Discover and read the best of Twitter Threads about #pwme

Most recents (10)

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

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Replying to @follo_India. I'm not a dr and this is not med advice. Just things I've found work for me, personally, which may or may not work for you. Always be really careful starting something new b/c many #pwme are often medication sensitive. Start low & go slow! THREAD! (1/11)
Recently I found that selenium taken when I want to awaken is really helpful. Selenium has an effect on clock genes. At least in my case, this translates to: whenever I take it, that's when my body thinks it's time to wake up. Next morning, too! (2/11) ncbi.nlm.nih.gov/pmc/articles/P…
I take a large dose of Coenzyme Q10. Tried a loading dose of CoQ10 & it stopped a crash in its tracks! Many take tiny 'heart health' doses or use poor-quality supplements that do zip. Looked up how much to take in MS and worked up to that dose. (3/11) ncbi.nlm.nih.gov/pubmed/25603363
Read 13 tweets
Oooh: this is your brain on #MECFS : up to four times the standard amnt of lactate. Remember that Nakatomi study and those lactate me vs fibro vs major depressive disorder vs... confirmation! Awesome, Younger. (1/4) #pwme @MEActNet #MECFS18
SO GLAD he included this too! Brain on fire: #pwme brains run hot. Usually about 1F diff— but sometimes as high as 103F! “This will make a person feel very sick,” he says... (2/4) #pwme @MEActNet #MECFS18
Positron electron tomography (PET) scan replicates older research to show same areas overactive. New, more effective markers mean better, more trustworthy results. (3/4) #pwme @MEActNet #MECFS18
Read 4 tweets
Jarred Younger up now. Neuroinflammation in #mecfs. We’ve all gotten inflammation diagnoses in the body (arthritis, e.g.) but never brain inflammation. Hard to diagnose! So how can we make that dx easier? (1/5) #pwme @MEActNet #MECFS18
Hard to measure inflammation in a living person? Must be non-invasive, must be through and examine the whole brain. (2/5) #pwme @MEActNet #MECFS18
Microglia — bottom right is in an inflammatory state. Releases cytokines that cause ‘sickness behavior’. It makes you feel awful: that’s its job! Slow down to recover. (3/5) #pwme @MEActNet #MECFS18
Read 6 tweets
I’m starting a new hashtag, #Nightingales, specifically to connect people with #EDS #hEDS #MECFS #POTS #MCAS #FIBRO. However, all are welcome!
Why these diagnoses? The thesis is that they share either an underlying biological relationship (genetic, environmental, pathophysiological or otherwise) OR a nosological one: they are actually different but often confused for each other. #Nightingales
It’s my hope that by communicating across community, we can all become better informed advocates and allies; help each other find more accurate diagnosis and effective treatment; and discuss science + clinical approaches from an interdisciplinary perspective. #Nightingales
Read 12 tweets
I've had remarkable control or at least perspective on every single emotion I've experienced these last six years. I realize now it wasn't courage or astonishing emotional maturity. It was self-protecting resignation. It felt necessary in the face of neglect, disbelief, abuse.
It’s helped me achieve more than I ever imagined under some extraordinarily difficult circumstances. But survival strategies developed under duress usually, eventually outlive their usefulness.
I've started to experience what medicine can look like at its best. I’ve met doctors who think like scientists, but operate like detectives; who are that rare mix of creative, curious, skeptical, rigorous. It's allowed me to open myself up to hope and but with it, utter terror.
Read 17 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
.@_NathalieWright's withering @Independent piece lays bear the gaps in how #mecfs is viewed on either side of the pond and the vested interests that have contributed to the disability and death of millions.

independent.co.uk/news/long_read…
It is one of if not the first high-profile pieces to tackle the institutional incentives and various forms of motivated reasoning underlying the "biopsychosocial" model.
#mecfs is an extremely debilitating condition as well as an incredibly common one. It is also usually lifelong (hitting early, but rarely lethal), leaving many unable to work for decades. Acknowledging our existence would be unbelievably expensive.
Read 20 tweets

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