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.
- A Memoriam To Bob – Gentle, compassionate, wise Bob died rather than being forced into a mental institution
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.
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.
Fibromyalgia Is No Walk in the Park Either
If studies from around the world were to reveal a consistent and serious pattern of impairment among people with FM, findings would stress the importance of addressing the health status burden of FM…. Hoffman and Dukes 2008
A similar pattern shows up in fibromyalgia. FM patients score low and high in the same SF-36 subscales (low: physical functioning, role physical, body pain, etc.; higher – emotional, mental) as ME/CFS patients.
When it comes to impaired functionality, few diseases can compete with FM. In one study, FM patients had significantly more physical limitations, impaired health, body pain, reduced vitality and impaired social functioning compared to people who just had widespread pain.
People with FM had a poorer overall health status than people with specific pain conditions that are widely accepted as impairing. Hoffman and Dukes 2008
A 2008 analysis of several dozen studies found that FM patients were more impaired by their physical problems than people with lupus, chronic widespread pain, rheumatoid arthritis (RA) and primary Sjogren’s Syndrome (SS). Their vitality was significantly worse than people with lupus, RA, SS and myofascial pain syndrome. Their pain levels were worse than every other group tested.
When FM patients’ SF-36 scores were compared to normative scores for other serious diseases, FM came out ahead (or rather behind) in almost every instance. Every fibromyalgia SF-36 subscale score was “without exception” lower (worse) in FM patients compared to people with hypertension, heart attack and type II diabetes.
Except for role physical, FM patients were more limited in every way by their pain, by their lower vitality, by their emotional distress, by their social functioning, etc., than people with chronic obstructive pulmonary disorder (COPD) and congestive heart failure.
These findings suggest that the overall health status burden of FM is at least as great in magnitude as that of a variety of health conditions widely accepted as impairing. Hoffman and Dukes 2008
Numerous studies indicate, then, that fibromyalgia and ME/CFS are amongst the most difficult of all diseases to have. The fact that FM and ME/CFS inhibit functioning more than just about any other disease has been known for decades.
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.
With support from NIH Director Francis Collins and NINDS director Walter Koroshetz, funding for ME/CFS has climbed from an unbelievably low $5 million a couple of years ago to about $13 million this year. Three small NIH research-funded research centers have opened. A intensive intramural study is underway at the NIH’s research hospital.
From the Open Medicine Foundation to the Solve ME/CFS Initiative to the Simmaron Research Foundation to MERUK and Invest in ME, ME/CFS research foundations, while quite small, are, with their nimble research programs, contributing important insights to the field. They regularly hold symposiums and research workshops which bring researchers together and aid collaboration.
ME/CFS now has, thanks to the SMCI, a full-time paid advocate, plus with ME Action, it has its own kind of Act Up group which, among other things, has been engaging in direct actions. Advocates have helped ensure that the NIH and CDC programs have been almost entirely focused on pathophysiology for years. Advocates, largely driven by patient experts, have also been nipping away at CBT/GET’s dominance as treatments in Europe and the U.K.
Stories featuring ME/CFS now frequently appear in the media and help drive public support. The documentary Unrest and Jen Brea’s YouTube TED talk have further educated the public.
ME/CFS has a long, long way to achieve parity, but for the first time in years, it has some momentum.
FM has three FDA approved drugs – something it’s hard for the ME/CFS community to even imagine. It also has greater disease recognition, a larger patient population and more doctors that know about the disease, but it appears to be losing ground in some ways.
NIH funding for FM is declining and is focused more and more on behavioral issues. I can’t find any evidence of significant advocacy. I’m not aware of any non-profit research foundations focused on FM. Nor do I know of international conferences that serve to bring patients and researchers together.
That’s surprising, given how many more people have FM than ME/CFS as well as FM’s incredibly busy Facebook sites and its many bloggers. You would never guess looking at the Facebook site or blog traffic which community is making the bigger difference in its future, but the answer is clear.
Why the ME/CFS community is moving forward right now in ways the FM community is not (research foundations, international conferences, active advocacy) is not clear, but it could simply be a product of chance. It may be that individuals focused on advocacy, research and collaboration showed up earlier in ME/CFS and got those balls rolling.
Here’s a recent example of an individual who has made a difference. A famous geneticist and inventor’s son comes down with ME/CFS. Five years later, that inventor, now leading an ME/CFS research foundation with a very active outreach program, receives a $5 million dollar grant from the Pineapple Foundation. Ron Davis just happened to show up in ME/CFS.
Whatever the reason, ME/CFS needs its “sister disease” FM to thrive and produce insights into pain and fatigue that it can benefit from and FM needs ME/CFS to do the same.
