Validation of the Severity of ME/CFS by Other Measures than History: Activity Bracelet, CPET, SF-36. van Campen et al, 2020

I wouldn't read too much into the stepcounts. They can be wildly inaccurate.

It's the CPETs that makes me think they didn't have severe patients, though.

 

Good that they are publishing the data they have, other ME/CFS clinicians should try to do the same.

These were the cut-off values their data suggested between mild, moderate and severe ME

 

I do think it is possible that mild patients averaged around 8000 steps a day. I do that most days. Concentrating and cognitive tasks, noise and movement are what really wipe me out. My steps are done over a whole day - I’m doing things, resting for a bit, doing a bit more, resting etc all day. I had to give up my career.... and there’s lots of stuff I cant do now. Also, my activity tends to be at a level that doesn’t get me out of breath or raise my heart rate too much. I know I’m lucky compared to most people, but it has still changed my life considerably.

 

It all depends on what we mean by severe. Being unable to work is considered "severe" for most illnesses, but "moderate" in ME and CFS.

What we think of as "severe" - bedbound patients, would indeed not be doing maximal CPETs!!!

 

According to this I would be within the ‘moderate’ group under the SF-36 - which I think is correct

BUT steps, no way.

I ‘only’ have two step counters on my phone, both of which vary widely and obviously only count if my phone is in my back pocket, however, I know that 1500-1800 would be a huge day for me. My normal is 800-1000 from home pottering/going round the block with HappyHound.

I can, and do, do more if
on holiday,
memory making
emergency situations
but these will always cause symptoms to flare up.

 

That’s a tricky one. I class myself as mild to moderate even though I’m crawling on my hands and knees one meter to the toilet over the period of an hour. Lying paralysed in bed all day with a vegetative brain. It’s not minimising it per se, that's my reality and this is me being mild to moderate compared to my severe; this is nowhere near my severe right now.

on ME scales I’m generally severe.

by normal person scales, I’m often way beyond their view of severe. Sometimes I’m honest and tell them, other times I play it down; after I’ve judged how dangerous they are to me and if they are a threat to my life.

Like you said, it’s beyond their comprehension that people can suffer this way and not have medical intervention, actually ‘live’ their lives in this constant state.

I was recently talking to an ex military guy who is also a medic. Potential friend. Who wanted my address so that when I’m bedridden they could call the ambulance etc. Just because I was too ill to reply to a text for a few days.

i told him based on that comment he would never get my address because the LAST thing I need to be worried about when paralysed and surviving in bed is complete strangers breaking down my door and carting me off to hospital.

I could see by the look on his face that he now views me as potentially crazy as well lol.

I don’t care. I’m only still alive because of handling this situation myself and keeping myself alive.

So I think a lot of the time if I do play my illness down to normals it’s for my own protection from their interference and what I deem a necessity to my survival.

it’s a lose lose, in many cases; play it down and they never understand and potentially harm us as a result or be totally honest, show them the severity and have them harm us as a result.

 

This

 

Here is part of the abstract from the Rekeland (Fluge) cyclo study

https://www.s4me.info/threads/intra...-study-2020-rekeland-mella-fluge-et-al.14925/

Results: The overall response rate by Fatigue score was 55.0% (22 of 40 patients). Fatigue score and other outcome variables showed significant improvements compared to baseline. The SF-36 Physical Function score increased from mean 33.0 at baseline to 51.5 at 18 months (all patients), and from mean 35.0 to 69.5 among responders. Mean steps per 24 h increased from mean 3,199 at baseline to 4,347 at 18 months (all patients), and from 3,622 to 5,589 among responders.

By the paper discussed in this thread, the mean baseline 33/35 SF score would put these patients at borderline severe. The baseline ~3500 steps would be classified as borderline severe here. But Rekeland et al. only classified 6 patients as severe and 7 as moderate/severe of the total 40 patients. Doesn't seem like much concordance between these two studies with respect to classification.

 

Yes, it is something we have to remember, that there are many symptoms of ME and PEM doesn't just come from too much walking. It is another thing which differentiates us from the post exertional fatigue in other illnesses. The "exertion" we feel is often things that other people do not think of as exertion at all.

In my days of moderate illness I found walking for 20 minutes much easier than standing at a bus stop then trying to pay for a ticket. When a distance was too far to walk I often got the first bus to arrive, even if there was a walk at the end, to avoid standing.

What defeated me was those times when my husband and I would sit in companionable silence reading. He liked to read out snippets but that meant I had to break my concentration, listen and respond. After a few times of that I would collapse. It took ages to work out what was happening.

It works against us because doctors see us walking fine then we say we get exhausted - obviously exaggerating.

 

Absolutely! I’m hopeless now at switching my attention - I find it very difficult to do, and it wipes me out. I can only deal with one input source at a time. And having to process rapid speech - just can’t do it.