Discover and read the best of Twitter Threads about #millionsmissing

Most recents (12)

Wenn ich einen Twitterthread schreibe, muss es wirklich wichtig sein, also bitte lesen:

Mehr durch Zufall bin ich auf das oft unvorstellbare Leiden von Menschen aufmerksam geworden, die an Myalgischer Enzephalitis (ME) leiden, landläufig unter der verharmlosenden Bezeichnung
"Chronisches Erschöpfungssyndrom" (CFS) bekannt. Menschen mit #MECFS leiden in erster Linie an permanenter, schwerster, bleierner Erschöpfung selbst im Ruhezustand, die die Erschöpfung ("Fatigue) von Krebspatienten unter radikaler Chemotherapie oft noch übertrifft. Sie
können oft nicht mehr ihr Haus oder sogar ihr Bett verlassen, können nicht arbeiten und so gut wie kein Sozialleben führen. Einfachste Tätigkeiten wie Zähne putzen oder sich im Bett umdrehen können die Energiereserven von Tagen verbrauchen, ein Gespräch mit einem Angehörigen
Read 22 tweets
Without wishing to subtweet anyone, I am seeing much discussion of #LongCovid & similarities (or not) with #MECFS. I can only speak of my lived experience with the latter & the misconceptions I have seen about symptoms & diagnosis, so here is a thread about those things...
Firstly, my diagnosis of #MECFS was simply based on ruling out more obvious causes through the use of tests (I had a good number of those, but probably far fewer than many people). To me, this means that #MECFS could be many different things for everyone with the same diagnosis.
Secondly, my symptoms began not in response to a virus but to vaccinations. There was no live virus attacking my organs, no illness that I was suffering, no post-viral fatigue. Nonetheless, I experienced many of the symptoms reported by #MECFS & #LongCovid sufferers.
Read 11 tweets

As a growing number of experts warn of a rise in ME following the #COVID19 pandemic, the need for treatments that help, not harm, is ever stronger.

We are the #MillionsMissing & we need change now. A thread. #pwme
Thank you to Professor Chris Ponting @CGATist and Dr Nina Muirhead for their expert testimony, and to the many people with ME who submitted videos to be part of this.
#pwme #COVID19 #MyalgicE

Watch the full version here, and share it far and wide.
After the #COVID19 pandemic, the number of people living with ME and other chronic illnesses will grow.
Debilitating symptoms won’t resolve, and physical isolation won’t end.

We are the #MillionsMissing, and we call for an urgent response to mitigate this coming crisis. #pwme
Read 6 tweets
Here's my latest* update to my vetted collection of Twitter Disability and Chronic Illness hashtags. Please share it!

Thank you :-) Graffiti background. Foreground in black letters on a  white background to the left reads “Twitter Disability and Chronic Illness Hashtags”<br />
This collection is current as of 01.30.20, previous Twitter update 09.11.19.

There's a PDF version coming up this weekend, to be posted to my Kofi profile. I'll add the link toward the end when it goes up, after the questions, where you can also sign up for email updates.
This version has added

- community suggestions,
- mental health hashtags,
- Medical crowdfunding hashtags,
- and a section for cancer-related hashtags.
Read 84 tweets
Here’s my latest update to the list of Twitter #Disability & #ChronicIllness Hashtags.

- previous update 02.24.19 -

Please share it! Thank you. :-)

@ImageAltText Graffiti background. Foreground in white letters on a  red background to the left reads “Twitter Disability and Chronic Illness Hashtags”
There will be a PDF version up for download on my Ko-fi, likely tomorrow morning. The link is at the end.
Hashtags For Personal Narratives.

These hashtags are for sharing your stories & experiences. Also good for crowdsourcing solutions.

Read 58 tweets
This thread 👇 there have been some valid criticisms of the #MillionsMissing campaign & it’s visuals that need to be thought carefully about, but the idea that the word ‘missing’ is somehow inappropriate or hyperbolic is just a huge slap in the face to patients
I have multiple overlapping disabilities, but the ‘missing’ thing for ME doesn’t just refer to the fact that a lack of energy on a cellular level can leave you absent from your own thoughts, your own *consciousness* even, for days/weeks/months at a time, as well as from society,
It refers to the fact that politically speaking, we are missing from all conversations. people get angry if we compare ME to MS because they think we’re playing suffering Olympics, but they don’t listen beyond that knee-jerk: it’s the *politics* we’re comparing
Read 22 tweets
Virtual Camino - Day 271

Made it to Santiago de Compostela!
Not in glorious trip to Southwark Cathedral or to see Angela Hewitt in concert.

