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

[alex3619]

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.

That is so, but it also applies to most other diseases and even aging.

 

[Simon]

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.

All the population studies - which use a standardised, systematic methodology across all cases - find the same very high ratio of women to men, eg Prevalence and incidence of chronic fatigue syndrome in Wichita, Kansas. - PubMed - NCBI (Reyes) found a ratio of over 4 females per male. (Note this CDC study uses Fukuda criteria, as opposed to the later Georgia one using flaky Empiric criteria.)

edit:

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.

But re prevalence, the populations studies using a systematic methodology I think do give reasonable results, c02.%-0.4% for Fukuda, less for Canadian. The problem is things like Empiric, with low thresholds for disability (including, for Empiric, inability to do things due to emotional reasons)

 

[alex3619]

But re prevalence, the populations studies using a systematic methodology I think do give reasonable results, c02.%-0.4% for Fukuda, less for Canadian. The problem is things like Empiric, with low thresholds for disability (including, for Empiric, inability to do things due to emotional reasons)

The problem here is that CFS definitions have a severity threshold. At X% severity you have it, at Y% severity (X-1) you don't. We simply do not know how many have a subclinical case of CFS. Its similarly murky using ME definitions.

X is usually set at 50%, though this cannot be assessed accurately. Oxford is even more vague.

What I suspect happens a lot of the time is that "recovered" patients slip below this severity threshold, and can live a semblance of normal life, but are not fully well.

 

[Simon]

Summary:
So far, it looks to me like mecfs is in the lead, perhaps jointly with MS for prime of life chronic disabling illnesses, though stroke and heart disease also appeart to take a significant toll even on people in the prime of life.​

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.

Yup, that's a worse age profile and similar prevalence to mecfs, at least in the UK. But much less disabling...

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.

.. though that's a good point.

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.

Atherosclerosis is not disabling itself, as far as I know, but a big risk factor for both strokes and heart disease, both of which are very disabling. They are much more common in later life than in people's prime (teen years, mid-thirties), though it seems they take a signifcant toll on people in their prime.

Here are some stats I gleaned on prevalence for heart and stroke for the 0-44 population - obviously there are deaths from these illnesses too, which are exluded: Cardiovascular Disease Statistics 2014 - Research - British Heart Foundation [Morbidity stats]

• Heart attack (Myocardial infarction) 0.06%*
• Heart failure, 0.05%*
• Stroke, 0.11%**
  
• ME/CFS 0.15% [crude estimate for 0-44 age group]

So (survived) Heart problems and stroke both less disabling than mecfs according to these sources: *Komaroff, 1996,
**Comparison of SF-36 and WHOQOL-100 in patients with stroke though still a significant cause of disability.
The situation here is diseases that are much more common overall than mecfs and are much more common in older groups - but still take a significant toll on people in their prime.

The problem here is that CFS definitions have a severity threshold. At X% severity you have it, at Y% severity (X-1) you don't. We simply do not know how many have a subclinical case of CFS. Its similarly murky using ME definitions.

I take your point about the arbritary level of disability (though as disability decreases, other causes of such fatigue etc become much more likely), but if we use the prevalence and disability stats on those population studies, that gives us a conservative estimate (not sure the milder cases would add much to the disability argument).

 

[alex3619]

Most of my arguments here go to the question itself. Its not properly defined. As I interpret the question differently I get vastly different answers.

On severity, who is to say that someone with an arbitrary 50% loss in functional capacity is disabled, and someone with 49% isn't? Similarly with respect to having CFS. I suspect the curve may not be a bell curve either but something asymptotic or exponential. We just don't know.

We need a biomarker. With a biomarker a CFS definition is likely to fracture, becoming many disorders. I think ME will fracture into two disorders. However an unknown number who are not sick enough in a doctor's opinion, or on standardized tests, will suddenly be diagnosed. If this question were asked in around 1900 then cancer might rank as the worst disease. As the diagnosis fractured and fractured then it became smaller and smaller cohorts, but collectively its still a huge cohort. Similar arguments apply to rare genetic diseases. Individually they are a tiny percentage of the population, but collectively its considered to be as high as 10%.

