#Tag · bonfire.cafe

🧵
A sympathetic & knowledgeable OT who specialises in #longCovid & ME/CFS reflects on the lessons from how the long Covid community came together and how it shows patient knowledge & expertise from lived experience is important in many ways.

She also highlights how the pandemic highlighted gaps in care for #MECFS, #POTS & related conditions

https://onelifelivedwell.substack.com/p/long-covid-began-with-somethings

#CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
@mecfs
@longcovid
#PASC #PwLC #postcovid #postcovid19 @pots

Long COVID Began with “Something’s Still Not Right”

Private messages became public grief, then public science.

Tom Kindlon

@tomkindlon@disabled.social · yesterday

She also highlights how the pandemic highlighted gaps in care for #MECFS, #POTS & related conditions

https://onelifelivedwell.substack.com/p/long-covid-began-with-somethings

#CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
@mecfs
@longcovid
#PASC #PwLC #postcovid #postcovid19 @pots

Long COVID Began with “Something’s Still Not Right”

Private messages became public grief, then public science.

Andreas Wagner boosted

Tom Kindlon

@tomkindlon@disabled.social · last week

The German ME/CFS Research Foundation has published a half-year report to give an overview of what they have achieved in the second half of 2025.

Version in English:
https://mecfs-research.org/en/2025winter-report/

#MEcfs #CFS #PwME @mecfs

Tom Kindlon

@tomkindlon@disabled.social · last week

The German ME/CFS Research Foundation has published a half-year report to give an overview of what they have achieved in the second half of 2025.

Version in English:
https://mecfs-research.org/en/2025winter-report/

#MEcfs #CFS #PwME @mecfs

Billy Smith and 1 other boosted

Tom Kindlon

@tomkindlon@disabled.social · last week

From:
https://bsky.app/profile/chromatowski.bsky.social/post/3liuymbcslc25

#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
@mecfs

C.H. Romatowski
‪@chromatowski.bsky.social‬
Follow back
NIH recently found 1 in 22 ppl who’d had Covid developed ME/CFS. The “mild” form of that disease, as
@julialmv.bsky.social
’s graph shows, means losing capacity to do 50% of your daily activities. What would you give up? Friends? Time w/your kids? Could you cut work hours in half w/o losing yr job?

A stacked bar chart (oriented horizontally) labeled: Living with ME (myalgic encephalomyelitis / chronic fatigue syndrome) Each horizontal bar is a disease status: Pre-ME, Mild ME, Moderate ME, Severe ME, Very Severe ME. The width of each bar represents how much energy is available in each status (100, 50, 25, 12.5, and 6.25 respectively). Each bar is divided into sections for how one might allocate their energy: hygiene & nutrition (gray); caregiving, cleaning errands (red); work (orange); exercise (yellow); friends (green); hobbies (blue); fun (purple). With worsening ME, the hygiene & nutrition takes up a larger proportion of total available energy and the amount of energy available for all other parts of life shrinks. Mild ME has most things cut in half, with exercise cut smaller. Moderate ME removes exercise altogether, and everything else shrinks. Severe ME has only tiny slivers of red, orange, green, blue and purple. Very Severe ME has only a tiny sliver of green. — C.H. Romatowski ‪@chromatowski.bsky.social‬ Follow back NIH recently found 1 in 22 ppl who’d had Covid developed ME/CFS. The “mild” form of that disease, as @julialmv.bsky.social ’s graph shows, means losing capacity to do 50% of your daily activities. What would you give up? Friends? Time w/your kids? Could you cut work hours in half w/o losing yr job? A stacked bar chart (oriented horizontally) labeled: Living with ME (myalgic encephalomyelitis / chronic fatigue syndrome) Each horizontal bar is a disease status: Pre-ME, Mild ME, Moderate ME, Severe ME, Very Severe ME. The width of each bar represents how much energy is available in each status (100, 50, 25, 12.5, and 6.25 respectively). Each bar is divided into sections for how one might allocate their energy: hygiene & nutrition (gray); caregiving, cleaning errands (red); work (orange); exercise (yellow); friends (green); hobbies (blue); fun (purple). With worsening ME, the hygiene & nutrition takes up a larger proportion of total available energy and the amount of energy available for all other parts of life shrinks. Mild ME has most things cut in half, with exercise cut smaller. Moderate ME removes exercise altogether, and everything else shrinks. Severe ME has only tiny slivers of red, orange, green, blue and purple. Very Severe ME has only a tiny sliver of green.

