Plus a "sick" pajama party for people with energy limiting conditions
I'm from PA and my mom was a public health educator for our county growing up. My Lyme education started young! So many family friends in our area ended up with Lyme disease and chronic Lyme; I am convinced it exists, and most folks in that part of the world are, too. I'm SO happy to see that there are vaccines getting developed!
Sigh. Much the same critiques were (still are) leveled at ME/CFS though there is some promising work on biomarkers being done.
Even a pajama picnic would be a challenge some days but would go if well enough. In the UK they’ve done #millionsmissing protests where they leave shoes for every person missing due to ME/CFS
Thanks for this post! I got seriously ill in 2011 but wasn’t diagnosed with Lyme till over 4 years later. I’ve been in the middle of reflecting on the last 12 years and just starting to write about that experience on Substack. It feels so complicated to have had my life upended by a disease many wouldn’t even recognize as real. 🥲
As a Chronic Lyme patient with persistent vector borne infections (yes, they do exist) I agree that Lyme is one of the most passionate debates in the chronic illness world. Rightfully so.
The Lyme wars have left millions of patients undiagnosed, misdiagnosed and mistreated. Recently the CDC amended their website to acknowledge that Lyme can cause chronic symptoms. It’s long overdue, but hardly adequate and it only made news in the Lyme community.
The politics of Lyme are real as told by many authors and in several films. Also true is the scientific evidence of the persistence of Borrelia Burgdorferi. Unfortunately, decades of misinformation has led to the common belief that Lyme can be easily treated with two weeks of antibiotics. This is simply not the case for many patients. For those who are misdiagnosed, or left undiagnosed for years, the infection is left to run rampant and the result can be devastating. In addition to my experience, I’ve witnessed first hand the result of prompt yet inadequate treatment and the devastating results that follow that scenario too!
The idea that a Lyme vaccine will solve the growing issue is another false premise brought to us by those who told us Lyme is easy to treat and nothing to worry about. The fact is ticks carry more than Lyme.
In my Substack about chronic illness, I offer Lyme resources which should be widely available: that there are TWO standards of care for Lyme disease and patients have a choice; that Lyme is a clinical diagnosis and the standard test misses 50% of cases and more.
Thank you for raising the issue of Lyme. I encourage everyone to educate themselves on the dangers and reality of Lyme, including proper protection and how to find help should you become one of the unlucky ones.
I would love to attend a pyjama picnic one day, but can’t as I’m mostly bedbound from severe ME/CFS. We do other stuff, though, like online movie nights, or watch sports together while lightly chatting online...
I love a spoonie pajama picnic *in theory*, but I have to prioritize socializing these days with people I already know well so I don’t have to be as “on” socially.
Far too many people suffer from PTLD for me to believe it isn’t real. People once thought the Earth was flat, too (some still do 🙄). Give it time; a biomarker will come. That’s my feeling.
There used to be an effective Lyme disease vaccine! Why we can’t just bring it back is a longer frustrating for another time and the turkey’s done, but here: https://time.com/6073576/lyme-disease-vaccine/?amp=true
I really want to be in that Pfizer trial. It would feel like having a hiking superpower
Id love a pyjama picnic 💛 better to see that advertised than a run🙃 or even a walk for those of us unable to walk. I’ve only heard of Lyme disease as a comorbid illness to migraine disease so didn’t realise it was yet another chronic illness not being taken seriously😒 thank you for sharing.