ME/CFS, Dysautonomia & POTS Awareness | Long COVID Ally | Health Equity Advocate

Joined November 2018
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Welp, just to throw out there if this ship sinks. My instagram is bhanlon15 (I don't use often but can adapt). I'm not familiar with Mastodon, but if others know more or think it can be a pivot point for advocacy purposes, I'm all for learning and trying.
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Dakota retweeted
@Guardian @NicolaKSDavis: ‘The goal is to help those with these conditions manage their illness – such as the worsening of symptoms after exertion. It doesn’t happen immediately after you have exerted yourself. It happens hours or even days later' 3/5 theguardian.com/society/2022…
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Dakota retweeted
@TechCrunch @psawers:'Post-exertional malaise (PEM) describes the worsening of a condition’s symptoms following even minor physical exertion, and it’s also common in ME/chronic fatigue syndrome' 2/5 techcrunch.com/2022/11/22/vi…
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Dakota retweeted
Since we launched last week, we’ve had some incredible coverage in the media. While the journalists chose to focus on #LongCovid in the headlines, we’re excited to see Visible as another reason for the press to talk about #MECFS and PEM/PESE. Here are a few articles: 🧵 1/5
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Tomorrow at noon ET, 9am PT! Please participate virtually if you can; check out the thread below.
In case you missed it... #MEAction is headed to the White House on December 1st at 12pm ET for World AIDS Day. We’re reaching out to invite you to show up virtually—or on-site if you’re able—for an important day of action. (1/7) #MECFS #LongCOVID docs.google.com/forms/d/e/1F…
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Dakota retweeted
U.S. COVID update: Number in hospital at 2-month high - New cases: 31,492 - Average: 44,015 (+1,066) - States reporting: 16/50 - In hospital: 29,740 (+967) - In ICU: 3,538 (+129) - New deaths: 313 - Average: 300 (-13)
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It’s #CryptoGivingTuesday, the biggest day of #cryptophilanthropy! 🚀 OMF allows #crypto investors to help solve #LongCOVID and #MECFS -- a major health crisis impacting millions of people globally. GIVE TODAY 👉 bit.ly/3ECzo2N @TheGivingBlock
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Eg. People with ME/CFS typically experience healthcare professionals who dismiss or ignore their health problems, or attribute their ME/CFS symptoms as coming from a psychological rather than physical cause, leading to inappropriate treatment or none at all. #MECFS
🅱️REAKING; Merriam-Webster chooses ‘gaslighting’ as its word of the year for 2022: Gaslighting is the psychological manipulation of a person, usually over an extended period of time. VIA @breakingnewsie
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Dakota retweeted
The most evil thing about Psychologizing ME/CFS, Long COVID is by making it seem like everyone with these Disease’s are choosing to stay sick willingly, no one ever advocates for us. They purposefully make it taboo to want to help us, so no one ever does, it’s beyond cruel.
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We're highlighting the voices and expertise of #MECFS & #LongCovid patient advocate @CynthiaAdinig, @latimes reporter @sandhya__k, and @itsbodypolitic founder & journalist @fi_lowenstein. Stay tuned for a recording of our #LongCovid & media panel, hosted w @Interdependence.
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if you're looking for a worthy cause for giving tuesday, the research being done at @OpenMedF is the great hope for me/cfs patients.
**LAST DAY to have your donation to OMF TRIPLED! #GivingTuesday has arrived. Today we ask our community to rally together to help us fundraise for small clinical treatment trials: bit.ly/3CdXYFH. The triple match runs out in just a few hours!! #PwME #MECFS #LongCOVID
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Dakota retweeted
I donated a bit to the OMF. I know we patients often are not in a position to donate but if you can and want to, here is a link, they are tripling the impact of donations omf.ngo/?form=TripleTuesday2…
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Wenn der Muskel nach 15 min Haushalt (wischen) aufgibt und du kein Glas vor Schwäche mehr halten kannst. That‘s life with #longcovid
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Dakota retweeted
This is really important. One of the reasons I didn't recognise ME in myself was I was so mild- I didn't fit the 50% reduction in activity criteria. Sadly for me it led to worse illness.
I have v severe ME so that is what I tend to describe here, but it is essential that people with 'Mild' ME speak about their experience, bc 1) in many cases it is also awful and life altering, 2) most pwME are probably Mild, and 3) the undiagnosed need to recognize themselves
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Those in power of the treatment of ME/cfs #PACEtrial stated that done give them wheelchairs because they become dependent on them and the DWP knew what they were doing and this lived experience shows the damage done. Why are they still allowed to practice?
I hid my #MECFS for the first 5 years, until it was no longer deniable or practical. I was in denial myself because of what society recognises as disability. Invisible disability is still disability abc.net.au/news/2022-11-30/i…
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Dakota retweeted
I hid my #MECFS for the first 5 years, until it was no longer deniable or practical. I was in denial myself because of what society recognises as disability. Invisible disability is still disability abc.net.au/news/2022-11-30/i…
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