Severe ME day: August 8 2019

I saw this on FB and having so many problems with sharing it . copying/paste etc
so I have written it out .

This was written by Marion Michell

Imagine the most hushed .unrushed procession possible
flocks of people with severe ME filling the streets.
on berths, bunks, beds, futons, beanbags, sofas , wheelchairs -
crash pads all running on dreams and discipline

Tens, hundreds, thousands and those who cannot leave
the rooms they lie in ,there with their walls around them
curtains drawn. housebound , occasionally out
bathed , unwashed, half dressed , PJs , or sunday best
some with bedpans or commodes , some with feeding tubes;

speaking , humming , silent , eyes closed , eyes wide - all of us.

No drums beaten , no banners waved
instead see our bidding magnified
on bedclothes ,headboards , eiderdowns and ,
if the sun is out scrawled all over the big blue :
urging serious commitment to medical research
increased support and being heard
We're too tired for a riot
only up to rallying sighs.
but a simmering rage is in the air

No More Waiting

 

Guest blog at ME Association: Severe ME Day: Life in a Nursing Homse, Light Sensitivity and Very Severe M.E. by Eira Stuart (pseudonym)

I was diagnosed with Chronic Fatigue Syndrome and then the phrases “functional disorder” and “medically unexplained symptoms” were thrown about, which made me feel like my symptoms were not being taken seriously.

Eventually, I found a private biomedical specialist who confirmed my M.E. diagnosis. My life became focused around carers as I was bedridden, living in a dark room and sensitive to light and noise.

 

MEAction: Today, we honor and remember those with severe M.E.

To honor people with severe ME today, we asked the community to submit their stories of what it is like to live with severe ME. Forty-five people sent in their stories. Below are some excerpts that broke our hearts, and have galvanized us in our fight to educate the world about the etiology of ME.

 

Short 2 minute but frank video by Miranda Brewster effectively conveys very severe ME, struggling to survive, struggling with everything, not wanting to be here but carrying on because there’s a chance you might get better, waiting...

waiting, watching, waning whilst we are told to just lay patiently

https://www.youtube.com/watch?feature=share&v=jybBW7jNFrY

 

#MillionsMissing Germany published a new video today in honor of Severe ME Day. It features (among others) a severe pwME, Dr Bupesh Prusty from Würzburg university and the #MillionsMissing protest in Munich.

It only has German subtitles so far, but you could use the automatically generated English subtitles.

https://www.youtube.com/watch?v=qM-BTK80lk8

More info on the video can be found on the website: https://www.millionsmissing.de/2019/08/08/neuer-film-eine-krankheit-im-verborgenen/

 

Don't let 'them' forget

Severe ME day is an initiative of the 25% ME group for the severely affected.


It is held annually on 8th August to commemorate Sophia Mirza’s birthday and it’s purpose is to remember and raise awareness of those deceased and severely affected by ME. Sophia Mirza (1973 – 2005) died in distressing circumstances in November 2005.

 

A message from Whitney on Severe ME Day

https://www.omf.ngo/2019/08/08/a-message-from-whitney-on-severe-me-day/

In recognition of #SevereMEDay, we would like to share this touching message of hope from Whitney (Ron Davis and Janet Dafoe’s son), which he conveyed to his mother with great effort. Whitney offers a reminder to each member of the patient community that they are not alone in this fight:

“Last night, when Whitney was on Ativan, I told him that August 8th is Severe ME Day and asked if he would like to send a message out to the patients around the world. He wanted to know if it would go out to patients all over the world and how it would be sent. I told him that OMF would send it out and that lots of people would retweet it and repost it and that his message would go really far…

 

A letter to the editor from an ME patient in a Norwegian local newspaper. It criticises the National Competence service for CFS/ME and their psychosocial approach to ME as well as the general lack of care for ME patients.

Tønsbergs Blad: Kjære Høie, jeg vet det ikke en en menneskerett å være frisk
google translation: Dear Minister of Health, I know being healthy isn't a human right

 

https://twitter.com/user/status/1159561349195870216

 

Hi Kalliope,

You wrote, "Additionally, the hallmark symptom of post-exertional malaise means that the activities at the assessment could trigger a worsening of symptoms that is not seen until days later."

Do you (or does anyone) know when the word "malaise" was first incorporated into the case definition of ME or ME/CFS or CFS? My understanding is that some case definitions have used the word "malaise," and others have not.

 

I do not know about definitions but when I was diagnosed about 1984 they spoke about one of the symptoms being malaise in its specific sense of flu like, or what we would now call immune activation.

 

I'm guessing the word "malaise" covers the fact that the after effects vary a great deal from person to person, yet the common denominator is that people always feel downright bl**dy ill.

 

Hi @Octogenarian That was a quote from MEA's press release. I don't know further details unfortunately, but I'm sure other forum members will

 

Just saw that this hasn't been posted yet:
https://twitter.com/user/status/1159400895102291973


"On #severeME day here is a song about my struggle with ME: https://youtu.be/ckBYXPwNaR0 "

'Holding on' by Robert Saunders

A beautiful song, ME-friendly audio & video (just displaying the lyrics, white on black)

Code:

https://twitter.com/RobertHMcMullen/status/1159400895102291973

(This post had been sleeping in my drafts folder.)