Do I have to have neurological symptoms to have ME/CFS?

[Tuha]

The last days I followed the discussions about the terms - ME, CFS, ME/CFS. I have to say that I am a bit lost. I also started to doubt if I have really ME/CFS. Our sickness is in neurologie cathegory - or it should be but actually I dont have too much neurological symptoms.

So thats why I post here my question. Do I have to have neurological symptoms to have ME/CFS?
I have ME/CFS for 10 years. First 7 years were quite OK, then I crashed and was for 1 year in bed and now I recover slowly the last 2 years.
I think I have almost all ME/CFS symptoms (except neurological and pains) like: PEM, fatigue, POTS, OI, diziness, problems with GI, higher temperature, problems with heat, sleep disorder (only during my worst periode), swallow problems...

Maybe I also have some neurological problems but I dont recognize it - I have weak muscles, they are trembeling sometimes or I have just strange muscle feeling (I can feel my face muscles), they also found myogen lesion in my muscles -EMG examination (thats why the doctors thought that i have a muscle sickness but metabolic, genetic tests and muscle biopsie didnt confirm this) - but I dont know if these muscles symptoms are neurological.
During my worst periode I sometimes couldnt find right words when I had a conversation but it was maybe because I was very tired and felt bad and dizzy so I had to lie down. I also had sometimes feeling when I was walking that I will fall dawn to the right or left. But these symptoms also disappaired now when I got better.
Its possible that I have some small problems with memory or concentration but I dont recognize it.
The problems like brain fog or other neurological problems which describe a lot of patients i dont have.

So I start to doubt a bit if I have ME/CFS. Is it possible to have ME/CFS without neurological symptoms or only with small neurological symptoms especially when the sickness is in neurologic cathegory. Are there a lot of patients like this?

 

[Esther12]

I would count stuff like POTS as being neurological... neurovascular anyway. A few of your symptoms could have a neurological cause. (Too tired to say more.... zzzzz).

 

[Merry]

Hi, Tuha.

Many of the problems you list I would say are neurological. Not being able to find the right word, problems with balance, difficulty swallowing. It is possible to have brain problems and not realize it until someone else points out the impairment to you or perhaps you might, after doing some task, go back and discover many errors.

Best of luck to you.

 

[ukxmrv]

My question would be "which criteria for ME or CFS do I best fit"?

Then once I had worked out the most appropriate criteria it should then be easier to determine if there should be any neurological problems associated with that criteria.

CFS has become in some places a wastbasket diagnosis for fatigue (like here in the UK). That fatigue could be similar to that in MS (another neurological disease), or depression or grief, or post exertional (like ME) etc etc depending on what definition you fit.

ME was originally placed in the Neurological section of the WHO manual because by 1969 the outbreaks of epidemic ME had included a lot of neurological symptoms. It was judged the best place to put it in 1969 and preceeded the idea of CFS.

Then when CFS was invented the criteria they developed went away from this existing ME description and made something new and different. Arguments started from the very beginning on the lack of neurological signs in the CFS criteria and the relationship between ME and CFS.

They continue to this day. There is a lot of argument over where CFS should be placed in the WHO manual going on now. Some people who have been diagnosed with CFS have never had a neurological workup that searches for signs and symptoms of that type. Some neurologists don't believe that CFS and ME are neurological diseases.

You say that you have ME/CFS but you didn't qualify it by including which criteria you had been diagnosed with. You may find that the criteria used to define you had no neurological symptoms listed at all. It is very controversial, especially if you have been diagnosed with CFS and not ME/CFS or ME.

Hope that helps.

 

[Tuha]

But if you fit Canadian consensus criteria - do you have ME or CFs or its just the problem that the terms are incorrect?- My understanding was that ME and CFS are the same things and what is different its just chronic fatigue which has different reasons. Just we know which kind of problems we have with the label CFS so thats why the patients want to leave CFS and the name would be ME - this is my understanding.
I think I fit CCC criteria (I was also diagnosed by KDM but I dont know which criteria he used).
I think in CCC you have except neurological symptoms next 5-6 other kind of symptoms. Now I am reading, that we should stop the term CFS and we should adopt ME - which is like neurological illness - now I ask myself, I fit almost all CCC criteria except I have only some small neurological problems (or I also described my muscles problems which are not small I think - but I dont know if these problems are neurological) - so if we will leave the term CFS - do I have ME or is it something else? Is ME diagnosed by CCC criteria.
Uf, I think I am a bit lost with all these terms

 

[ukxmrv]

No worries Tuha,

The Canadian concenus is something called ME/CFS. KDM was one of the members of the group that developed it so one would hope he would use it.... You would need to ask him if that is what he diagnosed you with and if you fully meet the criteria.

It lists as the neurological symptoms as

5. Neurological/Cognitive Manifestations: Two or more of the following
difficulties should be present: confusion, impairment of
concentration and short-term memory consolidation, disorientation,
difficulty with information processing, categorizing and word
retrieval, and perceptual and sensory disturbances?e.g., spatial instability
and disorientation and inability to focus vision. Ataxia,
muscle weakness and fasciculations are common. There may be
overload1 phenomena: cognitive, sensory?e.g., photophobia and
hypersensitivity to noise?and/or emotional overload, which may
lead to crash?2 periods and/or anxiety.

========

I've never seen a comparism of the CCC ME/CFS to ME as described by Ramsay. Would be interested to see this. We need to compare the ME that the pre-CFS docs did to the CCC version. I don't mean by one of the new people (like Byron Hyde) but by someone of Ramsay's experience (and these docs may all be dead by now). Dr Ramsay wrote a lot on ME and even a book before his death in 1990.

You are in the controversial territory and I don't know if anyone has the answer to the questions you have.

We know from comparing the criteria that hat they do not describe the same patient groups. So if not all the people in (for example) the CFS group meet the CCC definition for the CCC ME/CFS then they are not the same.

We end with then with

ME (pre CFS) and contains people already diagnosed with that or with diagnoses from doctors who worked with this
CFS (as per all the various criteria)
ME/CFS
CFS/ME

and although all these groups will have people who overlap they will also have people who don't fit any of the others. What happens to them?

The problem is in the criteria all being different so they will include people that wouldn't make another criteria. No one I think has compared any of the groups in a proper researched and publiched paper to the existing ME patients from before CFS.

All good questions. This is just my opinion. Others will think differently.

http://www.cfids-cab.org/MESA/ccpccd.pdf

 

[Tuha]

In your document I read that ME and CFS are probably the same illnesses. I would also say but I didnt read too much about ME.
Now when I see the activity to delete CFS term and adopt ME, i have these doubts. Is it the same illness when we also dont have everyone the same symptoms?
How I said I have the most of the symptoms regarding CCC except neurological (or my neurological symptoms are only small or I dont recognize them too much)
I am really bad in medicine but with my logic when a lot of doctors say that in our sickness are evident signes of a viral infection, now with xmrv findings if they would confirm it - it would be also logic that we have different symptoms and maybe not everyone has neurological symptoms - in HIV/AIDS patients work it like this - the symptoms are different.
so thats why in my case when i see that this illness will be in neurology cathegorie is a bit strange and thats why these doubts arrive