Discover and read the best of Twitter Threads about #myalgice

Most recents (7)

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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