From academic success to cognitive disability

From the responses here, it doesn't seem too uncommon @Hubris.

I was a Ph.D candidate too, going well until I just couldn't put in the energy needed. I suspended intending to go back after a year's absence but that hadn't corrected the energy lack so that was that. It's a long story that I don't have the energy to write.

It is humiliating. I had a phone Consult earlier this week with a respiratory Physician who started telling me the results of a CT from last year. I had no recollection of it and worse, insisted I hadn't had one. So embarrassing. I don't actually know my own limits now.

 

This might be one of the most important threads on S4ME.

 

Thank you all for your anecdotes. It might be that cognitively impaired patients have little voice as the cognitively intact ones run the show. It seems that even in other illnesses this is the case to an extent. Perhaps we could find a way to come together and push for a change.

I think that advocacy organizations have a severe blind spot on this. In my view, saying that patients can't go for a walk (and this is the most severe cases) or can't work does not get the point across. For the reason being that people associate these activities with physical energy, not mental. When (most) people think of work, they think about waking up early in the morning to go somewhere, or doing repetitive mental tasks at the PC. It's rarely taught of as academic or intellectual work.

Let me further illustrate my point; let's say that your arms feel weak, fatigued. You wouldn't be able to swing a hammer, but you'd still be able to play the piano - maybe not for very long sessions but you'd still be able to play it. The idea everyone has about this disease is that you can adapt to it, that nothing of value is truly lost in a sense. So if your job involved swinging a hammer then you'll have to reinvent yourself in other ways, whereas if you were a talented pianist, you'd still be able to exhibit your talent, just with some accommodations (taking long breaks, resting, etc). Whereas if you had a real disease, one that was destroying your muscles or joints (like RA), if left untreated pretty soon you wouldn't be able to play the piano at all anymore and your talent would go to waste. I know it is not a perfect example but i'm doing my best to get my point across. The idea is that if you truly had talent, unless such talent involved being some sort of competitive athlete, you would be able to manifest it like Stephen Hawking did. I have seen a bunch of ME (and of course a myriad of non-ME) doctors and they all had this opinion, without exception - that's if they thought i was ill to begin with.

This is just my opinion but it needed to be made clear that for a certain subset of patients (which, judging from the looks of things, might not be as small as i thought) the illness nullifies any and all talent that you may have and there is absolutely no way to work around it - and you don't have to be bedbound for that to be true. Other illnesses like MS have subtypes based on how the illness presents itself, i don't see why this couldn't be done for ME. Lumping all patients together has not been a smart move. If the NIH started studying this subgroup, and they found something, it would likely result in treatment for the other patients as well and everybody would be legitimized.

I too have slow wave activity in the EEG, and actually also have some epileptiform activity, though i do not have any seizure symptoms. I have seen a few patients with slow wave abnormalities and with quantitative analysis (such as LORETA) there could be way to analyze these results to figure out the source of the slow waves (since they are only being measured in the surface of the brain), otherwise they are very non specific. I wanted to do this (among many other desperate research projects) but was forced to abandon everything as i worsened. The neurological side of things has been grossly neglected in ME and i even suspect that by combining a few techniques (like qEEG, MR spectroscopy, custom fMRI, cognitive testing, etc) there could be a way to objectively diagnose these severe cognitively impaired ME patients with high accuracy. The fact that neurologists refuse to acknowledge this cognitive aspect is preposterous.

 

which subset are you suggesting, though? The cognitive dysfunction "subset" can be as wide as can be- for some it is sensory- can't handle light, sound, touch. Some have trouble talking, some crash when talking too much. Some crash when they attempt multi-tasking.

Then there is the complication of overlaps between subsets. Similar to previously researched ME + IBS and ME without IBS. We haven't really gotten clear conclusions from splitting these 2 groups. You still end up with ME.

The work of Gudrun Lange https://scholar.google.ca/scholar?hl=en&as_sdt=0,5&q=Gudrun+Lange+chronic+fatigue+syndrome+&btnG= has established such cognitive deficits. These days, the research focus is much more on the root cause of ME but it does not mean the cognitive issues are being neglected. See, if the work on mitochondrial dysfunction is confirmed (and I believe it has), the whole body is affected by such dysfunction. We do know that the brain relies on a good supply of oxygen and glucose in order to function normally, so if the glucose metabolism and fatty acid metabolism is impaired, the brain is impaired too.

