where is the …

This is the start of a new series of quick blogs about ‘things ME made me do’, where I will discuss common things, or themes, that I’ve seen so many people with ME do. For me it has been a revelation realising that even the things we do can identify an ME patient.

things ME made me do …

Where is the …

oh I can’t even remember it’s name … what the blue blazers is it called … the thingy … ok the thing you use to blah blah blah …

The above are words that I am almost certain have been expressed by every single person with ME …

They are words that we know all too well.

 where is the blah blah blah 
 . . . said by every single ME patient . . . 

definitions …

Let’s first take a look at how ‘memory’ and ‘forget’ can be defined:

memory:<ref>Dictionary.com, LCC. (2015) Dictionary.com Pro for iPad (version 7.2.27). [Mobile app]. [Accessed 5 March 2022].</ref>
the mental capacity or faculty of retaining and reviving facts, events, impressions, etc., or of recalling or recognizing previous experiences.
medical definition: The mental faculty of retaining and recalling past experience based on the mental processes of learning, retention, recall, and recognition.

forget:<ref>Dictionary.com, LCC. (2015) Dictionary.com Pro for iPad (version 7.2.27). [Mobile app]. [Accessed 5 March 2022].</ref>
to cease or fail to remember; be unable to recall: to forget someone’s [or something’s] name.

Given those descriptions it is clear to see that poor memory and being forgetful are very closely intertwined. However, they don’t always go hand in hand; unless you have some cognitive condition, or ME and then you will see it often playing out in the ME patient’s life.

where is the …

Back to those words. You and others can hear you, yet again, frustratedly exclaiming where is the blah blah blah, and it can be, and frequently is, very telling.

In simple, face value, terms it tells us that someone is probably suffering from stress, poor memory, or an even more serious health condition. But, on a whole other level you will never find an unstressed regular healthy person with these kind of cognitive issues.

Needless to say, these kind of cognitive and memory issues are closely linked with having ME. In fact, cognitive issues are said to be high up on the disabling factors of having ME. Personally, I have found that the physically sicker I get the poorer my cognition becomes.

In support of the above ideas and thoughts, research into cognition and ME has shown that for many ME patients, (Cockshell, et al., 2010, stated on ME Research UK, 2010)<ref>Unknown. (2010). ‘Memory and Attention Problems’, ME Research UK, 10 August [Blog]. Available at: https://www.meresearch.org.uk/memory-and-attention-problems/ (Accessed: 5 March 2022).</ref>

Neurocognitive problems are one of the most frequent and disabling symptoms associated with ME/CFS. In one investigation, 89% of patients reported memory/concentration problems, while in another large study memory/attention deficit problems were reported by approximately 90% of 2,073 consecutive patients. Crucially, patients often report that their cognitive problems can be made worse by physical or mental exertion. But do such self-reported anecdotes about cognitive symptoms also show up as measurable deficits on objective cognitive testing in a clinical setting?

what does this tell us …

Well firstly, think about it … 💭 …

If your body is struggling to find or utilise energy, as is the case with ME, then it goes without saying that every part of you will suffer. When it comes specifically to the brain, it requires about 20% of your energy in order to function efficiently, which accounts to about 500 calories per day. So the brain is quite a demanding body organ and failure to get this energy usually results in the cognitive issues that we have discussed above and will highlight further as we continue.

Consequently, if you are already low on energy, and you are also unable to eat well due to the digestive issues accompanying ME, then your brain functions are definitely going to be impaired.

Furthermore, the research mentioned above also revealed the following interesting facts regarding ME patients’ cognition and memory function, (Cockshell, et al., 2010, stated on ME Research UK, 2010)<ref>Unknown. (2010). ‘Memory and Attention Problems’, ME Research UK, 10 August [Blog]. Available at: https://www.meresearch.org.uk/memory-and-attention-problems/ (Accessed: 5 March 2022).</ref>

The most significant cognitive deficits ([sg_popup id=”17312″ event=”inherit”]see Graph[/sg_popup]) were found in ‘attention’ (encompassing attention span and working memory), ‘memory’ (examined from verbal and visual memory tests, mostly memory for word lists) and reaction time (assessed as responses to both simple and complex choice stimuli). These results were consistent with the memory and concentration problems that patients themselves complain about. In contrast, there were no apparent deficits on tests of ‘fine motor speed’, ‘vocabulary’, ‘reasoning’ or ‘global functioning’, suggesting that the ‘higher order’ cognitive abilities such as language, reasoning and intelligence remain unimpaired. Importantly, most studies that examined the impact of self-reported depression on cognitive functioning failed to find a relationship, indicating that depression was not responsible for most cognitive impairments.

Ask yourself the question. Have you ever, either as a healthy person or prior to having ME, f you have ME, when you were healthy had cognitive or memory issues.

I’m pretty sure your answer is … No …

I think not … because it’s rare and more unlikely that you would struggle like this as a healthy person. Not even after a hard and gruelling day even to the extreme; you simply always have enough energy to supply all your body needs when you’re in a healthy state and most certainly after a good night sleep everything is usually restored.

so why not …

Well firstly, a healthy body provides the right amount of energy to the bodily functions and at the time it is required too. And when a healthy body rests, it recovers. However, this is not the case with ME.

so what is the difference for someone with ME …

Sadly, those with ME know all too well that because, as already highlighted in the preceding discussion, the amount of usable and accessible energy in a person with ME is impaired. Plus, energy is needed for every bodily function. With different organs requiring different amount. But when energy gets low it is the body’s main priority to keep you alive, not keep you clever. Consequently, it will divert energy to the most important bodily functions if there isn’t enough free energy available. Sometimes, and often in severe ME, this will mean your brain is left with too little energy and cognition will suffer.

takeaway …

Use the knowledge in this blog to know and understand that, if you repeatedly feel or behave cognitively impaired that there is a very good chance you are suffering with a symptom of having ME and the only answer is to …

STOP …

rest …

pace …

Additionally, I would add,

and listen to your body.

ME is a neuroimmune disease that, contrary to common misconceptions, is not characterised by chronic fatigue,
but rather by a severe exacerbation of symptoms which manifest after a minor physical or mental exertion.
This hallmark symptom characteristic of ME, known as Post-Exertional Malaise (PEM),
can persist for days, weeks or consequently be a the trigger for a relapse or deterioration.
Anil van der Zee

in summary & in conclusion …

Whenever you feel cognitive disfunction and / or can’t recall words,

💭 about your energy levels … and pull back … you probably do not have serious cognitive illness … you’re depleted of much needed energy …

Do not be too quick to dismiss it.

Maybe advise the person speaking them, be it yourself or a loved one, simply advise them to,

STOP …

REST …

PACE …

and listen to your body …

a personal concluding note …

I would conclude by stressing:

stop … rest … pace … listen to your body …

[[references]]

Please feel free to contact me to share your outcomes or with any questions you may have.

 fragmented.ME xXx