Multiple Sclerosis and ME/CFS - similarities, differences, misdiagnoses

Mod note: we have broadened the scope of this thread which was originally just about the possibility of having both MS and ME/CFS.

Is anyone living with both MS and ME and is there any real reason (research based) to believe that you can’t have both?

I might have both, the reason for my curiosity... I’m still in the process of being diagnosed with MS so I won’t go into things just yet. I know there’s overlap and a lot of similar fatigue with MS but I just see some major differences (like consistent PEM). This is confusing things though .

I’m curious if there are any polls or surveys on the co-occurrence of ME and autoimmune diseases...? My searches have been yielding nothing.

 

My brother has both, he has had M.E. from childhood complete with PEM which you don't get from MS. Then as an adult developed numbness/pain in his legs and from mri and spinal fluid was diagnosed with M.S. I imagine it's just the luck of the draw, having M.E doesn't prevent you developing other conditions.

 

Not that I know of.


I've never met someone who has both but have met someone who was diagnosed with ME and a few years later was diagnosed with MS. It was decided the the initial diagnosis was probably wrong as she responded well to whatever treatment she got for MS.

 

Presumably there is nothing inherent in either condition that would confer immunity to the other, so one would expect that the incidence of someone with one condition getting the other is at least the same as that of the general population.

However, given ME is currently a diagnosis of ‘exclusion’, it is presumably very much less likely to be made if another significant condition is previously or concurrently diagnosed.

Given we are also looking at potential high levels of misdiagnosis with ME, perhaps as much as 40% of both false positives and false negatives in the general ME population, where there is another potential diagnosis might we not expect these figures to increase significantly especially if there is some overlap of symptoms.

A friend with existing hypothyroidism had to battle over a number of years to get a second diagnosis of ME made. Even though there is an extant, albeit limited, literature relating to differential diagnosis here and to diagnosing concurrent ME and hypothyroidism, most people with an existing thyroid condition are likely to assume any additional ME symptoms relate to problems in getting the dosages of the thyroid medication right rather than a new condition.

This is I feel is likely to be made worse by the fact that we are only now formalising a language to describe adequately ME symptoms, such as the idea of orthostatic intolerance or distinguishing between fatiguability and PEM.

My working experience (now twenty years out of date) was that once a significant diagnosis has been made and a patient was firmly on a specific care pathway, it could be difficult to get doctors to consider additional diagnoses; GPs [passed responsibility] to the patient’s consultant, who focused primarily on their own specialism. This was then being officially recognised to some extent in relation to Learning Disability and Autism, where professionals and charities were fighting for their client groups to have equal access to all medical specialisms.

On the basis on my previous working experience with MS, and given my ME has had a relapsing and remitting course, personally I suspect if I had had MS as an existing condition I would have attributed any subsequent ME symptoms to MS.

My belief is that, though there is no reason that ME and MS can not cooccur, ME is unlikely to be diagnosed if someone already has MS. On the other hand if someone with mild to moderate ME developed MS I suspect there would be more chance of the MS being diagnosed but that the probability of this happening would reduce in proportion to the severity of the ME.

[edited for clarity]

 

I know at least 3 families with both ME and MS sufferers (and now one with ME, MS and Long COVID)!

 

I concur that it's difficult to diagnose ME if there's another diagnosis that has overlapping symptoms but has a reliable test. A member of my extended family has Crohn's disease where his symptoms are significantly more incapacitating than his specialists expect from his physical markers. We've long wondered if he also has ME - many symptoms point to this - but so far it hasn't seemed worthwhile (or possible for that matter) to pursue an additional ME diagnosis.

 

Certainly if there was a test for M.E. it would make things a lot easier. In my family's experience, every time we've developed other health problems our gp and consultants try to remove the M.E. diagnosis. Even though the new condition doesn't explain the M.E. symptoms and there's no doubt of M.E. from case history. They just don't like that diagnosis, but it's upsetting as it wipes out the whole reason we lost everything in our lives.

 

Based on the responses I’m feeling lucky to have been diagnosed with ME first. It was almost 10 years with ME before MS symptoms popped up so I have that history to refer to. I just don’t want the diagnosis to be taken away arbitrarily, it matters to me. There might be treatments for ME in the future, I might be affected differently by certain MS treatments, all that stuff. I guess it’ll become clear eventually. Hoping I can have a real conversation with my neurologist about this!

 

I have both ME and another autoimmune disorder. From comments on this forum I think that's quite common.

 

Something that's been worrying my family in regards to my brother's MS diagnosis is that the medical staff knew nothing about M.E. Is it possible to misdiagnose someone with ME with MS? Are the brain lesions and the spinal fluid proteins completely differant to those found in ME?

