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.
1/
No. They had chronic fatigue.
Not to be confused with what I and millions of others have, a debilitating multisystem illness #MyalgicEncephalomyelitis or #MECFS.
1/
https://twitter.com/sabrina_poirier/status/1624435442408906753
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/
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/
The name CFS causes confusion regularly. 😞
It leads to more confusion (and significant harm) when researchers new to #MECFS don’t understand the difference and include people with only the *symptom* of chronic fatigue in their studies.
3/
It leads to more confusion (and significant harm) when researchers new to #MECFS don’t understand the difference and include people with only the *symptom* of chronic fatigue in their studies.
3/
If you get the research cohort wrong though, it can seem like exercise is a reasonable treatment or cure.
After all, if you’ve ever felt burnt out or depressed, a long walk or an intense gym session can leave you feeling great.
I remember the feeling. I miss it too. 💔
4/
After all, if you’ve ever felt burnt out or depressed, a long walk or an intense gym session can leave you feeling great.
I remember the feeling. I miss it too. 💔
4/
Exercise doesn’t work that way for those with #MyalgicEncephalomyelitis though.
You know how we know?
Research that has shown the changes in our bodies.
And our own experiences. Because we all pushed and exercised in our early years due to poor clinical knowledge.
5/
You know how we know?
Research that has shown the changes in our bodies.
And our own experiences. Because we all pushed and exercised in our early years due to poor clinical knowledge.
5/
We had no idea what we had in the early years. We were told it was likely stress or anxiety.
Most of us didn’t even need to be told to exercise. We just did it.
It’s what you do when you think you’re tired and need to boost your health and energy.
Our doctors agreed.
6/
Most of us didn’t even need to be told to exercise. We just did it.
It’s what you do when you think you’re tired and need to boost your health and energy.
Our doctors agreed.
6/
But after every session, our bodies would feel worse.
For me, the pain would skyrocket. Eating and breathing would become difficult. Digesting good became complicated. And the fatigue would be crushing. Like I had swallowed a bottle of tranquilizers.
But did I stop?
7/
For me, the pain would skyrocket. Eating and breathing would become difficult. Digesting good became complicated. And the fatigue would be crushing. Like I had swallowed a bottle of tranquilizers.
But did I stop?
7/
Did I start to fear exercise?
No.
I still loved it.
I made excuses for my sudden struggles at the gym or in yoga classes. It must be aging? Maybe it was something I was eating? Maybe it was because I was not sleeping as well?
So I worked on those things. For years.
8/
No.
I still loved it.
I made excuses for my sudden struggles at the gym or in yoga classes. It must be aging? Maybe it was something I was eating? Maybe it was because I was not sleeping as well?
So I worked on those things. For years.
8/
I had always been fit and eaten well. But something was amiss. So I tried every diet going. Detoxes. Carnivore. Paleo. Keto. Low carb. FODMAP. Low histamine. No Gluten. No sugar. Green juices. Whole Foods, Plant Based.
I was still sick though and getting worse.
9/
I was still sick though and getting worse.
9/
Then, I tried so many supplements and vitamins. I saw naturopaths, acupuncturists and doctors trained in Chinese medicine.
I had lost trust by then in my own doctor.
Specialists told me I was just stressed or tired because I had a career and kids. It was “normal”.
10/
I had lost trust by then in my own doctor.
Specialists told me I was just stressed or tired because I had a career and kids. It was “normal”.
10/
Through all of this, I kept trying to exercise.
But now I had my yoga instructor telling me to take a break as yoga seemed to be making me sicker. She was worried about me.
My reply:
“I can’t give up yoga. That is what is keeping me sane through all of this.”
11/
But now I had my yoga instructor telling me to take a break as yoga seemed to be making me sicker. She was worried about me.
My reply:
“I can’t give up yoga. That is what is keeping me sane through all of this.”
11/
But I listened & took a break from yoga.
I went to the gym instead.
And was still trying to take my kids for hikes & swims on the weekends too.
I was a mess though. I struggled to do as much. And sometimes I cried in the changing rooms, wondering what was happening to me.
12
I went to the gym instead.
And was still trying to take my kids for hikes & swims on the weekends too.
I was a mess though. I struggled to do as much. And sometimes I cried in the changing rooms, wondering what was happening to me.
12
One day, I was at the gym and my body just stopped working. It just shut down. I couldn’t move.
The doctor I saw that day told me to rest for a few weeks before trying to work out again.
They had no explanation for what had happened.
I still had no diagnosis either.
13/
The doctor I saw that day told me to rest for a few weeks before trying to work out again.
They had no explanation for what had happened.
I still had no diagnosis either.
13/
So I tried to rest…but I had no idea how to really.
Rest did not come easy to me.
I would pass out on the couch and wake feeling disoriented and guilty.
I would fall asleep in the bathroom at work.
I would have to pull over to nap.
And still, I fought rest.
14/
Rest did not come easy to me.
I would pass out on the couch and wake feeling disoriented and guilty.
I would fall asleep in the bathroom at work.
I would have to pull over to nap.
And still, I fought rest.
14/
I saw a sleep specialist to help me rest more effectively at night as I had significant sleep disturbances.
We tried everything. Nothing was helping.
He thought I might have something at the root of all these symptoms. He had patients with these symptoms after viruses.
15/
We tried everything. Nothing was helping.
He thought I might have something at the root of all these symptoms. He had patients with these symptoms after viruses.
15/
In one appointment, I even asked him if I was imagining all of this. (I was gaslighting myself at that point.)
He said no.
He knew I was very sick. He said I was actually coping well considering what I was up against.
He referred me to a complex, chronic illness clinic.