Athersclerosis eventually causes heart attacks, which are disabling to various degrees or fatal. Whether its considered depends on the focus of the question. Its needing better definition.

Whether or not CFS is the most disabling disease is a different question. Its consistently been in the top two or three on severity rankings, but that's mostly questionnaire based. Now we have objective measures its looking like even mild CFS, with a loss of half of your functional capacity, is worse than most diseases. A big issue here is that an ME cohort typically rates much worse than a CFS cohort. So that is important to factor in as well.

With exercise physiologists at Workwell saying that mild ME/CFS objectively (using 2 day CPET) ranks worse than severe MS on morbidity (not mortality) then we have yet another angle to consider.

 

[Simon]

Cort's latest
Chronic Fatigue Syndrome Found Worse Than Diabetes, Multiple Sclerosis, Cancer, etc. - Health Rising
mecfs is worse

However, the authors acknowledge that the patients come from a support group and may be more ill than patients in the wider population. That said, I could find no info on how the patients with other illnesses were recruited.

 

[Scarecrow]

However, the authors acknowledge that the patients come from a support group and may be more ill than patients in the wider population.

But if they managed to get along to a support group, they may have been less ill than others.

 

[Snowdrop]

But if they managed to get along to a support group, they may have been less ill than others.

That was my first thought. The idea that people who can manage to get to support groups are the severely ill cohort in this disease.
Makes me think they really don't fully grasp what this is.

 

[Simon]

But if they managed to get along to a support group, they may have been less ill than others.

That was my first thought. The idea that people who can manage to get to support groups are the severely ill cohort in this disease.
Makes me think they really don't fully grasp what this is.

I probably put this badly: it was the national Danish ME assoc, so presumably like UK organisations you can join from your bedside.

 

[A.B.]

The other disease scores are probably not derived from patients in support groups. In that case this is a bit like comparing apples and oranges.

The graph also starts at 0.4, which makes the ME group scores look particularly dramatic.

These things could have been done better.

 

[alex3619]

I probably put this badly: it was the national Danish ME assoc, so presumably like UK organisations you can join from your bedside.

The issue still remains. The most sick cannot use a computer. They are cut off. However the only mildly sick are in high numbers. A bar graph with severity on the X axis and numbers of patients on the Y axis, would be more informative.

 

[Simon]

Most of my arguments here go to the question itself. Its not properly defined. As I interpret the question differently I get vastly different answers.

Let me redefine it for you:
Is ME/CFS the most common disabling chronic illness (or medical condition) striking in the prime of life?
- based on currently available data (and including new onset conditions like stroke)

That's an important qualification, and I'm making it because I'm primarily interested in the advocacy potential:

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.

Complications:

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

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.

On severity, who is to say that someone with an arbitrary 50% loss in functional capacity is disabled, and someone with 49% isn't? Similarly with respect to having CFS. I suspect the curve may not be a bell curve either but something asymptotic or exponential. We just don't know.

@alex3619 has the answer, I think:

We need a biomarker

So Sean and Alex may or may not be right about the hidden part of the iceberg, but in terms of lobbying we can only use what we already know - and is that enough to justify claiming mecfs is one of the most disabling illnesses?

With exercise physiologists at Workwell saying that mild ME/CFS objectively (using 2 day CPET) ranks worse than severe MS on morbidity (not mortality) then we have yet another angle to consider.

I've no idea where that comes from - only that Workwell have performed just one CPET on MS patients, and severe MS patients I've met would be unable to even attempt a CPET maximal test. They need help just to get into their wheelchairs.

I don't really want to turn this into the 'suffering olympics', in @Sean's phrase, and I would say that MS is another serious, disabling illness with a similar age profile to mecfs, though a bit less common according to available data.

More on MS vs mecfs in the next post.

 

[Simon]

MS & mecfs

When I had respite I met quite a lot of people with MS and I'm not sure I'd swap, especially with those with the progressive form that can kill fairly quickly and very unpleasantly.

