Case definition for Progressive ME

[JaimeS]

@alex3619 , that's definitely how it was for me, too: an illness at age 10, an illness at age 20, an illness at age 23, an injury at age 29... with less functionality after each.

-J

 

[JaimeS]

Though that's an impressively depressing hypothesis because everyone gets hurt/ill again eventually!

-J

 

[alex3619]

Though that's an impressively depressing hypothesis because everyone gets hurt/ill again eventually!

-J

Yes, but I do not think all illness or injury causes such a decline, and its also that I think there is an underlying problem. If we can reverse or manage that problem then this issue becomes a non issue.

 

[JaimeS]

Yes, but I do not think all illness or injury causes such a decline

I meant depressing for us...

there is an underlying problem. If we can reverse or manage that problem then this issue becomes a non issue.

True enough. But since the underlying mechanism is not well-understood, it can be viewed as a pretty dismal way of looking at it. Unfortunately, I agree with you 100% about most people's ME not being due to one, isolated infection or event.

However, I also have hope that the underlying mechanisms will be understood soon, or at least understood more fully very soon. There's a lot of impressive, promising research going on right now. Though I'm relatively new to the party, I remember there being not much out there when my mom got sick (late 80s/early 90s). Things seem to be looking up, and I am cautiously hopeful that there will be a cure - or at least a reasonable therapy that definitively and reliably mitigates the symptoms - in my lifetime.

-J

 

[Stretched]

At one point a neurologist stated, "you could have a sort of pre-MS"...

Are they inherently by-definition different, as in 'in this particular case, one would exclude the other'? This paper would argue the illnesses are remarkably similar. The list of labwork similarities makes you wonder how a clinician tells MS and ME apart.

I'm not at all arguing that they're actually the same illness, of course. But they are remarkably similar in presentation and lab data. I don't have trouble believing that MS could coexist with ME. It seems like it would be a very tiny immunological or endocrinological flip of a switch away.

-J

The argument sounds reasonable to me... . Further, why not argue 'Pre - Alzheimer's' or even staged Alzheimer's as a possibility for ME?

Alz doesn't just show up one day. If you trend line the symptom (progression) from long time PWC's it sure looks like ME could arrive as Alhzheimer's (co-morbid)? Start treatment in that direction now...?

 

[Snow Leopard]

A probable answer is not all cases of CFS and ME are due to the same underlying causes. ME itself might be due to a variety of different causes. The fact that Rituximab didn't seem to work for severe cases surely tells us something?

Sadly, everyone is scooped up and placed in the same bucket (the 'medically unexplained' bucket).

 

[JaimeS]

Just stumbled across this post:

There are some in the ME/CFS medical field that believe ME/CFS is 'MS Light' or 'Atypical MS'. Dr. Hornig alluded to this fact recently.

-J

 

[justy]

All sounds very familiar to me. Years of relatively stable relapsing remitting pattern followed by a worsening suddenly, from which I have never recovered and now since then only going downhill, with no remission days or weeks at all. I spend more and more time in bed and every little thing now exacerbates my condition. The woman in this paper is in no way remarkable...so many of us the same.

The pattern described in the paper is exactly the same as mine. I had an equivocal Babinski, have myoclonus that comes and goes, a spastic type foot problem that only happens at night and various other 'neurological' signs yet I have never even been offered an MRI. I had a CT scan a number of years ago but that seemed a waste of time to me as I don't think they can see lesions on a CT?

 

[eafw]

All sounds very familiar to me. Years of relatively stable relapsing remitting pattern followed by a worsening suddenly, from which I have never recovered and now since then only going downhill, with no remission days or weeks at all. I spend more and more time in bed and every little thing now exacerbates my condition. The woman in this paper is in no way remarkable...so many of us the same.

Exactly this for me too. This is very common for people with the condition long term, and we have the least help and the least treatments beong tested and made available for us. Another reason why it's vital to study the length of illness as a specific grouping.

 

[MeSci]

The argument sounds reasonable to me... . Further, why not argue 'Pre - Alzheimer's' or even staged Alzheimer's as a possibility for ME?

Alz doesn't just show up one day. If you trend line the symptom (progression) from long time PWC's it sure looks like ME could arrive as Alhzheimer's (co-morbid)? Start treatment in that direction now...?

