Poll: Do you have Myalgic Encephalomyelitis (ICC)

[Irat]

It's possible that it's both.

However, muscles becoming easily fatigued and baseline sickness fatigue, happen with the flu also. The sickness response don't explain the immune activation in the body though. Which I think causes the mito.issues and triggers the sickness response.

What does baseline mean to you ?I never feel baseline,like I did in the beginning.,there I also did kind of bounce back,now not anymore.

 

[Martin aka paused||M.E.]

I can add perhaps that I'm fatigued in sense of tiredness when I crash... As if I have had no sleep for 24 hrs and sleep 16-20 hrs.

 

[wabi-sabi]

What does baseline mean to you ?

For me it means where I spend most of my time now. It doesn't by any means mean my pre-illness normal.

I spend most of the day horizontal on the sofa. I can walk about 900 steps per day. That's my baseline and I get worse when I crash.

 

[BrightCandle]

I feel tired all the time, I am wired and not able to sleep properly and I also feel fatigued in my body like my muscles have just completed a marathon. But I also feel poisoned and/or sick like I have an infection like a bad cold. When I crashed I get severe blinding headaches, the muscle fatigue gets substantially worse and my back and other joints hurt as well as a few pain points.

 

[Strawberry]

This is a fascinating discussion. I like how we are debating fatigue, as I think this is the point where I lost my dr.

I have satisfied the ICC criteria for decades, but I don't have any "fatigue".
I have muscle weakness and cognitive dysfunction.

So now I have to ask, do you have true muscle weakness? I told my dr I had muscle weakness, and he had me squeeze his hand. He said my muscles were fine as I have a good grip and can lift a heavy box. Once. But I feel extremely weak compared to what I used to be. My muscles fatigue far quicker than they used to, although I’m nowhere near as sick as I used to be. Gingergirl used to not be able to open a water bottle or the door. I would define that as muscle weakness, but I’m never sure.

With sickness type fatigue, mine is minimal now. With muscle fatigue, it’s horrible now. I used to be able to hike and bike and be very physically active on weekends. I was horribly sick all week though. Now I can barely lift a finger and rarely leave the house on weekends or my body and brain doesn’t function well.

So I believe we have three types of fatigue. Flue fatigue, I worked out far too hard at the gym muscle fatigue, and brain fatigue.

Circadian rhythm disruptions are a well-known symptom of ME/CFS, and there is no easy solution, unfortunately. It is a subject that has been talked about on these forums quite a bit.

But we are talking this thread off topic.

But is it off topic? It’s part of the ICC and I don’t see it any different from debating fatigue.

 

[Martin aka paused||M.E.]

When I crashed I get severe blinding headaches

Same here. I wonder if it has to do a) hypoxia of b) glutamate

 

[wabi-sabi]

But is it off topic? It’s part of the ICC and I don’t see it any different from debating fatigue.

Well lack of sleep is going to have a bad impact. What I'm trying to tease apart is the sleep deprived feeling from the fatigue feeling. On the few times I am able to get sleep the sleep deprived feeling goes away. The fatigue doesn't exactly.

 

[Strawberry]

Well lack of sleep is going to have a bad impact. What I'm trying to tease apart is the sleep deprived feeling from the fatigue feeling. On the few times I am able to get sleep the sleep deprived feeling goes away. The fatigue doesn't exactly.

So true!

 

[hapl808]

Same here. I wonder if it has to do a) hypoxia of b) glutamate

Same. I've leaned toward glutamate (or GABA balance or dopamine or something like that) rather than hypoxia because things like Wim Hof only seem to make a slight difference. If it were hypoxia, I would think it might show up in an oximeter or improve with deep breathing or meditation. But of course could be some intracellular issue that isn't controlled by the CNS.

 

[hapl808]

Also what makes me lean toward glutamate - I've always reacted somewhat to MSG, but I noticed coincidentally that when I declined to more moderate and then severe, ingesting something with MSG induced a terrible crash similar to overdoing it. Often would take many days to recover.

 

[iliketoread]

This has been very interesting to read the different experiences on this.

I wonder if those who say they don't have fatigue would say yes they have insufficient energy which is how I see PEM described by the ICC in the attachment "inability to produce sufficient energy". I mean fatigue and insufficient energy seem like the same thing to me, but I can see how some people might say yes they have insufficient energy without the heavy feeling of fatigue. Does everyone have insufficient energy or would some say no problem I have sufficient energy?