But while MS gets a good slug of interest, together with public and political sympathy, mecfs does not so it's interesting to compare prevalence (higher for mecfs, see earlier) and disability levels

Here's some typical published MS data on qualityy of life from large surveys (again patient organisations so similar biases may apply) indicates MS patients are in a bad way - though these figures look a bit better overall that population figures for mecfs patients

Using the SF-36 measure to compare the health impact of multiple sclerosis and Parkinson’s disease with normal population health profiles -- Riazi et al. 74 (6): 710 -- Journal of Neurology, Neurosurgery & Psychiatry

One interesting point: MS patients often say that physical disability isn't the worst problem - fatigue often tops the list. While Vitality (VT) isn't a great measure of fatgiue, MS scores are still well ahead of mecfs, and similarly so for social functioning.

(mecfs scores from this population study: The functional status and well being of people with mecfs and their carers)

Vitality: MS= 38 vs mecfs=15
Social Functioning: MS=52, mecfs=29
(Physical Functioning: MS=25, mecfs=30)

So on disability and prevalence (main contributors to disease burden), mecfs is in the same league as MS, perhaps even ahead. Yet we have nothing like the profile. Though admittedly mecfs doesn't have the same level of mortality issues (what a euphemism).

 

[alex3619]

I don't think, based on what we know now, that CFS (and certainly not ME) is ahead of fibro in prevalence or incidence. However there seems to be some consensus from our experts that its far too underdiagnosed, even while its also misdiagnosed. Where the balance lies is difficult to be sure about.

Workwell has a long history of testing patients with many diseases. Not all of it is published, but has been commented on in various video presentations. Their core business was functional capacity evaluation. We need formal published studies, but until then we can still cite their experience. Some issues do arise because what is considered mild, moderate, severe etc. varies a lot, regardless of the disease.

Biomarkers will change everything. I suspect PEM might not be unique to one disease, but possibly unique to two versions of ME, whether they be two different diseases or one disease with two manifestations.

With the potential axing of CDC funding for ME/CFS we may have to deal with political considerations where social values about the perceived importance of ME/CFS have to be factored into advocacy. This has always been a huge issue, but it could become critical.

We need a rallying cry in advocacy. I am hoping Rituximab could be it. Just two to three years and we might have something that will change public perception. With MS is was MRIs, I think. With gastric ulcers it was Helicobacter pylori. With us it will be something, and the next likely something is Rituximab. The global medical community is still largely ignoring the 2 day CPET findings.

 

[Simon]

I don't think, based on what we know now, that CFS (and certainly not ME) is ahead of fibro in prevalence or incidence. However there seems to be some consensus from our experts that its far too underdiagnosed, even while its also misdiagnosed. Where the balance lies is difficult to be sure about.

Fair point. Good mecfs population studies point to a prevalence of 0.2%-0.4%, though that may be understated due to the need for a 50% reduction in functional capcity

Medscape 2015: Fibromyalgia Prevalence Varies Widely by Diagnostic Criteria

Overall, the prevalence of fibromyalgia was 1.7% (95% confidence interval [CI], 0.7% - 2.8%) with the 1990 criteria, 1.2% (95% CI, 0.3% - 2.1%) with the 2010 criteria, and 5.4% (95% CI, 4.7% - 6.1%) with the modified 2010 criteria. Moreover, the female:male ratios were 13.7:1 for the 1990, 4.8:1 for the 2010, and 2.3:1 for the modified 2010 criteria.

Looks like FM is >1%. I couldn't find any studies for disability with FM without comorbid mecfs, but even so, the level of disability, though a bit lower than mecfs was still very high.

Looks like the age profile is substantiallhy older than mecfs, but still affects lots of people in their prime

Fibromyalgia Definition and Epidemiology - Springer:
(pdf)

Maybe FM has an even worse deal than mecfs..

 

[MeSci]

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.

Whilst I can remember 'hints' of illness in adolescence and early 20s, these may just have been different illnesses. But I do consider myself to be a 'slow-onset' pwME, because AFAIK it developed gradually over a few months, maybe a year - in my early 40s.