Is this still ME/CFS?

[Hoopoe]

Sometimes I doubt that I have ME/CFS because it is relatively mild.

Yesterday I had a "good day". I left the house three times, for about half an hour each. I managed to get some work and studying done, baked bread and got a little exercise in. I did not rest enough, I wanted to get things done. I was busy in some way or another most of the day, at a slow pace.

Today it feels like my energies barely recharged during sleep. I don't feel acutely unwell, just drained and a little unwell, with low motivation and interest. Thinking about doing anything demanding feels unpleasant; the tasks seem too much to bear, even if I know that in a rested state I could do them without difficulties. I skipped morning exercise but managed to 1 hour of work and studying. Now I have to lie down and it seems this won't be productive day.

The good day followed by a bad day is typical for me. With more exertion, there can be more definite unwellness, brain fog, and there can be mood changes (in particular irritability) and increased pain.

A few days ago I went hiking into the mountains, walking for 16 km, with increasing difficulty participating in conversations as time went on, and the next day was unpleasant, but not bad enough to make me want to never do it again. I also had to eat often to manage sudden drops in energy.

That said, it used to be significantly worse, especially in terms of physical capacity.

Does this still sound like ME/CFS?

 

[PeterW]

I think the wide variance between "mild" and severe ME can be very confusing. There are some who believe that mild ME and Severe ME are totally different diseases. One can understand why.

There are also people who have been severe, and then improve to mild or very mild.

For what it's worth, I suspect I am milder than you - I can work 3-4 days per week, I can travel, and I can walk 3 kms on the flat. I do get days when I am knocked out, but I am not bed-bound.

 

[Jonathan Edwards]

Does this still sound like ME/CFS?

I suspect that question is imponderable. We do not know what 'ME/CFS' is in the sense of something behind the experience, or whether it can go away at a point in time or just fade out or both.

 

[Hoopoe]

For what it's worth, I suspect I am milder than you - I can work 3-4 days per week, I can travel, and I can walk 3 kms on the flat. I do get days when I am knocked out, but I am not bed-bound.

My physical fitness is relatively good and I can do sports. It is worse than that that of a healthy person that's physically active, but maybe better than that of a healthy sedentary person of my age. It's the ability to keep going the whole day, and recover from it that is broken. I suspect even half the usual hours for 5 days a week is unsustainable.

 

[Hoopoe]

When out of the house, the bigger problem seems to be brain fog. It leads to being unable to participate in conversations because I can't keep up. In this state, I tend to become very quiet, and give yes/no answers to questions. This might be how orthostatic intolerance manifests at this level of severity.

 

[PageofME]

Very interesting, @Hoopoe! I don't recognize my illness at all in yours. Which is not the same as saying that I don't believe you have a serious chronic condition that's just as deserving of the ME/CFS label as mine. When I was mild, I also could do a lot, but when I did too much, it ended in these flu-like flares that made me think from the beginning that I had a herpes reactivation. May I ask which criteria you were diagnosed with?

 

[Trish]

We all experience ME/CFS differently and I don't think it's sensible to try to assess whether someone else has ME/CFS on the basis of a short forum post. Diagnosis should be between the person and their doctor.

To me the most important aspect is to each work out for ourselves what sort and amount of exertion is followed by symptoms and changes in function. Then we can try to gauge for ourselves what exertion we can do without after effects, and what we are prepared to suffer in order to do what we want or need to do. Whether it exactly fits any particular definition is really only relevant if we're taking part in research.

@Hoopoe, for practical purposes, i guess one question would be whether you need a confirmed diagnosis for any reason such as applying for financial support.

 

[Mij]

In the earlier years I could go out often as long as I got adequate rest for a few days in between. I never got any viruses, flu or colds. My sleep was great. I could talk and spend time on the phone without lying down. I was dx with 'atypical ME'.

Over a decade later I developed OI and experience reactivating viruses that keep me down for months. This creates significant limitations in daily functions, such as going out and processing information. I've been doing preemptive resting for decades to manage my energy before feeling exhausted. I feel much better in the evenings.

 

[PeterW]

for practical purposes, i guess one question would be whether you need a confirmed diagnosis for any reason such as applying for financial support.

There is also another major consideration which is that an ME diagnosis may have to be declared on all sorts of financial documents - e.g. Mortgage applications, insurance applications etc.

If there isn't an objective benefit for a formal diagnosis (PIP application, some future therapeutic) I would encourage people to consider whether they want the diagnosis on their health record*.

*noting that whatever the British approach may be to sharing doctor's health data, it could change, and also not everyone lives in the UK...

 

[richie]

Imponderable and the bane of a condition where the aetiology is uncertain. Logical response is "do you fit the criteria with no exclusions?" If medics are willing to give you the diagnosis then you have the power response too. Informed logic + informed power = medical authority. That's where we are at.
I hope you find some better answers. Since my "ME" presentation has several possible aetiologies I have soem freedom to "play". I was at some periods rather like you but not up for 16km hikes! and exercise intolerant (PEM????) from very early on. Have you looked for other causes?

 

[richie]

Just got most recent copy of Glisten - a glycogen storage disorder magazine. In it is an article on (Glial fibrillary acidic protein (GFAP). See below. Did an AI on GFPA and ME, Googled on sarcoidosis and GFAP found in non neurosarc patients who constantly puzzle docs with neuro type manifestations but o no focal lesions - straight to FND for some.
The article in Glisten is about GFPA in Pompe's ( lysosomal glycogen processing disease) I only carry Pompe's and it is classically autosomal recessive as to overt symptoms, but there are some, albeit few, symptomatic carriers. Lysosomal dysfunction is part of the sarc realm also. Appreciation is growing of neuro stuff in Pompe's (mainly muscular symptoms, which has properly taken the most attention up to now). But ask a full on sufferer about fatigue (even under treatment) and many will report it and also some PEM like features. GFAP in common in some?????

My point is that at some level/s cross disease pathologies may be found and these may be as important to a given subgroup of pwME as a definitive universal ME marker might be , so in answer to "Is it ME" we might say "Let's find out what it is first"! We are in a screwed up situation but it is in some ways easier for me with competing established diagnoses.



GFAP is a key structural protein that maintains the mechanical strength and integrity of astrocytes (a type of glial cell in the brain). In the context of ME/CFS, research into GFAP focuses on its potential role as a brain inflammation and autoimmune biomarker. [1, 2, 3]

The Role of GFAP in ME/CFS

• Brain Cell Activation: Astrocytes are central to the central nervous system's immune and metabolic responses. If they become overreactive or damaged, they release GFAP into the cerebrospinal fluid and blood. [1, 2]
• Neuroinflammation Indicator: Elevated brain lactate (often observed on high-resolution MRI scans in ME/CFS) points to metabolic distress, which is strongly linked to glial cell activation and the production of inflammatory cascades. [1, 2, 3]
• Autoimmune Components: Research has detected increased levels of autoantibodies directed at GFAP in some ME/CFS subgroups. This supports the hypothesis that the condition shares features of autoimmune illness, where the immune system may attack or over-stimulate healthy central nervous tissue. [1, 2]
• Diagnostic Limitations: While GFAP is a promising exploratory marker for neuroinflammation, it is not currently used as a definitive diagnostic test for ME/CFS