Health rising blog post, by Cort Johnson, 16 April 2018: Chronic Fatigue Syndrome – It’s Worse than Multiple Sclerosis – and Fibromyalgia is No Walk in the Park Either
Multiple sclerosis (MS) is a dreaded disease. About ten years into having chronic fatigue syndrome (ME/CFS), I still remember being tested for it and how thankful I was that I didn’t have it.
MS does things to people that ME/CFS doesn’t. For one thing, it kills more people and in a horrible way. According to one site, the average lifespan after an MS diagnosis is about 25 -35 years.
When people with MS die, they usually do so because they either kill themselves, or from an inability to carry out basic functions such as breathing or swallowing. Respiratory failure, pneumonia, sepsis and/or uremia are often listed as contributing causes on their death certificates. As in ME/CFS, a bedridden state increases the risk of all of these.
MS and chronic fatigue syndrome (ME/CFS) are both considered to be amongst the most fatiguing of all diseases. In fact, for many with MS, fatigue is their most debilitating symptom. Alan Light’s ME/CFS/MS study suggests that people with MS may be more fatigued than people with ME/CFS, but experience much less post-exertional malaise.
The scientific literature suggests that many people with ME/CFS plateau at some point while a subset gets worse over time. Suicide rates appear to be elevated – two people with ME/CFS have committed suicide in the last month – and while some severely ill patients do die, studies suggest that death rates probably don’t nearly reach those in MS.
How then to explain Leonard Jason’s study which found that people with ME/CFS were not just more functionally limited than MS patients but were significantly more limited?
Jason’s web-based study included 106 people with MS and 269 people with ME or CFS who were recruited online. The DePaul Symptom Questionnaire (DSQ) and Medical Outcomes Short Forms Health Survey (SF-36) were used to assess symptom severity and functional capacity.
Insights Biomed. 2017;2(2). pii: 11. doi: 10.21767/2572-5610.10027. Epub 2017 Jun 12. Differentiating Multiple Sclerosis from Myalgic Encephalomyelitis and Chronic Fatigue Syndrome. Jason LA1, Ohanian D1, Brown A1, Sunnquist M1, McManimen S1, Klebek L1, Fox P1, Sorenson M1.
Some basic demographic factors separated the two groups; the ME/CFS group was older, less likely to be married and more likely to be on disability.
Functionally, the ME/CFS group was significantly more impaired than the MS patients. This wasn’t a case of subtle statistical differences. Except for on the emotional and mental functional scales – which were similar – the ME/CFS group scored far lower (lower is worse; higher is better in the SF-36) than the MS group.
The MS group reported twice the level of physical functioning (54 for MS, 26 for ME/CFS), scored ten times better on role physical (20.6, 2.6), were in considerably less pain (56.5, 36.0), had poor, but still greatly increased, vitality compared to the ME/CFS patients (26.3, 10.1), and were considerably less held back socially by their illness than the ME/CFS patients (54.0, 19.8).
Despite their significantly decreased functioning in all areas, the ME/CFS patients had similar “role emotional” and “role mental” scores as the MS patients.
The symptom assessments bore out the harsher world chronic fatigue syndrome (ME/CFS) patients face. Of the 54 symptoms assessed, 38 were significantly worse in the ME/CFS patients. (None were significantly worse for the MS patients.) The MS patients did experience significant post-exertional malaise but not to the extent that ME/CFS did, who generally reported about 50% higher scores.
Sleep problems where common in both diseases and, except for worsened unrefreshing sleep and insomnia in the ME/CFS group, were similar. Every pain symptom was significantly worse in the ME/CFS group. Even the neurocognitive symptoms were significantly increased in the ME/CFS group with particular issues with sensitivities to noise and bright lights.
Cort goes on to discuss the severe burden that FM also puts on patients and comments:
Remarkably, these findings have made little to no difference in the research funding each disease gets. The NIH – the biggest medical research funder in the world (@$36 billion/year) – spent $11 million on FM and $8 million on ME/CFS this year. Compare that to its spending on some of the diseases studies have shown place less of a burden on patients.
- Rheumatoid arthritis – $94 million
- Osteoarthritis – $79 million
- Multiple sclerosis – $101 million
- Lupus – $100 million
- Chronic Obstructive Pulmonary Disorder – $100 million
Two Disease Trajectories?
Clearly both FM and ME/CFS deserve much, much more funding, but ME/CFS appears to be slowly finding its way in the research world while fibromyalgia may actually be declining.