Fred Rossi - Writings related to ME/CFS

[MrMagoo]

I remember an absolute incident once after some people had “unconscious bias” training. Basically they were confronted with the world-altering news that because everyone has some kind of unconscious bias, they did. They were so angry at being accused of something so awful. I mean furious. Saying they were condemned as a racist on no evidence.


I’ve seen similar when it’s suggested that someone was being unkind and bullying in an approach. Absolute personality collapse, wailing and gnashing that they couldn’t be a bully, they had their school years ruined by a bully and the idea they themselves could have upset another person in such a way which they had found so painful…no


People are weird.

 

[Trish]

Lack of understanding and even recognition of long term disabling illness is everywhere. I signed up years ago to fill in YouGov polls about once a month. I have just done one where every question was designed to find out my preferences for spending and activities. Not one provided any option of 'I can't do this because of disability, poverty or caring responsibilities'. My answers made it seem like I stay home doing very little from choice.
For once I actually told them in the feedback. Usually I don't bother. It's like our lives are not worth recording.
No I'm not noddy no mates from choice. No I don't avoid travel on trains or planes or anything else from choice. No I don't avoid cinemas, outings with friends, going on holiday from choice. There was no real option for me to select that reflects my reality.

We are written out of existence.

 

[Sly Saint]

As I have found out time and again....... mentioning you have a chronic illness is a complete conversation killer, usually getting an awkward but invariably final response of something like "Take care and wishing you as well as possible with your condition."

 

[rvallee]

People are weird.

That's my anthem!

 

[rvallee]

Lack of understanding and even recognition of long term disabling illness is everywhere. I signed up years ago to fill in YouGov polls about once a month. I have just done one where every question was designed to find out my preferences for spending and activities. Not one provided any option of 'I can't do this because of disability, poverty or caring responsibilities'. My answers made it seem like I stay home doing very little from choice.
For once I actually told them in the feedback. Usually I don't bother. It's like our lives are not worth recording.
No I'm not noddy no mates from choice. No I don't avoid travel on trains or planes or anything else from choice. No I don't avoid cinemas, outings with friends, going on holiday from choice. There was no real option for me to select that reflects my reality.

We are written out of existence.

I don't often fill questionnaires like this but even on some government questionnaires I often notice how there are no options for being disabled, even to questions such as employment status. They'll have students, retired, and so on, but no option for being out of the workforce for health reasons.

Coming from random shops or marketing, whatever, but from governments? Really?!

We are absolutely written out of existence, especially by the experts on this very issue.

 

[SNT Gatchaman]

Another blog post by Fred Rossi, following on from Why I Can’t Just Meet You for Dinner: The Reality of Post-Exertional Malaise

The Small Life

Calculating Worth with Diminished Returns

substack.com

This isn’t a redemption narrative where chronic illness becomes a blessing in disguise. It’s not. It’s still limiting, frustrating, and profoundly unfair. But within severe constraints, something unexpected happens. You stop optimizing for breadth and start optimizing for depth. You stop trying to do everything and start asking what actually matters.

Healthy people optimize their lives through addition: more experiences, more connections, more accomplishments. I’m optimizing through subtraction. And the clarity that comes from extreme constraint is something I never expected to value.

Healthy people measure meaningful lives in big metrics: career advancement, travel destinations, social circles, major accomplishments. That scale doesn’t work when leaving the house costs three days of function.

The healthy world measures output. I measure energy preserved, crashes avoided, moments of genuine presence in my own constrained life.

That recalibration was brutal at first. It felt like admitting defeat, accepting diminishment, giving up on ambition. But once I stopped fighting it and started actually building at the scale I have access to, something shifted.

I’ve discovered that rest isn’t the enemy of living. Before illness, rest felt like wasted time, something to minimize so I could maximize productivity. Now rest is how I preserve any capacity to participate in life at all. That perspective shift changed everything. Rest isn’t failure. It’s how I survive.

I’ve discovered that animals understand suffering in ways that bypass language entirely. Geno and Genie don’t need to comprehend post-exertional malaise or dysautonomia to know when I’m struggling. They just know. And they respond with the kind of uncomplicated compassion that doesn’t require explanation or justification.

