d knows how!); moderate - mostly house-bound and unable to work; severe - mostly bed-bound. However, the M.E. community is well aware of a fourth category, “very severe”, in which sufferers are mostly blindfolded, earplugged & drip-fed, unable to do anything, not even move (often paralysed), but exist and suffer. Individuals quite literally die from M.E. [The image below is an M.E. taxonomy based on several international criteria - apologies to the sight-impaired, there is far too much text for me to type up.]

I was diagnosed with M.E in 1998. Prior to that I had been diagnosed as having Post-Viral Fatigue Syndrome. Both conditions are classified by the W.H.O. in ICD-10 at G93.3, as neurological conditions (and have been since 1969). Even so, in the U.K., Denmark & the Netherlands especially, where a psychiatric cabal control much of the medical establishment, and in the U.S. until relatively recently, the disease has been treated as a mental-health condition, in contradiction to all the scientific evidence which demonstrates inter alia differences in sufferers’ brains, spinal-columns, hearts, blood-flow, blood-work, biomes, etc.

Recently I have begun to suspect my condition probably commenced at puberty, if not beforehand. Under the current N.I.C.E. guidelines (which are about to be updated) I have been and am classified by my G.P. (family-doctor) and by my N.H.S. hospital-consultant as suffering the severe form. Mostly I am bed-bound, nigh on all the time house-bound. However, with one or two assistants, I am able to travel with lots of planning. This would put me in the moderate grouping. Similarly, there are times when I suffer temporary paralysis, which places me within the very severe grouping. M.E. Is an unpredictable disease that constantly fluctuates. Prior to Severe M.E. Day in August I hope to have conducted some research into my medical history, to attempt to determine the approximate start of my condition, assuming it is not congenital. As long as all goes well, I hope to publish a blog-post on 8th August (August 8th).

[Image Description: the writer in sunglasses and wheelchair enjoying a day out.]

However, for the purposes of my argument today, I am looking at the time-frame 1998-2021. Whilst the numbers of suffers of M.E. is in the tens of millions worldwide, and currently estimated - excluding the new-comers via Covid-19 so-called Long-Covid - to be circa 250,000 - 500,000 in the U.K. That is roughly 1:200 folk having some form of the disease. Every G.P.’s list is estimated to have around forty sufferers. And yet the vast majority of family-doctors know little or nothing about the disease apart from the myths and prejudices, which they (mostly) also perpetuate.

There is NO TREATMENT for M.E.  More than half-a-century has passed since the W.H.O. classified this disease. Until the 21st century very little medical-research was carried out. Even now, most research is funded by sufferers as governments have all but turned a blind-eye to both the disease and especially those who suffer from it. The Pharmaceutical industries have also done very little research (as far as is known), reluctant to invest monies when so little is known about the disease. However, in the past few years the Norwegian Prime Minister apologised to her citizens for their mistreatment by Norway’s health-services. Researchers, especially in the U.S., Australia, the Scandic countries and even the U.K. have been gradually uncovering the secrets of the illness and finding or developing treatments that may help sufferers. Whilst these are still the early-days for same, there is at least some hope.

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If the reader knows a person with M.E. (PwME) within their family, friend-group, or community, please do consider volunteering some of your time &/or money to an M.E. Charity.

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Apologies for the changes in text-size and alignment - this is not down to me, the writer, but due to issues with Blogger.

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

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