Discover and read the best of Twitter Threads about #myalgicencephalomyelitis

Most recents (5)

1/ If you
• live in #Ontario, #Canada
• access, approved for The #DirectFunding Program through @CIL_Toronto

I would like to hear from you. I'm planning to apply to #DFP and would like client's knowledge of the process/related issues.
2/ I've called CILT, visited the website, and have #TheDirectFunding information application, but nothing quite compares to #livedexperience.
I don't have a terminal condition or quadri/paraplegia, and am not an amputee.
3/ When researching The Direct Funding Program for people with #Disabilities, the above conditions are what I encounter. I do meet the DFP criteria, I believe: i.e. need help w/transferring, grooming, dressing, item 7 of eligibility criteria.

lifting,
Read 4 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
Very disappointed by Medscape's USMLE practice question of the week. Asked to diagnose woman with unexplained pain and they don't even give a physical disorder as an option. Their 'correct' answer = Munchausen Syndrome. This is the bullshit we're teaching our docs?!
Munchausen Syndrome is considered rare, but the case of a woman with unexplained pain is anything but. There are numerous conditions that cause pain but are difficult to dx & don't show up on anything but the most specialized testing, if at all. A cbc does not show all, people!
Autoimmune diseases, mast cell activation disorders, Ehlers-Danlos Syndrome, #MyalgicEncephalomyelitis for example
Read 5 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

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