Multiple sclerosis (MS) is a dreaded disease. After about ten years of chronic fatigue syndrome (CFS / ME), I still remember being examined and how grateful I was to not have it.
MS does things to people that EM / CFS doesn’t do. 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 around 25 to 35 years.
When people with MS die, they usually do so because they commit suicide or cannot 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 tired 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 tired than people with MS / CFS, but experience much less discomfort after exercise.
MS is known to be one of the most tired diseases, but ME / CFS is much more harmful.
The scientific literature suggests that many people with ME / CFS reach a plateau at some point while a subset worsens over time. Suicide rates seem high – two people with ME / CFS have committed suicide in the past month – and although some critically ill patients die, studies suggest that death rates are probably not nearly as high as those of SEP.
- 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 revealed that people with ME / CFS not only had more limited functionality than patients with MS, but were significantly more limited?
Jason’s online study included 106 people with MS and 269 people with MS or CFS who were recruited online. The DePaul symptom questionnaire (DSQ) and the abbreviated medical results survey (SF-36) were used to assess the severity of symptoms and functional capacity. Biomedical Perspectives 2017 2 (2). pii: 11. doi: 10.21767 / 2572-5610.10027. Online June 12, 2017. 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 .
Certain 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. It was not a case of subtle statistical differences. With the exception of the emotional and mental functional scales, which were similar, the ME / CFS group obtained much lower scores (lower is worse; higher is better in SF-36) than the MS group.
The MS group reported twice the level of physical functioning (54 for MS, 26 for MS / CFS), scored ten times better on physical function (20.6, 2.6), suffered considerably less pain (56.5, 36.0 ), had a poor but still significantly higher vitality compared to patients with ME / CFS (26.3, 10.1), and their disease retained 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 “emotional role” and “mental role” scores similar to those of patients with MS.
Symptom assessments have confirmed the gravity of the world faced by patients with chronic fatigue syndrome (ME / CFS). Of the 54 symptoms assessed, 38 were significantly more severe in patients with ME / CFS. (None were significantly worse for MS patients). MS patients experienced significant discomfort after exercise, but not as much as ME / CFS, which generally reported scores about 50% higher.
Sleep problems were common in both diseases and, with the exception of the worst 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 of sensitivity to noise and bright lights.
Nor is fibromyalgia a walk in the park
If studies around the world revealed a pattern of constant and severe disability in people with FM, the results would underline 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, patients with FM had significantly more physical limitations, health problems, body aches, reduced vitality and impaired social functioning compared to people who had just experienced widespread pain.
People with FM had worse overall health than people with specific pains that are widely accepted as harmful. Hoffman and Dukes 2008
Like ME / CFS, fibromyalgia is more functionally harmful than any disease for which it has been tested.
A 2008 analysis of dozens of studies found that FM patients were more affected by their physical problems than people with lupus, generalized chronic pain, rheumatoid arthritis (RA) and Sjogren’s syndrome (SS). ) primary. His vitality was much worse than that of people with lupus, RA, SS and myofascial pain syndrome. His pain level was worse than any other group tested.
When the SF-36 scores of patients with FM were compared with the normative scores for other serious diseases, FM continued (or rather late) in almost all cases. Each score in the SF-36 fibromyalgia subscale was “without exception” lower (worse) in patients with FM compared to people with hypertension, heart attack and type II diabetes.
With the exception of the physical role, patients with FM were more limited in all aspects due to their pain, less vitality, emotional distress, social functioning, etc., than people with lung disorder. chronic obstructive pulmonary disease (COPD) and congestive heart failure.
These results suggest that the overall health burden of FM is at least as large as that of a variety of health conditions widely accepted as harmful. Hoffman and Dukes 2008
Therefore, many studies indicate 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 results have made little or no difference in the funding of research that each disease obtains. The NIH, the world’s largest funder of medical research (@ $ 36 billion / year), spent $ 11 million on FM and $ 8 million on ME / CFS this year. Compare that to your expenses for some of the illnesses that studies have shown are 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 pathways of illness?
Obviously, both FM and ME / CFS deserve much, much more funding, but ME / CFS seems to be slowly making its way into the world of research, while fibromyalgia may be in decline.
ME / CFS
With the support of NIH director Francis Collins and NINDS director Walter Koroshetz, funding for ME / CFS has grown from an incredibly low level of $ 5 million a few years ago to about $ 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 very small, with their agile research programs, bring important knowledge in the field. They regularly organize research symposia and workshops that bring together researchers and encourage collaboration.
The ME / CFS finally seems to have gained momentum. The same is not true for fibromyalgia.
ME / CFS now has, thanks to SMCI, a full-time paid defender, in addition to ME Action, it has its own type of group Act Up which, among other things, takes part in direct actions. The lawyers helped ensure that the NIH and CDC programs focused almost entirely on pathophysiology for years. Lawyers, largely led by expert patients, have also reduced the mastery of CBT / GET as a treatment in Europe and the United Kingdom.
The stories presented by ME / CFS now appear frequently in the media and help build public support. The documentary Unrest and Jen Brea’s TED talk on YouTube educated the audience even more.
