The Concept of ME/CFS

Bleurrgh certainly describes the feeling well

 

I'm going with @SNT Gatchaman's term.

Disablingly severe and persistent over months shitfuckery...

 

I'm chiming in with another anecdote, from the early hours of this morning actually. I'm currently in prolonged PEM, worsened by the addition of activity in the last 2 weeks surrounding my discrimination complaint.

My carer cooked me a chicken casserole and pureed squash yesterday of which I eat a small portion yesterday lunchtime around 1 p.m. I felt oK afterwards but could not eat anything else for the rest of the day as I felt really full. I was awoken during during the early hours this morning around 3 a.m. with an urgent need to be sick. I won't go into the gory details but suffice to say for the next hour I unloaded the entire content of that digested meal. It was accompanied by profuse sweating (I looked like I had just come out of the shower, no exaggeration) and collapsed on the bathroom floor, completely unable to move. There I remained until a little before 10 am this morning, when I was able to crawl to the living room. Today I'm light and sound sensitive. The house is silent and there is a table lamp on that's all. Cognitively, I'm slow processing information but made two posts today.

Now, imagine I'm in hospital instead and the drs are exposing me to light and sound while trying to force food down me. Then imagine, that I've been sectioned on the grounds of malnutrition. When I complain through slurred speech (yes that's present today as well), and utter physical exhaustion that I cannot tolerate it; am I mentally incompetent in terms of making a decision?

This is a fluctuating illness akin to several others. You can only 'manage' a fluctuating illness by responding to its fluctuating nature. The fluctuation itself is not as a result of poor management.

 

Just to be a pedant, but "ME/CFS" is merely an abbreviation, not an acronym as it does not form a word. See "acronym."

 

I have been wondering for some time if we put too much emphasis on exertion in whatever is happening in this thing we call "post-exertional malaise." The big problem is that it usually requires us to look back and name the "exertion" that caused the crash---a dubious prospect ripe for misleading. And the worst crashes I've had over the years have had no exertional stimulus that I can ascertain.

 

Well meckfuss might be a bit more genteel than SNT's word and it could be Spoonerised.

 

How do we tease out whether it's just one group or multiple groups?

 

Just another in a never-ending series of questions/pleas on Reddit's r/covidlonghaulers. (I've probably used my quota of swear words in this thread, so I'll edit them out of this person's comment!). But it's illustrative of the concept in summary form.

 

Genetic markers would be very helpful, or any other biological measure that we could interpret as part of a process. The two age peaks for women might pan out as different. Any clues that we can make sense of in process terms.

 

So I suppose the answer is we're all in one big group based on symptoms until those biological measures are found?

 

The wired-but-tired PEM phenomenon might be amenable to investigation. Specially as it's visible on heart rate alone for some of us.

It starts on the day I've done the activity that's tipped me over the edge, or the day after that. It begins with feeling very sleepy, so I go to bed and lie down. As soon as I'm horizontal my heart rate shoots up as if I'm poised to start a race. Breathing rate goes up with it. After several minutes it all starts to subside, then after a while the whole thing starts up again. And again. I usually give up about 4am and get up.

Whether it actually means anything, or explains anything, is another question I guess!

 

For many clinicians Lyme Disease as a diagnosis is undermined - even undone - by the Lyme Disease concept. The latter is much broader and unwieldy and contemptuous of conventional medical doctrine.

As for any clues we can make sense of in process terms, I'd only caution against reducing things to perception - as in our symptoms boil down to errors in perception - including and especially as we mine for biologics.

 

To throw in fatiguability, there is a specific 'judder/three tugs' that eg my legs sometimes do when they are 'done' - it was particularly obvious when I once went to the gym and a personal trainer was stretching them out further into the session, and it freaked her out but I just calmly said 'yeah that's me/cfs'

In my arms with fatiguability I just become unable to lift them straight after doign something I shouldn't have and can't lift a drink to my mouth as my arm shakes and then just can't get there. They are so exhausted I have to put pillows under them to support then about 3-4hrs later they slowly become usable.

And after these, but also just days and times when I've probably been doing more but in that mindset where I'm not noticing, then I will get visible muscle 'twitches'. These aren't predictable to certain muscles but might be on the back of one arm or one of my thighs and I can sit there and watch like it's a little alien.

It doesn't quite happen regularly enough that I've assumed it is 'something else', and isn't a deficiency thing as it definitely seems to relate to exhaustion and usage of muscles.

A total random one (but closer to the 'normal person' analogy as it is twitching eye) I once had an eyebrow stuck raised for 2 weeks, but it felt to me like the eyelid itself wouldn't stop twitching, not that you could see that in the mirror. I was utterly exhausted at that point from general environment and commitments. But recent eye tests have shown that my eye muscles get tired quickly and at different rates etc. leading to unfortunate symptoms when tired.

Of course the other main thing with my muscles is exactly the same ache as I'd have got if I'd done extreme exercise when I was well, but even deeper and more than I could have achieved then, just after doing something really small. Like these days having my legs down for an hour, in the past driving for 45mins. It sounds ridiculous but it stops you walking and standing-balance easily sometimes (I think I also tend to have accomanpying stiff ankles and sore around feet, but you can only identify easily the thing hurting most) because not the pain but they can't stretch etc.

 

I almost included that in my list, as it's been a severe problem earlier, but not since I've regularly taken N-acetyl cysteine. It would be highly desirable to get some good research behind that.

 

Im interested in this, wired but tired is a massive issue for me, would like to look into that... have you written about it elsewhere on the forum/do you know of a reliable source of info for exploring it

 

I know that I have mentioned it before. As I recall, one of the researchers into ME/CFS, whose name I can't remember at the moment, found that this helped, and I take it in the dose he tested. Given my current inability to remember the details, I'd caution you to approach carefully. My GP knows I take this and hasn't warned me against it. But if you search for n-acetyl cysteine or "tired but wired" mentioned by me, you should be able to find the researcher's name.

EDITED to add more profitable search term.

 

I can relate. I used to when I was moderate and still working have office days and work from home and could sit in my bed or on the sofa sideways and that was so much better for thinking. And just generally feeling better.

However, I basically eventually slowly dismantled what the sofa looked like from a sitting as a normal person point of view because of exactly this. First came a strange set up so that I could have my back and neck supported (basically stuffing an extra cushion in the side by the arm so I could prop another large cushion in and then use lots of other pillows to change the angle and support head). Then I removed the back cushions one by one, first the nearest because I didn't have full range with my arm so that affected arm pain then posture a bit. And then the next cushion because, well why not when I've got one removed anyway and it means my feet have more freedom. And so the additions continued one by one! Luckily it wasn't like I had much energy for socialising and it worked for TV watching etc too.

My best tip is having a pillow under my arms and the front of the lap top so it almost sits under my armpits on my chest and means my elbows and forearms etc are supported.

But yes, nothing is ideal and it all comes with backfires after a while.

 

I don't quite follow that example. All diagnoses are concepts. In a sense the paper is trying to point out that if ME or CFS are taken as 'diagnoses' without realising that they inevitably. entail concepts (to mean anything) and that the concepts vary widely between users, then we end up with confusion.

We now have 'ME/CFS' educational material being written for health professionals that is full of random bits of concept cobbled together from various sources and therefore highly misleading.

 

thanks @Louie41