Thread by @exceedhergrasp1

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/)

Ben heroically cut it down to size for submission to NINDS. I wrote three short articles about the process for meaction.net (Part I, II, III). But then I submitted the original, uncut version under my own name, no affiliation. (4/)

I was chatting with @C_W_Armstrong who asked me a question that I knew I'd asked on that RFI survey, so I went looking for it... and found my gigantic report.

Lordt I would make almost EXACTLY the same recommendations as I sent in 2016 if they asked me again. (5/)

We made a lot of gains in 2015-2018 or so, largely because of the work of Jen Brea: her TED Talk, her film, and her persistence at #MEAction. I do feel momentum has slowed. It's slowed for numerous reasons, up to & including the pandemic itself. (6/)

I, at least, often picture past-me as a bit naive. There are certainly a FEW things I'd change about the document if I were to revisit it. But the writing is good, the premises are sound, there are even a few jokes in there to make sure the reader is "still listening". (7/)

Little-me did her best. (8/)

But because it was pretty darned good, and mentioned a lot of things that "patients know, but no one has researched", it gives me the same feeling as it does every time someone "discovers" something new about Long COVID that we already knew was true about ME... (9/)

And -- this can't be overstated -- researchers and clinicians in #LongCOVID are making a lot of the same *ideological* errors as they did in ME. Because their thinking about how medicine and disease work hasn't actually changed. They are making all the same mistakes. (10/)

In one group, I said this was like "watching a very familiar train wreck in slow motion".

For those unfamiliar: (11/)

1) Pacing is exerting when able and resting when tired. If you're "grading" activity up over time, that is graded exercise (or graded activity), not pacing.

Graded exercise is a poor choice for pwME and Long COVID. (12/)

People w/ ME/CFS seem to be harmed by exertion. This can be measured via a two-day cardiopulmonary exercise test. Function drops on the 2nd day in comparison to the 1st. This is not just not normal for healthy people: it's not normal for other sick people. It may be unique. (13/)

You may improve patients' fitness if you treat other symptoms: they will become more active as a natural consequence of feeling better. However, "improving fitness" doesn't treat or cure ME/CFS or Long COVID, & pushing too hard can lead to permanently worsened function. (14/)

I understand after a lifetime of "exercise good, rest bad" the above may be hard to accept. Even as an early patient, you may think, "but if I just increase my activity slowly enough I'll get back to normal!" If you do, that's lovely & we're happy for you. (15/)

Important to add: It's not because you handled things properly and others are too foolish to have done things right. It will be a *combination* of 'you took care' and 'you got lucky'. (16/)

2) Beyond the ability to continue taking care of oneself and potential med compliance, attitude has zero effect on outcomes.

FFS please stop trying to determine the personality of people who get Long COVID.

In my snarkier moments I call this, "diagnosis via Sun Sign." (17/)

3) If you haven't yet found a biomarker it could be: the wrong
* tissue
* measurement technique
* population
* time of day/month
...
And you should go on & on & ON before you ever reach, "I did the three whole tests I know how to do, so the patient has no reason to be ill." (18/)

For example, if you say, "since I can't find active infection in a blood draw, it isn't in the body."

...this is straight-up goofiness. Please visit PubMed someday <3 (19/)

What's getting to me is that, even in people who ARE curious and want to learn, they are STILL looking in the wrong places. Peter Robinson at JAX wrote a paper about patient-described symptoms & how they are both richer & more numerous than clinician- or researcher-described. (20

Another paper says that in "rare, or rarely diagnosed" diseases, the patient has the greatest expertise.

This isn't a cute thing we say to make patients feel good. The knowledge gap is real, and it's enormous.

And it's not pointing in the direction you think. (21/)

Looking at that hard work done by an earnest me of six years ago and finding it still decent -- and knowing I've helped put together an almost identical document for NIH this year, after MUCH kicking and screaming -- reminds me of the Sisyphean nature of advocacy. (22/)

And that it may well continue to be a useless labor until the younger crop of researchers and clinicians, who seem to have internalized the "nothing about me, without me" ethos, are in charge. /fin