Multiple sclerosis (MS) is a dreaded disease. About ten years of having chronic fatigue syndrome (CFS / ME), I still remember being tested for him and how grateful he was that I didn’t have it.
MS does things to people that EM / CFS does not. On the one hand, kill more people and in a horrible way. According to one site, the average life after a diagnosis of MS is approximately 25 to 35 years.
When people with MS die, they usually do so because they either commit suicide, or an inability to perform basic functions such as breathing or swallowing. respiratory failure, pneumonia, sepsis and / or uremia are often listed as contributing causes in their death certificates. As in ME / CFS, a bedridden state increases the risk of all this.
MS and chronic fatigue syndrome (ME / CFS) are considered one of the most fatigued diseases. In fact, for many of them with MS, fatigue is the most debilitating symptom. Alan Light’s MS / CFS / MS study suggests that people with MS may be more fatigued than people with MS / CFS, but experience much less post-effort discomfort.
It is known that MS is one of the most fatigued diseases, but ME / CFS is significantly more harmful.
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 high – two people with ME / CFS have committed suicide in the last month – and while some seriously ill patients die, studies suggest that mortality rates probably do not nearly reach those in MS.
- A Memoriam To Bob: the gentle, compassionate and wise Bob died instead of being forced into a mental institution
How then to explain Leonard Jason’s study that found that people with ME / CFS not only had more limited functionality than patients with MS but were significantly more limited?
Jason’s web-based study included 106 people with MS and 269 people with MS or CFS who were recruited online. The DePaul symptom questionnaire (DSQ) and the short form medical results survey (SF-36) were used to assess the severity of symptoms and functional capacity. Biomed Insights. 2017; 2 (2). pii: 11. doi: 10.21767 / 2572-5610.10027. Epub 2017 June 12. Differentiate multiple sclerosis from myalgic encephalomyelitis and chronic fatigue syndrome. Jason LA 1 , Ohanian D 1 , Brown A 1 , Sunnquist M 1 , McManimen S 1 , Klebek L 1 , Fox P 1 , Sorenson M 1 .
Some basic demographic factors separated the two groups; the ME / CFS group was older, less likely to marry and more likely to be disabled.
Functionally, the ME / CFS group was significantly more affected than patients with MS. This was not a case of subtle statistical differences. Except in the emotional and mental functional scales, which were similar, the ME / CFS group obtained much lower scores (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 MS / CFS), obtained a score ten times better in physical function (20.6, 2.6), suffered considerably less pain (56.5, 36.0), they had poor, but still considerably increased, vitality compared to patients with ME / CFS (26.3, 10.1), and their disease held them considerably less than patients with ME / CFS (54.0, 19.8).
Despite their significantly decreased functioning in all areas, patients with ME / CFS had similar scores of “emotional role” and “mental role” than patients with MS.
Symptom evaluations confirmed the severity of the world faced by patients with chronic fatigue syndrome (ME / CFS). Of the 54 symptoms evaluated, 38 were significantly worse in patients with ME / CFS. (None was significantly worse for patients with MS). Patients with MS experienced significant post-exertion discomfort, but not to the extent that ME / CFS did, who generally reported approximately 50% higher scores.
Sleep problems were common in both diseases and, with the exception of worse non-restorative sleep and insomnia in the ME / CFS group, were similar. Each pain symptom was significantly worse in the ME / CFS group. Even neurocognitive symptoms increased significantly in the ME / CFS group with particular problems with noise sensitivity and bright lights.
Fibromyalgia is not a walk in the park either
If studies from around the world revealed a consistent and severe pattern of disability among people with FM, the results would emphasize the importance of addressing the health burden of FM … Hoffman and Dukes 2008
A similar pattern appears in fibromyalgia. Patients with FM obtain low and high scores on the same SF-36 subscales (low: physical functioning, physical function, body pain, etc .; greater – emotional, mental) than patients with ME / CFS.
When it comes to impaired functionality, few diseases can compete with FM. In one study, FM patients had significantly more physical limitations, health problems, body aches, reduced vitality and impaired social functioning compared to people who had just had widespread pain.
People with FM had a poorer general health status than people with specific pain conditions that are widely accepted as harmful. Hoffman and Dukes 2008
Like ME / CFS, fibromyalgia is more functionally harmful than any disease it has been tested against.
