The Health-Related Quality of Life for Patients with Myalgic Encephalomyelitis

[Kyla]

http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0132421

The Health-Related Quality of Life for Patients with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS)

• Michael Falk Hvidberg ,
• Louise Schouborg Brinth ,
• Anne V. Olesen ,
• Karin D. Petersen ,
• Lars Ehlers

• Published: July 6, 2015
• DOI: 10.1371/journal.pone.0132421

Abstract
Introduction
Myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS) is a common, severe condition affecting 0.2 to 0.4 per cent of the population. Even so, no recent international EQ-5D based health-related quality of life (HRQoL) estimates exist for ME/CFS patients. The main purpose of this study was to estimate HRQoL scores using the EQ-5D-3L with Danish time trade-off tariffs. Secondary, the aims were to explore whether the results are not influenced by other conditions using regression, to compare the estimates to 20 other conditions and finally to present ME/CFS patient characteristics for use in clinical practice.

Material and methods
All members of the Danish ME/CFS Patient Association in 2013 (n=319) were asked to fill out a questionnaire including the EQ-5D-3L. From these, 105 ME/CFS patients were identified and gave valid responses. Unadjusted EQ-5D-3L means were calculated and compared to the population mean as well as to the mean of 20 other conditions. Furthermore, adjusted estimates were calculated using ordinary least squares (OLS) regression, adjusting for gender, age, education, and co-morbidity of 18 self-reported conditions. Data from the North Denmark Health Profile 2010 was used as population reference in the regression analysis (n=23,392).

Results
The unadjusted EQ-5D-3L mean of ME/CFS was 0.47 [0.41–0.53] compared to a population mean of 0.85 [0.84–0.86]. The OLS regression estimated a disutility of -0.29 [-0.21;-0.34] for ME/CFS patients in this study. The characteristics of ME/CFS patients are different from the population with respect to gender, relationship, employment etc.

Conclusion
The EQ-5D-3L-based HRQoL of ME/CFS is significantly lower than the population mean and the lowest of all the compared conditions. The adjusted analysis confirms that poor HRQoL of ME/CFS is distinctly different from and not a proxy of the other included conditions. However, further studies are needed to exclude the possible selection bias of the current study.

 

[Bob]

I've seen this graph shared on social media. It's worth a look at:
http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0132421#pone-0132421-g003

 

[Sean]

The adjusted analysis confirms that poor HRQoL of ME/CFS is distinctly different from and not a proxy of the other included conditions.

Interesting.

 

[adreno]

Says it all.

 

[jimells]

This is a graphic worth printing and saving. Recently I told the neuro that I'd rather have cancer. He was shocked, even after I explained that at least with cancer, in two years I'd likely be dead or cured, instead of living for endless years, feeling more dead than alive.

 

[Aurator]

He was shocked.

Naturally.
I remember a meeting I had with a rheumatologist, who, after listening to me explain to him how immense an impact this illness was having on every aspect of my life, looked me in the eye and said he was pleased to tell me I wasn't suffering from any kind of serious illness. We parted on good terms, but probably only because I didn't ask (it would have been futile) "so where do we go from here?"

 

[SDSue]

This is a graphic worth printing and saving. Recently I told the neuro that I'd rather have cancer. He was shocked, even after I explained that at least with cancer, in two years I'd likely be dead or cured, instead of living for endless years, feeling more dead than alive.

Just yesterday, after discussing my recent stint of being (again) totally bed bound and telling me that I need a wheelchair, a walker, a handicap parking pass, in-home care, better treatment of my POTS because it is a "downward spiral without a known cure", better vertigo meds, referrals to endocrine, cardio, nephro, and immunology, my primary said to me the following:

“At least you don’t have something serious like cancer”.

I’ve said it before and I’ll say it again. You cannot comprehend the devastation of ME/CFS unless you have it (or care for someone who is on the severe end of the spectrum)

I sure hope the tide is turning. I’m tired of fighting for recognition, respect, and adequate care.

 

[Effi]

Recently I told the neuro that I'd rather have cancer. He was shocked, even after I explained that at least with cancer, in two years I'd likely be dead or cured, instead of living for endless years, feeling more dead than alive.

I never say this out loud, but I do think it often. The fact that this is how we feel should say enough to the person we say it to, but sadly it doesn't. I have no idea how to explain the impact of this disease so that people would understand.

I’ve said it before and I’ll say it again. You cannot comprehend the devastation of ME/CFS unless you have it (or care for someone who is on the severe end of the spectrum)
I sure hope the tide is turning. I’m tired of fighting for recognition, respect, and adequate care.

Amen, Sue. I am just so sick of this total neglect.

 

[Mary]

Naturally.
I remember a meeting I had with a rheumatologist, who, after listening to me explain to him how immense an impact this illness was having on every aspect of my life, looked me in the eye and said he was pleased to tell me I wasn't suffering from any kind of serious illness. We parted on good terms, but probably only because I didn't ask (it would have been futile) "so where do we go from here?"

One of my sisters said something very similar recently. I have 9 siblings (!) and amazingly we are all still alive and relatively healthy, except for me, but my sister said pretty much what your doctor said, that none of us are seriously ill, though she knows my life has basically stopped for the last 17 years ..... I didn't bother telling her otherwise - takes too much energy!

 

[Aurator]

A friend of mine with whom I am in regular contact developed Hodgkin's lymphoma seven years ago. The illness was really quite advanced and he had to have two courses of chemotherapy. He was significantly unwell and debilitated for about six months and less seriously unwell for about another six. But he has been in the clear now for six years and goes running and weight-training every day with no ill effects. He is able to enjoy life to the full and though in his sixties is planning on getting married again soon. He is one of the few people who can sympathize with my condition, and is quick to acknowledge how fortunate he was (relative to me) that he was able to get effective treatment and get it quickly.