Fibromyalgia has strong points that ME/CFS does not have. It has the patient numbers to be a more powerful force for change. Pharmaceutical companies are actually interested in the disease. The fact that it’s an endpoint for patients who already have a pain disorder means FM has the potential of attracting widespread support. Much, much more is known about how pain is produced than fatigue, and pharmaceutical companies are interested in FM; they are not interested in ME/CFS at all. With some more help, FM has the potential to move more quickly than ME/CFS.
How to get the ball rolling in FM? One way would be to create a group of like-minded people, create a website, start pounding out alerts and blogs, get stories out to the media, become known in Washington and start pushing for change. The Institute of Medicine Report (now the Health and Medicine Division) made a huge difference for ME/CFS. Creating a similar report on the gaps in FM research and its needs would be powerful indeed.
How many doctors know that FM is, from day to day, more difficult to deal with than lupus, rheumatoid arthritis and primary Sjogren’s Syndrome? How many, if given the question – which disease is harder on its patients: MS, heart failure or ME/CFS – would answer it correctly?
Jason’s study may be discounted a bit by its use of an online questionnaire, but the answer to how profoundly difficult a disease ME/CFS is was answered over 20 years ago in Tony Komaroff’s 1996 Harvard study. That study – which used the same SF-36 questionnaire – found that 223 ME/CFS patients were significantly worse off on all the SF-36 subscales (except again the role emotional and mental subscales) than people with MS (n=25), heart attack (n=107), congestive heart failure (n=216), diabetes mellitus (n=163) and hypertension (n=2,809).
Those are shocking figures. One would think they would shock the National Institutes of Health (NIH) and CDC into exponentially increasing ME/CFS funding, but they haven’t – not yet – at least. Compare the $100 million a year in funding MS receives with the $11 million ME /CFS does.
Yet MS is either less, or about as prevalent, as ME/CFS. Its only real downside – and it is a real downside – is that it’s a bigger killer. As bad as MS is, ME/CFS is more likely to knock one out of the work force, produce disability, and leave one bedridden; i.e. from hour to hour and day to day, ME/CFS is a tougher disease to have.
(A case can be made for a “go slow” approach. A researcher I talked to at the recent Brain Science meeting said that moving too fast has damaged research fields after bad research which failed to produce results produced a backlash. It’s probably better to move slower at first in ME/CFS, build up a strong research foundation, and then really accelerate the funding. That said, the NIH is moving very slowly; this field could easily have handled more than the three very small research centers the NIH funded.)
The fact that fibromyalgia is in the fix it is, despite the fact that it has some real assets that ME/CFS does not – including a good name, good name recognition and three FDA-approved drugs (vs. zero for ME/CFS) – should tell both the FM and ME/CFS communities something about their real needs.
A better name will not necessarily put ME/CFS on a new track. Nor will an approved drug. More fundamental problems, unfortunately, face ME/CFS and FM – the most serious of which is that the NIH simply has never appropriately funded diseases which do not generally kill, which mostly affect women, which have no visible manifestations and which produce symptoms which the NIH has historically never taken seriously, like pain and fatigue.
The NIH believes RA, with its swollen joints, deserves ample funding. It believes multiple sclerosis, with its neurological manifestations, demyelinated nerves and increased death rates, deserves ample funding. It believes lupus with its rashes, swollen joints, kidney damage, seizures and occasional deaths, deserves funding.
It clearly does not yet believe that ME/CFS and FM – which do not visibly attack major organ systems and largely remain mysteries – but which cause more functional impairment than MS, RA or lupus – are worthy of ample funding. If the seriousness of a disease was quantified by the amount of misery it produces and by economic impact it has, ME/CFS and FM would be deemed very serious diseases indeed, and treated appropriately. For all the NIH’s talk about the need to incorporate “illness burden” – the burden a disease places on society – into its funding decisions, the NIH is completely missing the boat on diseases like ME/CFS, FM and migraine, which impose high societal costs but generally do not kill.
That can be most clearly seen in the case of migraine – a horribly painful and at times debilitating disease which mostly affects women, which rarely kills but produces significant disability – and is vastly underfunded by the NIH. Despite being the third most common disease and the seventh most disabling disease in the world, migraine, this year, will get just a few more dollars from the NIH than chronic fatigue syndrome ($19-13 million).
There’s something very wrong with an institution which doesn’t show interest in some of the diseases that impact our societies the most. What FM, ME/CFS, migraine and similar diseases share is a fight to get the NIH and other funders to understand that they are responsible for supporting all Americans with health issues. That impaired functionality counts, and if it occurs earlier in life – thus removing a productive member from society from decades – it should count more than a disease which causes death at a later age. (There are statistics which quantify this.) In a sense, we’re asking the NIH to do what’s best for society and to grow a conscience and introduce a sense of moral responsibility into its funding decisions.