Is MS a Single Disease?

[Merry]

Because the symptoms and disease progression vary so much in MS, researchers have wondered if it is a single disease or multiple diseases.

Researchers in Barcelona, Spain, created mathematical models of disease processes using data that had been collected on 66 patients over the course of 20 years. According to an article published yesterday at Medscape, the results of their research supports their hypothesis that MS is a single disorder.

Ekaterina Kotelnikova of the IDIBAPS - University of Barcelona, Spain, and colleagues hypothesized that MS is a single disease with multiple results in patients, all driven by the same underlying biological mechanism: immune system attack of the protective fibers shielding nerve cells and loss of the axons used by nerve cells to communicate with each other.

To explore this hypothesis, the researchers developed a mathematical model of MS based on experimental data from 66 patients who had been followed for up to 20 years. Using the model, they were able to perform computational simulations of the different known biological processes involved in a second group of 120 MS patients.

They found that, by changing the intensity of the underlying biological processes involved in MS at distinct times, they were able to successfully reproduce the variability of disease courses seen in these patients.

These results support the hypothesis that that all the symptoms and disease courses observed in MS patients are produced by the same underlying mechanisms that damage nerve cells over time. This implies that, even though it may follow different patterns, MS will worsen over time for all patients.

Bolding is mine.

Read the original paper published at PLOS Computational Biology here.

 

[IrisRV]

So, can we use this to postulate a similar situation for ME/CFS -- that this too is a single disease despite the variability? Could the variability be only a difference in the "intensity of the underlying biological processes" (whatever that means) at different times? Does Ron Davis' work support the hypothesis that all our symptoms and disease courses "are produced by the same underlying mechanisms"?

I know there has been some speculation that ME/CFS might be the same end result from a variety of disease processes or bodily insults. That is clearly a different hypothesis. It has, however, some good reasoning behind it.

If we postulate a single disease process despite the variability, where does that take us, if anywhere?

Hopefully not to the conclusion that ME/CFS will worsen over time for all patients!

 

[Merry]

Good questions, @IrisRV. I was wondering when I read the article if the same computational simulations will ever be run on data from ME/CFS patients. Does longitudinal data on many ME/CFS exist at present?

I was surprised to discover that the question about whether MS is one disease or a multitude has not been settled.

The final paragraph of the article perhaps answers your "where does that take us, if anywhere." But wait -- you are talking about ME/CFS rather than MS. Anyway, here's the conclusion about the therapeutic implications of the research for MS patients:

"This concept has significant therapeutic implications and will drive the development of new therapies because it implies that MS will produce significant disability if suffered for enough time in all patients," says co-author Dr. Pablo Villoslada, Head of the IDIBAPS research group in Pathogenesis and new treatments in multiple sclerosis and coordinator of the study. "Indeed, preventing relapses, although very important, will be not enough to achieve good control of the disease.

I bolded the final sentence in the quotation in my first post because I often wonder about disease progression in ME/CFS. Over nearly five decades of illness I've become progressively worse. Three ME/CFS patients that I have kept in touch with for five years or so are all worse now than when I met them. What does the data in this paragraph signify? Next to nothing. But, crone that I am, I'm here to warn you all of a possible fate. Take care.

 

[IrisRV]

I bolded the final sentence in the quotation in my first post because I often wonder about disease progression in ME/CFS. Over nearly five decades of illness I've become progressively worse. Three ME/CFS patients that I have kept in touch with for five years or so are all worse now than when I met them. What does the data in this paragraph signify? Next to nothing. But, crone that I am, I'm here to warn you all of a possible fate. Take care.

I think along the same lines, but I admit I have little more than gut feeling to back it up. While I have had significant improvement over time, it's from symptomatic treatment, not changing the core of the disease. I feel that the disease is progressing, but I'm getting good enough treatment that we have slowed the progression, possibly by avoiding big crashes.

It's not a happy thought that long-term progression is inevitable, at least until the root of the disease can be treated which won't be in my lifetime. Nowadays my goal is to keep progression as slow as possible so that natural death catches up to me before complete disability does.

 

[Merida]

I had a wonderful experienced neurologist who prescribed 4 amino pyridine. This has been used in MS, but he thought it might help me.
He thought it might help my fatigue. I got stomach upset and gave up, but there are very few/ no side effects listed for this med.

