Poll: Do you have Myalgic Encephalomyelitis (ICC)

[Rufous McKinney]

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?

ditto, WTF-2

putting magnets on again, and gosh my Non Aleve experiment is tempting for today- take another pain killer.

 

[Wishful]

I wonder whether much of the 'fatigue' in PWME could be the result of neural dysfunction. Whether it's part of sickness behaviour or not, dysfunction among brain cells could be sending us a 'rest now to conserve resources to fight a problem' message that we interpret as something like fatigue. That needn't be an actual viral infection; it could be dysfunction among immune cells that other cells interpret as a sign of infection. The changes in neural function could alter hormone levels that do cause some changes in muscle tissue or blood flow that results in some clinical measures of fatigue found in some patients. We're obviously not all suffering from reduced ATP production or excess lactic acid or whatever; neural dysfunction seems a reasonable alternative.

 

[YippeeKi YOW !!]

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.

Ever since joining PR, I've been alerted to how many of us have sensitivities and reactions that seem to lead back to glutamate difficulties, either in processing it or tolerating it or converting glutamic acid to GABA rather than glutamate, or maintaining a healthy balance between those two critical neurotransmitters.

Mine has gotten somewhat better, but I still have to watch what I eat carefully. I'm talking about simple, natural things like peas and tomatoes, aged cheeses like really good parmesan and others in that family, mushrooms, and on and on, not just great treats like a cheesy garlic pizza or anything packaged, which left my diet several years ago due to then-inexplicable reactivities.

There's some connection, but whatever it is has easily eluded my 3 functioning brain cells ....

 

[BrightCandle]

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.
....

I don't think my muscles are actually weak. I can lift more than I ever did before, I am clearly stronger after doing my resistance training last year and before. But I lack control of those muscles the worse I am. One way I can tell this and see the jitter in my nervous system is by trying to hold my thumb and forefinger apart just a millimeter and critically remove the brace of your second finger which you will naturally tend towards as a compensation. The ability to maintain that gap seems to correlate with my condition and my sense of strength. That is nervous system, its a feeling of weakness not an actual weakness I think.

 

[Rufous McKinney]

I don't think my muscles are actually weak.

I recall during an acute worsening, I had to help my husband at the laundromat.

I was in such poor ME condition in this prolonged crash, that I couldn't avoid a man who can around the corner of the building. He walked right into me. He cursed me out...I'm a sick old lady and this young man swears at me or something, because despite my brain instructing- shift body, my body could not react in any way.

I was not processing the visuals outside the car window that day, either. Felt drunk.

I recall I could not lift the towel- my hand was holding a bath towel, but I could not lift it.

All that was hugely neurological.

 

[YippeeKi YOW !!]

I'm a sick old lady and this young man swears at me or something, because despite my brain instructing- shift body, my body could not react in any way.

OK, here's the answer for that, and its been a long time coming.

Well, actually it's still coming but hope springs eternal ....

A small hand-held device, like a very small remote with several settings, say, that you could point at @sswad younger guys or anyone else who hasn't learned either courtesy or another really important lesson yet: "IT'S NOT ALL ABOUT YOU !!!!"

So, you can hit any button you want on the remote, probably the most fulfilling would be the "5 Minutes, Serious Spasticity" or possibly "Complete Loss of All Motor Control -- Yes, ALL Motor Control", and then just step back and enjoy the show. You might want to put out a small hat or something to collect contributions from well-meaning, sensitive passers-by, saddened by the spectacle and wanting to help ....

Maybe take some video and send it to his phone. Or better, his wife's/g'friends/bosses phone ....

 

[Martin aka paused||M.E.]

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.

Possible yes. But didn't work for me sadly

 

[wabi-sabi]

Can you have normal oxygen in the blood but not in tissues?

For sure. This is what some of Dr. Systrom's work shows is our problem.

 

[Martin aka paused||M.E.]

maintaining a healthy balance between those two critical neurotransmitters

This!

I can lift more than I ever did before, I am clearly stronger after doing my resistance training last year and before.

Ok that's stunning. I was a bodybuilder. Now I have trouble lifting a cup of coffee

 

[YippeeKi YOW !!]

Now I have trouble lifting a cup of coffee

The only thing that I lift with speed and enthusiasm is my first cup of very weak coffee with a little chocolate and cinnamon first thing in the AM, and I swear, it's the only reason I can sometmes haul myself up out of bed ....

