+100%-

Let’s put aside questions of whether a disease is going to kill you or not and concentrate on what happens if it doesn’t kill you. Let’s say God said you had to have a chronic illness but he/she would allow you to choose which one to have. On what basis would you make that choice? My guess is that most people would pick the disease that allows them the highest quality of life and the most functionality.

depressed

If a disease doesn’t affect quality of life – how much does it need to be addressed? If it does significantly affect QOL – how much more urgently should it be?

A disease that doesn’t impact our ability to function or  to be productive in society or our quality of life, may be a disease that doesn’t need a lot of attention. A disease on the other hand, that significantly restricts our functioning is a disease that our society, purely from a pragmatic viewpoint, should pay a great deal of attention to. A disease that significantly impacts our quality of life is a disease that we as human beings would dread, most of all, of having.

People with ME/CFS often assert their disease is not taken seriously enough at their doctors office, by the public, by their families or by the federal government.

A Danish research group put the impact of chronic fatigue syndrome to the test recently. They compared the quality of life scores of people with ME/CFS with people who had serious medical disorders.

It was put up or shut up time. For ME/CFS to be considered a serious disease it had to pull its weight against diseases like multiple sclerosis, cancer, rheumatoid arthritis and stroke. Could it?

Let’s find out.

The Study 

The Health-Related Quality of Life for Patients with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) Michael Falk Hvidberg,1,* Louise Schouborg Brinth,#2 Anne V. Olesen,#1 Karin D. Petersen,#1 andLars Ehlers  PLoS One. 2015; 10(7): e0132421.Published online 2015 Jul 6. doi:  10.1371/journal.pone.0132421

The data for the ME/CFS part of the study came from 112 people associated with the National ME/CFS Danish Association. Except for some questions specifically targeted at ME/CFS patients, the same standardized survey was used in this survey and in a 23,000 person Danish survey. The bigger study examined the quality of life in chronic illness.

Let’s get one thing out of the way first. The big question overhanging this survey was how representative the 112 people coming from the Danish ME/CFS Association were of ME/CFS patients in general.

The demographic results indicated that with regards to age, gender, and socio-economic status the Danish patients looked much like ME/CFS patients surveyed in other countries. The authors agreed, though, that patients joining a group like the Danish Association probably tended to be less satisfied with their health care, more severely ill and more resourceful than patients not joining organizations like that.

major disorders

Cancer, heart disease, multiple sclerosis – could ME/CFS hang with the biggies????

They  argued, though, that sampling support groups may actually produce a more realistic assessment than sampling patients from clinics, because clinic studies usually miss the more severely ill patients.  Since high percentages of ME/CFS patients (relative to other diseases) are severely ill, the authors proposed that their sampling protocol may more accurately reflect the chronic fatigue syndrome community.

The authors also reported that because they ‘extracted’ the effect of the QOL (HRQoL) of ME/CFS from other conditions that might have been present,  the study only estimated the impact of ME/CFS. That was an advance over most QOL studies.

Results

The authors looked at median and mean quality of life scores. The median scores are a more accurate measurement of a community because they’re not skewed by people with really high or low scores.

How did the quality of the lives of people with ME/CFS stack up next to those of people with cancer, multiple sclerosis, heart attack or stroke?

They were worse – significantly worse.

Median Scores

People with ME/CFS had the lowest  median quality of life (QOL) scores of any disease tested. The next highest QOL score was 12% higher (bleeding ulcer). Next came people with chronic kidney failure with 15% higher scores.

QOL score

People with ME/CFS had lower quality of life scores than people with other major illnesses

People with the big, scary diseases ( the ones people think – “Please, Lord not me!”) all had consistently higher quality of life scores than people with ME/CFS.

Schizophrenia is one of the last diseases I would wish on anyone, but people with schizophrenia scored 21% higher in their QOL scores than people with ME/CFS. The same was true for people with stroke, multiple sclerosis and rheumatoid arthritis.

People with Type I Diabetes, cancer or heart problems had it relatively easy. Their QOL scores were 33% higher than those for people with ME/CFS.

Mean Scores

If the median scores were disturbing, the mean scores were frightening. A significant drop in the mean ME/CFS QOL score surely reflected a significant subset of ME/CFS patients, with very, very low quality of life scores.

This time people with the disease with the next lowest QOL score (again bleeding ulcer) were thirty percent better off.  People with lung cancer, stroke, diabetes, etc. had almost 50% higher quality of life than people with ME/CFS.

These are incredible figures. Chronic fatigue syndrome is widely regarded as a rather minor disease and its funding reflects that.  This study, though, suggests ME/CFS places a greater burden on those afflicted with it than do many of the most serious diseases of of our time including schizophrenia, cancer, stroke, multiple sclerosis and Type I diabetes. Could that really be true?