16/
He said no.
He knew I was very sick. He said I was actually coping well considering what I was up against.
He referred me to a complex, chronic illness clinic.
16/
In the meantime, I kept trying to stay active, despite all the symptoms and challenges.
I was struggling though. With every outing, I deteriorated.
I was still NOT afraid of exercise. I craved it.
It was a comfort to me that felt slightly out of reach now though.
17/
I was struggling though. With every outing, I deteriorated.
I was still NOT afraid of exercise. I craved it.
It was a comfort to me that felt slightly out of reach now though.
17/
Finally, I was given several diagnoses. CFS, Fibromyalgia and MCS.
I finally knew what was wrong. Now I could fix it. I was grateful.
The clinic suggested trauma therapy, mindfulness and…you guessed it…yoga.🤔
18/
I finally knew what was wrong. Now I could fix it. I was grateful.
The clinic suggested trauma therapy, mindfulness and…you guessed it…yoga.🤔
18/
They said I would recover if I trusted in the process and worked hard at it.
Hard work has never been an issue for me. I thrive on a challenge.
I had already been doing mindfulness and yoga, and had done therapy before too. I was still sick.
But…I trusted them.
19/
Hard work has never been an issue for me. I thrive on a challenge.
I had already been doing mindfulness and yoga, and had done therapy before too. I was still sick.
But…I trusted them.
19/
I’ll cut to the chase. Despite my openness and hard work, I got sicker still.
But now, I was ashamed and felt like a failure too.
I was not recovering. They seemed to see that too.
The trauma therapist insinuated that I “didn’t want it bad enough”.
20/
But now, I was ashamed and felt like a failure too.
I was not recovering. They seemed to see that too.
The trauma therapist insinuated that I “didn’t want it bad enough”.
20/
This would be my first…but not my last lesson in patient blaming.
I drove home that day in tears. I was angry at my body for not cooperating. At my mind for not healing.
I considered suicide.
I didn’t want to be a burden or remembered this way. (Internalized ableism.)
21/
I drove home that day in tears. I was angry at my body for not cooperating. At my mind for not healing.
I considered suicide.
I didn’t want to be a burden or remembered this way. (Internalized ableism.)
21/
I had not started this journey with poor mental health.
But I had now been traumatized by the medical system at every turn and I was now struggling with anxiety every time I had to see a doctor.
I blamed myself.
Several people encouraged me to leave trauma therapy.
22/
But I had now been traumatized by the medical system at every turn and I was now struggling with anxiety every time I had to see a doctor.
I blamed myself.
Several people encouraged me to leave trauma therapy.
22/
I had been doing some research online (yes, Google) and I decided to go to the US to see a specialist with experience in #MECFS.
It was my last ditch effort.
I was so sick…and suffering at a level I had never known was possible (and I was still only “mild”/moderate ME.)
23/
It was my last ditch effort.
I was so sick…and suffering at a level I had never known was possible (and I was still only “mild”/moderate ME.)
23/
That specialist changed everything. She was knowledgeable & kind but did not sugarcoat anything.
She told me the truth about everything. Recovery rates were low. No cures or treatments.
She diagnosed a few comorbidities we could treat and we talked about resting and pacing.
24
She told me the truth about everything. Recovery rates were low. No cures or treatments.
She diagnosed a few comorbidities we could treat and we talked about resting and pacing.
24
She explained that exertion of any kind is challenging because of post-exertional malaise (PEM).
She explained what they knew so far.
She told me to slow way down to protect the health I still had.
I’ve never been so grateful for truth. 🙏
25/
She explained what they knew so far.
She told me to slow way down to protect the health I still had.
I’ve never been so grateful for truth. 🙏
25/
But why did I have to go to the US for this information? Why wasn’t it available here?
I still had a lot of learning to do.
I am grateful to all those who were willing to help me understand the history of ME.
It was a sordid one. Corruption. Contempt. Harm. Neglect.
26/
I still had a lot of learning to do.
I am grateful to all those who were willing to help me understand the history of ME.
It was a sordid one. Corruption. Contempt. Harm. Neglect.
26/
The more I learned, the more I understood why we had been left neglected.
And it is neglect. Inhumane neglect.
But what struck me was how ridiculous the recovery narrative was, that was used against us.
They were saying we could recover with exercise and therapy…?
😳
27/
And it is neglect. Inhumane neglect.
But what struck me was how ridiculous the recovery narrative was, that was used against us.
They were saying we could recover with exercise and therapy…?
😳
27/
Ummm. What?!
I thought back to the science that I had seen. The CPET research.
I had seen the US National Academy of Medicine put out a document summarizing ME as a serious illness (IOM Report).
Why were they pretending not to know any of this?!
28/
I thought back to the science that I had seen. The CPET research.
I had seen the US National Academy of Medicine put out a document summarizing ME as a serious illness (IOM Report).
Why were they pretending not to know any of this?!
28/
Initially, I believed it was an accidental lack of knowledge. A lack of awareness.
See, I believe the best in people. I’m an eternal optimist.
Or at least, I was.
Time, knowledge and personal experiences have changed me.
29/
See, I believe the best in people. I’m an eternal optimist.
Or at least, I was.
Time, knowledge and personal experiences have changed me.
29/
I now understand that careers and a lot of money are at stake. Being “right” about exercise is more important than the actual reality.
That’s why our experiences and knowledge are denied. Again and again.
Millions of us. Globally.
Exercise is not a treatment for ME.
30/
That’s why our experiences and knowledge are denied. Again and again.
Millions of us. Globally.
Exercise is not a treatment for ME.
30/
• • •
Missing some Tweet in this thread? You can try to
force a refresh