 

One of the things that taught me (the hard way) that cognitive stuff was a huge problem was the high cost of basic social interaction, of any kind, even just light chit-chat. Wipes me out as much as physical stuff.

 

@Hubris I wonder what your level of ME is because the physical PEM I was getting at very severe and higher end of severe were unbearable, it was a miserable existence of illness. My cognitive ME was of the same magnitude, extreme.

You said your physical PEM was a mild inconvenience compared to your cognitive symptoms. In my own experience physical PEM in the severer levels of ME are not 'a mild inconvenience'. So I do wonder what your level is that you experience it as a mild inconvenience! I am now at moderate ME and I can say that my PEM now is a lot different than my severe years. Though I am still mainly housebound. It sounds to me like your ME is moderate?

 

I am severe/housebound, the reason i described it as a mild inconvenience is that with the right kind of accomodations a fulfilling life is still entirely within reach. I realize someone with a spine injury stuck in a wheelchair wouldn't define it as a mild inconvenience but the extreme level of my cognitive symptoms (and the impossibility to accomodate for them) has made anything else aside from death itself (or something like locked in syndrome) look insignificant by comparison.

I simply mean patients who can't do any kind of cognitive work or studying for a long period of time (years or decades). Someone who is completely stuck in life, with their brain frozen and no hope of making any kind of progress. I realize it might not be easy to define in more scientific or clinical terms, and that it is probably a spectrum.

I'm not necessarily suggesting that research be fragmented, just that maybe having a focus on these patients could help the illness to be taken more seriously by doctors or something like the NIH, and the public. I cannot elaborate more as i have no energy, i apologize.

 

Got it. Super frustrating. Please take good care of you and no need to apologize.

 

I’ve spent a lot of time with this too. The need to adapt and to develop the new skills suitable for my current capacity is …well, for me and for most like us, to make progress of some sort is what life is all about. (To the point where not having that makes life seem not worth living.)

The Stephen Hawking example occurs to me daily. Both that he had the support (plus background connections and finances) that made such things possible but also, much more so, that he could still think.
When I was little we used to play a game in which we had to choose what we’d lose (no idea why we started it). You could lose a leg, or be paraplegic, or your sight, or hearing, or sense of taste and smell, …etc. We would try to imagine a life with such conditions and how we’d make the most of it. I concluded, in the more advanced levels of our game, that I could do without most of my body (at that stage I didn’t know that losing control of your body doesn’t do away with the pain etc so it was a simple sci-fi style I am my brain kind of thing with no thought as to how it would be maintained either) if I could still read, and write. I could still imagine worlds of life to be had that way.
It’s a special sort of irony that I got an illness that is both taking away my mind, and is not clearly recognised. So every interaction I do have feels like having to take the same quiz over and over with no hope of success. Nor improvement.

I could give you my bio. Impressive by most standards, and almost all before age 35.
It makes for some weird conversations now as some people simply don’t believe me, like I’m telling stories. Before illness it never occurred to me to care what others thought, if they believed me. I was living it. Now, sadly, it kinda does.
People who knew me before are stumped. They just don’t know what to make of it and so most just disappear. It’s confronting to imagine that this could happen to anyone, even ‘me’. So they don’t. They just get busy with their lives. And tell themselves when I have positive things to say that I’m doing well and will be better soon, and when not well that they’d do it better, or they just try not to think about it.

Even my 85yr old parent who moved in with us after the other parent died, took a few years to fully comprehend that I was now less able than them.

But I’m lucky. I live a very quiet simple life and I can have days when I feel almost like when I was on holiday after an intense patch in my past. And my capacity (both mental and physical) was so great that I have been able to keep up a lot more physical activity than most (I’m able to be as active as a depressed and unfit middle aged person, on good days). After 8-10yrs, this residual conditioning is finally failing me too.

Every year or two, I try a different approach. Over the past year I tried giving up on it all. No more to do lists (to remind myself of basic things like … this is getting too long.
My conclusion for myself is that I have to keep doing 40-80% of what I can comfortably do physically every day. That I can’t borrow from the physical to get more mental capacity (or rather, I really can but it isn’t sustainable to do more than occasionally). For me, spending 15minutes outside (in a really wonderful environment here) every day is a good way to reset (I can tend to keep driving at a goal and forget to stop and reassess the big picture, to cut out the non-essential (an ever moving target that) and redirect to what is most productive for the me that is now.

