Postexertional Malaise Syndrome?

Creekside said:
No, that's a terrible name for this disease, because it's possible to have the other symptoms without having PEM. PEM is one symptom, not the core dysfunction.
Click to expand...

A name isn't meant to be a complete description and cannot be one. "syndrome" means "a group of symptoms which consistently occur together". A reader familiar with the meaning of syndrome therefore knows that in PEMS there are other symptoms that typically occur with postexertional malaise.
 
I echo others' thoughts expressed also on other threads on why the name of the disease is not the primary issue that needs to be addressed at the present stage.

(As usual, it took me some time to write this post so apologies if parts are redundant by now. Also, as I read mostly on the forum without being logged-in so I'm not tempted to comment too often, I include here a collective :thumbsup: for the discussion here and on other threads. )

In my experience, health care professionals tended to get more interested and to listen more, when I referred to the uncertainties regarding ME/CFS but also described the clear pattern of PEM I experience and mentioned the treatments I tried to no avail.

These treatments that I tried to no avail however included psychotherapy, a variety of antidepressants, and exercise. Also, what perhaps helped being not perceived as the typical 'psychosomatic' patient was that I seem to be more lucky than many other pwME with respect to being able to do some gentle exercise 2-3 times a week.

After PEM-triggered crashes I actually often could get back to my pre-crash level of fitness to a certain degree by resuming some very gentle exercise, including short walks or short, light cycling, but I never got over the point that I could do more than 30 minutes of light exercise without needing to lie down immediately afterwards, plus, if I did more on the same day, delayed PEM with flue-like sickness. (So still very far way from my pre-illness level of fitness.)

So I think even the best term for our illness still needs additional explaining, simply because how the illness presents itself doesn't fit in any current conception of disease.

It might be impossible to convey the utter disproportion and diversity of reactions to activity pwME experience, and also the range of severity, in any term.

With regard to 'fatigue' as belittling the illness: It could be helpful that fatigue in other chronic illness is taken more seriously by now. When large MS or cancer charities state that many patients experience fatigue as the most debilitating of their symptoms, then this kind of fatigue can't be harmless.

I think 'ME/CFS' is the best term we have for now. I conveys the uncertainty about the illness well and the combination does not allow to conceive what we suffer from as just being tired all the time (even if being extremely tired all the time can be pretty debilitating, too).

The only alternative name I could think of at this stage is -- '/Disease' (SlashD). ;)
 
Last edited:
I'm not sure it's worth putting a lot of effort into renaming a condition that we still can't explain, because it's fairly likely that whatever is chosen will, in at least some respects, be as inaccurate as ME.

Also, it feels as if there's something important in successfully "detoxifying" ME as a diagnosis. It isn't our fault that it became toxic, but if we succeed in rehabilitating it (and I think we will), it will be our victory. I'm not sure we should loosen that link to our history by seeking to change it now; it might not be be medically accurate, but in terms of our struggle for recognition and justice, it's our flag and I don't see why we can't be proud to raise it.
 
Back in November/December 2020 the draft NICE guideline consultation got a response from NHSE&I written by Prof Tim Kendall, a consultant psychiatrist, Director of the National Collaborating Centre for Mental Health (NCCMH), and the National Clinical Director for Mental Heath at NHSE&I. The letter was sent separately and also included in the NHSE&I submission to the consultation.

The was obtained under FOI, and has been linked from Dom Salisbury's blog here:
https://domsalisbury.github.io/mecfs/nice-mecfs-guideline-pause/

As part of clearly demonstrating complete ignorance about ME/CFS, Kendall says that the guideline appears to have created an entirely new entity that is not ME/CFS but PESE (post exertion symptom exacerbation, later changed by NICE to PEM).

In other words, one of the arguments against the NICE guideline by psychiatrists is that ME/CFS has been redefined by NICE as a different condition invented by the guideline committee that requires PEM (yes, they are that out of touch with reality).

On that ground alone, I think hurrah, you got it, ME/CFS is defined by primarily by PEM. So if we are going to single out one symptom as the name that distinuishes ME/CFS from other diseases and syndromes, let's pick PEM. Instead of CFS, how about CPEMS. The best version of that we have that is already on the table is SEID.

Having said all that, my preference is that we don't waste time and energy on advocacy over the name. There are more important avenues for our limited energy to be directed, primarily research funding and refuting BPS nonsense.
 
Ariel said:
What about just naming it after a patient? The trend is not to use names anymore but why not name after patients? (Has this been done?)
Click to expand...
My ME brain kicked in and read this as: "What about just naming it after a planet?" :whistle:

And in that case my recommendation would be Pluto with all the controversy around it. (Is it a planet, is it not a planet?) :alien:
 
I think there should be separate labels for those who's condition gets worse with exercise/exertion, those who's condition stays the same, and those who's condition improves with exercise. At the moment everybody gets the same label and it causes a lot of suffering.
 
Trish said:
Having said all that, my preference is that we don't waste time and energy on advocacy over the name. There are more important avenues for our limited energy to be directed, primarily research funding and refuting BPS nonsense.
Click to expand...
indeed

Wyva said:
And in that case my recommendation would be Pluto with all the controversy around it. (Is it a planet, is it not a planet?) :alien:
Click to expand...
lol good one. although it feels pretty Uranus to me :D
 
You must log in or register to reply here.
Back
Top Bottom