Tom Kindlon

@tomkindlon@disabled.social · last week

From:
https://bsky.app/profile/chromatowski.bsky.social/post/3liuymbcslc25

#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
@mecfs

Mre. Dartigen [maker mode] boosted

Tom Kindlon

@tomkindlon@disabled.social · 2 weeks ago

🧵
"Why I Can’t Just Meet You for Dinner: The Reality of Post-Exertional Malaise"

https://substack.com/home/post/p-178293036

In a thoughtful blog post, the author tries to explain #PostExertionalMalaise and how people who suffer from it need to be very careful with which activities they take on.

He highlights how this symptom can lead a worsening of the condition which could be permanent.

#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
@mecfs
@longcovid
#LongCovid #PEM

Why I Can’t Just Meet You for Dinner

The Reality of Post-Exertional Malaise

Tom Kindlon

@tomkindlon@disabled.social · 2 weeks ago

🧵
"Why I Can’t Just Meet You for Dinner: The Reality of Post-Exertional Malaise"

https://substack.com/home/post/p-178293036

In a thoughtful blog post, the author tries to explain #PostExertionalMalaise and how people who suffer from it need to be very careful with which activities they take on.

He highlights how this symptom can lead a worsening of the condition which could be permanent.

#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
@mecfs
@longcovid
#LongCovid #PEM

Why I Can’t Just Meet You for Dinner

The Reality of Post-Exertional Malaise

Angela Antunovic boosted

Tom Kindlon

@tomkindlon@disabled.social · 2 weeks ago

Short blog post by K. Johnstone:

"'You'd get better if you just....' is bullying and we don't deserve it."

https://substack.com/@mecfs/note/c-203079885

#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
@mecfs
#chronicillness #hiddenillness #invisibleillness #ChronicIllnesses #LongCovid @longcovid #ChronicPain

K. Johnstone
4d
Making sense of ME/CFS

"You'd get better if you just...." is bullying and we don't deserve it.

People with ME, Long Covid, and other chronic diseases are bombarded with messages that our illness can be treated 'holistically,' using a 'mind-body' approach. We just need to 'calm our nervous systems'. We need to 'reprogram our nervous systems'.

The treatment you're supposed to do, the one magic trick that will 'cure' you, keeps changing. Yoga. Breathwork. Mindfulness. No, a different kind of mindfulness. Massage. Positive thinking. No, a different kind of positive thinking.

It's exhausting. But more than that, it belittles us. It dismisses us. The people who insist on saying "You'd get better if you just did this one particular type of therapy," see themselves as compassionate, but they are bullies. — K. Johnstone 4d Making sense of ME/CFS "You'd get better if you just...." is bullying and we don't deserve it. People with ME, Long Covid, and other chronic diseases are bombarded with messages that our illness can be treated 'holistically,' using a 'mind-body' approach. We just need to 'calm our nervous systems'. We need to 'reprogram our nervous systems'. The treatment you're supposed to do, the one magic trick that will 'cure' you, keeps changing. Yoga. Breathwork. Mindfulness. No, a different kind of mindfulness. Massage. Positive thinking. No, a different kind of positive thinking. It's exhausting. But more than that, it belittles us. It dismisses us. The people who insist on saying "You'd get better if you just did this one particular type of therapy," see themselves as compassionate, but they are bullies.