I needed to read (audiobook in my case due to reading difficulties that I could never imagine before illness) books about the shipwrecked in the age of sail and the Endurance (the ship he took to reach the South Pole, got wrecked and still managed to come back with his crew alive - forgetting the name now is frustrating). To get my head around a mindset I needed to survive this. To know what to admire in myself and how to rate the challenge. To look at how I judged the choices of those people to see what I needed to focus on for myself. I’m due to do this again (memory is not great).

I started duolingo and have now been doing it for 10yrs. I had to try to relearn the languages I used to be fluent in. It has been incredibly slow, mostly no progress, but combining that with watching shows in those languages, I’m almost back to my original fluency for comprehension (can’t really say I can speak though). I did this because the website and now the app works for me.
I couldn’t find anything in physics nor maths that I could manage (and yes, had degree and career in them).

I volunteer in something that you’d say was impossible but I started before diagnosis so I’ve simply asked my doctor not to pursue diagnosis. And I’m senior enough that I can take a command role when I can manage and simply not be available when I can’t. I have assigned warning signs so I’ll always step down if I need to even when my judgment is off. And increasingly I do everything remotely, even on good days.

I did well enough financially before getting ill, and was always a saver, so I can support myself (though recently it occurred to me that people think my spouse financially supports me…hmmm - not that that’s so bad I suppose except that I put so much of my very limited capacity effort into making sure that’s not the case).

I have focused more on growing plants, mostly trees. It’s not something I was any good at before illness but that’s what makes it a good thing to do. It’s possible to make many parts of it routine for the rough days and then do all my thinking on the better days. It’s good because it will matter in 5yrs’ time - when most things I’m a parallel of these days will not.

That’s how I decide what is essential: will it matter in 5 years if I didn’t do it now? If not, skip. Really.

A lot of the self management skills my peers learned in school and University are things I never had to learn. I simply let my brain handle it all. I didn’t take notes, I didn’t make to do lists, I didn’t swat before exams. I simply paid attention and then did the tasks, usually at the last possible moment, and I excelled. At everything I tried.
I told myself that in order to be resilient in the world to come (which most people are only seeing now) I needed to focus on mental resources. Physical things can be taken from you but -you- are still there. I was wrong. I can be taken from me too.
But there are still parts of me in there.
And my problem solving brain still knows the techniques. Even if I can’t hold it all in my head as I did.
And I can remember all the endless slow motion tasks my peers had to use to keep going through the final years of uni, so I try to learn to do them now. Not well, but then again they had 15-20yrs to learn them.

And although in many ways I’m less well than I used to be, and I’m getting less done in the world, my brain is just slowly starting to come back. For about an hour or so a day. On a good day, after a lot of real rest.

Why are we not making more noise? Because I don’t see how I could engage with healthies on this. They have endless capacity to reply, usually with thoughtlessness and bigotry (and I include the hippie types too here, if not more so). I have only so many spoons, none of them guaranteed. I cannot spend them on people who simply want to prove me wrong (for their own sanity, to believe that the world is fair and that they have control of their destiny, and that if we were really horribly sick someone would do something).

Instead, I’ve been noticing all the other people in life. The people who never replied. The people who put their heads down and carry on, not engaging. And I realise, finally, in a way my over-achieving past self never could comprehend, a little of what they’ve lived, of what they might possibly be thinking. And I try to use my small residual role to redirect help to them when crises happen. To interpret for others who might overlook the quiet in favour of the loud. It has not earned me any friends. But it is the right thing to do. And that is the person I would want to be in my own shipwreck in the age of sail.

[as this is a public thread, I will be deleting this in the next few days. Please don’t quote me in full if you wish to reply. I do this as I don’t know how identifiable I am. And I cannot process any ramifications of saying things publicly - oh my fantastically broken brain]

Just wanted to say: you are most certainly not alone in this. It is utterly incomprehensible even to ourselves, that this could be. But we do have this forum, and a snail’s pace is still a life. And there are other quiet people who are just getting on with it in trying to find solutions.

Figuring out what success, with these very real conditions, looks like is no mean feat. And, I’m sorry, it is never really done with.