I’m not going to tell you that chronic illness is a gift or that limitation leads to enlightenment or any of that inspirational rhetoric that makes disabled people want to scream.

But I will tell you this: hope at limited capacity looks different than hope at full capacity, but it still exists.

The small life isn’t what I wanted. But I’m learning to live it with purpose anyway. To find meaning at reduced scale. To celebrate victories that healthy people would consider baseline functioning. To build something worthwhile even when the materials are scarce and the timeline is uncertain.

This is what perseverance looks like with chronic illness: not pushing through limitation but building within it. Not denying constraint but working with radical intention inside the boundaries that exist.

The life is smaller. The intention is larger. And somehow, that’s enough.

Not every day. Not without grief for what’s lost. But enough to keep building, one careful choice at a time.

 

[rvallee]

Very well written, and more insight in this one text than everything I have seen out of biopsychosocial anything, combined. Not that it's a high bar to cross, but still.

 

[Varda]

”Rest isn’t failure. It is how I survive.”


It took me a very long time and a lot of suffering and pushing through PEM to understand this.

 

[Binkie4]

So calming to read of the coming to terms with positives of a PEM bound life.

I kept finding words and comments I could relate to. I am glad I read it because while the losses are acknowledged, so is the benefit of having to make choices and what it teaches. I could relate to that.

I'm not finding it easy to write at all at the moment so I decided that what came reasonably freely would have to do. Thank you @SNTGatchaman for distilling important points.

 

[Amw66]

Another post

Those Who Were Already Here

Learning to Live Inside a History I Did Not Choose

open.substack.com

So calming to read of the coming to terms with positives of a PEM bound life.

I kept finding words and comments I could relate to. I am glad I read it because while the losses are acknowledged, so is the benefit of having to make choices and what it teaches. I could relate to that.

I'm not finding it easy to write at all at the moment so I decided that what came reasonably freely would have to do. Thank you @SNTGatchaman for distilling important points.

 

[ahimsa]

[Oops, I did not notice that @Amw66 had already posted a link to this! But I'm leaving this here since I included more quotes]

Center Left by Fred Rossi:

Those Who Were Already Here: Learning to Live Inside a History I Did Not Choose

A few quotes:

Long COVID arrived wrapped in uncertainty. Doctors hesitated. Research lagged. Language failed. Each symptom seemed to require explanation from scratch. I thought I was living at the edge of something unprecedented.

The people who live with ME/CFS did not greet Long COVID with surprise. They greeted it with recognition.

That recognition was both comforting and devastating.

Comforting, because it meant I was not alone. Devastating, because it meant this life had existed, largely unseen, for decades. What I thought was the beginning of a story was, for many, the middle.

They had already learned how this illness behaves because their bodies had forced them to learn. They had already paid the price of experimentation. They had already discovered, often the hard way, which mistakes could not be undone.

The ME/CFS community has done real work. Patient-led research. Shared strategies. Careful documentation of symptoms and patterns. Support systems built in forums, emails, and private messages. This work has protected people from making themselves worse. It has given structure to lives that otherwise might have dissolved into trial and error.

There is happiness in that. Not happiness as cure, but happiness as competence. The relief of knowing how to get through a day without triggering collapse. The quiet satisfaction of being understood without explanation. The peace of being believed.

These moments are not small. They are survival.

 

[Sean]

Good article. Thank you, Fred Rossi.

 

[Trish]

It is a good article, so why do I read it with trepidation?

Perhaps because it has echoes for me of other series of articles that gather a following and create a prominent position for the individual as a spokesperson for pwME.

Then the person happens to recover naturally while trying treatment x, y or z, and suddenly they are all over the media with a different story. I won't elaborate, you know what I am referring to and I don't want to divert this thread further by detailing examples.

I know it's unfair of me to load other people's actions on Rossi who is writing honest and helpful articles. I wish him well and hope his articles will help others.

 

[NelliePledge]

I read/skimmed - i really appreciate the thought behind this and I like his writing style

Added: I noticed he mentioned how rewatching old films/tv is much easier cognitively & that’s something I definitely relate to.

Reading something like this for newly diagnosed people would be far more beneficial than hearing from BACME “specialists”.