Preliminary ICF core set for patients with myalgic encephalomyelitis/chronic fatigue syndrome in rehabilitation medicine, 2020, Ekholm et al

I agree with Medfeb's point about the variability of functioning over time. It's really hard to assess and quantify that.

One thing I struggle with in assessments like these is wanting the reality of disability to be acknowledged but also wanting to see myself and be recognised as a person who can still do things.

It's all too easy to see someone with a disease recognised as affecting higher cognitive functions or attention functions as not being able to make decisions for themselves. People can sometimes be unable to concentrate and then other times be able to produce really fine work. It's difficult for the person with ME/CFS and for the people around them trying to support them.

In this paper, there's an assessment of Emotional function B152:

Specific mental functions related to the feeling and affective components of the processes of the mind.
Inclusions:
functions of appropriateness of emotion, regulation and range of emotion; affect; sadness, happiness, love, fear, anger, hate, tension, anxiety, joy, sorrow; lability of emotion; flattening of affect​

It was assessed by a physician. 23% of people were assessed as having no loss emotional function; 39% of people had mild impairment; 23% of people had moderate impairment; 12% had severe impairment.

I feel that my emotional function is essentially ok. When I look at my son, I think his emotional function is essentially ok. There are times when we feel like we have the flu, and then our emotional function is probably similar to a person with good emotional function who has the flu. I've had 'flattened affect' written in my medical notes once when I was actually exhausted from sitting for a long time in the waiting room and politely masking my rage at the patronising attitude of the specialist I was seeing. My son has had 'flattened affect' written in his medical notes when he just couldn't be bothered using his energy to actively engage with someone he thought was stupid. He was definitely still quite capable of humour and anger when he chose.

I wonder about the accuracy of assessments of emotional function, especially at times when people are grieving the loss of so much of what was important to them and especially by clinicians with prejudices about ME/CFS. Too little emotion might be wrong, too much emotion might be wrong, a particular emotion might be wrong...

I can see that if someone has depression, then their emotional function is impaired. I guess high levels of stress can impair emotional function. But I've heard of people with very severe ME/CFS able to use their imaginations and memories to experience rich emotions. You only need to read some of the blogs of people with severe ME/CFS to know that these are people with amazing mastery and awareness of their emotions, in really dire circumstances.

I've had fellow patients suggest to me that people with ME/CFS are emotionally labile, unable to regulate our emotions, with the inference that we can't trust our emotional responses. They have suggested that people with ME/CFS are quicker to take offence or can't communicate as well. But, as a moderator here, I see a range of personalities, with people appearing quite normal when it comes to emotional range and control. Many people with ME/CFS are incredibly emotionally steady and resilient.

I guess I think that, in embracing some of these labelled disabilities, we may be diminishing our agency. A finding of 74% of people with reduced emotional function in one study doesn't mean that everyone with ME/CFS has reduced emotional function, or that they have reduced emotional function all the time. Or that, when they feel anger, that should be seen as just a symptom of the illness. We have lost a lot; I'm not sure that we also have to accept that our emotions are faulty.

 

Had you reacted, you would have been written off as histrionic...