Discover and read the best of Twitter Threads about #CFS

Most recents (14)


“The ME/CFS community with its knowledgebase, its research findings, its doctors, advocates and the patients who have been through it all, has much to contribute to the long haulers.”

#LongCovid #COVIDー19 #longneglected #LonghaulersUnite #MyalgicEncephalomyelitis

“You should know – and may already very well know – that many doctors have reacted to this kind of illness by denying it, by downplaying it, or by calling it psychological.”

#longhaulers #LongCovid #COVIDー19 #COVID19 #COVID #MEcfs #CFS #MyalgicE #ChronicFatigueSyndrome
Read 13 tweets
Our new meta analysis led by @SylvieAucoin now out in @_Anesthesiology. Seems like a good time for a thread on choosing a frailty instrument for #periop care 1/
2/ There are dozens of frailty instruments (big problem) but in reality 4 are commonly used: Frailty Index, Frailty Phenotype, Clinical Frailty Scale, Edmonton Frail Scale
3/ All 4 Frailty instruments predict/are associated with bad outcomes. Effective sizes vary but are not substantively different. Discrimination generally moderate, calibration WAY under-reported
Read 9 tweets
(1/X) (TW: Hypersomnie, Depression)

Hach ja. U nun kickt die #IdiopathischeHypersomnie direkt wieder (bzw frage mich aktuell, ob's nicht einfach #CFS ist. Würde es gerne mal abklären lassen, aber es gibt keine Klinik in der Nähe, hab 0 Power dafür u ist ebenso wenig behandelbar.
(2/x) Also bis auf die Bezeichnung kein Unterschied in meinem Leben).

Gestern ganze Nacht geschlafen. Morgens kurz zum Doc. Danach direkt wieder hinzulegen müssen. Gerade eben erst aufgequält. Wg Schreck Angststörung getriggert u dadurch indirekt immer auch gleich die Müdigkeit
(3/x) (wobei es nach aktuellen Zustand auch so in spätestens 1-2h genau so gewesen wäre). Dachte schreiben hilft bei 1, tut's manchmal. Dabei verweigerte Körper schon den Dienst u musste mich hinlegen. Da schreiben anstrengend, triggert's meine chron. Migräne/Fibro u dAugenprobs.
Read 29 tweets
Chronic fatigue, bone pain, gastrointestinal symptoms, and ongoing cardiac, respiratory, and neurological symptoms are being experienced by COVID19 survivors after “recovery.”…
COVID19 has been reminding me a lot of MCAS (mast cell activation syndrome) and these descriptions are very reminiscent of what those of us living with MCAS experience.

For many of us, the signs and symptoms never go away.

I hope that is not the case with COVID19 survivors.
In addition to something like #MCAS, there are chronic illnesses linked specifically to viral exposure.

Myalgic encephalomyelitis chronic fatigue syndrome features many of the signs and symptoms reported by COVID19 survivors:

Read 4 tweets
We had the space to do the research on viral infection transitioning to chronic, neurological disease before #COVID19. When we've cleared the acute outbreaks, there will be millions still sick, left without treatment or care. (1/13) #pwME
"How could we have anticipated this?"
The neuro disease #MEcfs has always been a time bomb. Up to 80% of cases are post-infectious. To see this coming, you would only need to know that someday soon, there would be a viral outbreak of some kind. (2/13)
Here's the math. COVID may have already infected half of the population of the UK, and previous projections estimated that half of the world's population would get COVID. Let's say that's so, for the purposes of argument. That's 3.9 billion humans. (3/13)
Read 13 tweets
School's closed? Work cancelled or working from home? Quarantined or in isolation b/c of #coronavirus? Don't know what to do w/all the extra time?

#Spoonies & #unchangeables got you covered. We're experts on how to handle boredom & isolation.

A thread.
Fellow Spoonies, Unchangeables, #chronically ill peeps, feel free to chime in.

What to do with all this time?

Catch up on your fave shows on Netflix or start a new one.

No Netflix or Hulu? The following have free movies: Vudu, Crackle, Tubi, & Roku. Chime in if I missed some.
Books! If you like reading, download the Kindle app if you don't have a tablet. Amazon has Kindle Unlimited, a book subscription for $9.99/mo.

If you can't afford this, they always have free books. Or you can join an advance reader club on Facebook. Free books for reviews.
Read 24 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

There seems to be a GLOBAL EPIDEMIC of #ChronicIgnoranceSyndrome that is effecting the medical establishment & resulting in constant misinformation & treatments for #ChronicPain #CFS #pwME #Fibromyalgia #hEDS #EDS #Lyme #FND, the list is...1/2
shocking & endless. So during #InvisibleDisabilitiesWeek we ALL have an opportunity to highlight this spread of #ChronicIgnoranceSyndrome, the effect this has had on our #MentalHealth & what we are collectively doing daily to fight this medical ignorance & abuse! 🦓✊ #MAIMES
Read 3 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
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

The 10 publications below provide scientific evidence that patients with #MECFS have #brain abnormalities in #neuroinflammation, #metabolism, #neurological connections and blood perfusion

#pwME suffer from #chronicillness

#pwME are #SickNotWeak
1. These studies “provide evidence of #neuroinflammation in #MECFS.. as well as evidence of the possible contribution of neuroinflammation to the pathophysiology of #MECFS

2. This Australian study found abnormalities in the #brain MRIs and peripheral Blood Pressure and Heart Rate in #MECFS patients including the Vasomotor centre, midbrain and hypothalamus

Read 14 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
Updating Twitter disability hashtag thread.

@AllisonR has educated me that I should use Sentence Case for #Accessibility. Graphic reads: # symbol followed by the word Hashtag in white lettering on a blue background.
I have #brainfog so I know I missed someone. Please add your favorite resources as a reply.
Do you want to share your disability experience with others? Try these hashtags.

Amplifying stories

Read 16 tweets

Related hashtags

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