I find it really interesting to hear other people who also have the sick feeling. The sick feeling is in my top 3 worst problems and no one seems to have any clue what I'm talking about. It varies in intensity, and is something like feeling poisoned and toxic severely unwell. The sick feeling for me is tied into fatigue. If the sick feeling increases my heavy fatigue also increases. The more sick I feel, the more I feel the need to rest and at least lie down bc of insufficient energy.

 

[Viala]

So, based on this I do have ME, no surprise Is this diagnostic criteria official, recognized by NHS, WHO or any other country healthcare system, meaning, can we find it on any official medical website, so that I could show it to my doctor, to make him realize this is real?

 

[Strawberry]

@hapl808 Can you have normal oxygen in the blood but not in tissues? Can this be tested?

 

[iliketoread]

Same here. I wonder if it has to do a) hypoxia of b) glutamate

I think hypoxia is involved bc all of my headache problems and face pain were triggered by moving to a high altitude location. The high altitude also brought on most of the other symptoms I'm still dealing with. I constantly felt oxygen deprived, I don't know how to prove that I was oxygen deprived I just know that's what it felt like. Going up to higher altitudes would immediately bring on all of the symptoms and severe brain fog, disorientation and swelling of hands. But my oxygen levels always read as normal. The longer I lived at high altitude the worse it all got.

 

[Hip]

Do I understand correctly that this means that fatiguability is only present during PEM?

The ICC and CCC define muscle fatiguability and cognitive fatiguability as one of the cluster of symptoms that are labelled PEM/PENE.

I don't think you have to be having a full PEM episode to experience muscle fatiguability though. I notice muscle fatiguability appearing within minutes of doing repetitive work with the same muscles. Like sawing a bit of wood. My arm muscles turn to jelly within minutes.

 

[Pyrrhus]

I remember there was an extra "exclusionary" remark in the complete ICC booklet that if symptoms can be explained by known diagnoses, ME cannot be diagnosed.

No, the ICC is not an exclusionary set of diagnostic criteria, like the earlier CFS criteria were. You can satisfy the ICC and also have MCAS, POTS, SFN, and any other comorbid condition, with exceptions only for psychiatric disorders and substance use:

Exclusions: As in all diagnoses, exclusion of alternate explanatory diagnoses is achieved by the patient’s history, physical examination, and laboratory/biomarker testing as indicated. It is possible to have more than one disease but it is important that each one is identified and treated. Primary psychiatric disorders, somatoform disorder and substance abuse are excluded. Paediatric:‘primary’ school phobia.

 

[Rufous McKinney]

The more sick I feel, the more I feel the need to rest and at least lie down bc of insufficient energy.

something about right before that state, we can feel incredibly agitated from the poisoned feelings.....

its incredibly hard to- sort of just STOP this wired like state of feeling POISONED by chemicals going drip drip drip.

But I can do it when I lie down and sort of force myself to unwind.....I definately think we can add ammonia to the list of poisons.

 

[Rufous McKinney]

no one seems to have any clue what I'm talking about. It varies in intensity, and is something like feeling poisoned and toxic severely unwell.

you mean other people? Not here at PR?

My daughter never can understand it- working out makes her feel really good, her muscles aching and tired she describes as feeling really great.

We do not share these same feelings. Its entirely different, here.

 

[YippeeKi YOW !!]

I wonder if that is a flaw in these criteria.

Just etymologically, it's a serious, serious flaw.

Chronic Fatigue Syndrome without .... fatigue?

I smell a rat. Or more precisely, a rat's bolt-hole, something that keeps the insurance companies happy and the hospital's registers ringing in an enticingly enriching new way.

To redefine ME/CFS without including the, til now, requisite fatigue is just ..... bizarre ...

I'm going to have to come back and read this thread when I'm doing a little better. Right now my right neck gland is swollen and sore, I'm running on fumes and flat out of anything resembling energy, movement is difficult, sound a light are more irritating than usual, and I'm wondering WTF?

 

[BrightCandle]

Same here. I wonder if it has to do a) hypoxia of b) glutamate

Well what I now know is that Sodium Benzoate and Sudafed clear it within a few days. Given the way both seem to work in the body that suggests its Nitrogen in the form of Ammonia that causes the headaches.