Time for a reality check.

Reality Check

There was that possible sampling problem. Did the study target a abnormally ill segment of the ME/CFS community?  A review of past  ME/CFS quality of life and functioning studies suggested the results may have been dead on.

functioning chronic fatigue syndrome

People with ME/CFS had significantly reduced functioning around a broad category of scales compared to other serious diseases. PF = Physical functioning; BP – bodily pain, RP – limitations due to physical problems, GH – general health, SF- social functioning, VT – vitality, RE – limitations due to emotional problems, MT – general mental health.

The results of a 2011 British study comparing functioning in people with ME/CFS vs people with rheumatoid arthritis, cancer and depression showed a staggering reduction in functioning in the ME/CFS patients. Except for emotional and mental health scores – which were similar in depression and ME/CFS – all the functional health scores were dramatically worse in ME/CFS patients.

The most significant study to back the recent findings, however, may still be a large 1996 study by Anthony Komaroff published in the American Journal of Medicine. It compared the functional capacity of 233 ME/CFS patients (from a clinic) with thousands of patients in other disease groups (hypertension – 2,089, congestive heart failure – 216, type II diabetes – 163, heart attack – 107, multiple sclerosis -25 and depression – 502).

Komaroff found people with ME/CFS scored lower than all the other diseases on all the functional scales, againexcept for the emotional and mental scales for people with depression.

(Komaroff also found both the degree and kind of functional impairment found in ME/CFS was different from that found in depression. Studies indicate that the scores for the emotional and mental functional subcategories are similar in depression and ME/CFS. What’s different are the far lower physical functionality, vitality and other scores found in ME/CFS.)

Other smaller studies have had similar results. In fact no disease yet assessed has had a greater or even equivalent impact on QOL or functioning as has chronic fatigue syndrome.

A 2011 Italian study found lower quality of life scores in ME/CFS vs hepatitis C. A large 1996 U.S. study found  lower physical and social functioning, general health, and body pain scores in ME/CFS patients versus those with acute mononucleosis.  In both studies the depth of the fatigue present was the most significant factor in determining QOL.

Children with ME/CFS were found to be more impaired and had lower school attendance than children with  juvenile idiopathic arthritis (JIA) or emotional disorders.  “Remarkably similar” quality of life scores in three countries indicated that significantly reduced QOL is status quo for people with this disease.

My guess is that QOL issues in ME/CFS are so significant because, besides the sheer discomfort the disease causes, it strikes at the core of who we are as humans.  Our nature is to be physically  and mentally active. Taking away our ability to work, to socialize, to exercise – is taking away something very precious. Other diseases cause reduced functionality, but few appear to do so on the scale that ME/CFS often does.

These studies suggest that people with ME/CFS get hit harder and in more ways than any disease that’s been tested yet. That was reflected in the incredibly low employment levels found in this study – just 7.6%   – and the very high rates of disability (52%).

The NIH’s Stark Choice

This is a rough disease.  Functionality and quality of life studies indicate that it’s one the roughest diseases to have. They also provide another set of tools advocates can use to push the NIH and CDC to provide appropriate levels of support.

(If you want a really vivid description of how rough ME/CFS and FM are, check out how ME/CFS and FM patients describe their symptoms in In Their Own Words.): Chronic Fatigue Syndrome and Fibromyalgia Patients Describe Their Symptoms)

The chronic fatigue syndrome community has a lot going against it at the NIH. It has some real ammo as well.

These studies indicate the NIH faces a  stark choice. It can choose to support people who have one of the most difficult disorders found, or it can continue on its way and stop pretending that it’s committed to improving the health of all Americans. It can start providing support based on the needs of it’s clients – the American public – or it can acknowledge that it’s an institution that discriminates.

If the NIH can’t finally step up to the plate a different mission statement would be more appropriate:

NIH’s mission is to seek fundamental knowledge about the nature and behavior of living systems and the application of that knowledge to enhance health, lengthen life, and reduce illness and disability….in Americans with the illnesses we have decided to support.  (Others need not apply).

Doing Our Part

Every advocacy blog Health Rising puts out over the next couple of months is going to include a request to join the #MEAction project created by Jen Brea and Beth Mazur.  The #MEAction project is comitted to being a one-stop advocacy portal for ME/CFS advocacy.

I call your attention to two petitions to increase funding for ME/CFS found on the site. Petitions, by themselves are not going to change anything but they are easy to do and over time, in conjunction with other efforts they can provide evidence of a communities commitment. Please, sign the petitions and join #MEAction.

Keep Health Rising Rising!



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