Substack

K. Johnstone (@mecfs)

"You'd get better if you just...." is bullying and we don't deserve it. People with ME, Long Covid, and other chronic diseases are bombarded with messages that our illness can be treated 'holistically,' using a 'mind-body' approach. We just need to 'calm our nervous systems'. We need to 'reprogram our nervous systems'. The treatment you're supposed to do, the one magic trick that will 'cure' you, keeps changing. Yoga. Breathwork. Mindfulness. No, a different kind of mindfulness. Massage. Positive thinking. No, a different kind of positive thinking. It's exhausting. But more than that, it belittles us. It dismisses us. The people who insist on saying "You'd get better if you just did this one particular type of therapy," see themselves as compassionate, but they are bullies. The truth is we all try so incredibly hard. We've all tried a million different meditation techniques and supplement protocols. We all do everything we can to 'calm our nervous systems'. If that stuff worked, we'd all be cured. As chronically ill people, every day we endure a reality that most people can't even imagine, and don't want to imagine. "You'd get better if you just..." is their way of refusing to accept our reality. The person speaking is too cowardly to face the enormity of our illness, of what we have to endure in our lives, so they try to make it smaller. They try to make us smaller. "You'd get better if you just...." is aggressive. It's bullying. The person speaking doesn't see themself as a spiteful bully, but that is what they are. Underneath the barely-concealed contempt, is fear. We don't deserve any of it. (As a little post-script, I want to 'confess' that I actually lean really hard into all the mind-body stuff. I do mindfulness exercises several times throughout the day, I do breathwork, I do a tiny bit of very gentle yoga, I do self-massage. Living with chronic illness is a daily struggle and that stuff helps a lot with my emotions. But it hasn't cured any of my chronic illnesses. It infuriates me that the people who tell me to do mindfulness are actually talking about the basic 101 version of mindfulness, when I'm already doing that shit at PhD level.)

Tom Kindlon

@tomkindlon@disabled.social · 2 weeks ago

Short blog post by K. Johnstone:

"'You'd get better if you just....' is bullying and we don't deserve it."

https://substack.com/@mecfs/note/c-203079885

#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
@mecfs
#chronicillness #hiddenillness #invisibleillness #ChronicIllnesses #LongCovid @longcovid #ChronicPain

Substack

K. Johnstone (@mecfs)

phildini boosted

Tom Kindlon

@tomkindlon@disabled.social · 2 weeks ago

Some tips on showering and washing from a sympathetic & knowledgeable occupational therapist who specialises in ME/CFS, Long Covid & other energy-limiting chronic conditions

https://onelifelivedwell.substack.com/p/showers-shouldnt-cost-your-energy

#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
@mecfs
@longcovid #LongCovid #PosturalOrthostaticTachycardiaSyndrome #POTS @pots #OI #OrthostaticIntolerance #Spoonies #Spoonie

Showers Shouldn’t Cost Your Energy

You know, showers are deceptively hard.

Tom Kindlon

@tomkindlon@disabled.social · 2 weeks ago

Some tips on showering and washing from a sympathetic & knowledgeable occupational therapist who specialises in ME/CFS, Long Covid & other energy-limiting chronic conditions

https://onelifelivedwell.substack.com/p/showers-shouldnt-cost-your-energy

#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
@mecfs
@longcovid #LongCovid #PosturalOrthostaticTachycardiaSyndrome #POTS @pots #OI #OrthostaticIntolerance #Spoonies #Spoonie

Showers Shouldn’t Cost Your Energy

You know, showers are deceptively hard.

dch :flantifa: :flan_hacker: boosted

Tom Kindlon

@tomkindlon@disabled.social · 3 weeks ago

"Micro-Recovery: The Art of Resting Before You Crash" by a sympathetic and knowledgeable occupational therapist who specialises in ME/CFS and long Covid who I have been impressed by

https://onelifelivedwell.substack.com/p/micro-recovery-the-art-of-resting

Gives 9 different short ways to relax the body

@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC
#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
@mecfs
#POTS @pots

Micro-Recovery: The Art of Resting Before You Crash

Tiny pauses that protect your system and remind your body it’s safe to rest.

Tom Kindlon

@tomkindlon@disabled.social · 3 weeks ago

"Micro-Recovery: The Art of Resting Before You Crash" by a sympathetic and knowledgeable occupational therapist who specialises in ME/CFS and long Covid who I have been impressed by

https://onelifelivedwell.substack.com/p/micro-recovery-the-art-of-resting

Gives 9 different short ways to relax the body

Micro-Recovery: The Art of Resting Before You Crash

Tiny pauses that protect your system and remind your body it’s safe to rest.

happyborg boosted

JB 🐎 :neuro:

@AnAutieAtUni@beige.party · 3 weeks ago

Finished reading this almost cover to cover - Dr Louise Newson’s book called The Definitive Guide to the Perimenopause and Menopause.

