Pacing - definitions and sources of information

[MEMarge]

Hi @Hutan, great work.

My only comment on initial read thro was that PEM is often stated as starting within 12 - 48 hours, rather than 24. My daughter can feel dreadful in the morning after an active few hours the afternoon/evening before. Only a minor point and may not be representative.

Trish is v good at this.

 

[Hutan]

Thanks @MEMarge. I think you are right, I can do some activity in the morning and feel dreadful in the evening. It's hard to know how the accumulation of exertion affects things. But extending the range down to 12 hours sounds good.

 

[RoseE]

Just wondering about this statement

If you can’t find a relationship between activity and symptoms, you may not have ME/CFS.

Do we believe that to be true, if people are suffering PEM, but can't identify the trigger which may be cumulative, or days ago, or... ?

 

[Invisible Woman]

Haven't read through your updated document yet but -

My only comment on initial read thro was that PEM is often stated as starting within 12 - 48 hours, rather than 24

But extending the range down to 12 hours sounds good.

I would also suggest extending that window the other way - for me PEM can take up to 72 hours (3 days) to appear. If I haven't suffered ill effects by then I've gotten away with it.

 

[adambeyoncelowe]

Haven't read through your updated document yet but -





I would also suggest extending that window the other way - for me PEM can take up to 72 hours (3 days) to appear. If I haven't suffered ill effects by then I've gotten away with it.

I would probably say 'usually from 12 to 72 hours' and leave it at that. Sometimes it's sooner or later.

 

[obeat]

Regarding the " reduced CBT" paper, is it useful to consider " time upright" as an activity guide?

 

[Ravn]

Just wondering about this statement

If you can’t find a relationship between activity and symptoms, you may not have ME/CFS.

Do we believe that to be true, if people are suffering PEM, but can't identify the trigger which may be cumulative, or days ago, or... ?

There doesn't seem to be any contradiction here but it's a tricky one to formulate clearly. I think what @Hutan meant was this:

If there really is no relationship between exertion and symptom exacerbation you don't have ME as per diagnostic criteria that require PEM to be present by definition. In which case pursuing alternative explanations for your symptoms is sensible.

And I think @RoseE is concerned about this:

Due to delayed PEM onset, "permanent" or "rolling" PEM, and all sorts of other confounding factors sometimes you can't see the relationship between exertion and symptom exacerbation - even though it exists. In which case you shouldn't exclude the possibility of ME.

Now, how to put that into a short, unambiguous sentence........

 

[Hutan]

I've finally got around to finishing up the Activity Management document. It's 3 pages and targeted at the newly diagnosed. It's aiming to be a start point - there are ideas and terms there (like orthostatic intolerance) that people will need more information on. Thanks to all those who helped with it.

You are very welcome to make whatever use of it you wish. A pdf version is attached here. If you would like a copy of the word document, send me a message.

 

[Trish]

Excellent Hutan, thank you.

I suggest this be linked in the forum library.

 

[Andy]

New:
3-page Activity Management document.

Designed particularly with the newly diagnosed in mind, it contains lots of tips and ideas which people with ME/CFS have found useful
https://www.dropbox.com/…/Activity%20management%203%20March…
or
https://www.mediafire.com/…/Activity_management_3_Marc…/file

Science for ME member Hutan posted the activity management document here https://www.s4me.info/…/pacing-definitions-and-sour…/page-5… saying "You are very welcome to make whatever use of it you wish."

#ChronicFatigueSyndrome #PwME #MyE
#MEcfs #CFS #MyalgicE #MyalgicEncephalomyelitis

https://www.facebook.com/TomKindlonMECFS/posts/1580949615386491

https://twitter.com/TomKindlon/status/1236755953749499904

 

[Hutan]

Thanks @Andy, @Trish and @Tom Kindlon.

 

[Andy]

Thanks @Andy, @Trish and @Tom Kindlon.

Just to point out, non-members won't be able to access the document. We would need to get @Adrian to upload it to the server itself, as he did with the PACE Briefing document, and then post the link to the document here.

 

[Forestvon]

Very good @Hutan.
Another point I would make about using pedometers is that they don't measure one of the worst things you can possibly do, as I have found, is standing still - my downfall.
sorry hadnt read it all before.

 

[Tom Kindlon]

https://www.facebook.com/TomKindlonMECFS/posts/1580949615386491

https://twitter.com/TomKindlon/status/1236755953749499904

In case anyone is curious, I shared a Dropbox link and then in case that didn't work, also a MediaFire link. I can't see statistics for the former, but the latter has had 219 downloads already.

 

[Medfeb]

Hi @Hutan and all who worked on this... I just found this. Very nice summary. Thank you for putting it together.

Sorry to be so late with a suggestion but I think it might be help if the document contained information on who authored it - e.g. a committee of S4ME members, maybe something about them being long term patients, etc. - Whatever you think is appropriate but it would let the reader know the experience and hard-earned wisdom underlying the suggestions

 

[MSEsperanza]

This Twitter thread on the coping efforts of some people with Long Covid reminded me of how it felt when I had 'mild' ME/CFS:

https://twitter.com/PutrinoLab/status/1457410901439565825

(Not sure if posted in an apt thread.)

(Edited to not give the impression I thought Long Covid is like mild ME -- the illnesses with either label seem to have a wide range of severity.)