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Jul 27 • 4 tweets • 2 min read
Researchers: want to see the resources from my workshop at #IACFSME earlier today?

Check out the landing page for the talk! Here you'll find: 🧵

(1/4)

meaction.net/workshop
ACTIVITY 1: Planning & Budgeting for Research Partners with Lived Experience

Patient participation improves quality, validity & perceived credibility of research.

Use this handout to plan & budget for patient partners at every stage of research. (2/4) meaction.net/workshop
ACTIVITY 2: Recruiting Underrepresented Populations in ME/CFS Research

Sedentary controls, severely ill pts, men, & BIPOC individuals help generalizability & applicability of your research.

Use this worksheet with "outreach points" to represent time & energy investment... (3/4)
...to plan & budget for your outreach strategy. Remember not to use too many methods, or you'll overwhelm your study coordinator!

(Seed grant = 5 pts; Med = 9 pts; $1M+ = 13 pts)

Thanks to all attendees; hope you found the talk & resources useful! (4/4) meaction.net/workshop

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More from @exceedhergrasp1

It'sME(Jaime) Profile picture
Jul 30
My niece is Going Through It, & she agreed to use her suffering for educational purposes! So strap in, #NEISvoid & #MedTwitter for a #CaseStudy on "early ME" or "peri-onset ME".

This is what your patient may look like if they are developing ME but don't YET have PEM.

(1/19) 🧵
Recent history of sometimes overlapping infections you normally see in immunocompromised individuals.

Our pt (over ~3 mo):
~ COVID-19
~ MRSA (!)
~ Strep
~ Cutaneous infection - pathogen unclear. Ablation required.

(2/19)
Following lab values are often clinically low or borderline; in our case's case, borderline.
~MCV
~MCH
~MCHC
~B12

Together these indicate potential anemia. Check ferritin, iron, B6 as well. (3/19)
Read 19 tweets
It'sME(Jaime) Profile picture
May 17
What are some things I consider Very Bad that I don't see?
1) The Multiple-Hit Hypothesis

Folks who recovered from #LongCOVID can & will catch SARS-CoV-2 and contract #LongCOVID a second time. And many won't recover this time.

Many #pwME had multiple hits (usually but not necessarily w/o full recovery) before a 'point of no return'.
2) A Deadlier Variant

People assumed Omicron was 'mild' because they observed fewer deaths. As it turns out, it was killing vaccinated ppl less often. It's not less deadly than other variants. There is no reason we will move towards less deadly variants. scmp.com/news/world/uni…
Read 15 tweets
It'sME(Jaime) Profile picture
May 17
I wonder how many realize we have not each touched on the worst-case scenario w/SARS-CoV-2. We're so busy trying to agree on what's happening right now.

You can't predict the future while you're still negotiating the present.
Look, clear-cut answers aren't easy. But saying, "getting COVID is good b/c it gets rid of COVID anxiety!"; or that COVID is over; or that COVID is like a cold; or that the loss of over a million American lives is nothing... these are deliberately misleading statements.
There's also a kind of ethical undercutting. We are supposed to laugh off a million American lives. Doing so is presented as worldly and grown-up.

We should be grieving.
Read 7 tweets
It'sME(Jaime) Profile picture
May 17
Early on we observed a period of improvement lasting several months followed by a 'second dip' into harder onset.

Even I, with really mild symptoms, had a noticeable dip around mo 3-4 after 'recovery'.

If you did too, it's not b/c you did anything wrong. #LongCOVID (1/3)
There are many possible reasons for this (including a return to semi-normal immune function!) but it is a pattern seen in many with #LongCOVID. And, looking back, in those with #MECFS. (2/3)
(Not claiming Serpina feels this way, but using their story as an example only!) (3/3)
Read 4 tweets
It'sME(Jaime) Profile picture
May 6
So 2020-22 has opened a lot of doors for folks in the ME community. Overall, this is great!

AND it's opened the door to charlatans, tokenistic participation, patient-blaming & ableism, cutesy-app designers & folks clueless about chronic complex disease presented as experts. 🧵
People with #LongCOVID who are new to the space may be unaware how hard #pwME have worked to eradicate people of bad faith from our research, clinical, and advocacy spaces. We've developed a reputation for it: #pwME don't take yr sh!t.
We've developed that tough attitude after being exploited. A great deal. And lied about. A great deal. And promised. A great deal. And harmed. A great deal.

We're trying to stand between you and the same.
Read 6 tweets
It'sME(Jaime) Profile picture
Apr 16
Anybody remember when, in 2016, #MEAction put together this community request to help respond to the @NIH 's RFI on ME?

I was pretty new to the world of advocacy. A long, thoughful 🧵(1/)

meaction.net/2016/06/18/tak…
That summer, I went to the Johns Hopkins Summer Epidemiology Seminar; had a great prof I still talk to now & again.

Put the survey together (with the help of Paige) and we got 1800+ responses to questions around patient research priorities in ME/CFS. (2/)
I was in a flurry... I remember I had clips from pertinent articles splayed out all over my living room carpet and there was a SYSTEM. Vicky Whittemore kindly gave me an extension when I asked. Then Ben HsuBorger saw the behemoth I'd produced and said, "JAIME. JAIME NO." (3/)
Read 23 tweets

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