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Identifying Key Symptoms Differentiating ME/CFS from multiple sclerosis

Kati

Patient in training
Messages
5,497
Identifying Key Symptoms Differentiating Myalgic Encephalomyelitis and Chronic Fatigue Syndrome from Multiple Sclerosis

fulltext: https://www.ecronicon.com/ecne/pdf/ECNE-04-000085.pdf

Diana Ohanian, Abigail Brown, Madison Sunnquist, Jacob Furst, Laura Nicholson, Lauren Klebek and Leonard A Jason

EC Neurology 4.1 (2016): 41-45.
Received: December 08, 2016;
Published: December 19, 2016

Abstract

It is unclear what key symptoms differentiate Myalgic Encephalomyelitis (ME) and Chronic Fatigue syndrome (CFS) from Multiple Sclerosis (MS).

The current study compared self-report symptom data of patients with ME or CFS with those with MS.

The self-report data is from the DePaul Symptom Questionnaire, and participants were recruited to take the questionnaire online.

Data were analyzed using a machine learning technique called decision trees.

Five symptoms best differentiated the groups.

The best discriminating symptoms were from the immune domain (i.e., flu-like symptoms and tender lymph nodes), and the trees correctly categorized MS from ME or CFS 81.2% of the time, with those with ME or CFS having more severe symptoms.

Our findings support the use of machine learning to further explore the unique nature of these different chronic diseases.
 

Old Bones

Senior Member
Messages
808
Thanks for posting this, @Kati . Based on my experience, I wonder if the researchers considered duration of illness (in the case of ME) when assessing the accuracy of the decision tree used to differentiate ME from MS. The research article identified flu-like symptoms and tender lymph nodes as the strongest discriminating symptoms. Although I regularly experienced these (especially tender lymph nodes) in the early years after diagnosis, I rarely do now. This reminds me of the cytokine studies which demonstrated differing immune signatures among short and long-term ME patients.

One thing I can relate to is this: "Our results also suggest that people with ME or CFS have more severe symptom expression on the five best discriminating symptoms than people with MS." Although I have met one MS patient with rapidly-progressing illness that I wouldn't trade places with, most of the MS patients I've known have been much less-impaired than I am.
 

Kati

Patient in training
Messages
5,497
Hi @Old Bones, I think it is interesting that sore lymph nodes are discriminating ME from MS. I also find it interesting that the authors decided on this comparison group (MS) to compare with.

Personally for me it's been 8 years since onset and I still have sore lymph nodes on a daily basis. Unfortunately it's not something the doctors are too worried about.

Disclosure: I did not read the paper.
 

L'engle

moogle
Messages
3,197
Location
Canada
This seems good. A study comparing us to MS rather than depression or other psychological illness shows the thinking is changing, at least for some. (Not to show disrespect to those with major depression or psychiatric conditions, but it benefits those with all conditions to have illnesses situated in their proper context.)
 

me/cfs 27931

Guest
Messages
1,294
One thing I can relate to is this: "Our results also suggest that people with ME or CFS have more severe symptom expression on the five best discriminating symptoms than people with MS." Although I have met one MS patient with rapidly-progressing illness that I wouldn't trade places with, most of the MS patients I've known have been much less-impaired than I am.

I've often heard it said that compared to MS patients, those with ME/CFS report they are more fatigued, more functionally impaired, and have a lower quality of life. I'm not sure the original source of this.
 

Kati

Patient in training
Messages
5,497
I've often heard it said that compared to MS patients, those with ME/CFS report they are more fatigued, more functionally impaired, and have a lower quality of life. I'm not sure the original source of this.
Both MS and ME represent a spectrum of disability, from mildly affected, which allows working full time or part time, to being totally bed ridden and paralyzed. Both diseases have courses that are relapsing and remitting, while other courses are progressive and/or aggressive. Unless you have been immersed with a broad spectrum of patients with MS you can't know what it's like. I can bet you it's not fun at all and the drugs are not working either.