Do you mean treatment for Alzheimer's? AFAIK there are no disease-modifying treatments for dementia. They only treat symptoms, unless there have been significant developments since this paper was written. But I think I would have heard about it if there had been. The paper says:

All FDA-approved treatments to AD so far have been symptomatic in nature, and their effectiveness has not been established for the long term and disease-modifying benefit of treating AD.

From my own studies of dementia, my main conclusion is that the best way to prevent development and progression of most dementias is to take care of the cardiovascular system.

There is equivocal evidence that certain kinds of mental exercise can slow decline, and that things like educational level can improve progression-free survival.

 

[heapsreal]

Research from dr nicolson has shown the longer one is ill with cfsme , the more infections they have. Im guessing that also more systems are involved and a more severe way. So i think this shows its a progressive illness.

I think thats why many infectious/immune treatments are not so much curative but more likely slow down or stop progression. Reversing this progression markedly is alot harder and probably more common in those under 3 yrs with cfsme as research seems to indicate.

 

[lansbergen]

I think thats why many infectious/immune treatments are not so much curative but more likely slow down or stop progression. Reversing this progression markedly is alot harder and probably more common in those under 3 yrs with cfsme as research seems to indicate.

But it can be done. I started the immune modulator after 10 years at the point when I was dying and then the slow improvement started.

There are probably meds out there which can do it faster.

 

[Bob]

A probable answer is not all cases of CFS and ME are due to the same underlying causes. ME itself might be due to a variety of different causes. The fact that Rituximab didn't seem to work for severe cases surely tells us something?

I'm sure that ME has at least a degree of heterogeneity. But I've been thinking about the issue of rituximab and severe cases of ME, and I wonder if severe cases might not respond well to rituximab for a variety of potential reasons. For example, if the illness has advanced and caused a more complex immune dysfunction and/or allowed co-infections to take hold (such as fungi or common viruses) then it might be quite complex to unravel all the immune dysfunction even if the underlying autoimmunity is treated. Just a thought.

 

[Bob]

Very familiar personal stories in this thread. I had relapsing/improving ME for 10 years, without any nasty complications or comorbidities, and then it took a drastic turn for the worst a year ago after reacting badly to probiotics. Now I'm almost entirely bed bound, no sign of stabilisation, and all sorts of complications, such as scary neurological symptoms, complicated IBS issues, disabling joint inflammation and widespread pain, and in need of a carer for the first time. Bloody annoying, to say the least.

 

[waiting]

In this particular case the patient's symptoms are not 100% consistent with MS.

Going from memory, I think Dr. David Bell (of the 1984 Lyndonville, New York ME cluster) said (maybe in a paper) that ME and MS were distinct diseases --

but that when you consider both testing and symptoms, there were some cases who could have been diagnosed with either one.

Those cases were in the middle of a continuum with ME at one end and MS at the other.

 

[jimells]

I spend more and more time in bed and every little thing now exacerbates my condition.

 

[JaimeS]

@justy, I'm so sorry. <3 Know that everyone here is in your support!

 

[justy]

Hey @Bob - sorry to hear of the decline in your health. 5 or so years ago I heard other longer timers on PR saying these things and was always thankful that my health didn't show progression of that kind. Unfortunately I had some kind of unexplained asthma exacerbation last year and since then I am also not able to regain ground, just keep progressing.

Anyway, just to say i'm thinking of you and sorry it's come to this for all both of us.

 

[Bob]

Hey @Bob - sorry to hear of the decline in your health. 5 or so years ago I heard other longer timers on PR saying these things and was always thankful that my health didn't show progression of that kind. Unfortunately I had some kind of unexplained asthma exacerbation last year and since then I am also not able to regain ground, just keep progressing.

Anyway, just to say i'm thinking of you and sorry it's come to this for all both of us.

Thanks so much for your thoughts, justy. Likewise, my thoughts are with you and all our other friends on this thread and the forum. It seems that many of us have had very similar experiences. I wasn't aware that so many of us had taken a turn for the worse. People often go quiet on the forum for a while and we only find out later that it's because they've taken a bad turn and symptoms have progressed. Or perhaps I miss a lot of stuff on the forum.

 

[bertiedog]

I am so sorry to hear what you have been going through @Bob and really hope that you will get some treatment that will help you and many others who suffer with this foul illness.

Pam