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.
 
#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.



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