With every new infection I have caught over the years with ME, my function has been reduced.
COVID was a threat I saw coming and did everything in my power to avoid. I begged others to do the same.
1/
But it’s not enough when only those with chronic illnesses are masking in public spaces.
We needed others to mask too. To stay home when sick. To invest in air purification. Etc.
Knowing this was not happening, we knew our risks were heightened, despite our best efforts.
2/
Mar 18 • 13 tweets • 2 min read
Brain retraining programs in #MyalgicEncephalomyelitis, #Fibro, #ChronicPain, etc are a scam, directed at very vulnerable patients.
They are sometimes named “neuroplasticity” or “cognitive” programs to make them sound more credible and harmless.
#Pseudoscience
1/
They are popular within healthcare because…
1-They absolve the healthcare system of any responsibility.
They tell the patient it *will* work…
…or they’re doing it wrong.
#Convenient
2/
Feb 26 • 20 tweets • 4 min read
If I went into remission tomorrow from #MyalgicEncephalomyelitis, my life would be different but amazing.
I would have to rebuild the crumbled parts…but would do that happily.
And I would carry with me the lessons from this terrible experience always.
I share this…
1/
I am frustrated when I hear researchers or clinicians making assumptions about something they have never lived with/do not understand.
It may seem harmless enough at first glance. But when these assumptions and biases go unchecked, they greatly affect our access to care.
2/
Jan 30 • 17 tweets • 3 min read
Friends, I am at a crossroads.
I am so fed up with the constant neglect, gaslighting, dismissal, bad faith arguments, casual disrespect, misogyny, sexism and ableism our #MyalgicEncephalomyelitis community has to endure…on top of a debilitating illness that never relents.
1/
While it’s always been extremely challenging work, I’ve heard from many of you that it’s become considerably harder to be an advocate or research partner, over the past few years.
We are often excluded from spaces and tables that should value our knowledge and experience.
2/
Nov 13, 2023 • 21 tweets • 4 min read
Long COVID. It’s a new name coined in 2020.
However, it does NOT represent a new or unique outcome after someone has had an acute infection.
Before that name was created, we all existed and suffered.
1/
Different infections had led us to each other over the decades.
And yes, we had multiple presentations of illness back then too, because infections have always been able to cause damage in all the ways we see with LC.
2/
Nov 5, 2023 • 7 tweets • 2 min read
Low dose naltrexone or #LDN is a medication worth trying if you have an infection-associated chronic illness.
But you’ll drop it too quickly, if it’s not managed correctly.
Should be dosed very low and slow (start at 0.1 mg, liquid prep is easiest for first month or two).
1/
I increased every 3 weeks and only by a tiny bit (0.1-0.2) for the first few months.
More than that and the side effects would overwhelm me.
I really do think our bodies need to get used to this medication very slowly. And we need to rest hard the first few days.
2/
Feb 12, 2023 • 30 tweets • 7 min read
Had someone message me to say that they cured themselves with exercise so they are happy to see these studies.
No. They had chronic fatigue.
Not to be confused with what I and millions of others have, a debilitating multisystem illness #MyalgicEncephalomyelitis or #MECFS.
One is a symptom of MANY conditions. (Chronic fatigue.)
One is a serious and complex multisystem illness that leaves us in a terrible state with up to 100+ symptoms and several comorbidities. (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.)
2/
Every Fall/Winter my health declines significantly. In the Spring/Summer, my health improves a bit.
Each year though, my overall baseline declines.
It feels like dying slowly and painfully. Never knowing when your body will just quit.
1/
And no. I’m not depressed or anxious. (Though it would certainly be understandable if I was.)
In fact, I continue to be in awe of myself and my community’s emotional strength in the face of this relentless physical suffering.
2/
I would encourage everyone in research and healthcare, treating patients with complex chronic illnesses and/or chronic pain, or funding the research, to please read this.
You’ll learn a lot and you’ll understand why patients are constantly having to educate and advocate.
May 2, 2020 • 6 tweets • 2 min read
Feeling really down lately. This illness really kicks you in the face some weeks.
It’s hard to have no answers when everything in your body seems to not be working. No medications. No cures. No understanding. No access to supports. No voices fighting for us...except us.
So many of us have lost so much to this illness.
Our health. Our beloved careers. Our financial security and independence. Friends. For some, their families. Freedom. Access to nature. Ability to be active. Recognition of our skills and accomplishments.
