Question: Is ME/CFS the most common disabling illness in the prime of life?

[Simon]

Maybe this has been discussed before, and perhaps I'm being a bit slow on the uptake, but I did wonder if mecfs is in fact not only very disabling, but also the most common such illness in the 'prime' of life (at least in women).

What do people think?

I know mecfs is supposed to be the most common cause of long-term school absence in the UK (does anyone have a source for that)? I got ill in my early thirties, which isn't great, but at least I'd had the chance to live a bit first and have always thought that getting mecfs in your teens, as many do, is the worst time. Not only does it hurt your educational chances but those are such key years for social development, never mind enjoying yourself.

This graph of new cases from a large Norwegian study (discussed on this thread) highlights the relatively young age at which people get ill with mecfs:

[Figure 1 from: Two age peaks in the incidence of chronic fatigue syndrome/myalgic encephalomyelitis: a population-based registry study from Norway 2008-2012]

Given that 30s/40s are also supposed to be the 'prime of life' that makes mecfs an illness that robs you of your best years.

What other diseases do this?
I don't want to start of a Beauty contest for which is the 'worst' illness but my understanding is that most other major common illnesses such as cancers and rheumatoid arthritis become more common as people get older. And some such as Alzheimer's and Parkinson's are fairly rare until 60+.

Motor Neurone Disease is a horrendous example of a prime of life illness, though that is very rare. Multiple Sclerosis is similar in age profile to adult mecfs, I think, and reasonably common (half the prevalence of mecfs?) though neither of these two are common in adolescence.

Of course, I might just be displaying my ignorance of other illnesses here so thought I'd consult with the smart crowd...

If it does turn out that mecfs is (one of) the most common disabling illness(es) in the prime of life, perhaps we can make more of it when trying to persuade others to take this illness seriously.

 

[aimossy]

I think this is really good point @Simon
Can you lump those numbers even higher if Fibromyalgia is added as well, even of there is crossover?

 

[Purple]

I know mecfs is supposed to be the most common cause of long-term school absence in the UK (does anyone have a source for that)?

This is the source: http://www.tymestrust.org/pdfs/dowsettcolby.pdf
Page 4 - point 7b

b) Types of Illness Which Cause Long Term Sickness Absence Among the 885 individual sickness records received in 6 LEAs, ME/CFS was by far the commonest cause (42% overall, 33% in staff and 51% in pupils) followed by: cancer and leukaemia (23%); general medical or surgical conditions (13%); musculo-skeletal problems (12%); psychiatric disturbance and virus infections (5% each).

 

[Snowdrop]

I would presume the graph accounts for incidence of ME that are sudden onset only. It would be good to have that clear though.

The PWME that are of slow onset would confound the data although I tend to think that they might fit nicely into the graph in terms of the peaks. That is slow onset that is mild but noticeable in the teen years that remits and then again becomes more severe mid-adult.
This could include more than one remit/relapse as well.

Even though we as PWME have been aware of the misdiagnosis that overstates ME when only lingering fatigue is a criteria I sometimes have thought that when the fatigue only group is eliminated that ME is still more prevalent than we might think due to the number of people who could be ill but are not ill enough yet to be clearly diagnosed. It may even include some number of people who claim to be cured who really do have ME and not lingering fatigue.

Just anecdotally I think the slow onset crowd come from an early onset cohort. I haven't heard much of late life slow onset.
I guess my point here is:
This group would not be the same in terms of being robbed of life completely in the way sudden severe onset would.
But it would be an issue of diminished capacity. In my case I knew, without knowing why, that I could not raise my two children and work outside the home as well. It wasn't a choice. I knew physically I could not do both. As it is I barely managed as a parent sometimes.

 

[Nielk]

Rheumatoid arthritis is not only a disease of the old. Many people in their twenties get it as well as young children.

 

[Kyla]

Autoimmune diseases in general have a spike of onset in mid-thirties age group.