A 2008 analysis of several dozen studies found that FM patients were more affected by their physical problems than people with lupus, generalized chronic pain, rheumatoid arthritis (RA) and primary Sjogren’s syndrome (SS). His vitality was significantly worse than people with lupus, RA, SS and myofascial pain syndrome. Their pain levels were worse than any other group tested.
When the SF-36 scores of patients with FM were compared with normative scores for other serious illnesses, FM went ahead (or rather late) in almost all cases. Each score of the SF-36 fibromyalgia subscale was “without exception” lower (worse) in FM patients compared to people with hypertension, heart attack and type II diabetes.
Except for the physical role, FM patients were more limited in every way because of their pain, their lower vitality, their emotional distress, their social functioning, etc., than people with chronic obstructive pulmonary disorder (COPD) and congestive heart failure.
These findings suggest that the burden of the general health status of FM is at least as large in magnitude as that of a variety of health conditions widely accepted as harmful. Hoffman and Dukes 2008
Numerous studies indicate, then, that fibromyalgia and ME / CFS are among the most difficult diseases to have. The fact that FM and ME / CFS inhibit functioning more than any other disease has been known for decades.
Surprisingly, these findings have made little or no difference in the funding of the research that each disease obtains. The NIH, the world’s largest medical research funder (@ $ 36 billion / year), spent $ 11 million on FM and $ 8 million on ME / CFS this year. Compare that to your spending on some of the diseases that studies have shown to represent a smaller 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 paths?
Clearly, both FM and ME / CFS deserve much, much more funding, but ME / CFS seems to be slowly finding its way into the world of research, while fibromyalgia may actually be declining.
ME / CFS
With the support of NIH director Francis Collins and NINDS director Walter Koroshetz, funds for ME / CFS have increased from an incredibly low $ 5 million a couple of years ago to around $ 13 million this year. Three small research centers funded by NIH research have been opened. An intensive intramural study is being conducted at the NIH research hospital.
From the Open Medicine Foundation to the Solve ME / CFS Initiative and the Simmaron Research Foundation for MERUK and Invest in ME, the ME / CFS research foundations, although quite small, with their agile research programs, are contributing important knowledge to field. They regularly conduct research symposia and workshops that bring together researchers and help collaboration.
ME / CFS finally seems to have gained some momentum. The same is not true for fibromyalgia.
ME / CFS now has, thanks to SMCI, a full-time paid advocate, in addition to ME Action, it has its own type of Act Up group that, among other things, has been participating in direct actions. Advocates have helped ensure that NIH and CDC programs have focused almost entirely on pathophysiology for years. Advocates, largely driven by expert patients, have also been reducing the mastery of CBT / GET as treatments in Europe and the United Kingdom.
The stories presented by ME / CFS now appear frequently in the media and help boost public support. The documentary Unrest and Jen Brea’s TED talk on YouTube have educated the public even more.
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 medications, something that is hard to imagine for the ME / CFS community. It also has a greater recognition of the disease, a larger population of patients and more doctors who know the disease, but it seems to be losing ground in some way.
NIH funding for FM is declining and increasingly focuses on behavioral problems. I cannot find any evidence of significant defense. I don’t know of any FM-based nonprofit research foundation. Nor do I know of international conferences that serve to bring together patients and researchers.
That is surprising, given the number of people who have FM than ME / CFS, as well as the incredibly busy Facebook sites of FM and its many bloggers. I would never guess by looking at the Facebook site or blog traffic which community is making the biggest difference in their future, but the answer is clear.
It is not clear why the ME / CFS community is moving forward right now in the way that the FM community is not (research foundations, international conferences, active defense), but it could simply be a product of chance. It may be that people focused on defense, research and collaboration previously presented themselves in ME / CFS and launched those balls.
Here is a recent example of a person who has made a difference. A famous geneticist and son of the inventor contracts ME / CFS. Five years later, that inventor, who now leads a ME / CFS research foundation with a very active outreach program, receives a $ 5 million grant from the Pineapple Foundation. Ron Davis appeared in ME / CFS.
Whatever the reason, ME / CFS needs its “sister disease” FM to thrive and produce information about pain and fatigue from which it can benefit, and FM needs ME / CFS to do the same.
Fibromyalgia has strengths that ME / CFS does not have. It has the numbers of patients to be a more powerful force for change. Pharmaceutical companies are really interested in the disease. The fact that it is an end point for patients who already have a pain disorder means that FM has the potential to attract broad support. Much, much more is known about how pain occurs 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 faster than ME / CFS.