 

[Merida]

One more comment: I attended an all day MS conference connected to a large university hospital. It was interesting that MS, CFS, and FMS all have the same symptoms, but there is individual variation in each group.

 

[Zapped]

If we postulate a single disease process despite the variability, where does that take us, if anywhere?

Hopefully not to the conclusion that ME/CFS will worsen over time for all patients!

In 30+ years as a PWC, my own condition has progressively declined. Further, anecdotally I don’t read of a single other long term PWC’s condition improving (in total) IMO, at best ME conditions are like a sine wave (with limits).

 

[IrisRV]

IMO, at best ME conditions are like a sine wave (with limits).

I'm inclined to agree, in general. I have to say, though, that I am much improved from my worst, so while I have ups and downs in the relative short term, if I'm declining, it's slowly at the moment. It seems to me that every time I crash, I don't quite get back to my original baseline, so I am religious about pacing.

My daughter, who was toward the severe end of moderate at her worst, has improved steadily and is now about 85% functionality. She still has PEM, but she can accomplish ordinary things without going over her PEM threshold. No competitive sports, but some athletic activity if she has control over how much energy she expends and when she rests.

 

[Zapped]

@IrisRV It’s encouraging to hear of your upswing from earlier lows. Otherwise, your
description kind of parallels my own. I’ve overdone it many times over the years and have
had to pay. Now, older I can’t even consider stressful activities, and many more things look
stressful!

I feel for younger people who are handicapped with CFS. I’ve had a personal groomer whose
25-year-old daughter has had this stuff since she was 19. She’s probably at 50%, and vacillates. This youth has really missed out on some major opportunities, e.g. schooling, career, etc. Your’s at 85% is terrific! While hard to do at that age definitely encourage her to moderate her pace. Maybe she’s young enough not to follow a declining path.

 

[Merida]

Sure sounds viral. Like my son - definite EBV at age 5/ 1986. Improved over many years. But currently, still has symptoms, fatigue, and just doesn't feel "right."

We have all worked very hard to try and understand what on Earth is going on here, but still such a mystery for 99.9 per cent.

 

[IrisRV]

@Zapped, I crashed and burned to bedbound after significantly overdoing. It took about 8 years of intensive treatment to sloooowly move from bedbound, to chairbound, to housebound, to able to leave the house on my own for very minor activities. Then another 3-4 to get me where I am now where I can go out but have to use a power wheelchair for any distance. I'm nowhere near my pre-crash baseline still.

I knew before the big crash that the overdoing cycle was very slightly decreasing my capability, but it was so small each time that I remained most in denial when I wanted to do that one littlle thing. Now I know better and am religious about my treatments and pacing. Now I'm maintaining or maybe gaining a bit over time.

My daughter developed ME at 12yo. She saw me crash and burn to bedbound and, she says, sometimes unable to carry on a coherent conversation. So she is very aware of the limits of ME.

So while as Mom, I'd ask her to do a bit less now, she's been doing fine -- not even flares. She just got a EBV reactivation, so we'll see where that leads, but from an ME perspective she's doing well.

There's some history of those who got ME at an early age having a better outcome, so I hope that's the case with her. She is still under the care of an ME/CFS specialist, so we hope they'll catch anything going wrong before it gets too bad (like the ebv). We can only hope that's good enough.

 

[Zapped]

@Zapped, I crashed and burned to bedbound after significantly overdoing. It took about 8 years of intensive treatment to sloooowly move from bedbound, to chairbound, to housebound, to able to leave the house on my own for very minor activities. Then another 3-4 to get me where I am now where I can go out but have to use a power wheelchair for any distance. I'm nowhere near my pre-crash baseline still...

So while as Mom, I'd ask her to do a bit less now, she's been doing fine -- not even flares. She just got a EBV reactivation, so we'll see where that leads, but from an ME perspective she's doing well.

There's some history of those who got ME at an early age having a better outcome, so I hope that's the case with her. She is still under the care of an ME/CFS specialist, so we hope they'll catch anything going wrong before it gets too bad (like the ebv). We can only hope that's good enough.

Darn, an 8-year crash...slow recovery to up, still down... . That’s pretty rough but it sounds like you’re doing as well as could be reasonably hoped for. And, you all have a Specialist - better off than many others. Keep smokin’