Health-related quality of life in patients with ME/CFS an Australian cross-sectional study - Eaton-Fitch et al Jan 2020

Health-related quality of life in patients with myalgic encephalomyelitis/chronic fatigue syndrome: an Australian cross-sectional study

https://link.springer.com/article/10.1007/s11136-019-02411-6

 

Despite looser criteria that capture less disabled (in addition to the fact that more severe patients are harder to reach), the numbers are abysmal. Although looking at the general population is suspect, the SF-36 heavily skews to 90+ and here the averages are actually lower than the original PACE target of 85 so this is odd. I guess this is because the general population includes all sick and disabled, including some ME patients.

Oh boy, I just saw the note. The general population SF-36 is a 1997 study and the authors explicitly state there are no newer data.

There seems to be some selection effect with an average of 12 GP visits per year. Most of us barely even bother anymore, 12 is really on the high end. I couldn't even manage 12 (± 16.2!) in-person visits even if my GP was driving the whole thing, most would have to be asynchronous. I think I just about had somewhere around 12 GP visits ever since I got sick and most of those were basically "last test showed nothing, see you in 3-4 months so we can try something else".

Nice that it included onset age, average of 30 ± 12. Most of us mention showing signs much earlier than what we consider onset, so even that is skewed. Incredible how much damage was done by lazy researchers who wanted it to be a bored middle-aged housewife episode. Add to that today's publication of Jason's prevalence of 0.75% in children.

Would really be nice to have stratification based on diagnostic criteria, using Fukuda means the numbers will appear better than they are.



Ultimately, the important part is this:

What I fail to understand is why health-related quality of life appears to be unimportant to public health and medical authorities. Controversial opinion, I guess, but it feels like it should be really important. Oh, well.

 

A bit before headache cos if you are short sighted reading gives you a headache.

 

I'd argue It is not meaningful to compare a general population as this is not matched to the age and gender of patients. The general population of Australia has many elderly people which has an impact on physical functioning. 90+ scores are for working age participants without severe disabilities.

 

Yes, and in this study, they specifically restricted the ME/CFS sample to those aged 18-65.

 

I don't recall any discussion in the paper about this set of data
WHODAS

https://www.who.int/classifications/icf/docs/36item_Scoring_Template_Simple_Scoring.xlsx?ua=1

Information on the questionnaire can be read here:
https://www.who.int/classifications/icf/whodasii/en/

They presumably exchanged them to 0-100 scoring as it doesn't seem possible to score these scores with raw scoring

(where 0 = no disability; 100 = full disability).

It looks like population data could have been used to compare to these scores.

 

Minor quibble:

I don't think they are good definitions, particularly of moderate.

 

Good to see the following which I don't recall seeing much, if at all, in other papers:

 

Technically, all of the inequalities in the last sentence are the wrong way around, though most people could probably have guessed it

 

Gender differences, for what they are worth:

 

They don't point out that lower physical functioning, if it correlated with low activity levels, would mean fewer calories were being burned which could lead to a higher BMI.

 

I presume "healthy" is an error here. They don't look like the scores of healthy people, but those of the general population. Elsewhere in the paper they are referred to as general population scores.

 

What percentage of testing is done in people's homes and how much requires participants to travel to a site? This could give information on whether the more severely affected were underrepresented.

 

N=1 here, but anyway.

I was slim when I first became ill and as my ability to exercise and function dropped like as stone my weight crept up.

In recent years I gradually dropped 4-5 dress sizes - can't give amount in weight as I don't own a scales. None of this was down to exercise as I still can't, though I really want to.

My BMI must have dropped fairly significantly. Do I feel any better? No, not really. Do I have more stamina? No. I don't feel I have any more energy. There's just a bit less of me.

 

I don't know if the survey was ever published, it was in the US but they were looking at weight. I was going to do it, but they asked what your weight was. It was so stupid. My weight when I became ill is the important thing not what it is after decades of illness and age is a factor too since weight at fifty is likely to be more than weight at 14.

Then there is amitriptyline which can cause a large increase in weight but is often the first medication people with CFS are given.

There is information it would be good to know about weight and ME. I felt there were times I put on weight with no obvious reason and others lose weight in the same way. So frustrating when research money is used but doesn't give useful answers.