If you or someone who know might be impacted by perimenopause or menopause - in the future or now - read this! Or a book like it.

Perimenopause and menopause is so much more than hot flushes and brain fog. It can disrupt many bodily systems causing both physical and mental health problems and it often isn’t intuitive to consider whether hormones might be involved in those.

This book is relatively inclusive of trans and nonbinary folx, also mentions the common experiences of people with ADHD, early menopause (for various reasons), post natal depression, and many relevant health conditions from PMDD to POI.

Don’t wait until you’re a “certain age”, read up about it all now because the impacts can begin sooner than you might realise.

To fellow autistics: I saw a survey of autistic people a while ago that showed most people really benefit from know about perimenopause and menopause in advance. On the flip side of this, many people end up discovering they are neurodivergent because perimenopause broke their ability to mask and cope. This book (and others like it) can forearm you with enough knowledge to ask a GP for help and early.

For anyone with a pre-existing chronic illness that has an inflammatory component to it like I have, note that perimenopause can mess things up with that too!

@mecfs @autistics
#ADHD #ActuallyAutistic #pwME #MEcfs #perimenopause #menopause

3 media

The image shows the cover of a book titled "The Definitive Guide to the Perimenopause & Menopause" by Dr. Louise Newson. The background is yellow, featuring colorful circular designs. It is labeled as a Sunday Times Bestseller

An open page in the book with a yellow highlighted section under the heading “Spotlight on oestrogen”. The section says “However, it is the effects of ostradiol on your immune cells that is the most important and relevant when it comes to your” …and then continues over the page. See the next image for the full highlighted text.

An open page of the book with large highlighted section. It reads as follows, including the beginning from the previous page in the previous screenshot:
“However, it is the effects of ostradiol on your immune cells that is the most important and relevant when it comes to your health. All your different immune cells have receptors for oestradiol on them and when it stimulates them, these cells can increase in number, be genetically reprogrammed and also change their function.

Research has shown that low ostradiol levels can lead to more inflammation in the body, whereas your immune cells work optimally when oestradiol levels are adequate. More inflammation leads to an increased risk of numerous conditions, including cardiovascular disease, osteoporosis and cancer. Even Alzheimer's disease, osteoporosis and clinical depression are considered to be inflammatory diseases.

When your immune system is not working optimally and there is more inflammation in your body, you age faster and the risk of disease increases. This process is often referred to as 'inflammageing’.
Menopause leads to accelerated inflammageing in your body, due to the low hormone levels that occur. A healthy lifestyle is also important in reducing inflammation.” — An open page of the book with large highlighted section. It reads as follows, including the beginning from the previous page in the previous screenshot: “However, it is the effects of ostradiol on your immune cells that is the most important and relevant when it comes to your health. All your different immune cells have receptors for oestradiol on them and when it stimulates them, these cells can increase in number, be genetically reprogrammed and also change their function. Research has shown that low ostradiol levels can lead to more inflammation in the body, whereas your immune cells work optimally when oestradiol levels are adequate. More inflammation leads to an increased risk of numerous conditions, including cardiovascular disease, osteoporosis and cancer. Even Alzheimer's disease, osteoporosis and clinical depression are considered to be inflammatory diseases. When your immune system is not working optimally and there is more inflammation in your body, you age faster and the risk of disease increases. This process is often referred to as 'inflammageing’. Menopause leads to accelerated inflammageing in your body, due to the low hormone levels that occur. A healthy lifestyle is also important in reducing inflammation.”

JB 🐎 :neuro:

@AnAutieAtUni@beige.party · 3 weeks ago

Finished reading this almost cover to cover - Dr Louise Newson’s book called The Definitive Guide to the Perimenopause and Menopause.

If you or someone who know might be impacted by perimenopause or menopause - in the future or now - read this! Or a book like it.

Don’t wait until you’re a “certain age”, read up about it all now because the impacts can begin sooner than you might realise.

For anyone with a pre-existing chronic illness that has an inflammatory component to it like I have, note that perimenopause can mess things up with that too!

@mecfs @autistics
#ADHD #ActuallyAutistic #pwME #MEcfs #perimenopause #menopause