Discover and read the best of Twitter Threads about #myalgice

Most recents (12)

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.

#InvisibleIllness
#MySpoons
#MyPainDay
#ShareOurPain
#ShareOurStories
#SpoonieStories
Read 58 tweets
Hey @guardian @guardianscience This would be a really interesting dialogue to continue if you opened it up to the majority of researchers who don’t support the PACE trial and have good relationships with patients, instead of just giving Sharpe a platform. theguardian.com/science/audio/…
There are so many flaws in Sharpe’s argument that I won’t be able to cover them all myself (due to ME), but for one, his attempt to differentiate between ME and CFS to justify their work when he knows full well that in practice it is all considered the same. @guardianscience
This means that if you are anywhere on the spectrum including #SevereME (see #SevereMEday yesterday) with extreme exercise intolerance, then you can be put forward for CBT/GET, and actually many Severe patients were formerly moderate before these “treatments” @guardianscience
Read 10 tweets
#MECFS citizen science: What are the answers to these 6 important questions on Myalgic Encephalomyelitis???

The insightful questions below come from this nice @diagnostic_mdpi review

#mdpidiagnostics #pwME #chronicillness #SickNotWeak #MyalgicE
mdpi.com/2075-4418/9/3/…
1. Is there a genetic susceptibility which leaves some individuals vulnerable to #MECFS after exposure to a virus, bacteria or toxic chemical?

#pwME #chronicillness #SickNotWeak #MyalgicE @diagnostic_mdpi #medtwitter #genetic
2. What is the key initial physiological trigger causing the dramatic downward spiral in health leading to #MECFS?

#pwME #chronicillness #SickNotWeak #MyalgicE @diagnostic_mdpi #medtwitter #immunity
Read 8 tweets
The NIH call right now: a THREAD (1/LOTS) #mecfsatnih19 (Because a lot of it is about the conference!) #pwME #MillionsMissing
Avi Nath: updating on intramural program. Nath had a family emergency, which was why Wallitt stood on at the conference. "We've made tremendous progress, we are now at the midpoint of recruitment" and it's time for interim analysis. (2) #mecfsatnih19 #pwME
Did "exhaustive" testing so time to assess & judge if it's time to "retool". A lot of pts have the dx of #MyalgicE but they discovered other dx. Maybe #MEcfs could be a "compendium" of multiple diseases. (Keeping in mind that #pwME in this study met CC, Fukuda.) (3) #mecfsatnih19
Read 21 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.

Link: ko-fi.com/TinuWrites
HASHTAGS FOR PERSONAL NARRATIVES

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

#InvisibleIllness
#MySpoons
#MyPainDay
#ShareOurPain
#ShareOurStories
#SpoonieStories
Read 45 tweets
18 myths & misconceptions of Post-Exertional Malaise #PEM in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome #MECFS

#PEM (aka PENE, "flare" or “crash”) is seriously debilitating symptom caused by exercise

#SickNotWeak #SickNotTired #pwME #chronicillness #medtwitter #MedEd
1. #PEM is just tiredness

No

#pwME experience <pathological> fatigue after #exercise which can be long-lasting and includes debilitating fatigue, flu-like symptoms, cognitive impairment, #sleep disturbance

@PNASNews #MECFS #MyalgicE #MedEd #medtwitter
pnas.org/content/114/6/…
2. #PEM is not a real

No

“there exists no medical condition.. where exertion.. causes #immune/ inflammatory-related symptoms like sore throat, tender lymph nodes, or flu-like feelings, yet 60%.. of.. [#pwME].. reported these symptoms”

@PLOSONE #MECFS
dx.plos.org/10.1371/journa…
Read 20 tweets
Thread:

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

#pwME

jnm.snmjournals.org/content/55/6/9…
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

#pwME

sciencedirect.com/science/articl…
Read 14 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
Some of the daft & unsolicited advice I’ve received over the years, from people who know significantly less about my illness & how it affects me than I do, but still, they have the answers!

#MyalgicEncephalomyelitis #MyalgicE #PwME #UnsolicitedAdvice #ChronicIllness #Disability
I should move out of (damp and mouldy) Scotland to a drier country - I’d lose my entire support network. I would no longer be eligible for UK disability benefits, and I won’t be eligible for social security in whichever country I move to. What will I do for money and support?
Take up meditation - I’ve tried, it makes me anxious. I have other methods of relaxation.
Read 25 tweets
👋🏼 just wanted to share with you a new diagnosis. As suspected, I have craniocervical instability. My skull is compressing my brainstem causing my breathing + other problems. I’m having surgery later this month to stabilize my skull + neck. Learn more: medium.com/@jenbrea/a-new…
Craniocervical instability and atlantoaxial instability are a common complication of Ehlers-Danlos Syndrome, especially #hEDS. I don’t meet the criteria but it’s clear hypermobility is an important part of my clinical picture. #Nightingales
A handful of other #pwme have also been diagnosed with CCI/AAI in the past year including @jeff_says_that who, at one year post-surgery, considers himself in remission from both #POTS and PEM: mechanicalbasis.org
Read 11 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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