Do the poll! Are the NIH/CDC going to use the right definition of PEM in all their future research? Deadline 24 January

Looks like it's been posted I shall upvote.

 

Great! Thanks to whoever did that. Is there a link?

 

clicking the thread title takes you to the poll.

 

Thanks for Reddit share!

We are now t 360 responses. 500 would be really good. Please keep promoting the survey - the more patients that reply, the more representative the survey will be, and the more impact it will have in the NIH/CDC consultation.

https://twitter.com/user/status/954390998360186880


https://www.facebook.com/topmecfsre...wsZOsXEGHPA0GgIJ2Kg48wzgDpzPfQvhM8GbA&fref=nf

Thanks!

 

Done

 

Done (finally!)

 

Done.
It doesn't take much time and no registration is needed

 

I really do wish that the term "Post-exertional Malaise" had not become the accepted language.

Just like "CFS", it's not emotive enough and IMO, doesn't properly reflect what patients experience.

Much better to use the term "Post-exertional Flare" (PEF) or "Post-extertional Symptom Flare" (PESF)

Perhaps there is a need for both terms (PEM and PESF) to be used - with the DePaul questionnaire being used to define the fatigue-focussed PEM and the IoM definition being used to diagnose the more immunologically severe PESF

 

Done.

And I wish a description of PEM could better reflect that the patient often is already having symptoms, and that PEM is an additional flare-up/package of symptoms on top of that.
I worry some might misunderstand and think most patients are otherwise feeling rather ok.

 

Posted on Solve's Facebook page, asking if they would share it.

 

Done.

 

@Paul Watton, do you mean separated into two patient groups, one with fatigue focused PEM and one with severe PESF, or that both types of PEM can occur in a patient? Many thanks.

 

They describe two symptom complexes, the one being more straightforward than the other.
Logically, a patient could be diagnosed with both if they conform to both sets of criteria, but I suspect that PESF only occurs in more severe / advanced cases of the illness.

So, what I'm saying is that PESF is an immunologically more complex evolution of PEM and is only found in the more severe and longer duration patients.

 

There was also discussed at one point (in ICC maybe?) Post Exertional Neurological Exacerbation which covers it pretty well.

 

690 now, nice work! Thanks to everyone who has prmoted this

https://twitter.com/user/status/955404512273027072

 

Done

I may have missed what this survey is doing.

I don't know what to best call it, post exertion exhaustion, post exertion fried like a chicken?

That is a very good point, i have sometimes had trouble explaining this. Hope you added this to the comments.

 

Very nice, I once called it electrocuted and left for dead

 

My Comments:
There is so much variation in the way people are afflicted by ME/CFS. So it is difficult to create a definition that fits everyone. Too few criteria will exclude people from a diagnosis. Having too many criteria will make the definition too broad, increasing the possibility of misdiagnosis.

 

It is difficult, but having data on how patients view different proposed descriptions will help find the most appropriate solution.