 

It is possible. It happened to me and also one other person I know.

MRI scans and spinal fluid proteins support diagnosis but it still requires quite a bit of clinical judgement. I don't know how specific spinal fluid proteins are; the doctors never managed to get any out of me so it was never discussed. I don't recall ever seeing a comparison between MS and ME.

ME and MS brain lesions, I read somewhere but can't remember where, can look very similar if you're just looking at a single scan but usually develop a clearer pattern if you follow them over time.

Same for the clinical picture. It can be very confusing initially but with careful observation over time you may be able to spot the difference between the fatiguability and fatigue pwMS get just as much or worse than pwME and the delayed PEM with its mix of weird symptoms. I've met quite a few pwMS and they all struggled with the former but didn't recognise PEM at all.

The complicating factor is that it probably is possible to have both even if diagnosis of both is rare, especially since many doctors consider MS an exclusionary factor. It would be devilishly difficult to figure out whether you have both, especially if you throw MS drugs and their side effects into the mix. Important though since these days you have to make decisions about drugs and exercise that may be good for MS but less so for ME. Tricky.

Back when I was misdiagnosed with MS it didn't really matter. There were no drugs for MS then except steroids for severe relapses (which I didn't get) and the main management advice was pacing!

 

Can't remember the context, but research done looking at people including ones from the Lake Tahoe epidemic found that the immune system is overactive during the first few years then becomes underactive except in a significant minority where it remained overactive. These people sometimes developed MS and psoriasis.

I was told by a registrar that I had MS but I then had a dreadful experience on the neurology ward and have had no further contact. I had been having attacks of blindness which are not usual in ME as well as other neurological things which have plagued me for years.

Because I knew people with MS I started hyperbaric oxygen treatment immediately so I do not know if that is why I have not deteriorated or if it was a misdiagnosis. Then again, I knew people who had definite MS but then never had another attack for forty years, It is a tricky illness.

Usually in MS, they feel fatigue and have trouble walking but they can keep going for hours as long as they go slowly not the sudden stop that happens with ME. As Ravn says they do not recognise PEM the way people with ME experience it.

 

As ME is currently diagnosed primarily through symptoms, I don't know how you could exclude it as a diagnosis for patients with autoimmune diagnoses, who have specific ME symptoms. If you have an MS patient with PEM and POTS, for example. Statistically, there would have to be some patients with both conditions.

Even MS is thought to be a box that includes more than one type of disease process.

 

I happened to watch a video about fatigue in MS awhile ago. The way the fatigue was described was that as the day went on someone with MS would become more fatigued and they would start to be unable to do certain activities - but that sleep would refresh them and reduce the fatigue. That's a different pattern of fatigue to ME/CFS where there's PEM of course, which typically has a delay and doesn't gradually come on throughout the day. And sleep isn't refreshing in ME. So there's two ways to help distinguish the symptoms. This is the video I watched about fatigue in MS, which I actually found pretty interesting:

https://www.youtube.com/watch?v=ZGePZXfNRcw

 

I was diagnosed with MS in 2008. It was later changed to a diagnosis of neoromyelitis optica spectrum disorder (NMOSD) because of the nature of my flare/patterns on MRI. Unlike MS, it is believed that people with NMOSD do not have progression of disease outside of what happens in flares, which usually include either or both transverse myelitis or optic neuritis. I have had 3 cases of mild transverse myelitis - It was difficult and painful and I have permanent nerve damage but I was never paralyzed as many are.

n both diagnoses, the doctors told me I was "atypical" -- for MS, I did not have the oglioclonal bands commonly seen in spinal tap, and have never had evidence of lesions in my brain, and in the case of NMOSD, I have had milder flares than most people have and I do not have the autoantibody that about 70% of people with the diagnosis have.

I was diagnosed with ME by Dr. Susan Levine in 2017 or so. I have mild-moderate ME.

The neurologist 2 years ago told me that my NMOSD seems to be in remission and I no longer needed annual or more frequent monitoring.

 

Sleep is refreshing for some of us, but it does not prevent or reduce PEM.

 

Merged thread

@Adrian, you probably already know this, but I thought I'd mention, as well as MS, there is also the potential to find suggested demyelination with ME patients. The Overview for the Canadian Consensus Criteria, https://www.mefmaction.com/images/stories/Overviews/ME-Overview.pdf page 18 indicates:

"MRI brain scans: Elevated numbers of punctuate lesions particularly in the frontal lobes and subcortical areas, suggest demyelination or edema."