Forget the noisies who fill up social media with their ‘know what brain fog is’ - we all know that most of them don’t. I try to remember that if they’re saying that much, maybe they don’t know what real cognitive challenges are.
And if you’re having communication challenges, there’s even a thread here for that too.

This post is all the words I will do today. (I’m obviously going on a bit which is one of my signs that I’m wearing out).

 

Beautifully written. Thank you @Subtropical Island.

 

@Subtropical Island beautifully written indeed. Thank you for your contribution.

True, but i don't blame them. It should be medical professionals to set off alarm bells instead of abandoning patients.

By "being loud" i meant something as simple as influencing existing orgs like MEAction. Although, maybe that has been tried and they do not listen.

Regarding the hippie thing, at the cost of being totally politically incorrect i will say what i think: I really dislike this whole movement we have going on in ME circles where it's ok to lay in bed to do nothing, action and accomplishments do not define you and every human being has exactly the same intrinsic value even if they spend their entire life doing absolutely nothing. I think it is maladaptive coping and it makes me grimace. And i have gotten unwillingly dragged into it because, well, i don't do anything and actions speak louder than words. I really wish i could do something.

Theoretically speaking, i don't think I'm completely useless, i can picture scenarios where i could provide a lot of value, even despite having no education, because there are a lot of gaps and opportunities in the world. There are many situations where all it would take is a different perspective and a simple "it should be done this other way" to create a lot of value.

But that's all theory, in practice i am completely useless because nobody will ever accomodate for my disability, especially because i can't even explain the illness to them, it's impossible for them to imagine. I have seen medical professionals whose whole career was about accommodating for disabled people. I spent years(!!) explaining it to them and they still didn't get it or could not give me any practical help whatsoever. Can you imagine if i barged into some competitive field, with no qualifications and expected strangers to do it? Preposterous. And it takes an enormous amount of energy to communicate and convince people you are worth something without having any qualifications. It's just impossible.

Maybe if i had gotten ill later in life and already had an actual career i could have close friends that helped me out in this regard, but for obvious reasons i don't.

Maybe, but a situation like mine sure does seem extremely rare. I still think that's the more appropriate explanation to the lack of noise. If i was in your situation i would probably be doing something like what you are doing. Getting this kind of cognitive impairment at an older age is a very different thing. I would be content with providing support to others to the best of by abilities, and i could cherish my past accomplishments. But i have nothing. That isn't to belittle your tragedy, to be clear!

Success always looks the same, in relative terms. It is achievement. I know that in my case it is not possible to reach no matter how much i lower my standards. That was kind of the whole point of what i was talking about.

I posted this in general discussion so that more people would see it. I think it's the right choice to have the public know about this issue but it's also true that one particular member could have specific life circumstances where it is really not desirable to risk being doxxed. Perhaps it might be possible to keep the thread public but hide a specific message so that only members can see it?

 

Health Advocacy is difficult and while I wouldn't suggest organisations should be beyond criticism, the people doing the work deserve any criticism that is made, to be done with appreciation of the challenges they face.

Representative advocacy - where the function of advocating is in whole or part to represent closely the views, character, experience, demands, wishes etc of those who are being advocated for requires an unambiguous understanding of who the 'represented' are, and with ME/CFS that is very difficult because there is such a poor understanding of the patient population, often the best that an organisation can do is represent its membership, and from that speak more widely but less definitively about the whole advocated for population - in this case people with ME/CFS.

It is not surprising that on this forum many of us find cognitive impairment to be the defining disablement of ME/CFS, but we shouldn't project that onto the whole patient population - 20 million people worldwide ? - as though it should equally matter to them or those who advocate on their behalf. Of course that doesn't mean that those affected by cognitive symptoms shouldn't raise the issue with the organisations of which they are members, as part of developing new approaches to advocacy.

Advocacy in whatever field is frequently about taking lines of least resistance -as such it is mostly different from protest and agit prop; advocacy proceeds from the principle that there is someone who will listen - albeit the message needs to be tailored to the audience. Different countries and cultures, different power structures and economic set ups have widely different audiences, if an organisation is getting traction using a particular approach then it will need persuasive arguments for it to change direction.

And it is always important to remember that most advocates are unpaid, are using their own limited resources and many, will after years of unthanked and unappreciated effort end up burned out and disillusioned.