ME / CFS has a very long way to go to reach parity, but for the first time in years, it has some momentum.
FM has three FDA-approved drugs, which is hard to imagine for the ME / CFS community. He also has greater recognition of the disease, a larger patient population and more doctors who know the disease, but he seems to be losing ground in one way or another.
NIH funding for FM is shrinking and increasingly focusing on behavioral issues. I find no significant defense evidence. I am not aware of any non-profit research foundation based on FM. I also don’t know of international conferences that bring together patients and researchers.
This is surprising, given the number of people who have FM more than ME / CFS, as well as the incredibly busy Facebook sites of FM and its many bloggers. I would never guess looking at the Facebook site or blog traffic which community is making the biggest difference in their future, but the answer is clear.
It’s unclear why the ME / CFS community is advancing right now unlike the FM community (research foundations, international conferences, active advocacy), but it could just be a coincidence. Defense, research, and collaboration people may have already appeared in ME / CFS and launched these bullets.
Here is a recent example of someone who has made a difference. A famous geneticist and son of the inventor signs an ME / CFS contract. Five years later, this inventor, who now runs an 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 FM “sister disease” to thrive and produce information about the pain and fatigue it can benefit from, and FM needs ME / CFS to do the same.
Fibromyalgia has strengths that ME / CFS does not have. It has the number of patients to be a more powerful force for change. Pharmaceutical companies are really interested in the disease. The fact that this is an end point for patients who already have a pain disorder means that FM has the potential to attract broad support. Much more is known about how pain occurs than fatigue, and pharmaceutical companies are interested in FM; They are not at all interested in ME / CFS. With a little 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 like-minded group, create a website, start posting alerts and blogs, spread media stories, get your name out there in Washington and start lobbying. for the change. The report from the Institute of Medicine (now the Health and Medicine division) made a big difference for ME / CFS. Creating a similar report on the gaps in FM research and their needs would be really powerful.
How many doctors know that FM is more difficult to treat day by day than lupus, rheumatoid arthritis and primary Sjogren’s syndrome? How many, if asked, which disease is most difficult for their patients: would MS, heart failure, or ME / CFS respond correctly?
Jason’s study may be somewhat excluded by the use of an online questionnaire, but the response to the difficulty with which an ME / CFS disease was answered more than 20 years ago in the Harvard study from 1996 by Tony Komaroff . This 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) than people with MS (n = 25), heart attack (n = 107), congestive heart failure (n = 216), diabetes mellitus (n = 163) and hypertension (n = 2809).
These are shocking figures. You would think that the National Institutes of Health (NIH) and the CDC would be surprised to increase the ME / CFS funds exponentially, but they haven’t, at least not yet. Compare the $ 100 million a year that MS receives with the $ 11 million that ME / CFS earns.
However, MS is less or as common as ME / CFS. His only real downside, and it’s a real downside, is that he’s a bigger killer. As bad as MS is, ME / CFS is more likely to kill a staff member, produce a disability and leave them in bed; that is, hour by hour and day by day, ME / CFS is a more difficult disease to have.
(You can argue for a “go slow” approach. An investigator I spoke to at the recent Brain Science meeting said that going too fast has damaged research areas after poor survey that did not produce any results produced a negative reaction. It is probably better to go slower at the start in ME / CFS, build a solid research base, and then really speed up funding. However, the NIH evolve very slowly ; this area could easily have managed more than the three very small research centers funded by the NIH.)
The NIH largely ignores the diseases that affect millions of people.
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 drugs (against zero for ME / CFS) – You must inform the FM and ME / CFS communities of their real needs.
A better name will not necessarily put ME / CFS on a new track. Nor will an approved drug be approved. Unfortunately, the most basic problems facing ME / CFS and FM, the most serious of which is that the NIH has simply never adequately funded diseases that do not usually kill, which mainly affect women, who do not have no visible manifestations and produce symptoms that historically, NIH have never been taken seriously, such as pain and fatigue.
The NIH believes that RA, with its inflamed joints, deserves significant funding. He believes that multiple sclerosis, with its neurological manifestations, demyelinated nerves and higher mortality rates, deserves significant funding. He believes that lupus with its rashes, inflamed joints, kidney damage, seizures and occasional death is worth funding.
Clearly, he still does not believe that ME / CFS and FM, which do not visibly attack major organ systems and remain largely a mystery, but which cause more functional problems than MS, RA or lupus, deserve significant 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 illnesses and would be treated appropriately. Despite all the NIH who speak of the need to incorporate the “burden of disease”, the burden that a disease places on society, in its funding decisions, the NIH completely lose the risk of diseases such as EM / CFS , FM and migraine, which impose a high cost on society but generally do 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 handicap, and the NIH does not have enough funds. Although it is the third most common disease and the seventh most disabling disease in the world, migraine this year will only receive 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 illnesses share is a struggle for the NIH and other funders to understand that they are responsible for supporting all Americans with health problems. This 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 an older age. (There are statistics that quantify this). In a sense, we ask the NIH to do their best for society,