But here, at home somewhere in the triangle between bed, sofa & kitchen.

Apt! It feels like an anticlimax: but arriving isn’t the thing.
Thank you to all who have been companions along the way.

Especially ppl who have walked the Camino & sent pics 👏👏👏 @Miriamaok

It’s been a great journey, if a little unusual ‘way’ to travel.

Nevertheless, pilgrim blessings!

Would be lovely if @deansouthwark ...
could whisper the prayer that is by the Shrine of Lancelot Andrewes:

for me and
for many #MillionsMissing like me who would love to tread the pilgrim way, but cannot manage more than a few steps, or kilometres, along the way each day.

Read 9 tweets
Here's my latest update to my collection of active Twitter #Disability & #ChronicIllness Hashtags - previous update 12.13.18.

Please share it. Thank you! :-) Light blue sand background has the # drawn in the sand to the right. The left side is blank. <br />
<br />
At the bottom of the picture, text reads
Portable PDF version will appear on my Kofi in the next day or so.


These hashtags are for sharing your stories & experiences. Also helpful for crowdsourcing solutions.

Read 45 tweets
Here's my lastest update Twitter #Disability & #ChronicIllness Hashtags - previous update 10.17.18

Please share it.
I'll have a PDF version of this for download on my Ko-fi by this time tomorrow. Link at the end.

These hashtags are for sharing your stories & experiences. Also good for crowdsourcing solutions.

Read 29 tweets
The International Consensus Criteria for ME states: “Misperceptions have arisen because the name ‘CFS’ and its hybrids #MECFS, #CFSME and CFS/CF have been used for widely diverse conditions”. #pwME #MyalgicEncephalomyelitis
@EmergeAus “Our panel strongly recommends that only the name ‘myalgic encephalomyelitis’ be used to identify patients meeting the ICC because a distinctive disease entity should have one name.”
@EmergeAus “Patients diagnosed using broader or other criteria for CFS or its hybrids (Oxford, Reeves, London, Fukuda, CCC, etc.) should be reassessed with the ICC. Those who fulfill the criteria have ME; those who do not would remain in the more encompassing CFS classification.”
Read 19 tweets
This video has had nearly 30K views 👍🏻
In it @JessicaOOTC describes her experience of being locked in a psych ward after being diagnosed with #MyalgicE by the Bristol centre

@MEActNetUK #MEAwarenessMonth #pwme #PACETrial #stopGET #MillionsMissing
Despite(/because) her ME diagnosis they interpreted her low weight as anorexia. The gut/digestive issues as a result of ME go ignored. She isn’t the only #pwme to have experienced this. It is particularly tricky as an advocacy issue if people are sectioned for ‘anorexia’ not ME
It is a high priority for Dr education and I wonder if for new #NICEguidelines we need gut issues included as core to ME, rather than the current wording of IBS as a comorbidity issue?
Locking people in psych wards for this has to stop!
@exceedhergrasp1 @jenbrea @keithgeraghty
Read 7 tweets
Today is the 10th anniversary of the day that I became housebound with severe #ME. To mark the occasion here’s a thread:

10 years ago I came home from work unbelievably overwhelmingly exhausted. #mecfs #MillionsMissing #MyalgicE #meawarenesshour
2/ I thought 2 weeks off would fix it. It didn’t. After 6 weeks I was desperate to go back to work.
I held a fellowship in bio-nano-technology at a Scottish University. I tried a phased return starting with 1 hour per day. Twice. Each time I crashed and became more unwell.
3/ Since then I have been 95% housebound- it is rare for me to leave the house for more than 1 hour per week, and common not to leave the house at all for 3-4 weeks.
Still, I’m lucky – I’m not bed bound, like so many.
Read 12 tweets

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