That is one of the factors arguing for an autoimmune basis for ME.

I'll see if I can find stats for you.

 

[Kyla]

Having trouble finding age at onset stats for pooled autoimmune diseases (as opposed to each separately), but AARDA states:

Since the women affected are mostly young women in their childbearing years, a time when they are traditionally most healthy, getting a diagnosis can prove to be extremely difficult.

http://www.aarda.org/autoimmune-information/autoimmune-disease-in-women/

 

[Nielk]

Crohn's disease typically starts in the teens and effects males and females equally.

 

[adreno]

Is ME really more common in women - or is it just a question of gender-bias, like boys being more diagnosed with ADHD?

 

[Simon]

I would presume the graph accounts for incidence of ME that are sudden onset only. It would be good to have that clear though.

The PWME that are of slow onset would confound the data although I tend to think that they might fit nicely into the graph in terms of the peaks. That is slow onset that is mild but noticeable in the teen years that remits and then again becomes more severe mid-adult.

The study didn't distinguish between slow and sudden onset.

Rheumatoid arthritis is not only a disease of the old. Many people in their twenties get it as well as young children.

Of course, but the level of incidence (new cases) increases with age:

CDC - Arthritis - Basics - Definition - Rheumatoid Arthritis
The most recent US data on the incidence of RA is from the Rochester Epidemiology Project, a study that has provided the majority of population-based descriptive statistics on RA. In 1995-2007, 41 per 100,000 people were diagnosed with RA each year. Incidence rose with age (e.g., 8.7 per 100,000 people among those aged 18-34 compared with 54 per 100,000 among those aged ≥ 85 years);

(similar UK incidence data: Rheumatoid arthritis | Arthritis Research UK)

Autoimmune diseases in general have a spike of onset in mid-thirties age group.

Having trouble finding age at onset stats for pooled autoimmune diseases (as opposed to each separately), but AARDA states:
http://www.aarda.org/autoimmune-information/autoimmune-disease-in-women/

Would love to see any stats you can find. The only paper AARDA quote is:
Autoimmune diseases: a leading cause of death among young and middle-aged women in the United States.
which only looks at deaths, and unsurprisingly shows that deaths from autoimmune diseases increase with age.
I guess this calls for a tedious trawl of studies by illness

Update: for MS

[Figure 4 Incidence and prevalence of multiple sclerosis in the UK 1990–2010: a descriptive study in the General Practice Research Database -- Mackenzie et al. -- Journal of Neurology, Neurosurgery & Psychiatry]
Age at diagnosis, age at onset maybe a bit younger. So similar to mecfs in shape.
Data for more diseases would be revealng.

 

[Forbin]

One thing which might confound the Norwegian chart is that it seems to represent the age at which a patient was "registered" as having ME with the Norwegian Patient Register (NPR) - not necessarily, the age at which they became ill.

I assume one is "registered" when one is diagnosed, but diagnosis is known to take years in many cases. Thus, the chart could well be skewed older compared to a chart showing age of onset. The time from onset to diagnosis may also vary between age groups. For example, my impression is that young children are diagnosed more quickly than adults (they would almost have to be to remain young children at the time of diagnosis).

 

[snowathlete]

Great question Simon; could be usefull for getting traction on issues such a research funding. I woudln't be surprised if it were the case.

This is the source: http://www.tymestrust.org/pdfs/dowsettcolby.pdf
Page 4 - point 7b

A third in staff as well. Well I didn't know that, but I find that really interesting.

 

[JamBob]

Type 1 diabetes AKA Juvenile-onset diabetes affects children and young people predominantly. The incidence in the UK 0-14 year olds is 24.5 per 100,000. In Finland it's 57.6 per 100,000.

The good think about diabetes is that there is a treatment ie. insulin (unlike ME/CFS where there is no real treatment) however it is a problematic disease in that it affects every element of your life and can be quite disabling and frightening for people who aren't trained to manage their insulin (which is sadly the norm in the NHS). I know at least one person who suffered major vision impairment while she was at university as she wasn't able to manage her diabetes very well. She was only 20.