 

ME is a very difficult disease to sort into types. It is not linear mild to moderate to severe in the way of other diseases or discrete episodes. It is always present with mild ME being better distinguished from severe ME by how close together the severe episodes are. There may be a variation in the severity of each episode that could give some level of mild to moderate but then someone at the mild end faced with carrying on while already in PEM will become severe for at least a while.

It is the same with cognitive problems. A computer programmer will be unable to work while someone else will manage.

You are right that it is easier to accommodate physical disability, when I was given an electric wheelchair I was able to attend a class at our local university and go to the park with my children. Yet when I was able to do my own shopping I would often go into a supermarket, standing there for a while trying to make sense of what I had to do then leave defeated once more.

Long before I was diagnosed I struggled and managed an hons degree but I have never been employed or driven a car or been on an aeroplane. I felt useless for years but that changed at some point when I started to truly believe that I was just unlucky enough to be sick, no moral failure or inadequacy was involved. Watching TV shows where characters shouted and were awful to everyone because they were feeling bad made me feel better about myself because I do not make anyone else miserable.

The cognitive problems that prevent us explaining ourselves is another thing though. I wish there was some research or an explanation we could use when we need medical treatment or to explain our symptoms. That is one of the reasons I desperately want a cause to be found even if a treatment is a long way away. It would act as a shortcut to understanding for people I come into contact with.

 

One of my more horrifying and terrifying experiences of ME is standing in the supermarket aisle trying to figure out what I was supposed to be doing, while looking straight at the shopping list in my hand and standing right in front of the thing I was buying.

I could read the words, but either they made no sense, or I couldn't somehow connect them to the action of taking the product off the shelf and putting it in my trolley.

This has happened many many times.

And forget having to choose between different versions or brands of the same product. I have standardised my shopping routine so that I know which aisles to go to and which products to get. But before I did that I sometimes simply had to leave the supermarket without the goods because I couldn't get through the cognitive fog.

Often accompanied by bad flare-up of haemodynamic symptoms too. Tend to go together.

 

I have something a tad more extreme but fortunately happened only once at this level of severity. It was during my PhD candidacy, a little after I started to realize I was having even worse cognitive issues. I was walking from my office area to either the library or bookshop. Suddenly I stopped. Why was I here? Where was I going? What was I going to do? I had no idea.

I thought about it for a bit then decided I was maybe coming down with something, I should go home and get some sleep. OK, but where do I live? I checked my wallet and there were like twelve or thirteen different addresses! I probably lived at one of them. Only one was nearby. It was clear I could still reason, I just could not remember. So I hopped on a bus to the local place, and checked my key. It worked! I went inside and slept. When I woke up my memory was working again.

I might mention I had just started taking CoQ10 for the first time, and it might have triggered this by one of the still unknown ME mechanisms. Just speculation but its the only possible trigger I could come up with and I could not rule out.

 

This is not talked about enough. I used to carry money so I could go and have a cup of tea till I could work out how to get home. I couldn't get dressed because I could not remember how. At least, I did not forget as such, it was like a word on the tip of your tongue; it was there but just out of reach.

And all these things were worse at a time when I would have been classed as mild. I had not been diagnosed so carried on a normal life with blips where I could not get out of bed or lost the power of speech or vision or movement.

Now I am in a wheelchair and do not attempt anything on my own the brain fog is smaller exactly like being in a fog rather than big obvious things and my memory is more of a problem.

 

Yes to this thread.

Which is why I’m not a fan of statements like PEM is the most devastating/important criteria for MECFS.

Which is why I’m not the biggest fan of putting people on treadmills to get at the cause of MECFS.

Also a subset of patients don’t seem to be affected by brain fog. Howard Bloom wrote a bunch of books while having severe MECFS.

Laura Hillenbrand has written a bunch of books with pretty bad MECFS.

Several folks on this website were able to read that huge JK Rowling book in a couple of days.

The one patient that RD talks about who was writing programs while bed-bound.

Even Whitney Dafoe was able to write a long article about MECFS for a journal.

i honestly think that the prognosis for the non-brain fogged is much better.

For example, Howard Bloom has largely recovered. Laura Hillenbrand has mentioned that her disease has “loosened the grip on her”.

The patient mentioned by Ron Davis has recovered.