I was a bodybuilder. Now I have trouble lifting a cup of coffee

Among other casual exertions that I thought nothing of at the time, I was an aggressive street skater, and roller-blading kept me sane, toned, and aerobically worked.

Now getting down to the kitchen for the aforementioned coffee is a real reach. But at the end of it is The Coffee . So I manage.

I survive by simply not letting myself really dwell on all that I was and now, am not. I've done it the other way and it was not a fun time .... and it's not that Ive accepted it and resigned myself, it's more like letting it roll its way around me like a kind of bitchy, unwelcome river, while I plot another course of action ....

The days when I'm too wiped and weak to stick to that are NOT happy ones, but they happen ....

 

[hapl808]

I survive by simply not letting myself really dwell on all that I was and now, am not.

Same.

 

[5vforest]

Same here re: muscle strength.

some of it is deconditioning but it goes much further than that.

Something as simple as making a fist can be difficult for me

 

[Inara]

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

Why does that make sense?

 

[Pyrrhus]

Why does that make sense?

Remember that POTS, SFN, and MCAS are common symptoms of ME, and can all be related to the autonomic nervous system.

 

[wabi-sabi]

Why does that make sense?

Because there's no happy law that says a person can only have one disease at a time.

You can satisfy ICC showing you have ME/CFS and have MCAS (and satisfy whatever MCAS criteria are). There are other diseases and conditions that commonly travel with ME/CFS. Just like people with type 2 diabetes often have high blood pressure too, but a high BP isn't diagnostic criteria for diabetes, just because they go together like peanut butter and chocolate. A good clinician will look for both since they travel together, but won't confuse one for the other.

That's why it's important to conceptualize what a diagnostic criteria is doing AND what it's not doing. The point of the ICC is to identify ME/CFS, not MCAS. So it doesn't.

 

[wabi-sabi]

Why does that make sense?

Or think of it metaphorically like this.

Let's say you are searching for your friend Joe (ME/CFS). You give a bloodhound (ICC criteria) Joe's shoes and the bloodhound shows you where Joe is. Then you say, why didn't the bloodhound find Joe's friend Tom (MCAS) too? They spend a lot of time together. Well, you didn't give the bloodhound Tom's shoes (MCAS criteria). And you don't know of Tom and Joe are together right now until you actually look (Check the patient for both ME/CFS and comorbidities).

 

[Inara]

Remember that POTS, SFN, and MCAS are common symptoms of ME, and can all be related to the autonomic nervous system.

Sure, but there exist many, many diagnoses. Also, I think there exist several other diagnoses that can look like ME, even ICC-ME or CCC-ME.

Also, I personally think it's questionable to define POTS, SFN or MCAS as "symptoms" of ME. All of those are diseases of themselves, and can be severe.

 

[wabi-sabi]

Also, I personally think it's questionable to define POTS, SFN or MCAS as "symptoms" of ME. All of those are diseases of themselves, and can be severe.

You're right. It's very problematic.

Going to be controversial here- if the ICC says that MCAS or SFN are symptoms of ME/CFS, then it's wrong. The research to demonstrate this hasn't been done yet. That's one reason I don't really like the ICC. In an effort to be comprehensive, it's mixed in other things that often go with ME/CFS but aren't.

I'm happy to hear opposing views on this.

 

[Pyrrhus]

Also, I personally think it's questionable to define POTS, SFN or MCAS as "symptoms" of ME. All of those are diseases of themselves, and can be severe.

Headache is a symptom of ME.
But headache is also a symptom of many other diagnoses.
And you can have a diagnosis of headache, without other diagnoses.

SFN is a symptom of ME.
But SFN is also a symptom of diabetes.
And you can have a diagnosis of SFN, without other diagnoses.

Diagnoses overlap. That is just an annoying fact of life.
We all wish medicine were black and white, and one day it might be, but the unfortunate reality is that we currently have to deal with a lot of grey.

if the ICC says that MCAS or SFN are symptoms of ME/CFS, then it's wrong. The research to demonstrate this hasn't been done yet.

The ICC doesn't say this. Recent research have suggested this.
If the current research happens to be borne out, then a future set of diagnostic criteria might mention it .

 

[wabi-sabi]

Headache is a symptom of ME.
But headache is also a symptom of many other diagnoses.
And you can have a diagnosis of headache, without other diagnoses.

And to get even more meta, what do we consider symptoms vs diseases or conditions in themselves? I think headaches might qualify in both these areas.