Oh, as an aside, ask the MS patients what they think of the Wahl's protocol and how it's worked for them? The idea that you can eat yourself out of this is smoke and mirrors.
 
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shannah

Senior Member
Messages
1,429
About a decade ago, they evaluated me for MS. I was sent to 3 neurologists and had a few MRI's as they were confused as to what was going on, with a couple of opinions stating at one point that it had to be MS.

Although I have a lot of MS type symptoms, they concluded that the brain lesions were atypical and not in the 'right' spots to be consistent with MS.

What was interesting though was the attention, care and empathetic attitude that I was receiving when it was thought I had MS. Once the diagnosis was tossed, it reverted right back to the same indifference.
 

Strawberry

Senior Member
Messages
2,107
Location
Seattle, WA USA
The research article identified flu-like symptoms and tender lymph nodes as the strongest discriminating symptoms. Although I regularly experienced these (especially tender lymph nodes) in the early years after diagnosis, I rarely do now.

Chalk me up to another one with this! My sore throat and fatigue was the biggest problem for the first 18 years. Now it is more muscular and (off and on) neuropathy. I have little problems in the last year with sickness. Its still there, but now it is much less of an issue than in the first two decades.
 

me/cfs 27931

Guest
Messages
1,294
Both MS and ME represent a spectrum of disability, from mildly affected, which allows working full time or part time, to being totally bed ridden and paralyzed.
Of course, you are correct about wide differences in individual severity.

According to my notes, in a IACFS/ME preconference video, Lucinda Bateman stated that as a population, ME/CFS patients compared to Multiple Sclerosis are more functionally impaired, more fatigued, and have a lower quality of life.

I believe this is the video link, but it no longer works.

http://forums.phoenixrising.me/inde...ence-27-30-oct-2016.47593/page-17#post-782138
 

RogerBlack

Senior Member
Messages
902
Chalk me up to another one with this! My sore throat and fatigue was the biggest problem for the first 18 years. Now it is more muscular and (off and on) neuropathy. I have little problems in the last year with sickness. Its still there, but now it is much less of an issue than in the first two decades.

And me.
Initial years intestinal problems, sore/swolen lymph nodes and migraine were common.
These days, it seems to have more or less entirely moved over to PEM and cognitive issues, with a side-helping of POTS.
Severe PEM only triggering generalised muscle pain.
 

Deepwater

Senior Member
Messages
208
My experience quite different. I am 21 years in and still suffering sore throat and flu-like symptoms very much of the time. I had a period of about 6 years in the middle when I was not so badly affected and the fluey feeling and sore throat had disappeared, then I suffered a sudden relapse due to ongoing over-exertion and it all came back and has stayed back.
 

Dolphin

Senior Member
Messages
17,567
Jason., et al. [8] used decision trees to identify which items best classify someone as a patient or control, and the most important predictive symptoms were fatigue, post-exertional malaise, sleep dysfunction and neurocognitive issues. Other symptoms such as pain, autonomic, immune and neuroendocrine symptoms were not as important.
Interesting given they matched the IoM criteria
 

Londinium

Senior Member
Messages
178
This just highlights to me how heterogeneous a condition it is, and still raises a question as to whether we there is an ME/CFS aetiology or multiple aetiologies. Speaking personally, I've never had alcohol intolerance (I still like my wine) and my painful lymph nodes can really described as a painful lymph node, as it's only ever been the left occipital node that's been a problem, none of the others have.

Given the overlap in symptoms between MS and ME, it highlights again just how dangerous the proposed NICE guidance on suspected 'functional' neurological disorders is: if you're suffering early-stage MS but your GP misdiagnoses it as ME, forget seeing a neurologist even if more 'classic' MS symptoms like weakness on one side appear. Instead of a warning flag for MS, it'll just be chalked up to your 'emotional problems'.
 
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