It's also very hard for parents to manage kids with T1 as they have to get up several times a night to check the kid isn't hypoing or DKAing.

Also the more years you have the disease, the more likely you are to suffer from some very unpleasant complications like nerve pain, erectile dysfunction, blindness, limb loss, cognitive dysfunction, plus cardiovascular, immunological, dermatological and other neurological problems.

That being said, I'd much rather have T1 diabetes, than ME/CFS. Being in no-man's-land without treatment and explanation is much worse than taking injections 10 times a day.

I think ME/CFS is one of the worst diseases because there is literally no treatment for it at the moment. Whereas all the other diseases get some kind of treatment, even if it is only palliative care.

 

[alex3619]

I think this is really good point @Simon
Can you lump those numbers even higher if Fibromyalgia is added as well, even of there is crossover?

I think fibro "wins". Its more common.

 

[leokitten]

I think fibro "wins". Its more common.

May I ask is fibromyalgia, without comorbid ME/CFS, less or more disabling than ME/CFS?

 

[WillowJ]

Is ME really more common in women - or is it just a question of gender-bias, like boys being more diagnosed with ADHD?

As more people are undiagnosed than diagnosed, I agree it is hard to know for sure with the data that we have.

Most of the doctors who are paying attention do think there is some higher incidence in women, but they think some of the studies overstate it, with the actual mix likely closer to autoimmune diseases than the hysterical* representations of 80-90% women.

*[intentional misuse of a "hot potato" label]

 

[Sean]

I don't want to start of a Beauty contest for which is the 'worst' illness...

Also known as the 'Suffering Olympics'.

Regarding how common ME/CFS is: I suspect that the currently diagnosed are just the tip of the iceberg, and that milder forms in particular are actually very common, and almost always completely missed or misdiagnosed & mistreated. Furthermore, I am quite confident that once an accurate diagnostic method and genuinely effective treatment are developed the results will be starkly revealing and revolutionary, to put it mildly.

 

[alex3619]

May I ask is fibromyalgia, without comorbid ME/CFS, less or more disabling than ME/CFS?

Based on my current understanding ME is usually more disabling. However keep in mind many have both ME and fibro,. Its also harder to tease out the issues are some with ME also have MCS. EDS, MCS, ME and fibro combined would make someone very sick.

This question though was about prevalence. My understanding is that fibro runs at several percent, sometimes up near five percent (though I am not sure of this figure). Diabetes is not disabling at its prevalence rate, nor most other conditions. Disability rates are a subset of prevalence.

If however you interpret the question as to which disease which can be disabling is most common, atherosclerosis wins hands down. Stroke would possibly be second, but I am not sure about that. Whether you class stroke as a disease is another question. Pretty well any disease can be disabling, even things like measles. So the question really needs some clarification.

However CFS by its nature requires a loss of substantive or in some definitions over half of a patient's functional capacity. That means its very common for people to be disabled with CFS, and even more common in ME definitions.

So if the question goes which disease has the most disabled in the general population, that would be yet another question. For all I know CFS might win, possibly in part because its a broad definition.

 

[alex3619]

I suspect that the currently diagnosed are just the tip of the iceberg, and that milder forms in particular are actually very common, and almost always completely missed or misdiagnosed & mistreated

I think this is a huge problem. However at that level of severity it would not be disabling.

The issue is, I think, that without a good diagnostic biomarker a very mild case is very hard to differentiate from other forms of chronic fatigue. PEM may not be obvious, nor many other issues.

 

[Sean]

However at that level of severity it would not be disabling.

Maybe not disabling by overt medico-legal standards, but even very small, subtle, and unnoticed chronic reductions in capacity are likely to have significant cumulative consequences. Multiply that up across a large population, and the total impact is substantial.