Thread by @ElizaCharley

What are some examples of best practice (or at least trying) to diagnose, support & treat #LongCovid and #pwME? 1/

We hear the horror stories - because this, unfortunately, is standard in many if not all countries. And we must (must) call out mistreatment & barriers to care.

But please tell me, what are some times things went well? Needs met? Easy access? Treated well? #MECFS #pwME #pwLC 2/

Here’s one example, the late Dr Don Lewis in Melbourne treated #MECFS (especially gut microbiome aspect).

Environmentally, His building was purposely set up for the needs of patients (imagine!): big wide couches to lay flat in waiting room, low/no lights, quiet / low stimuli 3/

Education & culture - the reality of the disease seemed well-understood & believed by all staff I encountered including admin & nurses, anyone drawing blood etc. (no false hope, psych comments, or pseudo compassion; just good old science & kindness). 4/

Access: Although the doc wait list was about 6 months (& I never saw Dr L in the end), I was still able to access their testing regime quickly for assessment with a very knowledge nurse. The test insights changed my management & treatment in a way which helped me at the time. 5/

In sum, having a physically-appropriate environment
+ an entire staff educated in the reality & needs of the disease
+ having a (truly) research-based testing & treatment pathway
+ allowing access to testing even while books were full,
had a direct impact on my health outcomes.6/

When I had sudden & significant relapse of #MECFS in 2020, this clinic was my first call. Sadly, I learned the great doctor had passed away and his work had not been continued. The clinic was closed. This gem was gone. 7/

me-pedia.org/wiki/Donald_Le…

The clinic & treatment may well have had its faults, I honestly don’t know, and can only speak to my own experiences there in this instance.

But I ponder it as an example of the sorts of things that matter for treating people well, with ME, Long Covid, & similar diseases. 8/

As I re-engage with advocacy efforts for this year - esp in Australia (where the above story is an exception; sadly harm is the norm) - I’d love to hear from you: 💙
What matters for good clinics for ME, LC & similar diseases?
Do you have examples of this being attempted well? 9/

Overall, my main message for “better treatment” is that it must be Accessible, Adequate and Appropriate.
And, The need is urgent.

Many people are working in different ways to advocate for better. I hope that further steps will have been taken by the end of the year. 10/10