How to roll the ball in FM? One way would be to create a group of like-minded people, create a website, start sending alerts and blogs, spread stories in the media, make yourself known in Washington and start pushing for change. The Institute of Medicine Report (now the Health and Medicine Division) made a big difference for ME / CFS. Creating a similar report on the FM research gaps and their needs would be really powerful.
How many doctors know that FM is, day by day, more difficult to treat than lupus, rheumatoid arthritis and primary Sjogren’s syndrome? How many, if asked, what disease is more difficult for their patients: MS, heart failure or ME / CFS, would they answer it correctly?
Jason’s study may be somewhat ruled out by the use of an online questionnaire, but the answer to how deeply difficult an ME / CFS disease was answered more than 20 years ago in the 1996 Harvard study by Tony Komaroff . That study, which used the same SF-36 questionnaire, found that 223 patients with ME / CFS were significantly worse in all SF-36 subscales (except emotional and mental subscales again) 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 that the National Institutes of Health (NIH) and the CDC would be surprised to exponentially increase the ME / CFS funds, but they have not done so, at least not yet. Compare the $ 100 million a year in funds that MS receives with the $ 11 million that ME / CFS makes.
However, MS is less or as prevalent as ME / CFS. Its only real drawback, and it is a real drawback, is that it is a bigger killer. As bad as MS is, ME / CFS is more likely to eliminate one from the workforce, produce disability and leave it in bed; that is, from hour to hour and day to day, ME / CFS is a more difficult disease to have.
(A case can be made for a “go slow” approach. An investigator I spoke with at the recent Brain Science meeting said moving too fast has damaged the research fields after a bad investigation that produced no results produced a negative reaction.It is probably better to move slower at the beginning in ME / CFS, build a solid research base and then really accelerate funding.With that said, the NIH moves very slowly; this field could have easily managed more than the three very small research centers funded by the NIH.)
The NIH largely ignores diseases that affect millions.
The fact that fibromyalgia is in the solution is, despite the fact that it has some real assets that ME / CFS does not have, including a good name, good name recognition and three FDA-approved medications (versus zero for ME / CFS) – You should inform the FM and ME / CFS communities about their real needs.
A better name will not necessarily put ME / CFS on a new track. Neither will an approved medication. Unfortunately, the most fundamental problems face ME / CFS and FM, the most serious of which is that the NIH has simply never adequately funded the diseases that generally do not kill, which mainly affect women, who do not have visible manifestations and They produce symptoms that historically, NIHs have never been taken seriously, such as pain and fatigue.
The NIH believes that RA, with its inflamed joints, deserves extensive funding. He believes that multiple sclerosis, with its neurological manifestations, demyelinated nerves and higher mortality rates, deserves extensive funding. He believes that lupus with its rashes, inflamed joints, kidney damage, seizures and occasional deaths deserves funding.
Clearly, he still does not believe that ME / CFS and FM, which do not visibly attack the main organ systems and largely remain mysteries, but that cause functional impairment more than MS, RA or lupus, deserve extensive funding. . If the severity of a disease were quantified by the amount of misery it produces and the economic impact it has, ME / CFS and FM would be considered very serious diseases and would be treated appropriately. Despite all the NIH talks about the need to incorporate the “burden of disease”, the burden that a disease places on society, in its financing decisions, NIHs are completely losing the risk of diseases such as EM / CFS, FM and migraine, which impose a high society costs but generally does not kill.
This can be seen more clearly in the case of migraine, a terribly painful and sometimes debilitating disease that mainly affects women, which rarely kills but produces a significant disability, and the NIH does not have enough funds. Despite being the third most common disease and the seventh most disabling disease in the world, migraine, this year, will get only a few dollars more from the NIH than chronic fatigue syndrome ($ 19-13 million).
There is something very wrong with an institution that shows no interest in some of the diseases that most affect our societies. What FM, ME / CFS, migraine and similar diseases share is a struggle for NIH and other funders to understand that they are responsible for supporting all Americans with health problems. That impaired functionality counts, and if it occurs earlier in life, thus eliminating a productive member of society for decades, it should count more than a disease that causes death at a later age. (There are statistics that quantify this). In a sense, we are asking the NIH to do the best for society and develop awareness and introduce a sense of moral responsibility in its financing decisions.