Very severe ME/CFS and multiple sclerosis

Hello everybody,

I have severe ME/CFS since 2016 and recently a multiple sclerosis (July 2022). I would like to point out that the previous MRIs were perfectly normal (between 2016 and 2022). Does anyone have both diseases?

I tag Jonathan Edwards (WE discussed by email in 2018)

Thanks, David

 

Thanks @Hutan

 

Salut!

I don't think there are many good answers to that, since in most cases if someone has ME, or was suspected to have ME, and gets diagnosed with MS, everything about ME would simply be chucked out and ignored from that point on. There are simply more and better resources for MS. Fatigue is a common issue, but it's difficult to tell how similar it is to ours, and whether PEM is a thing in MS or not. Brain fog sure seems to be, but it's also common from other causes, and there isn't much good knowledge about it either.

For sure a lot of people with early MS often get an incorrect diagnosis of "chronic fatigue", but there is not a lot of good clinical or scientific knowledge about this. Here we are mostly focused on ME, and Long Covid and common co-morbidities, so I think that there would be more and better answers in the MS community.

The only overlapping significance between both seem to be recent research showing that the Epstein-Barr virus (EBV) is likely the cause of MS, also a common trigger for ME/CFS, but unless it is a case of opportunistic infections affecting a latent EBV infection (almost everyone has it), so do many viruses and pathogens.

 

Do you experience periods of wellness and relapses?

I had MS r/o by a neurologist before I was given an M.E diagnosis because of a relapse.

Was your onset infectious? Sudden or gradual?

 

Hi David,

As we have discussed before, your case is unusual and not easy to analyse.
I am not sure I can add anything at this stage other than that if there is a clear diagnosis of MS then some treatments may be of use.

 

Thank you for your answers.

I developed ME/CFS when I was 15. I missed school for 2 months without anyone being able to explain why I was tired. After 2 months of rest, I resumed my studies.
My condition deteriorated until 2016 when the diagnosis was formally made in internal medicine (2 professors). I have all the symptoms of ME, one of which is not found in MS, the permanently inflamed throat and the famous post-exercise malaise.

My MS is aggressive, I have had 5 flare-ups in 1 year. (Treated by Ponesimod initially). I have more than thirty lesions in the brain and by "chance", none on the spinal cord. The last MRI showed that I had a dozen new lesions in less than a year. My neurologist switched me to Tysabri (March 2023), but I already have a new lesion and am JC positive...

They want to put me on Ocrevus but I refused because they have to give me a series of vaccines and I'm afraid that the anti CD20s and vaccinés will aggravate my ME/CFS, which is already very hard to bear...(bedridden 23 hours a day in black).

David.

 

Hi,

I don't have periods of wellness since i am very severe. It's like i have a continious flu without fever, with sore throat and PEM.

My onset at 15 was sudden, probably infectious and the progression in the very severe state was progressive.

My symptoms are so severe that sometimes, i don't notice that i am in MS flare, some MS flare are discovered by MRI..

 

Hi @Trish

Thanks for tour sympathy. Just very severe ME was awful, but the combination of ME + MS seems to be too much for me.

I crash every Time (every 28 days) i have to go to the hospital for Tysabri.

I am scared by the future ...

 

Welcome @Frenchguy sorry to hear about your situation.

Ron Davis recently talked at the investinme conference about very preliminary data that suggests that possibly 25% of ME patients may also have MS. Time from about 9-12 min on talk.
It’s something they will pursue but very early days.

https://www.youtube.com/watch?v=F6pOotJewb0

 

Hello David,

I am so sorry to hear of your duel diagnoses both at such an extreme level.

I can’t say anything knowledgeable to you on this subject. But I have often wondered how one might know if one had MS after an ME diagnosis tends to bar one from further testing. My feeling is that your situation is rare and unusual because of the aggressiveness of your MS and severe ME to match. But I think it’s very likely that a not insignificant minority of people with an ME diagnosis have MS and unfortunately having one disease makes it more, rather than less likely to develop another.

I would guess that it might be easier to get information helpful to your own specific situation by putting out the word on MS forums and organisations. Because people with an ME diagnosis are so much more likely to have been misdiagnosed and people with severe ME generally struggle to communicate and so are more likely to be isolated. I am sure you’ve already done this but I wouldn’t give up hope sending out questions in that direction. Advice on drugs will be much better informed there, perhaps MS patients with other non ME diseases may able to give a few general tips on not making one condition worse while trying address the other.

I hope someone can point you in the direction of help very soon all my best wishes for now @Frenchguy

 

Oh that’s interesting @Hutan to hear a specific example of one person experiencing that particular misdiagnosis going uncorrected over decades.

That’s a huge time span, a lifetime in which to be told by drs that “there is no treatment” if she was lucky which almost certainly she wasn’t, and would also have been treated to the ‘there is no illness either’ model so popular across the medical globe.

MS was one diagnosis my drs briefly considered-very causally and without much thought of investigation- at that time I was pushing for investigation of some new/worsening symptoms, back then I didn’t really understand why an MS diagnosis was the one that Drs were willing to contemplate over more common conditions that they were
laughing me out of the office for eg RA.

I knew nothing about the extent to which the disease MS can vary in presentation. I knew two men with very aggressive progressive rapid types. This is quite different, I think in my limited knowledge, to the more ME like symptoms that a slow progression or remitting MS could be confused for.

@Frenchguy I wonder if the larger long-COVID (Body Politic?) organisations might be able to put the word out for you, there are bound to be people with aggressive MS who developed LC perhaps even after acquiring Covid in hospital, getting treatment for anything makes any type of infection more difficult, so I can’t imagine you being alone on this one. LC of the ME like variety on top of MS would match your situation fairly well because of PEM. A shame Twitter is so much less functional now as that would have probably been the perfect place to get a lead on this. But I hear those LC Facebook groups are also useful in this regard.

I did speak to the MS UK society some years back and they were very kind and seemed to know a little bit more about ME than other organisations. They might be worth asking. Though often depends on who you get in office on any day with these enquiries.

This makes me think we need information pack’s specifically for this kind of thing at a bare minimum. At this stage we couldn’t have actual medical guidance but we could have patient experience information. Like when people fill out those questionnaires for research and charities on relapse and improvement rates for particular interventions.

I feel very angry on your and everyone else’s behalf’s that even the bare minimum is so often out of reach thanks to the dominant obstructionist BPS paradigm and the proudly touted prejudice and in-curiosity of the majority of our Drs.

This struggle for information is the last thing you need while so very sick. The injustice is indescribable.


Still minority of good researchers and clinicians will have something by way of information between them to help in some way manage even slightly better. Hopefully someone can help you discover what ever information exists as soon as possible.


Je vous souhaite bonne chance

 

Hi Frenchguy,

what symptom(s) prompted you to go for another MRI, what made you or the doctor reconsider and think it could be MS? I am a very severe mecfs case myself and have a very "neurological" set of symptoms. I am very sorry for everything you have to go through!

Thank you!